Sadly, my mom passed away on Dec. 2nd early in the morning. Earlier this same week I started to crash/relapse really badly so while I spent a lot of time with her at the palliative floor, I missed seeing her on Tuesday (but we did talk twice on the phone). It is a very very sad time for me. Also very difficult because we need to find a good place for my dad to live as he can't cope alone anymore and I am not willing to move in with him for many reasons, health being one of them.
However, while I don't want to write tons of personal struggles and details here, I will say, mixed in with this horrible sad emptiness because I just lost my mom, is gratefulness that I had this time with her. Being around these last months of her life, caring for her, spending time with her, telling her I loved her every day, doing lots and lots for her (mostly little things)…it was a really good thing to do. I don't mean "good" as in I'm a good person, more that it was so nice to be there for her, care for her, spend that time together. I can't see ever regretting it.
For those who haven't done it, it takes a huge amount of toughness/courage to be by someone as they are dying. Watching and helping my mom when she was in delirium, confused, helping her with bathroom stuff (while blacking out with my own POTS symptoms), while all hard, I don't regret it. My long winded point is while I wasn't able to care for her these last 5 weeks at her home as she would have wanted, I was still able to spend lots of time with her and give her care and company in the hospital too. If you ever have the chance to "be there" for a loved one who is dying, based on my experience (which was excruciating while ill) I still recommend it.
Sunday, December 6, 2015
Tuesday, October 27, 2015
Another Hiatus
I'm guessing that after I fly back to deal with my parents tomorrow, I will be on hiatus again. In the two months I was down there, I stayed in touch with my life very little. One friend did call and talk for a while, which was huge. I hope I don't slip into a vortex again. I feel as if I wasn't even a person while I was there…give care, rest, give care, rest, answer questions, give care etc.
On the very very positive, I managed to do a lot while I've been home, not to mention, I still haven't relapsed!! That being said, I've felt pretty darn ill the last two days and last night I almost cried thinking about having to fly/travel Wednesday let alone all the issues that await me.
Two days after I left, things fell apart and my mom was moved to a hospice ward (and much of that was organized through me via phone). My mom is still on the hospice ward and I expect she'll have to stay there for at least a couple weeks even though she really wants to come home. While two months of being the main care giver didn't relapse me, I just don't think I can be her full time nurse, deal with my dad, all while ill myself. On the other hand, I want her to die at home if possible, but if that means 90% of the care falls to me, I just don't think I can do it.
Also weighing on my mind, I came home to a sewer that was supposedly fixed, only to find all the same issues. It turns out that the storm sewer, not the actual sewer was repaired!!! So the open pit of backed-up sewage was still full in the basement, the house smelt as foul as ever, and fruit flies and bugs were emerging from the drains. Sigh. So frustrating.
Last night my plumber friend and his assistant came and broke up the cement in the basement (again) and started digging down in an attempt to find the real sewer. He was able to pull a fist size wad of roots out of the sewer in his 4th attempt to auger it, but there is definitely something solid blocking it, as all 3 people who've tried to snake it have discovered.
Anyways, wish me luck whatever the next couple months entail. I hope you are all doing AWAP.
On the very very positive, I managed to do a lot while I've been home, not to mention, I still haven't relapsed!! That being said, I've felt pretty darn ill the last two days and last night I almost cried thinking about having to fly/travel Wednesday let alone all the issues that await me.
Two days after I left, things fell apart and my mom was moved to a hospice ward (and much of that was organized through me via phone). My mom is still on the hospice ward and I expect she'll have to stay there for at least a couple weeks even though she really wants to come home. While two months of being the main care giver didn't relapse me, I just don't think I can be her full time nurse, deal with my dad, all while ill myself. On the other hand, I want her to die at home if possible, but if that means 90% of the care falls to me, I just don't think I can do it.
Also weighing on my mind, I came home to a sewer that was supposedly fixed, only to find all the same issues. It turns out that the storm sewer, not the actual sewer was repaired!!! So the open pit of backed-up sewage was still full in the basement, the house smelt as foul as ever, and fruit flies and bugs were emerging from the drains. Sigh. So frustrating.
Last night my plumber friend and his assistant came and broke up the cement in the basement (again) and started digging down in an attempt to find the real sewer. He was able to pull a fist size wad of roots out of the sewer in his 4th attempt to auger it, but there is definitely something solid blocking it, as all 3 people who've tried to snake it have discovered.
Anyways, wish me luck whatever the next couple months entail. I hope you are all doing AWAP.
Friday, October 16, 2015
Home is Beautiful!
As I flew over Lake Superior into Thunder Bay the sun was shining, reflecting off the deep blue water and the small white caps below. We flew over Isle Royale, Sleeping Giant Peninsula, then Pie Island. The leaves were at peak, gold aspens in contrast to the grey rock, dark firs, spruce, and pines. I teared up looking out the window. I felt a surge of happiness and relief. "I'm coming home" I thought. What an amazing place I live, what a beautiful place.
For two months I've been living in a bubble, caring for my mom, and on some level, my dad. Resting, caring, resting, caring. It's like there's been a heavy dark cloud casting a shadow over me. Worry, concern, worry…. frustration, sadness, guilt and more guilt, anger.
It feels like more than two months since I've been home, almost like I lived here in another lifetime. But for two days now I've felt such relief. Relief to be home, relief not to have to constantly check on my mom, do things, organize things, administer drugs, answer questions and explain things. I grew up in my parents house, and there is a familiarity there for sure, but this feels more like home. I've been here a decade and have spent 20 years of my 25 adult years up in this area (northern Minnesota and/or northwestern Ontario).
With all the stress I was under the last two months, I was eating poorly. Drinking more coffee, eating more breads and sweets and junk. Sometimes putting food in my mouth and realizing "I'm not hungry, just stressed". I stepped on the scale yesterday prepared for a 10lb gain. I was shocked. I stepped on and off the scale two more times just to make sure that I really have lost almost 10 pounds!! How is this even possible given my eating habits lately? I guess stress and perhaps the extra activity have done something strange to my body/metabolism, that's all I can figure. I'm still a "healthy" weight so I won't worry too much unless more drops off for no reason.
As for guilt, it is hard to shirk. I feel guilty that I came home for a break especially since I hadn't yet relapsed. I know this is irrational (relapse is very possible and would mean I couldn't care/help my parents at all). I know it is very smart of me to rest for a while, let my body recover, build up some reserves for what inevitably lies ahead (my mom needing more care, passing, my dad needing to find a home with some support, a house that needs to be sold).
In the mean time, I will rest up and try to do a few things here, things that remind me that despite being a single, disabled woman, that I still have a life that's my own, that I can still do things that bring me joy and/or fulfilment.
For two months I've been living in a bubble, caring for my mom, and on some level, my dad. Resting, caring, resting, caring. It's like there's been a heavy dark cloud casting a shadow over me. Worry, concern, worry…. frustration, sadness, guilt and more guilt, anger.
It feels like more than two months since I've been home, almost like I lived here in another lifetime. But for two days now I've felt such relief. Relief to be home, relief not to have to constantly check on my mom, do things, organize things, administer drugs, answer questions and explain things. I grew up in my parents house, and there is a familiarity there for sure, but this feels more like home. I've been here a decade and have spent 20 years of my 25 adult years up in this area (northern Minnesota and/or northwestern Ontario).
With all the stress I was under the last two months, I was eating poorly. Drinking more coffee, eating more breads and sweets and junk. Sometimes putting food in my mouth and realizing "I'm not hungry, just stressed". I stepped on the scale yesterday prepared for a 10lb gain. I was shocked. I stepped on and off the scale two more times just to make sure that I really have lost almost 10 pounds!! How is this even possible given my eating habits lately? I guess stress and perhaps the extra activity have done something strange to my body/metabolism, that's all I can figure. I'm still a "healthy" weight so I won't worry too much unless more drops off for no reason.
As for guilt, it is hard to shirk. I feel guilty that I came home for a break especially since I hadn't yet relapsed. I know this is irrational (relapse is very possible and would mean I couldn't care/help my parents at all). I know it is very smart of me to rest for a while, let my body recover, build up some reserves for what inevitably lies ahead (my mom needing more care, passing, my dad needing to find a home with some support, a house that needs to be sold).
In the mean time, I will rest up and try to do a few things here, things that remind me that despite being a single, disabled woman, that I still have a life that's my own, that I can still do things that bring me joy and/or fulfilment.
Monday, October 12, 2015
Quick update
Hello friends and/or fellow PWMEs
I thought I'd give you a quick update.
I am still at my parent's home almost 2 months after coming down on short notice when my mother went into the hospital. Luckly, my friend/roommate's parents also live in the same community so when she came down for a visit, she brought me a few things. After 6 weeks using the same pajama bottoms, for example, it was nice to have another option.
On the positive, I have had some offers of help, clothes to borrow, food and meals from people around here know my folks, that has been so wonderful. Someone even sent me a box of books to read!
I also set up services from the get go to help with home care. Twice a week someone comes in to help my mom with bathing, and a nurse comes in 3 times a week.
However, the bulk of the care since she has come home has fallen to me. It doesn't matter how sick I am on a given day or hour, it has been a lot. Because she is so ill, and my dad has mild dementia, I don't think they realize the many many little things I do each day to keep this ship afloat.
It's a miricle I haven't relapsed. Still, I had one day where I was in bed with a crash most the day and a fever, weak and shakey. I came upstairs to get water at one point and was hit with 6 or more demands/requests. Or yesterday when the POTS was so bad I was blacking out standing, it made no difference to my mom needing fresh coffee. With all the issues in my family (I have two sibblings with mental illness), that fact that I am sick has always been trumped by someone or something else and the trend continues.
Not to mention the people around here who have told me outright that there is no reason for me not to sell my house and move back here and take care of my parents, because hey, the life of a disabled woman without a husband and kids has no value.
Anyways, the day to day, moment to moment is pretty hard to the point I don't think I can write about it.
This week I have booked a two week break to go home. I set up extra stuff/services for when I'm gone, but I'm almost sure that something will happen and things will fall apart here. At least once a day my mom is addled (by drugs and or illness) enough that she forgets to eat, has no idea what time of day it is, if not monitored, overdoses on medications, etc. etc.
I feel quite guilty leaving, however, on the other hand, I realized after five or six weeks of telling EVERYONE that this was more than I could handle without a break, that I wouldn't get a break unless I actually left. For example, some days my father litterally follows me around. If I come downstairs to rest, he comes down and sits staring into space in the room next to me. If I go outside to sit in a chair, he follows, if I come back into the living room he follows, get the idea???
I thought I'd give you a quick update.
I am still at my parent's home almost 2 months after coming down on short notice when my mother went into the hospital. Luckly, my friend/roommate's parents also live in the same community so when she came down for a visit, she brought me a few things. After 6 weeks using the same pajama bottoms, for example, it was nice to have another option.
On the positive, I have had some offers of help, clothes to borrow, food and meals from people around here know my folks, that has been so wonderful. Someone even sent me a box of books to read!
I also set up services from the get go to help with home care. Twice a week someone comes in to help my mom with bathing, and a nurse comes in 3 times a week.
However, the bulk of the care since she has come home has fallen to me. It doesn't matter how sick I am on a given day or hour, it has been a lot. Because she is so ill, and my dad has mild dementia, I don't think they realize the many many little things I do each day to keep this ship afloat.
It's a miricle I haven't relapsed. Still, I had one day where I was in bed with a crash most the day and a fever, weak and shakey. I came upstairs to get water at one point and was hit with 6 or more demands/requests. Or yesterday when the POTS was so bad I was blacking out standing, it made no difference to my mom needing fresh coffee. With all the issues in my family (I have two sibblings with mental illness), that fact that I am sick has always been trumped by someone or something else and the trend continues.
Not to mention the people around here who have told me outright that there is no reason for me not to sell my house and move back here and take care of my parents, because hey, the life of a disabled woman without a husband and kids has no value.
Anyways, the day to day, moment to moment is pretty hard to the point I don't think I can write about it.
This week I have booked a two week break to go home. I set up extra stuff/services for when I'm gone, but I'm almost sure that something will happen and things will fall apart here. At least once a day my mom is addled (by drugs and or illness) enough that she forgets to eat, has no idea what time of day it is, if not monitored, overdoses on medications, etc. etc.
I feel quite guilty leaving, however, on the other hand, I realized after five or six weeks of telling EVERYONE that this was more than I could handle without a break, that I wouldn't get a break unless I actually left. For example, some days my father litterally follows me around. If I come downstairs to rest, he comes down and sits staring into space in the room next to me. If I go outside to sit in a chair, he follows, if I come back into the living room he follows, get the idea???
Sunday, August 30, 2015
Hard Times
My mother went into the hospital about ten days ago.
I had to travel south to come help my parents as they have very few people to rely on. Doing this while sick is so difficult that at present, I am doing very little more than trying to get through each moment. I'm sure at some point I might write about it, but am not ready yet.
My mother is out of the hospital after 8 days (she had double pneumonia), but the prognosis is not good. While we are getting various services in to help (palliative care, meals on wheels, and some home care), there is a certain amount of care that is falling to me, which is ironic, in that I am sick enough that I need a certain amount of care myself at home. Not to mention my dad's memory and confusion problems need monitoring.
My mother is in end-stage COPD, however, this could mean a couple months or maybe even a year. Once she got home and the palliative Dr. visited her here, she was a little more optimistic about life expectancy (she told me in the hospital she suspected a couple months). However, it is still palliative (or end-of-life) care from here on out.
Throughout her time in the hospital, and setting up for her to come home, I was the one that everything was co-ordinated through. There were moments I wished I were the one who was dying, I felt too ill to go on.
I guess on the positive, I've been able to leave the stinky sewer house behind (yes the sewer is still blocked, I have very little faith anything will change in that regard despite the fact that someone is technically "working" on it).
I very much miss my dog as well, although have not managed to find a way to get her down here. None of the airlines will fly her cargo. So that's my update, but don't expect anything else for a long while.
I had to travel south to come help my parents as they have very few people to rely on. Doing this while sick is so difficult that at present, I am doing very little more than trying to get through each moment. I'm sure at some point I might write about it, but am not ready yet.
My mother is out of the hospital after 8 days (she had double pneumonia), but the prognosis is not good. While we are getting various services in to help (palliative care, meals on wheels, and some home care), there is a certain amount of care that is falling to me, which is ironic, in that I am sick enough that I need a certain amount of care myself at home. Not to mention my dad's memory and confusion problems need monitoring.
My mother is in end-stage COPD, however, this could mean a couple months or maybe even a year. Once she got home and the palliative Dr. visited her here, she was a little more optimistic about life expectancy (she told me in the hospital she suspected a couple months). However, it is still palliative (or end-of-life) care from here on out.
Throughout her time in the hospital, and setting up for her to come home, I was the one that everything was co-ordinated through. There were moments I wished I were the one who was dying, I felt too ill to go on.
