I am hanging in there, still sick (of course) but not relapsed. Decent okay days and horrible days, but luckily just crash days. We celebrated my dad's birthday last week, and I still help him manage life on a daily basis. He is hanging in there too. I'm happy he's nearby, but sometimes being his main companion takes a lot out of me.
I came across this article not long after my mom died. I saw it again today and started crying...it's a really good to read if you've lost your mom (or a close loved one): https://www.theguardian.com/commentisfree/2016/mar/03/we-dont-lose-our-mothers-reality-more-violent-that-that?CMP=fb_gu
My course finished yesterday and I have a week to mark all the assignments and get my grades in, it will be a challenge. I'm so glad this is almost over, I took on way too much with a six week condensed course, even an online one. I am not well enough to manage it. I'm sure I don't need to justify this fact to this crowd (thankfully). Right now things are "spinny" and "off" just looking at this screen, my brain is past processing today. Not that there haven't been good parts, there have been! It's just doing something this intense is too much given my health.
The past week I've been mostly living on the couch watching a lot of Olympics. I invented a word for the hours I'm spending in this semi-vegetative state. I call it Olympitose, get it? :)
Saturday, August 13, 2016
Saturday, July 23, 2016
Life Can be Hard
There are debates about happiness. Some scientists will tell you that a good part of it is genetic, or biological. Are some of us just programmed to be more happy, to take a rosier view of things? There are so many ways to look at it. I read one study recently that looked at a connection between money and happiness. This study found that wealthy people after a certain number (it was under $100 000) aren't any more happy than those with less money, however, there was a cut off. So those who live in poverty did have less happiness (this is no big surprise, when I was struggling this year to pay my bills, it did add a layer of stress to everything else).
So why am I writing about happiness? Because I'm wondering why I'm sad so much of the time lately. Why does life feel so hard/difficult and empty? Why, out of all my whole family, am I the only one who seems to be mourning my mom? Why does this loss have me crying from time to time still 6 months later, why is there a huge hole that I can't seem to fill? It's not like we had the perfect relationship or that we were together a lot (we weren't). It was two or three visits a year and a phone call a week.
Sometimes, even on my "good days" health wise I struggle to feel happy. Instead, I feel so alone. Alone in an empty house I'm mostly too sick to leave, alone with my grief, unattached and unloved by any partner, alone taking care of my dad (not completely true because they help him out at his place, but family-wise very true). And despite the fact I'm working, and that is good, work-wise I feel "alone" because there is no community to bounce things off...no office with a person next door to chat with. The only reason I'm able to do this job is because I don't have to go to an office, on the other hand, there is a feeling of isolation.
My mom's passing this year, brought into focus the temporary nature of human existence for me. I feel like this should mean every moment I have is precious and important. Instead, often I feel like the moments drag, I ponder whether anything matters really.
So basically, I'm having a bit of a "down". It's not all the time, but it is nice to have a place to write about it. Do you ever share any of these same thoughts or feelings?
So why am I writing about happiness? Because I'm wondering why I'm sad so much of the time lately. Why does life feel so hard/difficult and empty? Why, out of all my whole family, am I the only one who seems to be mourning my mom? Why does this loss have me crying from time to time still 6 months later, why is there a huge hole that I can't seem to fill? It's not like we had the perfect relationship or that we were together a lot (we weren't). It was two or three visits a year and a phone call a week.
Sometimes, even on my "good days" health wise I struggle to feel happy. Instead, I feel so alone. Alone in an empty house I'm mostly too sick to leave, alone with my grief, unattached and unloved by any partner, alone taking care of my dad (not completely true because they help him out at his place, but family-wise very true). And despite the fact I'm working, and that is good, work-wise I feel "alone" because there is no community to bounce things off...no office with a person next door to chat with. The only reason I'm able to do this job is because I don't have to go to an office, on the other hand, there is a feeling of isolation.
My mom's passing this year, brought into focus the temporary nature of human existence for me. I feel like this should mean every moment I have is precious and important. Instead, often I feel like the moments drag, I ponder whether anything matters really.
