The following blog post is just an update of my travel to see family. I wrote it for myself (writing is cathartic) as much as anything….probably fairly boring to read.
Christmas was insane to manage while ill, especially with the expectations of my parents (sitting up for meals, on top of visiting with siblings that have major disabilities, and an aunt that's severely hearing impaired). It is very hard to speak up for my own needs in such a desperately needy, dysfunctional family.
I was fairly ill on Christmas day after travelling the day before, and I had to excuse myself to rest before and after the meal. This led to a 'lecture' at the meal of how we were all disabled but basically needed to get over it for the sake of others, sigh.
On the other hand, I didn't come here expecting any consideration or accommodation, as I've learnt through experience that this is just the situation. Taking care of my health needs is completely my responsibility and often at the price of ridicule from others (to be fair, sometimes there are small acknowledgements or accommodations).
Health wise, boxing day was even worse as I 'crashed' from the travel on the 24th. On the other hand, I lay in bed most the day and there were no external expectations of me. My parents in the evening even offered me the couch to lay on as we watched movies.
I was then able to rest some for the 50th wedding anniversary open-house on the 28th. For me on that day, I was prepared mentally to sacrifice and suffer for the sake of giving my parents the best event possible. I wore my support hose (which I hate). During the event, I mostly did the meet and greet at the door during, as well as the 2 hours prior doing set-up (where I tried to sit as much as possible). I dealt with fairly severe dizziness/lightheadedness throughout. The noise from the talking at the party was very difficult to bare on top of being so dizzy/light headed. On the plus side, I wasn't having a day of severe weakness or major immune symptoms. Small blessings.
I looked down at my hands a couple times during the event, and they were definitely more purple than I'd ever seen them. No doubt I endured non-stop tachycardia for hours. I managed to sit down briefly 3 times in the 2 1/2 hours which is more standing than I've done in years. And thankfully, I only received two "you look fines" and one "after hearing you are so unwell, it's great to see that you're now healthy". The comments were only mildly bruising to me. In contrast, my roommate/best friend's family members were all very sweet, knowing through her how tough this would be for me. Three of them made some type of concerned or encouraging comment as to how I was holding up.
On the positive, my parents were so happy to see friends, neighbours and relatives that I am very glad we planned the whole thing despite the sacrifices involved for me. As I've said many times on here, we get this one life, and for me, it's life in a sick body. Even sick, and at a price, I still love seeing my parents happy. I think they felt very loved and celebrated during the event and I know I will be glad we did this for them in the years to come. I was also glad for the work and effort I put into the slide show, a highlight of the event. I had scanned old photos and put together a slide show of 80 photos that ran on a loop on their TV. It was a talking point and provided fodder for conversation during the party.
Then, my only chance to see my niece (9) and nephew (8) were that evening and the next day, so I traveled back (45min) with my brother's family. I spent the next day mostly in bed at their house, watching you tubes, reading, and playing computer games with my niece and nephew. Once again, a compromise. I was sure to enforce a day with my feet up in bed for me, while at the same time 'toughing out' social energy for quality time with my favourite kids, knowing there will be payback.
Tomorrow I travel home, and I am by no means up to it. I can feel the toll of the week's energy output. The left side of my face and eye are twitching constantly (in the last couple months a marker of fatigue for me). I'm feeling weaker and sicker. I look very pale.
On the other hand, if I postpone travel, it will be longer before I'm at home in my own bed which I am feeling desperate for. I keep telling myself, only one more 1/2 day where I need to solicit from my body an act of heroism (giggle if you will, but that's what it feels like) in order to get me home where I can recover. I did put most the heavy items (gifts and some clothing) in a box that will be shipped, rather than try to deal with a heavy suitcase on my own.
Monday, December 30, 2013
Saturday, December 21, 2013
Will not versus can not.
Christmas and my parent's 50th anniversary are close. It is frustrating beyond words to be in a position of being ill, weak, fatigued and have to face the upcoming travel and social/events. I go back and forth in my mind on whether I should go or not.
It doesn't help that I am up and down health wise lately. Friday I wasn't too bad and even managed a haircut with someone to drive me. Today I am by no means strong enough, or well enough for a 4 to 5 hour travel day. Do I want to go? Well, despite my family's craziness, I really do want to go and help celebrate. But when being ill is taken into account, I do NOT. But it's not all about me is it?