I guess on the positive, I've been able to leave the stinky sewer house behind (yes the sewer is still blocked, I have very little faith anything will change in that regard despite the fact that someone is technically "working" on it).
I very much miss my dog as well, although have not managed to find a way to get her down here. None of the airlines will fly her cargo. So that's my update, but don't expect anything else for a long while.
Tuesday, August 18, 2015
Crashed beyond belief.
First, let me say I am writing this post at my sickest time of day (mid afternoon) having done more this past weekend than I have in ages. I'm not going to go into major details, but it involved outings on both Friday night and Sunday morning. While I had rides for both, and the "active" part in total amounted to less than 2 min, for someone with moderate M.E., and moderate POTS, two, four-hour outings in three days is an awful lot.
So two days later I'm in a super crash/relapse. I feel extremely ill, as if every cell in my body has been poisoned. It hurts so much to breathe, my leg muscles are super weak, my throat and lymph nodes achy and sore….and I'm light headed. I feel so sick, that it's hard to believe that I'm not dead or at the very least, dying. In fact, I'm almost praying for it, so this will end. And it's my own fault for over-doing it to participate in something I really wanted to do. And I regret it now….but hopefully won't regret it a month from now, that's the hope.
Five weeks into the sewer saga and the sewer is still blocked. Half the front yard is excavated and there is more to come. They have yet to actually find the sewer (due to a company who came in and mis-located it but refuses to come back and redo the locate), and I have absolutely nothing left energy-wise to take any kind of initiative. In fact, I think when I'm well enough to travel, I'm going to go stay with a friend. Without properly working plumbing, (along with five days and counting with an upset stomach), things are getting pretty awful.
I do think we will eventually have plumbing again, it's just turning out to be a pretty major ordeal, especially when an ill person is managing/coordinating the repairs.
So two days later I'm in a super crash/relapse. I feel extremely ill, as if every cell in my body has been poisoned. It hurts so much to breathe, my leg muscles are super weak, my throat and lymph nodes achy and sore….and I'm light headed. I feel so sick, that it's hard to believe that I'm not dead or at the very least, dying. In fact, I'm almost praying for it, so this will end. And it's my own fault for over-doing it to participate in something I really wanted to do. And I regret it now….but hopefully won't regret it a month from now, that's the hope.
Five weeks into the sewer saga and the sewer is still blocked. Half the front yard is excavated and there is more to come. They have yet to actually find the sewer (due to a company who came in and mis-located it but refuses to come back and redo the locate), and I have absolutely nothing left energy-wise to take any kind of initiative. In fact, I think when I'm well enough to travel, I'm going to go stay with a friend. Without properly working plumbing, (along with five days and counting with an upset stomach), things are getting pretty awful.
I do think we will eventually have plumbing again, it's just turning out to be a pretty major ordeal, especially when an ill person is managing/coordinating the repairs.
Friday, July 31, 2015
Sewer Saga
Stress isn't good for anyone, but it can be damaging when you have a chronic illness.
Over two weeks now and NO closer to having an un-blocked sewer. I've had so many opinions (contradictory) and people working on this thing that my head's spinning. All I want is a different house, and/or for someone else to have to deal with it.
Also, I'm suffering insomnia which I'm not sure is related (I think it is hormonal), but I do know that while I'm lying awake (this morning since 4 a.m.) the sewer saga definitely comes into my head and causes me stress.
On a happier note I took some photo's of my garden I'll post.
Over two weeks now and NO closer to having an un-blocked sewer. I've had so many opinions (contradictory) and people working on this thing that my head's spinning. All I want is a different house, and/or for someone else to have to deal with it.
Also, I'm suffering insomnia which I'm not sure is related (I think it is hormonal), but I do know that while I'm lying awake (this morning since 4 a.m.) the sewer saga definitely comes into my head and causes me stress.
On a happier note I took some photo's of my garden I'll post.
Monday, July 20, 2015
When it rains, it pours….
Well, the blocked sewer actually broke a mechanical industrial grade snake!! While there are no trees on my property, the sewer is blocked solidly by roots, and may even be collapsed.
Then, I had someone with a "locator" come in to find where exactly the blockage is, and it's (thankfully) outside the house. Now the front has to be excavated - worst case scenario, all the way to the road.
Meanwhile, this house often smells like a nasty garbage pile, especially on wet days, I've nick-named it "the outhouse".
Question: Does someone who's disabled by M.E. have the energy/health to even deal with plumbers and workers (leg work), let alone the money while on social assistance to pay for these types of issues?
Answer: Absolutely not.
I guess I am "dealing" with them, but not without consequences.
I'm so shaky right now just having had to chat with a very nice (also good looking) plumber for 10 minutes, as well as walk up and down the stairs 2X!!!
I really wish right now that:
a) I had a house that wasn't an old fixer upper, and was small enough that I felt I could manage it.
b) Someone who understood how ill I was, and could be the go-to person to deal with these repairs and the people who are going to make them. (Someone without a life I guess, because they'd have to be around). What I really need is a fairy god mother of sorts.
At least I do have some back-up financial help if I need it, although it always feels like begging. I'm so sick of being a needy, begging, lay-about. I SO want my healthy life back, one where I had a sense of independence and ability. And I want some kind of possibility to create income for myself. Sometimes I find ways to accept my life as is, and make the best of it, other times, it is very hard not to wish for my healthy, disease-free body back.
Oh and to make things even more fun, after having my car back two days, I got into it on Friday to go to the corner store and it wouldn't START!!!! We are up to four times in the shop since spring, and 3 in the last few weeks, jeez!
On the plus side, at least I have the nicest garage in the city.
The other plus, is the plumber that's helping me out, is a friend of my roommate's boss, and super nice, willing to do what he can to make economical fixes/repairs.
I keep telling myself, "One day at a time, cope/manage with just this next hour".
Who's interested in the day to day struggles of one chronically ill woman? I guess it's just nice to have a place to write them down.
Then, I had someone with a "locator" come in to find where exactly the blockage is, and it's (thankfully) outside the house. Now the front has to be excavated - worst case scenario, all the way to the road.
Meanwhile, this house often smells like a nasty garbage pile, especially on wet days, I've nick-named it "the outhouse".
Question: Does someone who's disabled by M.E. have the energy/health to even deal with plumbers and workers (leg work), let alone the money while on social assistance to pay for these types of issues?
Answer: Absolutely not.
I guess I am "dealing" with them, but not without consequences.
I'm so shaky right now just having had to chat with a very nice (also good looking) plumber for 10 minutes, as well as walk up and down the stairs 2X!!!
I really wish right now that:
a) I had a house that wasn't an old fixer upper, and was small enough that I felt I could manage it.
b) Someone who understood how ill I was, and could be the go-to person to deal with these repairs and the people who are going to make them. (Someone without a life I guess, because they'd have to be around). What I really need is a fairy god mother of sorts.
At least I do have some back-up financial help if I need it, although it always feels like begging. I'm so sick of being a needy, begging, lay-about. I SO want my healthy life back, one where I had a sense of independence and ability. And I want some kind of possibility to create income for myself. Sometimes I find ways to accept my life as is, and make the best of it, other times, it is very hard not to wish for my healthy, disease-free body back.
Oh and to make things even more fun, after having my car back two days, I got into it on Friday to go to the corner store and it wouldn't START!!!! We are up to four times in the shop since spring, and 3 in the last few weeks, jeez!
On the plus side, at least I have the nicest garage in the city.
The other plus, is the plumber that's helping me out, is a friend of my roommate's boss, and super nice, willing to do what he can to make economical fixes/repairs.
I keep telling myself, "One day at a time, cope/manage with just this next hour".
Who's interested in the day to day struggles of one chronically ill woman? I guess it's just nice to have a place to write them down.
Wednesday, July 15, 2015
Everything at once...
"When it rains, it pours"
Well I guess it's all a matter of perspective, meaning it could be a whole lot worse, I realise. But lately, it seems like everything is NOT coming up roses for me:
1. My car is in the shop for the 3rd time in a matter of a couple months. They were willing to patch the exhaust again, but they said not to bring it back next time, take it to a muffler shop. My car is 20 years old, and since I only do the occasional errand, I use it very little. But I have NO resources to replace it, so would like to keep it puttering along.
2. The plumbing in the house is having issues, which I can't afford. I have someone who's looked at the situation and will give me an estimate soon. But the long and short of it, is the house was plumbed in the 40's and there are some problems. Which lately amounts to a nasty nasty smell when it rains, which brings me to number 3:
3. I've been pretty badly crashed since Sunday, and at least one day of this included laying on the couch smelling skanky nastiness the whole day, with no option for escape (yes, all the windows were open), because I was too ill to go out, and it was raining. I kept a pot of cinnamon, cloves and allspice simmering all day to try to cover the smell - it didn't work. I keep meaning to set up my tent when I'm feeling a bit better, so if we have another stinky rain-day, I could at least go out and lay there. Hopefully this guy gives me a reasonable estimate so I can get this resolved soon…..still waiting.
4. I'm feeling sick of being poor and overwhelmed by the costs of living.
5. Did I mentioned I'm crashed? Today this includes a fever, body aches, hurts to breath like influenza, sore throat, and weakness (again).
On the positive, I now have a "rough" draft of my dissertation, however, I need to go back and re-write the first three chapters.
Nonetheless, feeling so poor and helpless had me online looking for job options, but despite my massive amounts of education, this stupid illness makes it so hard. Starting maybe around January, I'd like a part time job (approx 10 hours a week or less) that I can do mostly from home (and bed), and on a flexible schedule…loose deadlines, because I can't predict when I'll be flared. I didn't see a single job that would fit that, although I do think there is some online teaching or writing out there for me somewhere. Best, I guess to cross that bridge…..
P.S. since writing this I did set up my tent, which makes me feel better about the next rainy day, as I now have somewhere to escape to (reading a book in my tent will be a lot better than smelling nasty grossness all day), it will be like camping :) .
Well I guess it's all a matter of perspective, meaning it could be a whole lot worse, I realise. But lately, it seems like everything is NOT coming up roses for me:
1. My car is in the shop for the 3rd time in a matter of a couple months. They were willing to patch the exhaust again, but they said not to bring it back next time, take it to a muffler shop. My car is 20 years old, and since I only do the occasional errand, I use it very little. But I have NO resources to replace it, so would like to keep it puttering along.
2. The plumbing in the house is having issues, which I can't afford. I have someone who's looked at the situation and will give me an estimate soon. But the long and short of it, is the house was plumbed in the 40's and there are some problems. Which lately amounts to a nasty nasty smell when it rains, which brings me to number 3:
3. I've been pretty badly crashed since Sunday, and at least one day of this included laying on the couch smelling skanky nastiness the whole day, with no option for escape (yes, all the windows were open), because I was too ill to go out, and it was raining. I kept a pot of cinnamon, cloves and allspice simmering all day to try to cover the smell - it didn't work. I keep meaning to set up my tent when I'm feeling a bit better, so if we have another stinky rain-day, I could at least go out and lay there. Hopefully this guy gives me a reasonable estimate so I can get this resolved soon…..still waiting.
4. I'm feeling sick of being poor and overwhelmed by the costs of living.
5. Did I mentioned I'm crashed? Today this includes a fever, body aches, hurts to breath like influenza, sore throat, and weakness (again).
On the positive, I now have a "rough" draft of my dissertation, however, I need to go back and re-write the first three chapters.
Nonetheless, feeling so poor and helpless had me online looking for job options, but despite my massive amounts of education, this stupid illness makes it so hard. Starting maybe around January, I'd like a part time job (approx 10 hours a week or less) that I can do mostly from home (and bed), and on a flexible schedule…loose deadlines, because I can't predict when I'll be flared. I didn't see a single job that would fit that, although I do think there is some online teaching or writing out there for me somewhere. Best, I guess to cross that bridge…..
P.S. since writing this I did set up my tent, which makes me feel better about the next rainy day, as I now have somewhere to escape to (reading a book in my tent will be a lot better than smelling nasty grossness all day), it will be like camping :) .
Thursday, July 9, 2015
Breaking the cycle
After a week or more of doing well (except POTS), and despite having travelled, the M.E. flared. I am back to feeling quite ill and weak, no energy at all. Zilch. I got out of bed this morning and had a swooping black-out. The viral symptoms have increased (my sore throat kept me up much of the night), and I feel like every cell in my body has been poisoned, it hurts to breathe….and my mood, which has been so decent (I thought two months on St. John's Wort was making a difference) plummeted. It plummeted because I can't do much more than lay in bed. And while laying here, it's hard to distract myself from how sick I feel, how helpless. To wallow in self-pity.
And it only took a week of feeling decent for the internal dialogue to start: "I'm sure you could work at least part-time if you tried", "You exaggerate how sick you feel most the time.", "Most people would manage to do more despite having M.E.".
And of course, feeling a little better means I almost always push things and do more….I worked on some art, went to the dog yard, ran a couple errands, even went over to some friends house for a short visit. Now I wish I'd done none of it, stayed here in my little cocoon instead, avoided the crash. Now I have to live through this flare that will last how long? I have no idea.
On the other hand, I don't think I'll ever stop making the most of my few decent days, I just wish I could stop telling myself during them that I'm lazy or a lay-about, or somehow not doing the best I can. Or the internal dialogue that if I manage to do something like travel, it means I'm not disabled by illness. (And a decent day is relative, I don't mean I'm able to sit up all day or go for a walk or grocery shop, just an outing of an hour, or 4 hours sitting up a day, rather than one or two).
I should come here when I'm feeling decent, just to remind myself to use a modicum of caution as I enjoy the "better" moments/days (not as a downer). The reality is, when I'm feeling a bit better, I avoid anything to do with being sicker and more limited (including thinking about it), I try my best to put it out of my mind.
And it only took a week of feeling decent for the internal dialogue to start: "I'm sure you could work at least part-time if you tried", "You exaggerate how sick you feel most the time.", "Most people would manage to do more despite having M.E.".
And of course, feeling a little better means I almost always push things and do more….I worked on some art, went to the dog yard, ran a couple errands, even went over to some friends house for a short visit. Now I wish I'd done none of it, stayed here in my little cocoon instead, avoided the crash. Now I have to live through this flare that will last how long? I have no idea.
On the other hand, I don't think I'll ever stop making the most of my few decent days, I just wish I could stop telling myself during them that I'm lazy or a lay-about, or somehow not doing the best I can. Or the internal dialogue that if I manage to do something like travel, it means I'm not disabled by illness. (And a decent day is relative, I don't mean I'm able to sit up all day or go for a walk or grocery shop, just an outing of an hour, or 4 hours sitting up a day, rather than one or two).
I should come here when I'm feeling decent, just to remind myself to use a modicum of caution as I enjoy the "better" moments/days (not as a downer). The reality is, when I'm feeling a bit better, I avoid anything to do with being sicker and more limited (including thinking about it), I try my best to put it out of my mind.
Sunday, June 28, 2015
Quick Hello.
Hello to my readers.