So basically, I'm having a bit of a "down". It's not all the time, but it is nice to have a place to write about it. Do you ever share any of these same thoughts or feelings?
Thursday, July 14, 2016
Working Woman
Sorry I have been so inattentive to this blog. While I've been working since April preparing my course (and the "work" I did on my PhD was also work), I am now officially an instructor and a part-time "working woman", and it is taking a lot out of me.
It is incredibly time consuming, sucking all my energy. I am having symptoms of brain fog which I haven't had in almost 10 years so I know I am near/over my limit. On the other hand, it is about the most perfect job I could find given my abilities and circumstances (flexible schedule online from bed), so I hope I can manage the next 5 weeks.
It is clear to me just after almost two weeks into the course, that I will never work close to full time again in my life time. No amount of will power can overcome all the symptoms and limitations of this GD illness. After 14 years, it's pretty obvious that nothing's going to change much, none of these illness related problems are going to magically disappear. And as my friend with M.E. said, the only hope for us really is "some miracle cure". Realistically it would take a miracle. This likely means that on some level, I may have to be on "disability" indefinitely to survive. This makes me super sad.
On another topic, due to blackouts (which I'm sure are just POTS) and some weird visual symptoms, I agreed to a brain/head MRI. I've never had one, so I guess I might as well, however, I only agreed to it on the condition that I didn't have to see a neurologist. The last thing I need in my life is to wait a year to see another dismissive or arrogant specialist (this is my experience with 4 of 5 I've seen).
I've been enjoying summer a lot despite the much worsened POTS. Sitting outside, tinkering in my gardens, being warm.
It is incredibly time consuming, sucking all my energy. I am having symptoms of brain fog which I haven't had in almost 10 years so I know I am near/over my limit. On the other hand, it is about the most perfect job I could find given my abilities and circumstances (flexible schedule online from bed), so I hope I can manage the next 5 weeks.
It is clear to me just after almost two weeks into the course, that I will never work close to full time again in my life time. No amount of will power can overcome all the symptoms and limitations of this GD illness. After 14 years, it's pretty obvious that nothing's going to change much, none of these illness related problems are going to magically disappear. And as my friend with M.E. said, the only hope for us really is "some miracle cure". Realistically it would take a miracle. This likely means that on some level, I may have to be on "disability" indefinitely to survive. This makes me super sad.
On another topic, due to blackouts (which I'm sure are just POTS) and some weird visual symptoms, I agreed to a brain/head MRI. I've never had one, so I guess I might as well, however, I only agreed to it on the condition that I didn't have to see a neurologist. The last thing I need in my life is to wait a year to see another dismissive or arrogant specialist (this is my experience with 4 of 5 I've seen).
I've been enjoying summer a lot despite the much worsened POTS. Sitting outside, tinkering in my gardens, being warm.
Thursday, June 30, 2016
An interesting crash trigger
So on fathers day I took my dad for a one hour sailing tour of the harbour. While we were out he was clearly nervous as it was in an actual sailing boat (a pretty large one). I thought he'd have the time of his life as one of his main hobbies since he moved here is going to a nearby overlook and watching the ships come and go. While nervous during the tour, in retrospect I think he did enjoy his gift. As for me, I absolutely loved it!!! It felt so cool and adventurous to do something like that rather than the usual laying in bed and/or housebound. To be out on the water on a beautiful day was such a treat. I did get a little dizzy from the motion and some mild sensory overload, but less so than in a store with fluorescent lights. We got up close to a "salty" - an ocean going freighter - and we saw pelicans and cormorants etc.
However, the next day I was not only crashed but burnt! I wore sunscreen but didn't think to do my knees and I was wearing shorts. I had 5 horrible days in bed til I was back to my normal level of crap.