Then, of course I have to ask myself the question "is it a matter of will not, don't want to, or can not?". I have learned being sick for 11 1/2 years, that there are times when I feel pretty awful and can still force myself to muddle my way through things ill, dizzy, weak. Often I reap the repercussions for days or weeks, but still, I can force myself on the day for the sake of someone I love, or something I love to do. And that way I build nice memories even if I suffer afterwards for it.
Then there are times when I simply can not. I'm too dizzy to stand w/o risking fainting, too fluey and hoarse and weak to manage visiting/talking, too much vertigo to be in lit room with multiple stimuli, or emotionally, just not able to tough out all my symptoms in public, on a plane, at a party, especially when the outward appearance indicates I am well and "looking great".
I have done this trip and muddled through many Christmases now. I often have some weeks to recover, but even if it takes much of January, I seem to be able to do it. On the other hand, admittedly, if I am honest, my health seems to have gone down hill very slowly over the last number of years. Is it as a result of a more and more deconditioned body? worsening POTS?, an aging body, one less able to fight this ongoing immune disease? I can't blame my activity because I seem to be 'doing' less and less every year. Less social, less PhD, less travel.
Warning: gross symptom description follows:
Speaking of immune disease, get this! My sore throat last week ended up being 3 large and one smaller open sore on my left tonsil. It was (and still is a little) swollen, but I just couldn't figure out why it was so hard to eat, drink, swallow. Then, after 5 days or so I pulled back the little flap of skin in front of my tonsil to reveal 3 huge open sores taking up most the surface of the tonsil (GROSS, sorry).
I get these sores fairly often, usually just one or two and my NP has seen them. She says "they look viral" sigh. There was no point in going in for them, but I really do wonder what causes them? Three of the four are healed now and while I am still having a little residual left ear and throat pain, it's much much improved.
So back to resting for me, in hopes of managing travel in a few days.
And on a positive 'artsy' note, here's a fun project I've undertaken in the cold. I put some metal bowls of water outside on the porch with a weighted cup in the middle. I let them freeze, then warmed them enough to remove the cup and bowl and voila! an ice lantern….
The only thing I didn't think about is that I can't really enjoy them as I'm laying inside in bed or on the couch. Still, I put them on the front porch and smile when I think of people walking by thinking (what the heck are those? Lovely).
It doesn't help that I am up and down health wise lately. Friday I wasn't too bad and even managed a haircut with someone to drive me. Today I am by no means strong enough, or well enough for a 4 to 5 hour travel day. Do I want to go? Well, despite my family's craziness, I really do want to go and help celebrate. But when being ill is taken into account, I do NOT. But it's not all about me is it?
Then, of course I have to ask myself the question "is it a matter of will not, don't want to, or can not?". I have learned being sick for 11 1/2 years, that there are times when I feel pretty awful and can still force myself to muddle my way through things ill, dizzy, weak. Often I reap the repercussions for days or weeks, but still, I can force myself on the day for the sake of someone I love, or something I love to do. And that way I build nice memories even if I suffer afterwards for it.
Then there are times when I simply can not. I'm too dizzy to stand w/o risking fainting, too fluey and hoarse and weak to manage visiting/talking, too much vertigo to be in lit room with multiple stimuli, or emotionally, just not able to tough out all my symptoms in public, on a plane, at a party, especially when the outward appearance indicates I am well and "looking great".
I have done this trip and muddled through many Christmases now. I often have some weeks to recover, but even if it takes much of January, I seem to be able to do it. On the other hand, admittedly, if I am honest, my health seems to have gone down hill very slowly over the last number of years. Is it as a result of a more and more deconditioned body? worsening POTS?, an aging body, one less able to fight this ongoing immune disease? I can't blame my activity because I seem to be 'doing' less and less every year. Less social, less PhD, less travel.
Warning: gross symptom description follows:
Speaking of immune disease, get this! My sore throat last week ended up being 3 large and one smaller open sore on my left tonsil. It was (and still is a little) swollen, but I just couldn't figure out why it was so hard to eat, drink, swallow. Then, after 5 days or so I pulled back the little flap of skin in front of my tonsil to reveal 3 huge open sores taking up most the surface of the tonsil (GROSS, sorry).