I have returned home to the northland (north is relative) from visiting my parents, and am recovering from travel. I'm also without a car (it has no breaks) which is a good thing. It means I can't run out and do even a small errand, and therefore am forced to stay home, rest and recover.
I'm not having a terrible crash from my trip (yet). I'm not feeling great either, but nothing extreme. On the other hand, as often happens in the summer, the POTS is terrible. Just a quick walk out to the back garden had my heart rate at 165 and BP 99/70. I checked it when I came in the house as I had that 'desperate' feeling I get, like I just have to lay down (shaky, head pounding, light-headed).
My gardens are coming along, meaning I may get some veggies in late August and September, fingers crossed. Watching my plants grow is one of my favourite things about summer.
And I will (at some point) post a few of the photos I took at my parent's.
Here's a little photo and video of a rabbit at their place in the mean time.
I am making progress on my dissertation writing, it is slow going, I'm not happy with what I've written on the whole, but it's getting there nonetheless.
I have returned home to the northland (north is relative) from visiting my parents, and am recovering from travel. I'm also without a car (it has no breaks) which is a good thing. It means I can't run out and do even a small errand, and therefore am forced to stay home, rest and recover.
I'm not having a terrible crash from my trip (yet). I'm not feeling great either, but nothing extreme. On the other hand, as often happens in the summer, the POTS is terrible. Just a quick walk out to the back garden had my heart rate at 165 and BP 99/70. I checked it when I came in the house as I had that 'desperate' feeling I get, like I just have to lay down (shaky, head pounding, light-headed).
My gardens are coming along, meaning I may get some veggies in late August and September, fingers crossed. Watching my plants grow is one of my favourite things about summer.
And I will (at some point) post a few of the photos I took at my parent's.
Here's a little photo and video of a rabbit at their place in the mean time.
I am making progress on my dissertation writing, it is slow going, I'm not happy with what I've written on the whole, but it's getting there nonetheless.
Tuesday, June 16, 2015
Happy Sickaversary to M.E.
Well June 16th was the day I came down with a bad case of mononucleosis in 2002. While I was stressed out at the time (I had a lot on my plate) I wasn't physically ill until Sunday June 16th 2002. It wasn't like feeling "off", it was like being hit with a brick in the head. Fever, sore throat, dizzy, shaky, sweating. So it's my sickaversary. I've been ill every day now for more than a decade. I'm a completely different person due to suffering a disabling case of M.E. But it was so long ago now that I became sick, it's hard to remember that other life. I had no idea how lucky I was to be able to work, play, socialize, drive.
I've been visiting my folks who are getting quite old, and are in poor health. However, there's not too much I can do to help as I'm ill myself, and not up to outings. I brought the dog down which makes for a slightly more strenuous travel day, although having her here is wonderful. She provides me with company, entertainment, and emotional support. I'm SO glad I brought her.
I had a horrible flight down as the gentleman in the seat next to me took up a seat and a half he was so large, quite literally, he was using 1/2 of my seat. (The plane was completely full, so no chance of moving). I had to sit cross legged with my torso turned sideways for 2 1/2 hours. Our destination airport was shut down temporarily as well, so we had to sit on the tarmac in T-bay for a 1/2 hour before flying. My body cramped up so badly, that it took a while for me to walk after the flight, not to mention the severe tachycardia from POTS. However, after two pretty bad crash days, I was mostly back to normal, which is still sh$t, but not so ill that I was laying here all day just hoping I'd die.
My mom, despite being on oxygen for severe emphysema, has manged to crawl around dragging her oxygen tank and to some degree maintain her amazing gardens. I call this the "nature preserve" as my parents feed a variety of birds out front year-round as well as rabbits, chipmunks, and squirrels. Then add the manicured lawns and flower gardens! Maybe I'll take some photos to share.
I love how when you have a chronic illness that involves weakness/fatigue, people in your life seem to constantly tell you how tired they are. (I've heard this a lot this week). On the one hand, I don't mind lending an ear, I've really appreciated lately a few people who've shared their health challenges with me. I don't mind hearing about others' struggles with health or energy. On the other hand, when someone tells me they're exhausted as if to compare, in most cases I realize how clueless and in some sense, unappreciative of their health and abilities these people are. As well, how clueless they are about the type of weakness/fatigue from which I struggle. It's when they think they're commiserating that I get cheesed-off.
I watch these people run multiple errands, go to work, talk on the phone for an hour, eat out at a restaurant, drive, go for a run or walk, cook meals, bathe, all in the same day!!! etc. etc. I am amazed how oblivious they are about true disabling exhaustion. Lucky them. While I have no doubt they are "exhausted", really, I believe they are exhausted, I know for a fact that it isn't anything comparable to what I suffer. If it were, they'd be disabled…so weak from illness that they'd be un-able. Unable as in, even if they "have to" get something done, they wouldn't be able to…they'd be too utterly exhausted and weak despite good intentions or amazing motivation - hence dis-abled.
I've been visiting my folks who are getting quite old, and are in poor health. However, there's not too much I can do to help as I'm ill myself, and not up to outings. I brought the dog down which makes for a slightly more strenuous travel day, although having her here is wonderful. She provides me with company, entertainment, and emotional support. I'm SO glad I brought her.
I had a horrible flight down as the gentleman in the seat next to me took up a seat and a half he was so large, quite literally, he was using 1/2 of my seat. (The plane was completely full, so no chance of moving). I had to sit cross legged with my torso turned sideways for 2 1/2 hours. Our destination airport was shut down temporarily as well, so we had to sit on the tarmac in T-bay for a 1/2 hour before flying. My body cramped up so badly, that it took a while for me to walk after the flight, not to mention the severe tachycardia from POTS. However, after two pretty bad crash days, I was mostly back to normal, which is still sh$t, but not so ill that I was laying here all day just hoping I'd die.
My mom, despite being on oxygen for severe emphysema, has manged to crawl around dragging her oxygen tank and to some degree maintain her amazing gardens. I call this the "nature preserve" as my parents feed a variety of birds out front year-round as well as rabbits, chipmunks, and squirrels. Then add the manicured lawns and flower gardens! Maybe I'll take some photos to share.
I love how when you have a chronic illness that involves weakness/fatigue, people in your life seem to constantly tell you how tired they are. (I've heard this a lot this week). On the one hand, I don't mind lending an ear, I've really appreciated lately a few people who've shared their health challenges with me. I don't mind hearing about others' struggles with health or energy. On the other hand, when someone tells me they're exhausted as if to compare, in most cases I realize how clueless and in some sense, unappreciative of their health and abilities these people are. As well, how clueless they are about the type of weakness/fatigue from which I struggle. It's when they think they're commiserating that I get cheesed-off.
I watch these people run multiple errands, go to work, talk on the phone for an hour, eat out at a restaurant, drive, go for a run or walk, cook meals, bathe, all in the same day!!! etc. etc. I am amazed how oblivious they are about true disabling exhaustion. Lucky them. While I have no doubt they are "exhausted", really, I believe they are exhausted, I know for a fact that it isn't anything comparable to what I suffer. If it were, they'd be disabled…so weak from illness that they'd be un-able. Unable as in, even if they "have to" get something done, they wouldn't be able to…they'd be too utterly exhausted and weak despite good intentions or amazing motivation - hence dis-abled.
Thursday, June 4, 2015
Blossoms and Birthdays
I thought I'd post a few photos of some flowers that are in bloom around the yard. I love the neighbour's crab apple when it blooms each year (some of the branches are in my yard). In the front garden, the moss flox are in bloom.
This time of year I constantly over-do it putting in gardens, despite the fact that I have lots of help.
On the positive, as the temps warm up I get to spend more time outside, as I don't have to move to stay warm. I can just plop myself out there and enjoy the sun, the birds, the trees and flowers.
So far (we're only an hour or two in), I am less ill than I was on my Birthday last year. Last year I had a horrible crash that coincided with my Birthday and left me feeling really down. This year (so far) I'm not feeling as horrible. Small blessings.
Finally, the daughter of someone I know wrote a good article about M.E. One of the best "popular" media type of articles I've ever seen. It doesn't say, for example, that M.E. is about "being tired". It gives snapshots of how severe and devastating a disease it can be. The other thing I liked, was the perspectives that came out of her personal connection to the illness (her mother has it).
http://www.vice.com/en_uk/read/this-is-the-reality-of-living-with-me-162
My PhD writing has taken a dive this week as I had a really bad attack of "urinary tract infection" that kept me from sleeping. I put UTI in quotes, because it's all the symptoms of a UTI without being a UTI.
It coinsided with an appointment to my NP, and she sent in a culture and perscribed an antibiotic because the dip test was borderline. To be honest, I've had these attacks for years, usually during PMS, but they mostly just last a few hours.
This bout is still happening although it's calmed down. I'm almost sure I have cystitis, but since I don't want another syndrome like condition added to my chart, I've avoided talking about it to my NP.
Mostly, I've been able to cope, although if makes a habbit of keeping me from sleep, I might have to see what options are available. Does anyone who reads this have IC?
Sunday, May 24, 2015
Spring is here.
Spring often hits suddenly here. While last week it was cold and rainy (it even snowed a little) this week the grass is turning green, the tulips are out and the buds are starting to open on some of the trees. I took some photos of my front garden tulips.
My health/energy has been fairly decent overall. However, I woke up today feeling very leaden and achy. I know I've been pushing it just a little lately with outings (generally more than two short ones a week and I go down-hill healthwise).
While it's a fairly personal topic, I've also been attempting to treat my bouts of low moods with a course of St. John's Wort. It's been shown in some studies to be as good as an antidepressant in cases of mild or moderate depression. I've been taking it about three weeks, and if I make it through a certain time of month feeling more balanced, I'll know it's helping.
Today, however, I'm feeling pretty "down" just because I feel so ill and weak and heavy. I'm pretty sure if I could actually treat this disease/virus, that I would feel better emotionally, as quite often my low moods are connected to when the disease is worse.
My health/energy has been fairly decent overall. However, I woke up today feeling very leaden and achy. I know I've been pushing it just a little lately with outings (generally more than two short ones a week and I go down-hill healthwise).
While it's a fairly personal topic, I've also been attempting to treat my bouts of low moods with a course of St. John's Wort. It's been shown in some studies to be as good as an antidepressant in cases of mild or moderate depression. I've been taking it about three weeks, and if I make it through a certain time of month feeling more balanced, I'll know it's helping.
Today, however, I'm feeling pretty "down" just because I feel so ill and weak and heavy. I'm pretty sure if I could actually treat this disease/virus, that I would feel better emotionally, as quite often my low moods are connected to when the disease is worse.
Saturday, May 16, 2015
The witching hour….
Thanks to all who read my "what you can do" post in honour of M.E. awareness day May 12th. It was more about "what you can do" for people you know who are disabled by chronic illness. It was focused on the personal level, rather than "what you can do" for those with M.E. on a bigger scale.
Of course you could write to your representative to demand better funding for M.E., or bust myths when you hear people spouting ridiculous beliefs about those who are ill, or give money to good research that's going on. People have started fundraisers, or run races, raising money for M.E. Others have created awareness videos.
Moving on from awareness, I wanted to write about the "witching hour".
I consider myself to have a moderate version of M.E. People who have severe M.E. are bed-bound, too weak to bathe themselves, some are even tube fed, and yes, some have died from it.
I have been borderline "mild"-severe just a few times, too weak to walk or stand at all, too weak to talk in more than a whisper, too sick and exhausted to even watch TV…but mostly l live in the land of moderate.
I feel great empathy for those who are worse off with this disease….It's a horrible place to be, especially since, due to lack of research and the stigma associated with the disease, the chance to get any kind of treatment or medical support is rare. It's rare for any of us, but for those who are severe it must add to the devastation and hopelessness.
Lately, I've been riding the roller coaster of M.E.
I realize that experiencing this roller coaster is evidence that I don't have severe M.E. in that I have days where I feel fairly decent (still mostly home-bound), and days where I can't take another moment, I feel so ill.
I wake up almost everyday lately with ideas and ambitions for my day. Work on my PhD stuff in bed, work on a lino-cut print, do an errand, do some small things in the yard…nothing overly ambitious, just things like fill the bird feeder, or a couple weeks ago, plant the peas.
But after my 1hr - 2hr PhD session working in bed each morning, (or even if I skip this session), around noon it all goes down hill. I have called it the "witching hour" or "turning into a pumpkin" for years. It's like coming down with influenza, it happens fast. And while it is a physical worsening (my immune system flares), all sorts of feelings are associated with it:
Not always, but often, around 7p.m. the worst of the flu symptoms and weakness lift a little. I'm not as well as first thing in the morning, but I can breathe without feeling so ill and sick, like someone scoured my lungs with steel wool.
Despite the witching hour, I do get little things accomplished. The dishes (sitting on my stool), very very short sessions outside, an article read or summarized. I wish I loved watching movies and TV more, but I can't tolerate too much of it so I try to keep that as my evening activity rather than watching stuff all afternoon as well.
Lately, I've also occasionally been attending a dog class (with accommodations - basically, for the most part, someone else does the dog training while I watch with my feet up), but it's been so wonderful to get out of the house and interact with other people once in a while. While on the one hand, I think it's been negatively effecting my health, on the other hand, it has been good for my social/emotional health.
On the humorous side, there has been a lot of crying associated with this dog class. Sometimes I cry before going (because I want so badly to attend, but feel awfully ill). At least two times in the last few months I've sat by the door with my bag packed ready to go, sobbing, trying to garner the will power to push through. Then sometimes I cry after going, because it was a bad choice, I was so dizzy the room just moved on it's own the whole time, or it caused an immediate and horrible crash. Finally, there's the days I can't manage to go at all, and I cry because it sucks so much to have to miss it.
I cry for missing the dog class, but also for missing out on so much - having a job or career, doing all the outdoor sports I used to love, going for a run, having a social life, dating, having children, earning my own way in the world. Missing a dog class can trigger all the losses that have come with this &*^% &%$##$@ illness.
Of course you could write to your representative to demand better funding for M.E., or bust myths when you hear people spouting ridiculous beliefs about those who are ill, or give money to good research that's going on. People have started fundraisers, or run races, raising money for M.E. Others have created awareness videos.
Moving on from awareness, I wanted to write about the "witching hour".
I consider myself to have a moderate version of M.E. People who have severe M.E. are bed-bound, too weak to bathe themselves, some are even tube fed, and yes, some have died from it.
I have been borderline "mild"-severe just a few times, too weak to walk or stand at all, too weak to talk in more than a whisper, too sick and exhausted to even watch TV…but mostly l live in the land of moderate.
I feel great empathy for those who are worse off with this disease….It's a horrible place to be, especially since, due to lack of research and the stigma associated with the disease, the chance to get any kind of treatment or medical support is rare. It's rare for any of us, but for those who are severe it must add to the devastation and hopelessness.
Lately, I've been riding the roller coaster of M.E.
I realize that experiencing this roller coaster is evidence that I don't have severe M.E. in that I have days where I feel fairly decent (still mostly home-bound), and days where I can't take another moment, I feel so ill.