Then this week I had a friend visit, but I was very very careful activity wise not to over-do. I did sit out on the patio quite a bit in my recliner, and one day as I was resting there I got burnt. Then yesterday I was so crashed, I really felt as if I was dying (and I still feel horrible today). My roommate pointed out both crashes weren't the 2 day effect of activity that I can usually count on (if I do too much I crash 36-48 hours later), but rather perhaps as a result of getting too much sun?!! Okay, how can getting too much sun cause an immune reaction? It makes no sense...but it fit. So I posted something on my M.E. group and sure enough, many others have had a relapse/crash from sun exposure. An immune/disease reaction from sun? From enjoying the sun!!!
And to add to the injustice of it all, I've been resting up all week so I could attend a dog event I've been looking forward to for 6 months!!!! But I am absolutely too ill to do anything, and by no means well enough to leave the house. The event runs three days, I'm hoping they will let me shift my registration from Friday to Saturday or Sunday on the off chance I pull out of the relapse/crash in time.
I was so sick yesterday I was just crying with the overwhelming flu and weakness stuff. I made the mistake of wasting my energy to go see my Nurse Practitioner (I had a ride). There is nothing she can do for the M.E which just makes me so so so mad sometimes. Not at her, but at the fact that WTF!!! How can those of us with this disease be so ill with just no one or nothing that can help in anyway?
She did give me a prescription for a PPI again as I've been throwing up a lot, not tolerating most foods. It's a combo of GERD and POTS and just M.E. I think. She also thinks my stomach ulcers are likely back. I also managed to faint in the garden for the first time in 10 months bending over to pick a weed. She said we could get me a new cardiologist (mine retired) but the one I had tried me on most the drugs for POTS and while nice and not dismissive, he really didn't help me much.
So that's my life at present...pretty horrible, and at the moment I feel as if I'm about to puke which lately has been 12 out of the 14 hours that I'm awake. It could be worse, I'm not nauseous, just constantly feel like my food will not stay down (and it doesn't a lot of the time).
As for the issue of a better understanding of M.E. in the general public, a friend (non M.E.) posted an article today and I really like most things about it. For one, while they talk about the study's findings they don't say it's the disease cause as in the case of many of these articles, they speculate it could just as well be the result of the disease process. They also discuss other scientific findings that may be part of the puzzle. They also don't say in the title "M.E. no longer seen as psychological" as most media related articles seem to feel the need to do despite over 4000 studies showing abnormalities and 25 years of research. If you need to feel hopeful about recent science, this is a good article to read: http://www.sciencealert.com/researchers-find-chronic-fatigue-syndrome-markers-in-gut-bacteria
However, the next day I was not only crashed but burnt! I wore sunscreen but didn't think to do my knees and I was wearing shorts. I had 5 horrible days in bed til I was back to my normal level of crap.
Then this week I had a friend visit, but I was very very careful activity wise not to over-do. I did sit out on the patio quite a bit in my recliner, and one day as I was resting there I got burnt. Then yesterday I was so crashed, I really felt as if I was dying (and I still feel horrible today). My roommate pointed out both crashes weren't the 2 day effect of activity that I can usually count on (if I do too much I crash 36-48 hours later), but rather perhaps as a result of getting too much sun?!! Okay, how can getting too much sun cause an immune reaction? It makes no sense...but it fit. So I posted something on my M.E. group and sure enough, many others have had a relapse/crash from sun exposure. An immune/disease reaction from sun? From enjoying the sun!!!
And to add to the injustice of it all, I've been resting up all week so I could attend a dog event I've been looking forward to for 6 months!!!! But I am absolutely too ill to do anything, and by no means well enough to leave the house. The event runs three days, I'm hoping they will let me shift my registration from Friday to Saturday or Sunday on the off chance I pull out of the relapse/crash in time.
I was so sick yesterday I was just crying with the overwhelming flu and weakness stuff. I made the mistake of wasting my energy to go see my Nurse Practitioner (I had a ride). There is nothing she can do for the M.E which just makes me so so so mad sometimes. Not at her, but at the fact that WTF!!! How can those of us with this disease be so ill with just no one or nothing that can help in anyway?
She did give me a prescription for a PPI again as I've been throwing up a lot, not tolerating most foods. It's a combo of GERD and POTS and just M.E. I think. She also thinks my stomach ulcers are likely back. I also managed to faint in the garden for the first time in 10 months bending over to pick a weed. She said we could get me a new cardiologist (mine retired) but the one I had tried me on most the drugs for POTS and while nice and not dismissive, he really didn't help me much.
