Sooooo exhausted.
I haven't been sleeping great. I thought it was the new dog, Teagan. Last night I had her sleep downstairs in the back two rooms (instead of with me) and still found myself waking up too early. Not sure why.
I do best with 9 or 10 hours of sleep. Prior to becoming sick I did fine on 7 or 8. Supposedly I have a sleep disorder. I went to a sleep clinic. They said I had insomnia with multiple awakenings as well as an inability to get into deep sleep (phase 3 and 4) which are the restorative phases. However, I didn't sleep well at the clinic due to being hooked up to a bunch of wires and stuff, so I don't think it was a fair assessment.
Still, I seem to need more sleep than I used to and my symptoms get worse if I don't get it. Of course I do A LOT less than I used to and spend only about 12 hours of a day NOT resting. (Resting=laying down either sleeping or eyes closed). Of these 12 hours, I'm laying down (reading, watching TV, online) for about 6-9 of them. Therefore, I spend only 3-6 hours a day sitting or standing, NOT laying down. When I work it out like this it almost blows my mind!!
If I compare this to pre-illness, it's a huge contrast. Before becoming ill, I probably spent the 8 hours I slept laying down, along with the occasional nap or movie-watching...so on average I was sitting or standing 13-16 hours a day compared to my typical day now which is 3-6. I guess I could get depressed about this, however, my specialist who deals daily with chronically ill people like me, stresses comparing myself to earlier in the illness rather than to my pre-illness self.
Since when I first got ill, I see very moderate improvements that I've made. I mean for one, I can stand for longer periods of time than I used to. And if I don't "push" too hard and crash, I can maintain some quality of life through restful activities such as art, reading and writing. I approach life now with a completely different mind-set. I've shifted my expectations, my hobbies, even curtailed my ideas of "success". It's been a whole paradigm shift, but it's helped. Otherwise I'd be so depressed about everything I've lost and everything I love and can no longer do.
Anyways, I'm fading, so I'm off to rest.....
Tuesday, June 30, 2009
Sunday, June 28, 2009
symptoms
The dogs are bored. They want me to take them for a walk. I will, even if it's only 1/4 of a block....just not yet.
My energy is a little better than last week, but I still feel "delicate".
I'm trying to take it easy, rest up for the PhD course that starts in just over a week.
This illness comes with lots of symptoms....I try to avoid talking about them, but sometimes it's hard because I'm having to live/endure them at some level constantly.
However, for me, the symptoms are pretty much a broken record. Most of them come and go (cycle) depending on how bad I'm feeling. But I rarely get a new symptom after 7 years. My main symptoms are viral and immune (sore throat, painful lymph nodes, low grade fever, body/chest ache) along with fatigue, weakness, tremor, and dizziness (of several varieties). I also seem to be more susceptible to certain infections - especially intestinal and sinus.
But right now I'm dealing with a new symptom, one that's hard to figure out. I'm not sure if it's connected to the M.E. or whether it's something completely different.
In March I started to get these small patches on my legs. It looked like I was bleeding under the skin.
I also seem to be getting lots of bruising on my legs.
And now, over the last week or so, I've been developing these raised, pimple like sores that turn into bright red patches....Some of them itch a little, many of them are pretty much non-itchy/painless. However, they're spreading. They started on my lower legs, now they're also on my knees, thighs, elbows, hands and feet.
I'm not sure if I'll get them checked out or not....
The problem is, getting into my NP or Doctor takes two or three weeks, and going to a walk-in, the doctors are not familiar with this illness - so they don't have any idea of the big picture. At the walk-in it comes down to lying (saying nothing else is going on) or risking the "I have M.E./CFS" revelation and the inevitable skepticism or ignorance that follows.
Oh well, I'll stick it out for a few more days and see if spreads or gets any worse.
My energy is a little better than last week, but I still feel "delicate".
I'm trying to take it easy, rest up for the PhD course that starts in just over a week.
This illness comes with lots of symptoms....I try to avoid talking about them, but sometimes it's hard because I'm having to live/endure them at some level constantly.
However, for me, the symptoms are pretty much a broken record. Most of them come and go (cycle) depending on how bad I'm feeling. But I rarely get a new symptom after 7 years. My main symptoms are viral and immune (sore throat, painful lymph nodes, low grade fever, body/chest ache) along with fatigue, weakness, tremor, and dizziness (of several varieties). I also seem to be more susceptible to certain infections - especially intestinal and sinus.
But right now I'm dealing with a new symptom, one that's hard to figure out. I'm not sure if it's connected to the M.E. or whether it's something completely different.
In March I started to get these small patches on my legs. It looked like I was bleeding under the skin.
I also seem to be getting lots of bruising on my legs.
And now, over the last week or so, I've been developing these raised, pimple like sores that turn into bright red patches....Some of them itch a little, many of them are pretty much non-itchy/painless. However, they're spreading. They started on my lower legs, now they're also on my knees, thighs, elbows, hands and feet.
I'm not sure if I'll get them checked out or not....
The problem is, getting into my NP or Doctor takes two or three weeks, and going to a walk-in, the doctors are not familiar with this illness - so they don't have any idea of the big picture. At the walk-in it comes down to lying (saying nothing else is going on) or risking the "I have M.E./CFS" revelation and the inevitable skepticism or ignorance that follows.
Oh well, I'll stick it out for a few more days and see if spreads or gets any worse.