I wake up almost everyday lately with ideas and ambitions for my day. Work on my PhD stuff in bed, work on a lino-cut print, do an errand, do some small things in the yard…nothing overly ambitious, just things like fill the bird feeder, or a couple weeks ago, plant the peas.
But after my 1hr - 2hr PhD session working in bed each morning, (or even if I skip this session), around noon it all goes down hill. I have called it the "witching hour" or "turning into a pumpkin" for years. It's like coming down with influenza, it happens fast. And while it is a physical worsening (my immune system flares), all sorts of feelings are associated with it:
- Panic, that I didn't get much done before the witching hour set in.
- Surprise, that all of a sudden I feel so ill and weak, while minutes earlier I wasn't feeling so bad (which is pretty amazing given I've been ill almost 13 years, and dealt with this witching hour almost every day of those 13 yrs)
- Sadness, that I can do so little, that this illness has, and has had, so much power over my life.
- Anger, that I have to feel so awful every day, that I can't do even a portion of the very small tasks I set myself, that my life is seemingly going to waste, that I have no way out, no pill I can take, nothing!
- Desperation, that I have the whole rest of the day to get through - too weak to do much more than lay in bed or on the couch. Some days this is daunting and overwhelming….mindlessly boring.
- Fear, sometimes rational, sometimes not. Especially if I have to do something (push through while ill and socialize) or cancel something due to being so ill. And there is always the fear of a crash being relapse, that I'll feel this bad, be this disabled constantly for the next 6 weeks, instead of until tomorrow morning, or that I'll never have a good moment again.
Not always, but often, around 7p.m. the worst of the flu symptoms and weakness lift a little. I'm not as well as first thing in the morning, but I can breathe without feeling so ill and sick, like someone scoured my lungs with steel wool.
Despite the witching hour, I do get little things accomplished. The dishes (sitting on my stool), very very short sessions outside, an article read or summarized. I wish I loved watching movies and TV more, but I can't tolerate too much of it so I try to keep that as my evening activity rather than watching stuff all afternoon as well.
Lately, I've also occasionally been attending a dog class (with accommodations - basically, for the most part, someone else does the dog training while I watch with my feet up), but it's been so wonderful to get out of the house and interact with other people once in a while. While on the one hand, I think it's been negatively effecting my health, on the other hand, it has been good for my social/emotional health.
On the humorous side, there has been a lot of crying associated with this dog class. Sometimes I cry before going (because I want so badly to attend, but feel awfully ill). At least two times in the last few months I've sat by the door with my bag packed ready to go, sobbing, trying to garner the will power to push through. Then sometimes I cry after going, because it was a bad choice, I was so dizzy the room just moved on it's own the whole time, or it caused an immediate and horrible crash. Finally, there's the days I can't manage to go at all, and I cry because it sucks so much to have to miss it.
I cry for missing the dog class, but also for missing out on so much - having a job or career, doing all the outdoor sports I used to love, going for a run, having a social life, dating, having children, earning my own way in the world. Missing a dog class can trigger all the losses that have come with this &*^% &%$##$@ illness.
Sunday, May 3, 2015
M.E. Awareness Day Approaches, What You Can Do.
https://www.psychologytoday.com/blog/turning-straw-gold/201207/what-those-chronic-pain-or-illness-do-want-hear
As I so often find, Toni Bernhard's posts hit the nail on the head.
While I've written before about the things people with M.E. and invisible chronic illnesses find hard to hear, on the other side, there are things you can do and say that are helpful and supportive.
If you read the link, Toni has some great ones.
May 12th is awareness day for M.E., and due to my inability to deal with the stigma and ignorance that surrounds M.E., I am a terrible advocate. I advocate within my very small community of friends, and on this blog (albeit anonymously). Otherwise, I can be found lying about, or avoiding revealing my diagnoses to avoid people's (often ignorant, dismissive, and sometimes inappropriate) reactions.
However, living with moderate M.E., I thought I'd share the top 5 things that people can do or say, that I find really helpful and/or supportive. But let me also say, if you use these, don't do it just because you're afraid to say/or do the wrong thing. Make sure you are sincere. For me, it's almost as bad to sense insincerity than to hear inappropriate and dismissive comments.
1. Helping….I think helping someone who's chronically ill is difficult. I love Toni's number 2, it rings so true. Having to ask for help puts the sick person in a very vulnerable place. It's really hard to ask for help, and to receive help. It's a constant reminder of all the things that I can no longer do, or that are especially painful/difficult for me. I hate having to ask for things all the time, especially things that seem small, it is really difficult. For one, I want to be able to do stuff for myself, if possible. Obviously. I crash and make myself sicker all the time overdoing it.
Also, I don't want to be an inconvenience/burden to the people around me. If someone doesn't specifically offer to help, generally I am going to assume they'd rather not….and this is true of most people I know who are ill and at least somewhat disabled. Like Toni said, the best way to help someone who's chronically ill is to offer something specific.
The more you know about what is especially difficult for the sick person, the easier this will be. If you want to help someone who's ill and more of an acquaintance, ask a close friend or family member what specifically might be useful. Offering to take their child for an afternoon outing? Offering to run an errand for them? Offering to do something social with them within their limits e.g. visiting them at home?
Personally, I'm always so touched, and so grateful, when someone does something for me that they know is really hard for me. Or similarly, if they ask, "Hey, I'm going to the store, do you need anything?" It's still hard to take help, but it's super nice to not always have to ask. When you offer, you are sharing just a little of the vulnerability with me. For example, I could say "no thanks" to your offer.
2. Share your life with me. I still get the occasional pang of jealousy when I see people my age, out in the world living their lives (e.g. someone out running, going to work, or interacting with their kids). Or people in their 80s who are far more capable than I am (physically). On the other hand, being so isolated and living such a limited life, I LOVE hearing about what my friends and family are doing. Because I can't do a lot of what I would like, I think it makes me even happier when I hear about the ways my friends are living their lives fully. Just because I sometimes wish I could do it too, doesn't mean I'm not happy for you that you can. And even some of the seemingly smaller mundane things sound like adventures to me. Feel free to share your life adventures with me, I can live vicariously.
On the other hand, I also realize that everyone has struggles and hardships. I think sometimes people avoid sharing these with me, knowing what I face with my health every day. But I love being a sounding board for friends, too. It's one small way I can give something back.
While seeing people in hard places can give us perspective on our own situations, I don't see the point in comparing hardships. When I'm having a really hard day, to be honest, it usually doesn't make it any less hard to know that someone's dying of ALS, unable to breathe, or that babies are starving in some country somewhere. Just like despite the M.E., I can have empathy for a friend struggling in a relationship, or a family member who has a bout of influenza or strept throat.
3. Don't take offence, please keep asking. I have very very limited opportunities to make friends or even acquaintances. The friends I've managed to keep are especially important to me. Sometimes, when I'm feeling super weak and fluey, or dizzy, I'm not up for talking on the phone. If I'm doing an outing, sometimes I feel Okay, but that can go down-hill in minutes. As well, after an event (sometimes even a phone call) I often crash, meaning I have flu-like symptoms and increased weakness. It feels a lot like the first day of a bad cold virus or influenza (symptoms milder, weakness and ickiness worse).
My point is, if you invite me to do something with you, or if you call and don't reach me, or if I cut a call or outing short, it has NOTHING to do with you. I absolutely love your company, and I'm touched you made the effort. I'm just ill, and I can't control how I feel (unfortunately).
What you can do is keep trying. Call again, invite me again. And on my end, I'll keep making attempts too. One of the hard things living here is I so rarely get any kind of invitation to do anything. Even people who used to invite me, or made attempts in the past, have stopped….I'm guessing because 9 times out of 10 my answer is no. I love it when my roommate "invites me" to watch a movie, or share a meal. It's about the only interest there is in my company, at least where I live. Don't give up if you have sick friends. Even if we can't visit, attend, come, the gesture means a lot.
4. What to say. I guess if you're close to me, just be honest. And we don't have to talk about me being sick. It consumes so much of my life, it doesn't need to consume my conversations as well. But as a rule of thumb, ask, don't tell. Rather than telling me what I look like or how it looks like I'm doing…. "You're doing great, look at all you accomplish!", or "You look great! not sick at all.", try, "How are you feeling?" "Is this a crash day?" "How are you coping?" "Are you dizzy? Do you need to get your feet up?"
Also, one of the things I hate, is when I tell my parents on the phone that I've been really ill or relapsed and they say "cheer up", or recently, "maybe the nice weather will help." If someone told you their cancer or MS had relapsed would you say "cheer up!" or "get some sun."? Generally "cheer up" would be a response for "I've been feeling sad." although even for sad, not the one I'd go to. On the other hand, a healthy friend told me recently "I hate M.E!" For some reason I was so touched. Maybe the acknowledgement in that statement that M.E. had impacted her life too (also, just the acknowledgement that M.E. sucks).
5. Show an interest. I'm always so grateful when friends or family members do research about M.E. or POTS. It takes the burden off me of always having to explain everything. For example, when the "Canary in a Coal Mine" fundraiser was going on, I had friends who donated and shared info about it online. I felt so supported and cared about. Really, I've got some pretty good friends.
Obviously, if you're alive on this earth you will have friends and family members with a host of conditions. It's not all about me all of the time, I get that. There are so many worthy causes and issues (environmental, social, health etc.). However, when someone cares enough about what I'm going through to look it up, or get involved in some small way, I'm always super touched. For example, even though I gave them to her, it meant the world to me when my mom cared enough to read a summary about POTS and Laura Hillenbrand's "A Sudden Illness" story.
If you have M.E. what do you find most helpful and supportive?
Do any of these ring true?
Will you do anything to advocate for the cause on May 12th?
As I so often find, Toni Bernhard's posts hit the nail on the head.
While I've written before about the things people with M.E. and invisible chronic illnesses find hard to hear, on the other side, there are things you can do and say that are helpful and supportive.
If you read the link, Toni has some great ones.
May 12th is awareness day for M.E., and due to my inability to deal with the stigma and ignorance that surrounds M.E., I am a terrible advocate. I advocate within my very small community of friends, and on this blog (albeit anonymously). Otherwise, I can be found lying about, or avoiding revealing my diagnoses to avoid people's (often ignorant, dismissive, and sometimes inappropriate) reactions.
However, living with moderate M.E., I thought I'd share the top 5 things that people can do or say, that I find really helpful and/or supportive. But let me also say, if you use these, don't do it just because you're afraid to say/or do the wrong thing. Make sure you are sincere. For me, it's almost as bad to sense insincerity than to hear inappropriate and dismissive comments.
1. Helping….I think helping someone who's chronically ill is difficult. I love Toni's number 2, it rings so true. Having to ask for help puts the sick person in a very vulnerable place. It's really hard to ask for help, and to receive help. It's a constant reminder of all the things that I can no longer do, or that are especially painful/difficult for me. I hate having to ask for things all the time, especially things that seem small, it is really difficult. For one, I want to be able to do stuff for myself, if possible. Obviously. I crash and make myself sicker all the time overdoing it.
Also, I don't want to be an inconvenience/burden to the people around me. If someone doesn't specifically offer to help, generally I am going to assume they'd rather not….and this is true of most people I know who are ill and at least somewhat disabled. Like Toni said, the best way to help someone who's chronically ill is to offer something specific.
The more you know about what is especially difficult for the sick person, the easier this will be. If you want to help someone who's ill and more of an acquaintance, ask a close friend or family member what specifically might be useful. Offering to take their child for an afternoon outing? Offering to run an errand for them? Offering to do something social with them within their limits e.g. visiting them at home?
Personally, I'm always so touched, and so grateful, when someone does something for me that they know is really hard for me. Or similarly, if they ask, "Hey, I'm going to the store, do you need anything?" It's still hard to take help, but it's super nice to not always have to ask. When you offer, you are sharing just a little of the vulnerability with me. For example, I could say "no thanks" to your offer.
2. Share your life with me. I still get the occasional pang of jealousy when I see people my age, out in the world living their lives (e.g. someone out running, going to work, or interacting with their kids). Or people in their 80s who are far more capable than I am (physically). On the other hand, being so isolated and living such a limited life, I LOVE hearing about what my friends and family are doing. Because I can't do a lot of what I would like, I think it makes me even happier when I hear about the ways my friends are living their lives fully. Just because I sometimes wish I could do it too, doesn't mean I'm not happy for you that you can. And even some of the seemingly smaller mundane things sound like adventures to me. Feel free to share your life adventures with me, I can live vicariously.
On the other hand, I also realize that everyone has struggles and hardships. I think sometimes people avoid sharing these with me, knowing what I face with my health every day. But I love being a sounding board for friends, too. It's one small way I can give something back.
While seeing people in hard places can give us perspective on our own situations, I don't see the point in comparing hardships. When I'm having a really hard day, to be honest, it usually doesn't make it any less hard to know that someone's dying of ALS, unable to breathe, or that babies are starving in some country somewhere. Just like despite the M.E., I can have empathy for a friend struggling in a relationship, or a family member who has a bout of influenza or strept throat.
3. Don't take offence, please keep asking. I have very very limited opportunities to make friends or even acquaintances. The friends I've managed to keep are especially important to me. Sometimes, when I'm feeling super weak and fluey, or dizzy, I'm not up for talking on the phone. If I'm doing an outing, sometimes I feel Okay, but that can go down-hill in minutes. As well, after an event (sometimes even a phone call) I often crash, meaning I have flu-like symptoms and increased weakness. It feels a lot like the first day of a bad cold virus or influenza (symptoms milder, weakness and ickiness worse).
My point is, if you invite me to do something with you, or if you call and don't reach me, or if I cut a call or outing short, it has NOTHING to do with you. I absolutely love your company, and I'm touched you made the effort. I'm just ill, and I can't control how I feel (unfortunately).
What you can do is keep trying. Call again, invite me again. And on my end, I'll keep making attempts too. One of the hard things living here is I so rarely get any kind of invitation to do anything. Even people who used to invite me, or made attempts in the past, have stopped….I'm guessing because 9 times out of 10 my answer is no. I love it when my roommate "invites me" to watch a movie, or share a meal. It's about the only interest there is in my company, at least where I live. Don't give up if you have sick friends. Even if we can't visit, attend, come, the gesture means a lot.
4. What to say. I guess if you're close to me, just be honest. And we don't have to talk about me being sick. It consumes so much of my life, it doesn't need to consume my conversations as well. But as a rule of thumb, ask, don't tell. Rather than telling me what I look like or how it looks like I'm doing…. "You're doing great, look at all you accomplish!", or "You look great! not sick at all.", try, "How are you feeling?" "Is this a crash day?" "How are you coping?" "Are you dizzy? Do you need to get your feet up?"