So that's my life at present...pretty horrible, and at the moment I feel as if I'm about to puke which lately has been 12 out of the 14 hours that I'm awake. It could be worse, I'm not nauseous, just constantly feel like my food will not stay down (and it doesn't a lot of the time).
As for the issue of a better understanding of M.E. in the general public, a friend (non M.E.) posted an article today and I really like most things about it. For one, while they talk about the study's findings they don't say it's the disease cause as in the case of many of these articles, they speculate it could just as well be the result of the disease process. They also discuss other scientific findings that may be part of the puzzle. They also don't say in the title "M.E. no longer seen as psychological" as most media related articles seem to feel the need to do despite over 4000 studies showing abnormalities and 25 years of research. If you need to feel hopeful about recent science, this is a good article to read: http://www.sciencealert.com/researchers-find-chronic-fatigue-syndrome-markers-in-gut-bacteria
Tuesday, June 21, 2016
Crash Days
Sorry I've been absent so much. I've been having a lot of crash days. When I do have a decent day or two, I over do it then have 3 or 4 more crash days where I want to crawl into a hole and die.
So, this leaves me with little to share. I am looking forward to my class starting as I'm hoping it won't be too difficult to monitor and it will provide a distraction that is low-energy. Also, I'm so sick of being desperately poor I can't even put it into words.
How are my readers doing these days? Leave a comment if you want. I hope for those in the Northern Hemisphere you are are least enjoying some outdoor time.
So, this leaves me with little to share. I am looking forward to my class starting as I'm hoping it won't be too difficult to monitor and it will provide a distraction that is low-energy. Also, I'm so sick of being desperately poor I can't even put it into words.
How are my readers doing these days? Leave a comment if you want. I hope for those in the Northern Hemisphere you are are least enjoying some outdoor time.
Thursday, June 2, 2016
Grieving and Graduating
It's six months ago today that my mom died. In some ways it feels a life time away. For the first few months I counted everything - "10 days since I've talked with her" "two weeks since I sat beside her bed and visited" etc. For a while I thought I would never stop crying - bouts where I was insomnic and up late, turning to my iPad to distract myself from crying continually, thinking about her, exhausting myself.
Now it feels less potent, she feels further away. This is a double edged sword. I feel sad about how quickly time has passed because I am further away from her, from our time together. On the other hand, I don't miss the constant emotional pain and crying.
This past weekend I had guests come in, my brother and niece and my good friend A. and her son A. to help me celebrate my convocation. I have never attended a ceremony for a degree. For my bachelor degrees, I was already across the country by the time the ceremony took place, and for my masters I already had M.E. I knew it would be a huge effort and drain to try to attend.
For my PhD I did want to attend, partly because my mom so wanted to see me walk across the stage, and partly because I've missed out on so many milestones and rights of passage being ill, that I wanted to find a way to do this one.
Friday I was so sick, I was sure I'd have to bail, but Saturday I felt a tad better so I toughed it out. My friends were just amazing in helping me get there and get dressed and I'd set up accommodations with the university ahead of time. There is just no way to accommodate the M.E stuff (light and noise sensitivity, weakness, flu and body ache, dizziness) however, I did tell them I had a fainting disorder and could not stand in line or in one place for long.
As it turns out, I was slotted first to graduate. PhDs go first, I was the only PhD from education who attended, so voila. What makes this even cooler is they offered to walk me backstage beforehand and then I could slip out to my seat when everyone was assembled, or I could walk in with the procession (hundreds of people - graduating students and faculty). There is no way I would have chosen to do the procession (way way too much standing) except since I was first, I figured either way I had to walk down to the stage. So, I LEAD the procession!!! (well I was behind the marshals, but still pretty cool).