I get these sores fairly often, usually just one or two and my NP has seen them. She says "they look viral" sigh. There was no point in going in for them, but I really do wonder what causes them? Three of the four are healed now and while I am still having a little residual left ear and throat pain, it's much much improved.
So back to resting for me, in hopes of managing travel in a few days.
And on a positive 'artsy' note, here's a fun project I've undertaken in the cold. I put some metal bowls of water outside on the porch with a weighted cup in the middle. I let them freeze, then warmed them enough to remove the cup and bowl and voila! an ice lantern….
The only thing I didn't think about is that I can't really enjoy them as I'm laying inside in bed or on the couch. Still, I put them on the front porch and smile when I think of people walking by thinking (what the heck are those? Lovely).
Monday, December 16, 2013
Rest Days
I'm been taking some rest days. Still doing things around home, but no outings.
As with much of North America, winter has come early here. While southern Ontario is actually getting winter weather in December, we are getting winter weather and then some! We have been in a deep freeze for the best part of two weeks now, maybe three. Lots of below -20 C temperatures with wind chills as low as -40 C! Right now, it is snowing heavily out, but because it's a good -20, the snow is very light and swirly. It's lovely.
The good news: two weeks from tomorrow I will be back home here post-Christmas travel and post-50th wedding anniversary for my parents. I am telling myself over and over that I'll make it through and it might even be OK. I need to keep my expectations of myself low despite all the pressures and stress that are inevitable. Send good thoughts my way, if you will.
My friend/roommate has been a life-saver helping me - picking up items for the party and Christmas, mailing some cards and presents, and getting my prescriptions, so that I don't have to crash from outings.
I've also enjoyed some movies the last few days. I saw "The Help". I'd read the book and liked it, but had some mixed feelings about it too. But I thought the movie was really well done. I also saw "It's a Wonderful Life". I know most people have seen it a hundred times, but I don't think I'd actually sat down (or lay down in this case) and seen the whole thing. Perhaps as a young child, but I didn't remember the story. I really enjoyed it.
On the negative, I have some kind of weird infection or flare or who knows what???? My friend/housemate has a cold and when she started her cold, I had a nasty sore throat (which I usually get with a cold - different than my M.E. sore throat). But the nasty sore throat hasn't gone away, it's been 5 days, and it hasn't developed into a cold??
It is pretty painful and one tonsil is swollen, but is it painful enough to be strep? It doesn't seem like it. I have a low grade fever today too, but that is also common for me with a flare. So to be honest, I still don't know if this is a flare or something else….every hour I change my mind: "it's just M.E.", "it's strep", "it's viral tonsillitis", "it's a very very slow moving cold". Place your bets.
If I don't post again before my travel, have a wonderful _________ (insert seasonal holiday which you celebrate). If you are ill, be kind to yourself and don't let others' expectations of you ruin your holidays.
As with much of North America, winter has come early here. While southern Ontario is actually getting winter weather in December, we are getting winter weather and then some! We have been in a deep freeze for the best part of two weeks now, maybe three. Lots of below -20 C temperatures with wind chills as low as -40 C! Right now, it is snowing heavily out, but because it's a good -20, the snow is very light and swirly. It's lovely.
The good news: two weeks from tomorrow I will be back home here post-Christmas travel and post-50th wedding anniversary for my parents. I am telling myself over and over that I'll make it through and it might even be OK. I need to keep my expectations of myself low despite all the pressures and stress that are inevitable. Send good thoughts my way, if you will.
My friend/roommate has been a life-saver helping me - picking up items for the party and Christmas, mailing some cards and presents, and getting my prescriptions, so that I don't have to crash from outings.
I've also enjoyed some movies the last few days. I saw "The Help". I'd read the book and liked it, but had some mixed feelings about it too. But I thought the movie was really well done. I also saw "It's a Wonderful Life". I know most people have seen it a hundred times, but I don't think I'd actually sat down (or lay down in this case) and seen the whole thing. Perhaps as a young child, but I didn't remember the story. I really enjoyed it.
On the negative, I have some kind of weird infection or flare or who knows what???? My friend/housemate has a cold and when she started her cold, I had a nasty sore throat (which I usually get with a cold - different than my M.E. sore throat). But the nasty sore throat hasn't gone away, it's been 5 days, and it hasn't developed into a cold??