Also, one of the things I hate, is when I tell my parents on the phone that I've been really ill or relapsed and they say "cheer up", or recently, "maybe the nice weather will help." If someone told you their cancer or MS had relapsed would you say "cheer up!" or "get some sun."? Generally "cheer up" would be a response for "I've been feeling sad." although even for sad, not the one I'd go to. On the other hand, a healthy friend told me recently "I hate M.E!" For some reason I was so touched. Maybe the acknowledgement in that statement that M.E. had impacted her life too (also, just the acknowledgement that M.E. sucks).
5. Show an interest. I'm always so grateful when friends or family members do research about M.E. or POTS. It takes the burden off me of always having to explain everything. For example, when the "Canary in a Coal Mine" fundraiser was going on, I had friends who donated and shared info about it online. I felt so supported and cared about. Really, I've got some pretty good friends.
Obviously, if you're alive on this earth you will have friends and family members with a host of conditions. It's not all about me all of the time, I get that. There are so many worthy causes and issues (environmental, social, health etc.). However, when someone cares enough about what I'm going through to look it up, or get involved in some small way, I'm always super touched. For example, even though I gave them to her, it meant the world to me when my mom cared enough to read a summary about POTS and Laura Hillenbrand's "A Sudden Illness" story.
If you have M.E. what do you find most helpful and supportive?
Do any of these ring true?
Will you do anything to advocate for the cause on May 12th?
Saturday, April 25, 2015
Time for a Change?
Warning! heavy topics discussed below:
I'm debating making some big changes. More than once this past year, I've wanted my life to end. This is the morbid truth. My life is often pretty miserable (I feel so ill, weak, and dizzy), and I also feel very alone, isolated. What is the purpose of keeping on? How does my life add anything to this wide world? Who enjoys my company, especially when my energy, stamina, and symptoms effect my ability to be social?
When I returned from visiting my brother and his family, the depression hit hard again. Outside of my housemate/friend, there's not a single person who cared or noticed I'd been away. The dog walker maybe? There wasn't a single missed phone message, or a single piece of mail waiting for me.
How purposeless my life seems. Also, adding another layer, I've had severe insomnia since the trip. Worse than I can remember having in my whole life. I go to bed exhausted and doze a little, but mostly lay there for hours and hours, sometimes gaining only two or three disrupted hours of sleep a night. At first I think it was due to the three hour time change. But it's been almost 2 weeks. My usual sleep aids are doing little. I've also added melatonin to the mix, to no avail.
This house is also weighing on me. While in some ways I love having a home, (and it's a pretty cute one) there are many problems (some structural) that need to be addressed. I have no extra income to address them, and I don't have the health to manage even some of the smallest tasks that somehow I thought when I bought the house, that I would manage.
So anyways, something flipped inside of me this week and I've started considering another option. Options are something that are hard to come by when you're ill to the point of being unable to do a lot of stuff.
My disability income is contingent, for example, of me living in this province. Since I spent the decade before getting ill out of the province, I have very limited community here.
However, I started questioning this week, why stay here in this city? What other options could I consider? Is there somewhere else I could go and make a home for myself, somewhere where I might feel less isolated? Or is there a way for me to feel less isolated and disconnected here?
Also, could I be less burdened by a fixer upper not to mention all the usual maintenance a home needs? Could I find something much smaller and low maintenance, for example? (e.g. I've been reading a book about a tiny house, not that I necessarily want a tiny house, it just encouraged me to think outside the box).
I don't have an answer yet, but I've tried to put these questions out into the universe. Is there a way to stop feeling so helpless and dependent (on the government, on my housemate) just wishing it would all end? Am I too sick and too old and too useless to find a life that's a little less lonely? Yes, I realize I'm very very lucky to have the security of a home to live in, and disability income to help me exist. But even this is tinged with guilt (receiving social assistance) every time I think about it.
I feel stuck in a rut. I want to start thinking in a less fatalistic way. There's all sorts I can't control, most frustratingly, my health. But what can I control? What steps could I take to deal with some of the worst burdens in my life (basically lack of employment and income, a home that's too high maintenance for someone who's ill, and most importantly, social isolation).
I'm debating making some big changes. More than once this past year, I've wanted my life to end. This is the morbid truth. My life is often pretty miserable (I feel so ill, weak, and dizzy), and I also feel very alone, isolated. What is the purpose of keeping on? How does my life add anything to this wide world? Who enjoys my company, especially when my energy, stamina, and symptoms effect my ability to be social?
When I returned from visiting my brother and his family, the depression hit hard again. Outside of my housemate/friend, there's not a single person who cared or noticed I'd been away. The dog walker maybe? There wasn't a single missed phone message, or a single piece of mail waiting for me.
How purposeless my life seems. Also, adding another layer, I've had severe insomnia since the trip. Worse than I can remember having in my whole life. I go to bed exhausted and doze a little, but mostly lay there for hours and hours, sometimes gaining only two or three disrupted hours of sleep a night. At first I think it was due to the three hour time change. But it's been almost 2 weeks. My usual sleep aids are doing little. I've also added melatonin to the mix, to no avail.
This house is also weighing on me. While in some ways I love having a home, (and it's a pretty cute one) there are many problems (some structural) that need to be addressed. I have no extra income to address them, and I don't have the health to manage even some of the smallest tasks that somehow I thought when I bought the house, that I would manage.
So anyways, something flipped inside of me this week and I've started considering another option. Options are something that are hard to come by when you're ill to the point of being unable to do a lot of stuff.
My disability income is contingent, for example, of me living in this province. Since I spent the decade before getting ill out of the province, I have very limited community here.
However, I started questioning this week, why stay here in this city? What other options could I consider? Is there somewhere else I could go and make a home for myself, somewhere where I might feel less isolated? Or is there a way for me to feel less isolated and disconnected here?
Also, could I be less burdened by a fixer upper not to mention all the usual maintenance a home needs? Could I find something much smaller and low maintenance, for example? (e.g. I've been reading a book about a tiny house, not that I necessarily want a tiny house, it just encouraged me to think outside the box).
I don't have an answer yet, but I've tried to put these questions out into the universe. Is there a way to stop feeling so helpless and dependent (on the government, on my housemate) just wishing it would all end? Am I too sick and too old and too useless to find a life that's a little less lonely? Yes, I realize I'm very very lucky to have the security of a home to live in, and disability income to help me exist. But even this is tinged with guilt (receiving social assistance) every time I think about it.
I feel stuck in a rut. I want to start thinking in a less fatalistic way. There's all sorts I can't control, most frustratingly, my health. But what can I control? What steps could I take to deal with some of the worst burdens in my life (basically lack of employment and income, a home that's too high maintenance for someone who's ill, and most importantly, social isolation).
Sunday, April 19, 2015
Recovering, or trying to.
Having travelled, I have no idea how long it will take me to recover. On the one hand, I could be in a lot worse shape right now (I'm not as relapsed as I was in February). On the other hand, while I expected it, it is nonetheless frustrating to feel so ill and weak/tired.
I actually had a bit of a break-down this week. I think a lot of it had to do with post-travel fatigue and lack of proper sleep. But I'm also just so tired of being ill and unable to function. There are so many things each day I either want to do, or attempt to do. I get so frustrated with my complete lack of energy/stamina or strength. Also, I'm lonely. M.E. is so isolating. I only have one friend in this city, and she has her own busy life. I just am not well enough to go out and meet people, it's not like I have a job where there's social contact. I wonder sometimes what I'm doing here? But I don't know where else I could go?
As for recovery, I decided I would wait a week after returning home to start working on my dissertation again. I have managed to get approval from my program for a medical leave this summer. I still have to get approval from the university itself, and will find out next week. If I'm approved, this doesn't mean I won't continue to plug away, it will just take the pressure off a little.
I still seem to have jet lag. I'm up until 1 or 2 am, then I sleep in, but I'm not getting very good sleep, or the 9 hours I seem to function best on. If I get less than 9 hours, the M.E. seems to get worse.
Here's a print I created before I left on my trip, I just had to print the final layer, or key block.
Tell me which version you like better, the lighter one, or the darker/bolder one.
I'm also posting a few photos from around this time last year when the ice was going out on Lake Superior. It might be hard to see, but they partly inspired the print.
As for the poll on the right, it seems that most of us with M.E. have some form of OI, and POTS is the more common one.
I was super lightheaded a few minutes ago and took my BP and HR. It was 98/70 and 133. I should maybe give the Florinef another go, it was the best drug for me although it caused significant pulsate tinnitus. I did start a beta blocker, but it made me super super lethargic and fatigued, more than usual if that's possible.
I actually had a bit of a break-down this week. I think a lot of it had to do with post-travel fatigue and lack of proper sleep. But I'm also just so tired of being ill and unable to function. There are so many things each day I either want to do, or attempt to do. I get so frustrated with my complete lack of energy/stamina or strength. Also, I'm lonely. M.E. is so isolating. I only have one friend in this city, and she has her own busy life. I just am not well enough to go out and meet people, it's not like I have a job where there's social contact. I wonder sometimes what I'm doing here? But I don't know where else I could go?
As for recovery, I decided I would wait a week after returning home to start working on my dissertation again. I have managed to get approval from my program for a medical leave this summer. I still have to get approval from the university itself, and will find out next week. If I'm approved, this doesn't mean I won't continue to plug away, it will just take the pressure off a little.
I still seem to have jet lag. I'm up until 1 or 2 am, then I sleep in, but I'm not getting very good sleep, or the 9 hours I seem to function best on. If I get less than 9 hours, the M.E. seems to get worse.
Here's a print I created before I left on my trip, I just had to print the final layer, or key block.
Tell me which version you like better, the lighter one, or the darker/bolder one.
I'm also posting a few photos from around this time last year when the ice was going out on Lake Superior. It might be hard to see, but they partly inspired the print.
As for the poll on the right, it seems that most of us with M.E. have some form of OI, and POTS is the more common one.
I was super lightheaded a few minutes ago and took my BP and HR. It was 98/70 and 133. I should maybe give the Florinef another go, it was the best drug for me although it caused significant pulsate tinnitus. I did start a beta blocker, but it made me super super lethargic and fatigued, more than usual if that's possible.
Wednesday, April 15, 2015
Travel, it's super hard.
Sorry I've been absent, I travelled to see family (my brother and his family). As you might guess, it was really hard, although great to see them. I stayed long enough that I had time to recover there before the return trip (the travel days were brutal). While I'm glad I went (so far) I doubt I'll be keen to do it again for a long while.
I managed two outings while there, and spent a lot of time in bed resting, just like I do here. And I had to navigate stairs multiple times of day (the guest room was upstairs), which is more draining. It would have been imposible during my relapse. Now that I'm home, I have no idea how long it will take me to recover.
I sat beside a woman with MS on my last flight home and we commiserated about traveling and visiting while ill. She had what sounded like similar fatigue, (I mean it was really similar, I've never heard someone with an illness outside M.E. describe fatigue that is so similar). We could relate. I very rarely disclose, but I shared that I had an immune disease triggered by severe mono. She had had to sleep on the couch at her daughters rather than a spare bed to avoid having to do stairs so often during her visit.
Once I recover a bit, I will write more. But the area where my brother and his family moved, is incredibly beautiful. I spent a lot of time (when I wasn't in bed or visiting) sitting on their little deck with my feet up looking out at the lake in the valley and the mountains beyond.
Here's a photo from one of the outings.
I managed two outings while there, and spent a lot of time in bed resting, just like I do here. And I had to navigate stairs multiple times of day (the guest room was upstairs), which is more draining. It would have been imposible during my relapse. Now that I'm home, I have no idea how long it will take me to recover.
I sat beside a woman with MS on my last flight home and we commiserated about traveling and visiting while ill. She had what sounded like similar fatigue, (I mean it was really similar, I've never heard someone with an illness outside M.E. describe fatigue that is so similar). We could relate. I very rarely disclose, but I shared that I had an immune disease triggered by severe mono. She had had to sleep on the couch at her daughters rather than a spare bed to avoid having to do stairs so often during her visit.
Once I recover a bit, I will write more. But the area where my brother and his family moved, is incredibly beautiful. I spent a lot of time (when I wasn't in bed or visiting) sitting on their little deck with my feet up looking out at the lake in the valley and the mountains beyond.
Here's a photo from one of the outings.
Saturday, March 28, 2015
The ups and downs
First, if you have M.E., fill in my new poll on the right. I'm just curious how many of us have some form of OI. My main issue is POTs, however I also have NMH (neurally mediated hypotension) which is basically just low BP when standing. I think it's actually the NMH that causes me to faint on occasion. The OI has been pretty bad the last week.
On the other hand, I've had a couple pretty decent weeks M.E. wise, which is wonderful! Milder flu symptoms and less weakness. I've been doing a few outings per week, short stuff less than an hour. I've also been able to fit in a little art (printmaking).
Here's a photo of me and Tegan (I'm starting to show my age) from an outing about a week ago down the road to see the ice on Lake Superior. We walked out just a little, there were a LOT of people out ice fishing, but I could tell that it wouldn't be safe too much longer.
And of course I'm still doing my daily PhD writing and editing session each a.m. from 1/2 hour to 2 hours. Progress is slow.
And given the 6 week relapse I suffered this winter (and slow progress), we've applied for another medical leave, despite the fact that I've used up the four that are allowed. I very much doubt they'll give it to me. I have found the university very unaccommodating for the most part…while the professors have been great, the policies are discriminating.
Basically if you are ill to the point of being disabled (unable to work), I don't recommend doing something like this. I would quit today if I weren't so close. As well, if you are too ill to work, it's a lot of money and precious energy to spend with almost no outcome (I'm as ill as when I started thus won't be able to work when I'm done). Also, the time I've spent reading and writing could have gone toward healing and social, I have so little energy to go towards living life, and I've spent 6 years of it like this, alone with my books and paper, writing something maybe 3 people will ever read.
Anyways, these are the small details and frustrations of my daily life. With the little bit better health the last two weeks, though, I am coping emotionally better with the day to day, not just constantly wishing it would end. It's amazing how years of being ill can really weigh one's psyche down; also, how when my immune system crashes, usually so does my mood and vice versa. Also sun….its crazy, but my mood is always better on sunny days (like today).
I am waiting to hear back on my most recent WBC, to see if my immune system is showing a little bit of improvement since the relapse, it usually does.
So I'm reading a book called "A Tale for the Time Being". It's good, although I'm not completely wowed yet. However, I keep finding these little jewels in the narratives, and this one (below) especially hit me. It speaks to blogging. Blogging is such an interesting phenomenon. Why do I keep doing it? what need is it filling for me or anyone else? While in the past, it has connected me to people who face similar health challenges, I find myself reading other blogs less and less. Anyways, I thought this quote was pessimistic, but also insightful:
"It made me sad when I caught myself pretending that everybody out there in cyber-space cared about what I thought, when really nobody gives a shit. And when I multiplied that sad feeling by all the millions of people in their lonely little rooms, furiously writing and posting to their lonely little pages that nobody has time to read because they're all so busy writing and posting, it kind of broke my heart" (excerpt from "A Tale for the Time Being by Ruth Ozeki).