Then everyone stands at their seat til all are assembled so I slipped behind the stage to sit. Once the procession sat, there were introductions, three short speeches and then I graduated. After I walked across the stage where they hooded me and presented me with a medal I walked around the back where an attendant met me, then instead of going back to my seat for 2 hours as 100s of others graduated, I was lead to a back room. I could watch more ceremony on a screen with my feet up until my friends found me. We actually all went outside, took a few photos and headed home. Because everyone else was still stuck indoors, we had a beautiful spot to take pictures all to ourselves.
I took some time to rest then we had a meal and gf cake to celebrate. I was so wiped out I spent a good hour that night vomiting. This seems to happen when I overdo, as it's the second time in two weeks where effort is followed by vomiting. It is a commonly cited symptom of POTs and I'm thinking they definitely seem to be related for me. Too much standing or exertion = intestinal reaction.
Anyways, not surprisingly I'm in pretty bad shape now, 3 crash days, I'm too weak to do much more than lay in bed or on the couch, and home-bound. But that is definitely to be expected. I don't want to post photos of friends and family to protect privacy, but here's one of my dad and me....also a few of my cool robes. The PhD hood (the behind photo) is big and billowing, the hat is ridiculous in an awesome way and dates back to the Tudor times...and the robe is more the British style, it's open at the front.
Now it feels less potent, she feels further away. This is a double edged sword. I feel sad about how quickly time has passed because I am further away from her, from our time together. On the other hand, I don't miss the constant emotional pain and crying.
This past weekend I had guests come in, my brother and niece and my good friend A. and her son A. to help me celebrate my convocation. I have never attended a ceremony for a degree. For my bachelor degrees, I was already across the country by the time the ceremony took place, and for my masters I already had M.E. I knew it would be a huge effort and drain to try to attend.
For my PhD I did want to attend, partly because my mom so wanted to see me walk across the stage, and partly because I've missed out on so many milestones and rights of passage being ill, that I wanted to find a way to do this one.
Friday I was so sick, I was sure I'd have to bail, but Saturday I felt a tad better so I toughed it out. My friends were just amazing in helping me get there and get dressed and I'd set up accommodations with the university ahead of time. There is just no way to accommodate the M.E stuff (light and noise sensitivity, weakness, flu and body ache, dizziness) however, I did tell them I had a fainting disorder and could not stand in line or in one place for long.
As it turns out, I was slotted first to graduate. PhDs go first, I was the only PhD from education who attended, so voila. What makes this even cooler is they offered to walk me backstage beforehand and then I could slip out to my seat when everyone was assembled, or I could walk in with the procession (hundreds of people - graduating students and faculty). There is no way I would have chosen to do the procession (way way too much standing) except since I was first, I figured either way I had to walk down to the stage. So, I LEAD the procession!!! (well I was behind the marshals, but still pretty cool).
Then everyone stands at their seat til all are assembled so I slipped behind the stage to sit. Once the procession sat, there were introductions, three short speeches and then I graduated. After I walked across the stage where they hooded me and presented me with a medal I walked around the back where an attendant met me, then instead of going back to my seat for 2 hours as 100s of others graduated, I was lead to a back room. I could watch more ceremony on a screen with my feet up until my friends found me. We actually all went outside, took a few photos and headed home. Because everyone else was still stuck indoors, we had a beautiful spot to take pictures all to ourselves.
I took some time to rest then we had a meal and gf cake to celebrate. I was so wiped out I spent a good hour that night vomiting. This seems to happen when I overdo, as it's the second time in two weeks where effort is followed by vomiting. It is a commonly cited symptom of POTs and I'm thinking they definitely seem to be related for me. Too much standing or exertion = intestinal reaction.
Anyways, not surprisingly I'm in pretty bad shape now, 3 crash days, I'm too weak to do much more than lay in bed or on the couch, and home-bound. But that is definitely to be expected. I don't want to post photos of friends and family to protect privacy, but here's one of my dad and me....also a few of my cool robes. The PhD hood (the behind photo) is big and billowing, the hat is ridiculous in an awesome way and dates back to the Tudor times...and the robe is more the British style, it's open at the front.
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| A view of the stage |
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| Is it real gold? |
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