It is pretty painful and one tonsil is swollen, but is it painful enough to be strep? It doesn't seem like it. I have a low grade fever today too, but that is also common for me with a flare. So to be honest, I still don't know if this is a flare or something else….every hour I change my mind: "it's just M.E.", "it's strep", "it's viral tonsillitis", "it's a very very slow moving cold". Place your bets.
If I don't post again before my travel, have a wonderful _________ (insert seasonal holiday which you celebrate). If you are ill, be kind to yourself and don't let others' expectations of you ruin your holidays.
Sunday, December 8, 2013
Calm in the Storm
Overall, I've had a rough month. I've been especially crashed and unable to do 'outings' without nasty consequences. That being said, I do have moments, especially in the mornings, where I don't feel terrible.
This illness is like having a monster living inside me. If I: a) get lucky, and b) don't move too much, sometimes the monster falls asleep briefly. I can lay in bed or in my lazy boy and close my eyes and 'feel' or imagine that my body isn't sick. It's like a calm in the storm.
I did manage to finally do a non medical appointment outing. It was super cold out Saturday morning -20 C with a -30 windchill, and the sun was shining. Partly due to my days as a winter guide, I love winter. I could feel the lure of the sun and cold temps. So I bundled up and drove down the hill to the waterfront. I spent about 10 mins down there, and I took some photos.
The ice that had formed on the plants was incredible with the light reflecting off and through it. I was in awe by this amazing picture of beauty, I've never seen anything quite like it before.
Last week, I managed to print just a black and white print I'll share here, also reminiscent of my former days out on trail in winter with sled dogs. It's not my best print ever, but there is something about it I do like. With most my less sick moments these days I've been doing art. Of course lots of it doesn't 'work', but it doesn't seem to stop the images bombarding me as I lay in bed….
I have my holter monitor test this week which means two outings two days in a row, hopefully I'm having a stronger week. I wear a HR monitor and a cuff which takes my BP every 1/2 hour for 24 hours. Wish me luck.
Sunday, December 1, 2013
The Invisible Brick Wall
Imagine for a moment that you lived your life always trying to avoid colliding with an invisible brick wall. (If you have M.E., I probably don't have to write another word - you 'get' the analogy).
For me, life with M.E. is like life with an invisible brick wall.
Since the wall is invisible, I obviously don't know where it is at any given time. Experience has given me a good sense of where it might be lurking, but I can never be sure because it moves around.
So any time I do anything at all requiring energy, I risk a painful collision. I hit this wall and hurt myself, and it can hurt pretty badly - the damage can take days or even weeks to recover from. I mean it's a brick wall, not an invisible goose-down wall.
I hit the wall hard this week.
Monday, I had my cardiologist appointment where I did a test and then he spent a long time in consult with me.
Then Wednesday, bored and sick, I decided to do an errand to the gluten free bakery…which isn't far. The thing is, I knew where abouts the wall was that day, and I needn't have even left the house to ram my head up against it. What I'm saying, is I knew there was a risk. But I went anyways, and since then have been in pretty bad shape.
Another time, I may have done that errand without consequences, but not this time. I'm on day 5 of the crash, and while I thought I was a bit better yesterday, today I'm much worse again. I have weakness, shakes, weird facial/eye twitching, sore throat, painful lymph (arms), breathing ache/heaviness and dizziness….even a mild headache.
Personally, December is always a hard month for me, even M.E. aside. I am affected by the lack of light (I use a full spectrum lamp to help with this) and I am often stressed about Christmas. How do you shop when you: a) have very little money, and b) store outings usually cause crashes (actually, I'm doing pretty well with the online shopping this year). I also usually travel to see family and then endure a 2-4 week crash in January, not to mention time with people who like to either ignore the fact I'm sick, and/or treat me like it's an emotional/mental illness. Fun times! This year also includes my parent's 50th wedding anniversary. Right now I'm too sick to travel, but hopefully in a week or two I will have picked up.
All I can say, is that if I make it through December with only minor damage/consequences, I will be happy.
On a complete aside, I've been doing some reading on POTS, and it's quite an interesting condition. For one, there is a lot of disparity in the research looking at the M.E./CFS - POTS connection. I've read studies that say as few as 20% of M.E. patients have it, to as many as 90% have POTS or at least some form of OI (orthostatic intolerance).