On the other hand, I've had a couple pretty decent weeks M.E. wise, which is wonderful! Milder flu symptoms and less weakness. I've been doing a few outings per week, short stuff less than an hour. I've also been able to fit in a little art (printmaking).
Here's a photo of me and Tegan (I'm starting to show my age) from an outing about a week ago down the road to see the ice on Lake Superior. We walked out just a little, there were a LOT of people out ice fishing, but I could tell that it wouldn't be safe too much longer.
And of course I'm still doing my daily PhD writing and editing session each a.m. from 1/2 hour to 2 hours. Progress is slow.
And given the 6 week relapse I suffered this winter (and slow progress), we've applied for another medical leave, despite the fact that I've used up the four that are allowed. I very much doubt they'll give it to me. I have found the university very unaccommodating for the most part…while the professors have been great, the policies are discriminating.
Basically if you are ill to the point of being disabled (unable to work), I don't recommend doing something like this. I would quit today if I weren't so close. As well, if you are too ill to work, it's a lot of money and precious energy to spend with almost no outcome (I'm as ill as when I started thus won't be able to work when I'm done). Also, the time I've spent reading and writing could have gone toward healing and social, I have so little energy to go towards living life, and I've spent 6 years of it like this, alone with my books and paper, writing something maybe 3 people will ever read.
Anyways, these are the small details and frustrations of my daily life. With the little bit better health the last two weeks, though, I am coping emotionally better with the day to day, not just constantly wishing it would end. It's amazing how years of being ill can really weigh one's psyche down; also, how when my immune system crashes, usually so does my mood and vice versa. Also sun….its crazy, but my mood is always better on sunny days (like today).
I am waiting to hear back on my most recent WBC, to see if my immune system is showing a little bit of improvement since the relapse, it usually does.
So I'm reading a book called "A Tale for the Time Being". It's good, although I'm not completely wowed yet. However, I keep finding these little jewels in the narratives, and this one (below) especially hit me. It speaks to blogging. Blogging is such an interesting phenomenon. Why do I keep doing it? what need is it filling for me or anyone else? While in the past, it has connected me to people who face similar health challenges, I find myself reading other blogs less and less. Anyways, I thought this quote was pessimistic, but also insightful:
"It made me sad when I caught myself pretending that everybody out there in cyber-space cared about what I thought, when really nobody gives a shit. And when I multiplied that sad feeling by all the millions of people in their lonely little rooms, furiously writing and posting to their lonely little pages that nobody has time to read because they're all so busy writing and posting, it kind of broke my heart" (excerpt from "A Tale for the Time Being by Ruth Ozeki).
Sunday, March 15, 2015
Just for fun….
Sorry I don't have much to say this week.
But I did see this in the New York Times. If you like solving medical mysteries, this might be fun. First read the issues, then see if you can guess the condition: http://well.blogs.nytimes.com/2015/02/11/think-like-a-doctor-swept-off-her-feet/
But I did see this in the New York Times. If you like solving medical mysteries, this might be fun. First read the issues, then see if you can guess the condition: http://well.blogs.nytimes.com/2015/02/11/think-like-a-doctor-swept-off-her-feet/
Saturday, March 7, 2015
Personal Updates: Searching for Balance
I've been blogging the last few weeks about the recent M.E. hype. As you know, personally, I have problems with the proposed new name and especially the vagueness of the new definition. I am not alone, I've seen a lot written about it by fellow patients as well as M.E. Drs and specialists.
On the other hand, the research out of Colombia University seems promising. Their research involves patients that fit a strict definition of M.E. (including immune symptoms, autonomic nervous system symptoms), making it more likely they will find abnormalities when they're compared to healthy controls. And they have.
If you want, you can donate to their research….I think it's pretty hopeful. I know, we are all stretched, wanting to give to different causes. But if this one excites you (it's happening right now), here's the link.
https://giving.columbia.edu/giveonline/?schoolstyle=5881&alloc=21677
So I had a full month of relapse. I was horribly sick. About a week ago (last Saturday) I felt it start to lift. It happened over a couple days. I am now back to two or so hours every morning where I don't feel as viral, as heavy and weak. So what did I do after a month where I was mostly stuck in bed or on the couch, 95% of the time lying down?
Of course I over-did it. I had a drive with my roommate to see the frozen lake Tuesday, and went to the bank on Wednesday. I was crashed horribly both Thursday and Friday. I lay on the couch both afternoons, really wishing my life would end. I am so so tired of being ill, of it limiting my activity so completely. I often feel very alone, suffering what feels like a severe virus all the time. So often it's exhausting just to get myself food, get dressed, or talk on the phone. I wonder why keep going? (I'm not saying I want to kill myself, more that I see no reason why I continue.) Sometimes I wish, if this is my life, can't it just end? Why must I suffer so much, be so disabled, feel so miserable and ill, from an invisible disease…a disease I can't fight back?
Still, everyday I try to find little things, little moments of joy to balance out the bad. I try to push out the thoughts like: "I don't work, I'm a suck, a drain on society, friends, and family." I try instead to laugh at the antics of my dog, enjoy the sun streaming through the window onto my bed, the birds eating at the feeder, laugh at a comedy on TV, immerse myself in a novel, enjoy my hour or two of writing each morning….I try not to feel my body, or look at the big picture, or think about the past or future.
If you're ill, how do you get through the sickest days?
These posts sometimes come across so heavy I think? I do have better, less sick moments where I enjoy life to a degree. It's not all bad all the time. Thank goodness I'm not always relapsed!!!! and I can do some little things, especially if I stick around home (minimize the outings).
On the other hand, the research out of Colombia University seems promising. Their research involves patients that fit a strict definition of M.E. (including immune symptoms, autonomic nervous system symptoms), making it more likely they will find abnormalities when they're compared to healthy controls. And they have.
If you want, you can donate to their research….I think it's pretty hopeful. I know, we are all stretched, wanting to give to different causes. But if this one excites you (it's happening right now), here's the link.
https://giving.columbia.edu/giveonline/?schoolstyle=5881&alloc=21677
So I had a full month of relapse. I was horribly sick. About a week ago (last Saturday) I felt it start to lift. It happened over a couple days. I am now back to two or so hours every morning where I don't feel as viral, as heavy and weak. So what did I do after a month where I was mostly stuck in bed or on the couch, 95% of the time lying down?
Of course I over-did it. I had a drive with my roommate to see the frozen lake Tuesday, and went to the bank on Wednesday. I was crashed horribly both Thursday and Friday. I lay on the couch both afternoons, really wishing my life would end. I am so so tired of being ill, of it limiting my activity so completely. I often feel very alone, suffering what feels like a severe virus all the time. So often it's exhausting just to get myself food, get dressed, or talk on the phone. I wonder why keep going? (I'm not saying I want to kill myself, more that I see no reason why I continue.) Sometimes I wish, if this is my life, can't it just end? Why must I suffer so much, be so disabled, feel so miserable and ill, from an invisible disease…a disease I can't fight back?
Still, everyday I try to find little things, little moments of joy to balance out the bad. I try to push out the thoughts like: "I don't work, I'm a suck, a drain on society, friends, and family." I try instead to laugh at the antics of my dog, enjoy the sun streaming through the window onto my bed, the birds eating at the feeder, laugh at a comedy on TV, immerse myself in a novel, enjoy my hour or two of writing each morning….I try not to feel my body, or look at the big picture, or think about the past or future.
If you're ill, how do you get through the sickest days?
These posts sometimes come across so heavy I think? I do have better, less sick moments where I enjoy life to a degree. It's not all bad all the time. Thank goodness I'm not always relapsed!!!! and I can do some little things, especially if I stick around home (minimize the outings).
Saturday, February 28, 2015
News from Columbia University: Will it make a difference?
Well, after the news and hype about the new name and definition over the last few weeks, something happened that actually might make a difference.
A group of researchers out of Colombia published the findings of one of their studies, which show clear immune dysregulation with M.E./CFS. Note: rather than a broad definition, the patients they studied had to meet two definitions of the illness, including the Canadian Consensus one which is quite specific.
In very very simple language, they found that M.E. patients in the first three years have a very heightened immune system (over-regulated cytokines…cytokines are the proteins in the blood that signal the immune system to ramp up when you have an infection). After three years of being ill with M.E., the majority of these proteins then become down regulated (compared to healthy controls) showing an exhausted, or worn out immune system.
http://cii.columbia.edu/blog.aspx?cid=yEsoKU
The lead investigator was from Columbia, but authors on the paper include a lot of the big name M.E. specialists as well as researchers from Harvard. However, will this be tossed aside as well?
It's funny, I must have read at least a dozen press releases over the last 2 years, talking about a new study and stating "New Findings confirm Chronic Fatigue Syndrome is a Biological Illness". In fact, I read press releases about studies 10 years ago, that claimed "CFS proven to be biological" and still, a good proportion of people, including doctors, still think it's about fatigue, and/or motivation.
If you watch that short clip, the lead investigator makes the point that this immune system problem is not something to be 'overcome' by trying harder (as everyone who has this knows).
Anyways, this is the kind of thing we need to change the stigma, not a new name. I wish the US government (HHS and NIH) had put the money they sunk into coming up with a new (again) definition and name, into funding some solid research like this. When there's a biological marker (blood test, scan) the definition won't matter much at all. The question is, will this research be tossed aside for some reason?
I hope not. I actually sent some money (small amount) to the Colombia crowd funding campaign to support one of these studies.
Anyways, time will tell. There's supposed to be another big study of theirs coming out in the next two weeks. I think between the Columbia group, the Standford group, and the researchers in Norway, we have reason to hope. Psychologically, I can't risk getting my hopes too high…but at least there's a few big studies in progress that might make a difference when it comes to stigma (within the medical community especially).
These studies take so long to replicate and publish, that I don't expect there will be a diagnostic test in my lifetime. But I love imagining that when some young, active, healthy woman comes down with M.E. 20 years from now, and she knows she's terribly ill, that when she goes to the Dr., there's a test to diagnose her and even treatment options…wow! what a great thought.
A group of researchers out of Colombia published the findings of one of their studies, which show clear immune dysregulation with M.E./CFS. Note: rather than a broad definition, the patients they studied had to meet two definitions of the illness, including the Canadian Consensus one which is quite specific.
In very very simple language, they found that M.E. patients in the first three years have a very heightened immune system (over-regulated cytokines…cytokines are the proteins in the blood that signal the immune system to ramp up when you have an infection). After three years of being ill with M.E., the majority of these proteins then become down regulated (compared to healthy controls) showing an exhausted, or worn out immune system.
http://cii.columbia.edu/blog.aspx?cid=yEsoKU
The lead investigator was from Columbia, but authors on the paper include a lot of the big name M.E. specialists as well as researchers from Harvard. However, will this be tossed aside as well?
It's funny, I must have read at least a dozen press releases over the last 2 years, talking about a new study and stating "New Findings confirm Chronic Fatigue Syndrome is a Biological Illness". In fact, I read press releases about studies 10 years ago, that claimed "CFS proven to be biological" and still, a good proportion of people, including doctors, still think it's about fatigue, and/or motivation.
If you watch that short clip, the lead investigator makes the point that this immune system problem is not something to be 'overcome' by trying harder (as everyone who has this knows).
Anyways, this is the kind of thing we need to change the stigma, not a new name. I wish the US government (HHS and NIH) had put the money they sunk into coming up with a new (again) definition and name, into funding some solid research like this. When there's a biological marker (blood test, scan) the definition won't matter much at all. The question is, will this research be tossed aside for some reason?
I hope not. I actually sent some money (small amount) to the Colombia crowd funding campaign to support one of these studies.
Anyways, time will tell. There's supposed to be another big study of theirs coming out in the next two weeks. I think between the Columbia group, the Standford group, and the researchers in Norway, we have reason to hope. Psychologically, I can't risk getting my hopes too high…but at least there's a few big studies in progress that might make a difference when it comes to stigma (within the medical community especially).
These studies take so long to replicate and publish, that I don't expect there will be a diagnostic test in my lifetime. But I love imagining that when some young, active, healthy woman comes down with M.E. 20 years from now, and she knows she's terribly ill, that when she goes to the Dr., there's a test to diagnose her and even treatment options…wow! what a great thought.
Sunday, February 22, 2015
I told an outright lie: Stigma matters.
With M.E. in the media lately, I'm seeing all kinds of articles and responses to the new criteria and name the U.S. government came up with. While there's a few good things about the report: they're saying it's a physical disease (rather than psychological or a syndrome) and calling for more and better research, still, there are major problems with it all.
For example, who are the U.S. government to re-name a disease that affects people globally? And how is making the criteria so broad going to help people? It means if they use this criteria in research, they will likely be clumping together a bunch of people who may have quite diverse issues going on.
Ten or so years ago, in Canada, a group of M.E. specialists (an international panel) with years of treating the illness came up with an agreed upon criteria. Why has this been thrown out the window by the IOM?
At this point, all I can hope for is more good than bad comes out of this. Still, I'm not sure if they are really describing the illness from which I suffer, so I'll continue to call what I have M.E. Or will I?
When put on the spot this week as to why I've been so sick, I answered, "an autoimmune disease". Sigh. I just, for once, didn't want to face having to educate someone about what M.E. is, or deal with the immediate disbelief I often get, especially if the word fatigue comes up.
Yes, while I'm disabled by profound fatigue and weakness, the word fatigue just seems to trigger "Oh I get that too.", "Have you tried exercise, diet?", "Do you think you really have Lyme? or ____ (in other words, M.E. can't be an acceptable/legitimate explanation)", "I get down this time of year too.", "Have you tried counseling or a support group?" "I think getting out more would help." "Well you don't look sick, you look great!" etc. etc.
For once I didn't have to justify or explain that I am not tired or down, agoraphobic or unmotivated, I'm actually ill as in sick; as sick as the worst day of influenza (at least lately). Instead of all these things I usually get, the immediate response was acceptance. It was almost bizarre, and just such a lovely relief that I didn't have to explain or justify anything.
Yes, I did a disservice to myself and others who are fighting to legitimize M.E. as the terrible and real illness that it is. It's horrible of me. And I feel guilty to a degree.
You know one thing I've learned through almost 13 years of fighting the never ending weakness and immune stuff/viral stuff, is that despite what any other person (friend, doctor, relative, stranger) believes, even what I believe myself, I'm ill. That's the reality. I've tried to ignore it, push through it, give into it, block it out, believe it's all in my head and somehow mind over matter. Absolutely none of this has changed the reality…the truth that I'm ill. Not only that, and most angering of all, is the harder I try to ignore it and push through, usually, the harder I fall, the weaker and sicker I become. It's enough to drive anyone mad.
But despite the fact that what anyone thinks doesn't change the reality that I'm ill, it does change my experience of being ill. M.E.'s stigma and lack of research means the experience for me and other sufferers is much worse. There is often little support from friends or family, it's hard to get financial support, employment supports, and almost impossible to find a Dr. with, if they even believe you're sick, any knowledge of what's going on or how to help.
(While the research into the illness is like a drop in a lake, there are at least 6000 studies showing physical abnormalities, but try to find a Dr. who knows about one of them). When you say what you have, and nine times out of 10 are faced with disbelief or belittlement, it makes the experience of being ill much harder.
I recently read that M.E. patients are 10 times more likely to die from suicide. I think that statistic will come down enormously as soon as the social stigma is removed. When you can say "I have M.E." the way I told that guy "I have an autoimmune disease that causes severe weakness" and are accepted immediately, on the spot as ill, even sympathised with, I think that will be absolutely huge.
In the future I need to say "immune disease" if I'm not up to dealing with possible stigma. At least that's completely true. While there is a chance there is an autoimmune process involved, there is not enough research yet to call it autoimmune."
Oh and while not really all that significant, my NP called and said my WBC was low again with this relapse. Why does that happen? What does it mean? Just more, "Who knows. Your immune system isn't well".
For example, who are the U.S. government to re-name a disease that affects people globally? And how is making the criteria so broad going to help people? It means if they use this criteria in research, they will likely be clumping together a bunch of people who may have quite diverse issues going on.
Ten or so years ago, in Canada, a group of M.E. specialists (an international panel) with years of treating the illness came up with an agreed upon criteria. Why has this been thrown out the window by the IOM?
At this point, all I can hope for is more good than bad comes out of this. Still, I'm not sure if they are really describing the illness from which I suffer, so I'll continue to call what I have M.E. Or will I?
When put on the spot this week as to why I've been so sick, I answered, "an autoimmune disease". Sigh. I just, for once, didn't want to face having to educate someone about what M.E. is, or deal with the immediate disbelief I often get, especially if the word fatigue comes up.
Yes, while I'm disabled by profound fatigue and weakness, the word fatigue just seems to trigger "Oh I get that too.", "Have you tried exercise, diet?", "Do you think you really have Lyme? or ____ (in other words, M.E. can't be an acceptable/legitimate explanation)", "I get down this time of year too.", "Have you tried counseling or a support group?" "I think getting out more would help." "Well you don't look sick, you look great!" etc. etc.
For once I didn't have to justify or explain that I am not tired or down, agoraphobic or unmotivated, I'm actually ill as in sick; as sick as the worst day of influenza (at least lately). Instead of all these things I usually get, the immediate response was acceptance. It was almost bizarre, and just such a lovely relief that I didn't have to explain or justify anything.
Yes, I did a disservice to myself and others who are fighting to legitimize M.E. as the terrible and real illness that it is. It's horrible of me. And I feel guilty to a degree.
You know one thing I've learned through almost 13 years of fighting the never ending weakness and immune stuff/viral stuff, is that despite what any other person (friend, doctor, relative, stranger) believes, even what I believe myself, I'm ill. That's the reality. I've tried to ignore it, push through it, give into it, block it out, believe it's all in my head and somehow mind over matter. Absolutely none of this has changed the reality…the truth that I'm ill. Not only that, and most angering of all, is the harder I try to ignore it and push through, usually, the harder I fall, the weaker and sicker I become. It's enough to drive anyone mad.
But despite the fact that what anyone thinks doesn't change the reality that I'm ill, it does change my experience of being ill. M.E.'s stigma and lack of research means the experience for me and other sufferers is much worse. There is often little support from friends or family, it's hard to get financial support, employment supports, and almost impossible to find a Dr. with, if they even believe you're sick, any knowledge of what's going on or how to help.
(While the research into the illness is like a drop in a lake, there are at least 6000 studies showing physical abnormalities, but try to find a Dr. who knows about one of them). When you say what you have, and nine times out of 10 are faced with disbelief or belittlement, it makes the experience of being ill much harder.
I recently read that M.E. patients are 10 times more likely to die from suicide. I think that statistic will come down enormously as soon as the social stigma is removed. When you can say "I have M.E." the way I told that guy "I have an autoimmune disease that causes severe weakness" and are accepted immediately, on the spot as ill, even sympathised with, I think that will be absolutely huge.
In the future I need to say "immune disease" if I'm not up to dealing with possible stigma. At least that's completely true. While there is a chance there is an autoimmune process involved, there is not enough research yet to call it autoimmune."
Oh and while not really all that significant, my NP called and said my WBC was low again with this relapse. Why does that happen? What does it mean? Just more, "Who knows. Your immune system isn't well".
Saturday, February 14, 2015
Autonomic Dysfunction
The autonomic nervous system regulates all those things we don't think about: heart rate, blood pressure, temperature control, and digestion. They've known for a long time that M.E. patients have some type of autonomic dysfunction, that's why most of us have some form of OI.
I've been so crashed/relapsed the last week or two, I can barely cope. My body is so heavy, weak, fluey and ill. So yesterday, I felt pretty much like I was dying, although I knew it was the M.E. I decided to take my HR and BP and my HR was 50, which is pretty slow. Of course I was barely moving. Then I stood up and it was over 150. So while you need an increase of 30 beats a minute when standing to have POTS, I had an increase of OVER 100. Obviously when I'm this sick, so is my autonomic nervous system.
Please send any extra vibes and good thoughts you can my way. I am so very ill at the moment. I know I'll improve eventually, but I would like it to be soon. I wake up everyday lately and think, "I might be just a tad better". But I don't think I am (yet). I'm still super weak and shaky if I try to use my muscles. My body feels sick and poisoned, viral, heavy.
On the positive, we had a big snowfall this week, and the world outside my window, while cold (-20 with a -36 windchill) is just beautiful. Even sick, I love winter, which I guess is a good thing, given where I live.
I've been so crashed/relapsed the last week or two, I can barely cope. My body is so heavy, weak, fluey and ill. So yesterday, I felt pretty much like I was dying, although I knew it was the M.E. I decided to take my HR and BP and my HR was 50, which is pretty slow. Of course I was barely moving. Then I stood up and it was over 150. So while you need an increase of 30 beats a minute when standing to have POTS, I had an increase of OVER 100. Obviously when I'm this sick, so is my autonomic nervous system.
Please send any extra vibes and good thoughts you can my way. I am so very ill at the moment. I know I'll improve eventually, but I would like it to be soon. I wake up everyday lately and think, "I might be just a tad better". But I don't think I am (yet). I'm still super weak and shaky if I try to use my muscles. My body feels sick and poisoned, viral, heavy.
On the positive, we had a big snowfall this week, and the world outside my window, while cold (-20 with a -36 windchill) is just beautiful. Even sick, I love winter, which I guess is a good thing, given where I live.
Wednesday, February 11, 2015
Rough Week
Today I was supposed to travel to see my parents. I haven't seen them in 6 months and was really looking forward to it. A good friend lost her father this month. So tough. And it's made me feel strongly that I'd like to see my folks.
But Dam# M.E. I've just been so weak and exhausted I can't tell you. So hard to stand up, even lifting the remote or my book I feel the weakness in my arms, overwhelming me. My muscles have been 'buzzy' and shaky. Also, lots of phlegm, but I don't have a cold or a stuffed nose??!!
Anyways, for days I've been weepy, crying all over the place. This is not like me at all. I do cry on occasion, but not often. Lately, I've been falling to pieces. So I got up yesterday needing to make a decision on travel, and decided to tough it out. I've done it sick so many times, I figured I should be able to do it again.
I talked to my parents, my dad booked my shuttle from the airport, but 1/2 hour later I was so overwhelmed with the thought of having to pack a suitcase and sit up for over 5 hours I just fell to pieces again. I called my parents back, tormented about whether I could manage it. I decided to cancel, or reschedule.
Then, with encouragement from my mom, I decided to go see my Nurse Practitioner, to see if something else was going on. You know, part of me says this is M.E. It's an immune disease that causes severe, disabling weakness and fatigue….that's what it is. My blistered throat, chest ache, phlegm, all of it is just part and parcel of my life. But then why was I feeling so much weaker and more emotional?
Anyways, I managed to get a ride to the clinic, and my NP squeezed me in (a rarity). She thinks I have the virus that's going around. While my nose isn't stuffed up, both my ears were full of fluid, she said, and my throat blistered. I also had a low grade fever and tachycardia. Whether I have a full blown virus, or it's just my stupid M.E. immune system reacting to a virus, it's been tough.
I really had wanted to see and check in with my folks. But I'm so exhausted. Just completely done in. Hopefully in a week or so I start to improve.
After days of feeling horrible, my day was topped off when I heard that in the U.S., they've come up with a new name and definition for M.E. or chronic fatigue syndrome. As far as I can tell, this is not really the disease that I've suffered from for 12 1/2 years. To be diagnosed, (using their new criteria) one does not need to have a single immune symptom, can you believe it?
In fact, one need not have a single autonomic nervous system symptom either. While I was happy to read that OI had been added, it's not necessary for diagnosis. In fact, I could probably diagnose 1/2 the people I know with the disease using the criteria they came up with. I can't tell you how angry it makes me. The only good part of the name they came up with was using "disease" instead of "syndrome".
And while they attempted a name change, what they chose sounds ridiculous. Two of the 4 words are "exertion intolerance". We had a large snowfall last night, and my roommate was out early shovelling enough to get out of the driveway for work. I think she could easily have felt "exertion intolerance". What a joke. Anyways, since immune abnormalities neither come up in the name, and are not necessary to be diagnosed, it's pretty clear that this is not the illness I have, since from onset, I have been dealing with an immune, or neuro immune disease.
I will need to stay away from the news for a while as this has been so frustrating to me. I need to remember there is some decent research being done on the immune abnormalities in the post viral type disease from which I suffer.
Hopefully soon (although history has shown no indication for hope), there will be a better diagnosis and name for people like me - whether it's a B cell autoimmune disease, or inflammatory immune condition, whatever…something that actually refers to the dysregulation and/or disease going on in the body, rather than naming a symptom.
But Dam# M.E. I've just been so weak and exhausted I can't tell you. So hard to stand up, even lifting the remote or my book I feel the weakness in my arms, overwhelming me. My muscles have been 'buzzy' and shaky. Also, lots of phlegm, but I don't have a cold or a stuffed nose??!!
Anyways, for days I've been weepy, crying all over the place. This is not like me at all. I do cry on occasion, but not often. Lately, I've been falling to pieces. So I got up yesterday needing to make a decision on travel, and decided to tough it out. I've done it sick so many times, I figured I should be able to do it again.
I talked to my parents, my dad booked my shuttle from the airport, but 1/2 hour later I was so overwhelmed with the thought of having to pack a suitcase and sit up for over 5 hours I just fell to pieces again. I called my parents back, tormented about whether I could manage it. I decided to cancel, or reschedule.
Then, with encouragement from my mom, I decided to go see my Nurse Practitioner, to see if something else was going on. You know, part of me says this is M.E. It's an immune disease that causes severe, disabling weakness and fatigue….that's what it is. My blistered throat, chest ache, phlegm, all of it is just part and parcel of my life. But then why was I feeling so much weaker and more emotional?
Anyways, I managed to get a ride to the clinic, and my NP squeezed me in (a rarity). She thinks I have the virus that's going around. While my nose isn't stuffed up, both my ears were full of fluid, she said, and my throat blistered. I also had a low grade fever and tachycardia. Whether I have a full blown virus, or it's just my stupid M.E. immune system reacting to a virus, it's been tough.
I really had wanted to see and check in with my folks. But I'm so exhausted. Just completely done in. Hopefully in a week or so I start to improve.
After days of feeling horrible, my day was topped off when I heard that in the U.S., they've come up with a new name and definition for M.E. or chronic fatigue syndrome. As far as I can tell, this is not really the disease that I've suffered from for 12 1/2 years. To be diagnosed, (using their new criteria) one does not need to have a single immune symptom, can you believe it?
In fact, one need not have a single autonomic nervous system symptom either. While I was happy to read that OI had been added, it's not necessary for diagnosis. In fact, I could probably diagnose 1/2 the people I know with the disease using the criteria they came up with. I can't tell you how angry it makes me. The only good part of the name they came up with was using "disease" instead of "syndrome".
And while they attempted a name change, what they chose sounds ridiculous. Two of the 4 words are "exertion intolerance". We had a large snowfall last night, and my roommate was out early shovelling enough to get out of the driveway for work. I think she could easily have felt "exertion intolerance". What a joke. Anyways, since immune abnormalities neither come up in the name, and are not necessary to be diagnosed, it's pretty clear that this is not the illness I have, since from onset, I have been dealing with an immune, or neuro immune disease.
I will need to stay away from the news for a while as this has been so frustrating to me. I need to remember there is some decent research being done on the immune abnormalities in the post viral type disease from which I suffer.
Hopefully soon (although history has shown no indication for hope), there will be a better diagnosis and name for people like me - whether it's a B cell autoimmune disease, or inflammatory immune condition, whatever…something that actually refers to the dysregulation and/or disease going on in the body, rather than naming a symptom.
Friday, February 6, 2015
Tired and Weak
I've been really tired lately (like beyond exhausted). As well, I've been suffering bouts of weakness. Occasionally I'm so weak, I can't even stand up for more than a second, because my muscles will give out, and I'll collapse. Similarly, sometimes my arms are too weak to even lift something light and simple. It's not common for me to be this weak, but I had a few hours this week where I couldn't stand up or walk.
While I'm sure being deonditioned doesn't help, I know it's not a result of deconditioning because if I rest completely, things improve. I can be too weak to stand, but 24 hours later, be strong enough to walk a 1/2 block without repercussions. It's very confusing to make sense of.
I think some of it is when the OI is acting up (postural tachycardia and hypotension), some of it is hormone related as the weakness is always worse certain times of month, and it's usually also PEM connected (i.e. I did too much two days before). Anyways, things could be worse. While the fatigue and weakness are disabling, the flu symptoms (throat, lymph nodes, breathing ache) have been only average, which is nice.
I've been working sometimes 3 hours a day on writing my dissertation! I sleep in, get my coffee in the morning than go back to bed with my computer. I take small breaks to snack or let the dog out, but sometimes it's 1pm before I get out of bed and my PJ's. Of course after I'm dressed, and maybe do a small task, I'm back in bed reading, resting, or surfing.
I'm supposed to travel to see my folks next week, but might have to postpone it if I'm still this weak. I couldn't manage the travel yet. Although hopefully by next week. Fingers crossed. I haven't seen them in six months.
I wanted to share my most recent print. I'm not planning on printing much this year, but friends who live in Alaska each winter, gave me the idea to do a print with dogs and ravens, two of my favourite things to print. I'm happy with it, I like when my prints have a graphic look, and seem to tell a story.
While I'm sure being deonditioned doesn't help, I know it's not a result of deconditioning because if I rest completely, things improve. I can be too weak to stand, but 24 hours later, be strong enough to walk a 1/2 block without repercussions. It's very confusing to make sense of.
I think some of it is when the OI is acting up (postural tachycardia and hypotension), some of it is hormone related as the weakness is always worse certain times of month, and it's usually also PEM connected (i.e. I did too much two days before). Anyways, things could be worse. While the fatigue and weakness are disabling, the flu symptoms (throat, lymph nodes, breathing ache) have been only average, which is nice.