The cardiologist I saw suspected in my case, the POTS/OI was triggered by the severe Mono infection I got, the one that also triggered the M.E. since the OI symptoms were there from the get go. Reading through the symptoms of POTS, it could almost be my soul diagnosis, except it doesn't explain any of my immune issues (fevers, chronic pharyngitis, painful lymph nodes and a propensity to get certain infections easily). Also, pure POTS patients don't get post exertional malaise (PEM) - so far according to research, PEM is unique to M.E.
I have been having fun using my blood pressure heart rate monitor when I'm feeling especially poorly. It doesn't seem to correlate exactly to how poor I'm feeling, however, I can sense when my heart rate is pretty high, just because my hands turn purple from blood pooling, and I get a sense of anxiousness/needing to lay down. I really don't need to do more than stand up to for my heart rate to jump 50-70 beats higher than when my legs are elevated, and into the tachycardia zone. Especially as I start the drug, it will be good to be tuned into my HR so I know what 'improved' feels like if the drug actually helps.
For me, life with M.E. is like life with an invisible brick wall.
Since the wall is invisible, I obviously don't know where it is at any given time. Experience has given me a good sense of where it might be lurking, but I can never be sure because it moves around.
So any time I do anything at all requiring energy, I risk a painful collision. I hit this wall and hurt myself, and it can hurt pretty badly - the damage can take days or even weeks to recover from. I mean it's a brick wall, not an invisible goose-down wall.
I hit the wall hard this week.
Monday, I had my cardiologist appointment where I did a test and then he spent a long time in consult with me.
Then Wednesday, bored and sick, I decided to do an errand to the gluten free bakery…which isn't far. The thing is, I knew where abouts the wall was that day, and I needn't have even left the house to ram my head up against it. What I'm saying, is I knew there was a risk. But I went anyways, and since then have been in pretty bad shape.
Another time, I may have done that errand without consequences, but not this time. I'm on day 5 of the crash, and while I thought I was a bit better yesterday, today I'm much worse again. I have weakness, shakes, weird facial/eye twitching, sore throat, painful lymph (arms), breathing ache/heaviness and dizziness….even a mild headache.
Personally, December is always a hard month for me, even M.E. aside. I am affected by the lack of light (I use a full spectrum lamp to help with this) and I am often stressed about Christmas. How do you shop when you: a) have very little money, and b) store outings usually cause crashes (actually, I'm doing pretty well with the online shopping this year). I also usually travel to see family and then endure a 2-4 week crash in January, not to mention time with people who like to either ignore the fact I'm sick, and/or treat me like it's an emotional/mental illness. Fun times! This year also includes my parent's 50th wedding anniversary. Right now I'm too sick to travel, but hopefully in a week or two I will have picked up.
All I can say, is that if I make it through December with only minor damage/consequences, I will be happy.
On a complete aside, I've been doing some reading on POTS, and it's quite an interesting condition. For one, there is a lot of disparity in the research looking at the M.E./CFS - POTS connection. I've read studies that say as few as 20% of M.E. patients have it, to as many as 90% have POTS or at least some form of OI (orthostatic intolerance).
The cardiologist I saw suspected in my case, the POTS/OI was triggered by the severe Mono infection I got, the one that also triggered the M.E. since the OI symptoms were there from the get go. Reading through the symptoms of POTS, it could almost be my soul diagnosis, except it doesn't explain any of my immune issues (fevers, chronic pharyngitis, painful lymph nodes and a propensity to get certain infections easily). Also, pure POTS patients don't get post exertional malaise (PEM) - so far according to research, PEM is unique to M.E.
I have been having fun using my blood pressure heart rate monitor when I'm feeling especially poorly. It doesn't seem to correlate exactly to how poor I'm feeling, however, I can sense when my heart rate is pretty high, just because my hands turn purple from blood pooling, and I get a sense of anxiousness/needing to lay down. I really don't need to do more than stand up to for my heart rate to jump 50-70 beats higher than when my legs are elevated, and into the tachycardia zone. Especially as I start the drug, it will be good to be tuned into my HR so I know what 'improved' feels like if the drug actually helps.
Subscribe to:
Posts (Atom)