I've been working sometimes 3 hours a day on writing my dissertation! I sleep in, get my coffee in the morning than go back to bed with my computer. I take small breaks to snack or let the dog out, but sometimes it's 1pm before I get out of bed and my PJ's. Of course after I'm dressed, and maybe do a small task, I'm back in bed reading, resting, or surfing.
I'm supposed to travel to see my folks next week, but might have to postpone it if I'm still this weak. I couldn't manage the travel yet. Although hopefully by next week. Fingers crossed. I haven't seen them in six months.
I wanted to share my most recent print. I'm not planning on printing much this year, but friends who live in Alaska each winter, gave me the idea to do a print with dogs and ravens, two of my favourite things to print. I'm happy with it, I like when my prints have a graphic look, and seem to tell a story.
Sunday, January 25, 2015
The M.E. yoyo of health
After a horrible crash, I bounced back to 'pretty decent'. Which is to say, decent for me. I'm not even close to functioning at 50% of the average healthy person my age, I'd say maybe 30% instead of the usual 20%?
I'm still mostly home bound, but I've been doing one or two outings a week of about an hour without an immune flare/system crash (not to stores, stores are just a recipe for a major crash). Also, I've upped my PhD work (still from bed) to over 2 hours a day some days.
And I'll take the lessened feeling of constant ickiness, heaviness, any day.
I'm supposed to travel twice in the next 4 months which unfortunately sometimes leads to relapses for me (a crash is an immune/weakness/malaise flare to activity usually hitting 36 to 48 hrs after said activity. A relapse is a worsening of the overall condition, e.g. a crash that continues for a month or more. I had a relapse in the fall after travelling 2 times in August). There is a fairly good chance I will cancel the 2nd trip, depending on the consequences of the 1st (to see my parents, includes a 5 hr travel day, but otherwise pretty low key).
I'm off the POTS drugs right now. I have some beta blockers to try, and I'm thinking of going back on the florinef as it seemed to help with the dizzy spells. Problem was, at the dose where it was helpful, I got pulsatile tinnitus from the increased blood flow, which was too annoying to live with.
Despite doing pretty decently, I'm very exhausted right now and seem to be crashing. It is such an unpredictable yo yo. Sorry I don't have much interesting to write a present. I hope you all are doing as well as possible.
I'm still mostly home bound, but I've been doing one or two outings a week of about an hour without an immune flare/system crash (not to stores, stores are just a recipe for a major crash). Also, I've upped my PhD work (still from bed) to over 2 hours a day some days.
And I'll take the lessened feeling of constant ickiness, heaviness, any day.
I'm supposed to travel twice in the next 4 months which unfortunately sometimes leads to relapses for me (a crash is an immune/weakness/malaise flare to activity usually hitting 36 to 48 hrs after said activity. A relapse is a worsening of the overall condition, e.g. a crash that continues for a month or more. I had a relapse in the fall after travelling 2 times in August). There is a fairly good chance I will cancel the 2nd trip, depending on the consequences of the 1st (to see my parents, includes a 5 hr travel day, but otherwise pretty low key).
I'm off the POTS drugs right now. I have some beta blockers to try, and I'm thinking of going back on the florinef as it seemed to help with the dizzy spells. Problem was, at the dose where it was helpful, I got pulsatile tinnitus from the increased blood flow, which was too annoying to live with.
Despite doing pretty decently, I'm very exhausted right now and seem to be crashing. It is such an unpredictable yo yo. Sorry I don't have much interesting to write a present. I hope you all are doing as well as possible.
Tuesday, January 13, 2015
All Good Things….
You know the rest of the sentence…"must come to an end".
My good spell is over. I feel so awful and fluey and "icky". I feel weak and shaky. It hurts to breath - a heavy achy fluey pressure in my lungs. Even my lymph nodes (axillary ones) hurt. This is a symptom I get when I'm especially viral.
On days like this it's hard to "take it". There is just no escape. I feel so trapped. I'm way too weak and ill to want to do anything. I'm glad I'm alone in that I don't really even have the energy to talk much.
On days like today, it's so hard to exist because I'm so weighed down by this awful experience of my sick body.
I don't really know what I did to cause the immune crash? I had an hour and 1/2 outing on Saturday. I crashed Monday (36 hours later like clockwork). But why am I even worse today?
I really just hate my life sometimes. Hopefully I improve soon. Sorry for the whinge.
My good spell is over. I feel so awful and fluey and "icky". I feel weak and shaky. It hurts to breath - a heavy achy fluey pressure in my lungs. Even my lymph nodes (axillary ones) hurt. This is a symptom I get when I'm especially viral.
On days like this it's hard to "take it". There is just no escape. I feel so trapped. I'm way too weak and ill to want to do anything. I'm glad I'm alone in that I don't really even have the energy to talk much.
On days like today, it's so hard to exist because I'm so weighed down by this awful experience of my sick body.
I don't really know what I did to cause the immune crash? I had an hour and 1/2 outing on Saturday. I crashed Monday (36 hours later like clockwork). But why am I even worse today?
I really just hate my life sometimes. Hopefully I improve soon. Sorry for the whinge.
Tuesday, January 6, 2015
Better times
So I feel like if I write this down, it might jinx it. Does anyone else ever feel that way?
Unusually, I've had maybe 2 pretty decent weeks. I've barely felt weak or fluy at all. On the other hand, I am not pushing it either. I haven't been doing tasks much more than doing the dishes sitting on a stool. Almost no outings, little socializing. Still there are plenty of times where I've been mostly home bound/doing almost nothing and felt very ill, fluy and weak the whole time.
I have been working an hour or two everyday in bed, going through my interviews and making notes, I guess it's a form of analysis or perhaps synthesis is a better word?
I'm dying to get out and take some photos, or get in nature briefly despite the -20 and -30 temps we're getting, but I just haven't made the effort as I know driving is a big trigger for a crash. Winter while sometimes shockingly cold where I live, can also be amazingly beautiful.
I had to go to the dentist this a.m., so we'll see if that ruins my good spell.
Anyways, I thought it would be nice to share some good news re: health for a change.
I know I post these pretty often, but here is another Toni Bernard article that might hit home if you are chronically ill, or are close to someone who is: http://www.psychologytoday.com/blog/turning-straw-gold/201312/my-new-year-s-wishes-the-chronically-ill
Unusually, I've had maybe 2 pretty decent weeks. I've barely felt weak or fluy at all. On the other hand, I am not pushing it either. I haven't been doing tasks much more than doing the dishes sitting on a stool. Almost no outings, little socializing. Still there are plenty of times where I've been mostly home bound/doing almost nothing and felt very ill, fluy and weak the whole time.
I have been working an hour or two everyday in bed, going through my interviews and making notes, I guess it's a form of analysis or perhaps synthesis is a better word?
I'm dying to get out and take some photos, or get in nature briefly despite the -20 and -30 temps we're getting, but I just haven't made the effort as I know driving is a big trigger for a crash. Winter while sometimes shockingly cold where I live, can also be amazingly beautiful.
I had to go to the dentist this a.m., so we'll see if that ruins my good spell.
Anyways, I thought it would be nice to share some good news re: health for a change.
I know I post these pretty often, but here is another Toni Bernard article that might hit home if you are chronically ill, or are close to someone who is: http://www.psychologytoday.com/blog/turning-straw-gold/201312/my-new-year-s-wishes-the-chronically-ill
Thursday, January 1, 2015
Participate in Project Vicariously 2015
I read a post by a fellow M.E. sufferer, Laurel,
http://www.dreamsatstake.com/2014/12/18-years-and-18-wishes.html
listing things she would love to be able to do. She has severe M.E. and has been mostly bed bound for a long time. Reading her list maybe me feel deep sadness for her and others with severe M.E., and also appreciation for the things that I CAN do like having a long bath, going on the occasional outing, sitting up enough to do art, being able to read books, etc.
On the other hand, there are many things that I find myself longing for after 12 years with this disease. I know all of us have our challenges and struggles. Often, life is difficult. While I face pretty large physical struggles, I realize I also have blessings in my life.
But I thought, in the spirit of Laurel's post, I would share 10 things I'd love to be able to do. If you are healthy enough and would like to do one of them for me this year, I could live vicariously through you!!!
Better yet, if any of my friends reading this wanted to take one of these on this year, take a picture of yourself doing it, and when all are complete, I could post the results.
While I very occasionally do this, I have trouble enjoying it due to sensory overload e.g. noise, florescent lights and POTS - sitting up without my feet elevated causes significant tachycardia, the shakes, lightheadedness etc.
I love them both, being out in winter. Enjoy the scenery while you're at it.
Enjoy it without feeling horrible!!!
I've done this since being sick, but it's tough as it causes so many symptoms - dizziness, and of course just the strength and energy required. How amazing would it be to play with a child without M.E. symptoms!!!
While I know life in the working world can be really tedious, I would love to be able to work and earn my own living.
I miss really swimming in lakes and pools. Growing up, I was a competitive swimmer on and off. I occasionally get into a lake in the summer and it's about one of my favourite things in the world, but I can no longer really swim.
There are so many places I'd love to visit, if I were healthy enough. As it is, the occasional time I travel, I'm not usually well enough to actual get out and see much.
It drives me nuts sometimes not to be able to do these things, and when I occasionally try, I black out, sometimes faint, not to mention the PEM or dealing with severe muscle weakness. (Case in point, trying to put up plastic on my windows and realizing my arms are too weak to hold up the hair drier. Not being able to do small tasks is one of the most infuriating parts of M.E. for me.)
Let me know in the comments below, or an email if you'd like to take one of these on.
While there are a lot of things I can't do, or suffer while doing, I appreciate things in my life. I know things could be a lot worse. I want to start the year by acknowledging some of the things that make me feel most blessed:
1. Having a home. Almost everyday I'm grateful that I have a warm (albeit slightly draughty), comfortable place to live. While I'm really getting sick of being so poor, thanks to getting on social assistance disability years back, I have enough to live…which I'm also grateful for, almost daily.
2. Being able to read. If I had the cognitive dysfunction that most with M.E. have, I wouldn't be able to read much. Reading saves me in so many ways, takes me out of my body and my world and into the stories, lives, and ideas of others (fictional or not).
3. My dog. She's loving, non judgemental company. And she thinks I'm great!!! Sometimes I feel so worthless and useless. Who would want to spend time with me? Teagan always enjoys my company, and demands very little.
4. My friends. I'm surprised given how dysfunctional I am, that anyone has bothered to stick around. While I wish I had a few more friends in this city (I have one, my housemate), I have some really amazing friends scattered all over. I am so so lucky.
5. Contact with nature. In some ways, being ill has made me appreciate nature even more. I am awed all the time by small things I never appreciated as much before. A bird, a sky, the moon, waves on the lake, snow falling, all kinds of different light through the windows. Now, when I get a chance to 'be out', I feel like my every cell absorbs it because it is so infrequent and precious.
http://www.dreamsatstake.com/2014/12/18-years-and-18-wishes.html
listing things she would love to be able to do. She has severe M.E. and has been mostly bed bound for a long time. Reading her list maybe me feel deep sadness for her and others with severe M.E., and also appreciation for the things that I CAN do like having a long bath, going on the occasional outing, sitting up enough to do art, being able to read books, etc.
On the other hand, there are many things that I find myself longing for after 12 years with this disease. I know all of us have our challenges and struggles. Often, life is difficult. While I face pretty large physical struggles, I realize I also have blessings in my life.
But I thought, in the spirit of Laurel's post, I would share 10 things I'd love to be able to do. If you are healthy enough and would like to do one of them for me this year, I could live vicariously through you!!!
Better yet, if any of my friends reading this wanted to take one of these on this year, take a picture of yourself doing it, and when all are complete, I could post the results.
1. Go for a run
If I were well this is the first thing I'd do, just to feel my body and my lungs, to sweat and really exercise!
2. Go out and eat a meal at a restaurant, any kind of yummy food with a glass of red wine.
While I very occasionally do this, I have trouble enjoying it due to sensory overload e.g. noise, florescent lights and POTS - sitting up without my feet elevated causes significant tachycardia, the shakes, lightheadedness etc.3. Go ice skating or cross country skiing - either.
I love them both, being out in winter. Enjoy the scenery while you're at it.
4. Go to a play, concert, or sports event with all the stimuli and enjoy it.
Enjoy it without feeling horrible!!!
5. Play with a young child.
I've done this since being sick, but it's tough as it causes so many symptoms - dizziness, and of course just the strength and energy required. How amazing would it be to play with a child without M.E. symptoms!!!
6. Work an 8 hour day.
While I know life in the working world can be really tedious, I would love to be able to work and earn my own living.
7. Swim some distance.
I miss really swimming in lakes and pools. Growing up, I was a competitive swimmer on and off. I occasionally get into a lake in the summer and it's about one of my favourite things in the world, but I can no longer really swim.
8. Travel somewhere!
There are so many places I'd love to visit, if I were healthy enough. As it is, the occasional time I travel, I'm not usually well enough to actual get out and see much.
9. Go for a hike up a big hill or mountain.
10. Do a yard project - rake leaves, mow the lawn, shovel snow, build something, fix something.
It drives me nuts sometimes not to be able to do these things, and when I occasionally try, I black out, sometimes faint, not to mention the PEM or dealing with severe muscle weakness. (Case in point, trying to put up plastic on my windows and realizing my arms are too weak to hold up the hair drier. Not being able to do small tasks is one of the most infuriating parts of M.E. for me.)
Let me know in the comments below, or an email if you'd like to take one of these on.
While there are a lot of things I can't do, or suffer while doing, I appreciate things in my life. I know things could be a lot worse. I want to start the year by acknowledging some of the things that make me feel most blessed:
1. Having a home. Almost everyday I'm grateful that I have a warm (albeit slightly draughty), comfortable place to live. While I'm really getting sick of being so poor, thanks to getting on social assistance disability years back, I have enough to live…which I'm also grateful for, almost daily.
2. Being able to read. If I had the cognitive dysfunction that most with M.E. have, I wouldn't be able to read much. Reading saves me in so many ways, takes me out of my body and my world and into the stories, lives, and ideas of others (fictional or not).
3. My dog. She's loving, non judgemental company. And she thinks I'm great!!! Sometimes I feel so worthless and useless. Who would want to spend time with me? Teagan always enjoys my company, and demands very little.
4. My friends. I'm surprised given how dysfunctional I am, that anyone has bothered to stick around. While I wish I had a few more friends in this city (I have one, my housemate), I have some really amazing friends scattered all over. I am so so lucky.
5. Contact with nature. In some ways, being ill has made me appreciate nature even more. I am awed all the time by small things I never appreciated as much before. A bird, a sky, the moon, waves on the lake, snow falling, all kinds of different light through the windows. Now, when I get a chance to 'be out', I feel like my every cell absorbs it because it is so infrequent and precious.
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