Friday, June 26, 2009
Blogging instead of reading....
I'm supposed to be reading.....but I'm procrastinating. Which today involves checking my emails obsessively. Believe it or not, no one's emailed me in the last 5min....or the 5min before that!
I'm also reading other people's blogs, eating, and reading Simpson's quotes (which have me in fits of the giggles).
One thing about not working/being on disability, is that I have leisure time...more leisure time than you can imagine. Unfortunately the comment I get "must be nice" isn't really appropriate. It's not nice being so sick I can't work or enjoy most of the activities I used to (I rarely go out, socialize, I no longer camp, participate in sports or outdoor activities, work). Yes, I have excessive amounts of leisure time, but I'm seldom well enough for it to feel like a holiday.
However, I believe that there is a silver lining to every cloud and that when the glass is half (or three quarters empty), there still might be something good left in there. There are moments where I DO enjoy my ample "free-time". While for the first few years it was unbearable not to be "doing" all the time, now I take pleasure in quiet moments. I have time to think, ponder, communicate with friends (online), read, do art (when I'm up to it). I can watch a bird out the window for an hour if I want. I can pet the dog(s). And today I can read Simpson's quotes and laugh until my gut hurts. All the little moments of beauty and pleasure that my former "healthy" self would have been too busy to experience.
I'm also reading other people's blogs, eating, and reading Simpson's quotes (which have me in fits of the giggles).
One thing about not working/being on disability, is that I have leisure time...more leisure time than you can imagine. Unfortunately the comment I get "must be nice" isn't really appropriate. It's not nice being so sick I can't work or enjoy most of the activities I used to (I rarely go out, socialize, I no longer camp, participate in sports or outdoor activities, work). Yes, I have excessive amounts of leisure time, but I'm seldom well enough for it to feel like a holiday.
However, I believe that there is a silver lining to every cloud and that when the glass is half (or three quarters empty), there still might be something good left in there. There are moments where I DO enjoy my ample "free-time". While for the first few years it was unbearable not to be "doing" all the time, now I take pleasure in quiet moments. I have time to think, ponder, communicate with friends (online), read, do art (when I'm up to it). I can watch a bird out the window for an hour if I want. I can pet the dog(s). And today I can read Simpson's quotes and laugh until my gut hurts. All the little moments of beauty and pleasure that my former "healthy" self would have been too busy to experience.
Thursday, June 25, 2009
Managing a PhD course with this illness: Pre-course jitters.
I'm immersed in reading. I'm reading for my upcoming CORE I PhD course. It runs during the month of July and is the main obstacle to my being able to participate in the PhD program. From the course outline it looks like 3 or 4 hours of class a day - every day for four weeks. Now considering that I have trouble with any outing beyond 3 hours without crashing, perhaps I'm a fool to even attempt this course.
(Case in point: I'm just pulling out of a crash caused by a 3 hour outing last Saturday).
In preparation, I thought I'd do all the readings ahead of time. So far I'm on track. The course starts in just over a week, there are 32 required readings and/or chapters, and I've completed all but seven.
It's interesting people's reactions to my attempt of this PhD. Most people seem to think I should be able to manage it, which to me, is pretty funny. It points to two possible points of view:
The reality is, since becoming sick seven years ago I have attempted to go back to work three times. In every single instance, within three weeks I was MUCH worse off and barely able to do more than lay in bed for weeks, months.
So why am I even attempting this? Well, if I can manage the one month push, then during the year, I'm pretty sure I'll be able to manage the schedule. I can do most of my work (reading, writing, etc.) from home and even in bed if necessary. I know I am capable of this because this is how I managed to complete the Masters...mostly from home - much of it in bed.
However, given my illness quotient this past week (very sick, weak), I won't even make it through one day of class.
While on the one hand, I really want to be able to do this PhD, on the other hand, there is a limit to how much I want to sacrifice. For example, if I'm "crashing" really hard, it's possible I could relapse and be in bed for months (years?) and that's just not worth it to me.
I also find that having to endure feeling ill for seven years (imagine having what feels like influenza or Mono for seven years), my illness tolerance has gone down. So if I'm starting to feel really ill during the course, I'm pretty sure I won't "push through" or endure it for long before listening to my body if it's telling me I've taken on too much.
We live in a culture that tells us to be ill is to be weak. We are taught to value toughness, perseverance. When people are poor, disabled, unemployed, whatever, we are socialized to think this is an individual fault or flaw - lack of character, laziness. I mean just look at how people try to stamp an individual, behaviourist cause on chronic illnesses. "I wouldn't get ________ because I - whatever - eat well, exercise, don't get stressed, push though."
One thing I've learnt both through reading about oppression, critical pedagogy and also through having this illness, is that our culture always seems to want to blame the individual for many things that are societal, cultural or environmental. (I know I'm ranting.....but it's true). I think these delusions "I'd never be on welfare", "I'd never get that illness", "that person's lazy" that points a finger at individual behaviour helps us feel less afraid that there are things beyond our personal control. Also, it keeps people from having to look at and act on the true societal or environmental causes or our problems.
To summarize this blog:
- I'm worried I won't manage this course
- I'm worried I'll relapse considerably
- I'm motivated/want to succeed and manage it
- I'm angry about the way our society perceives and treats people with chronic illness.
- I'm going to listen to my body during this upcoming experience and do what I know is right rather than buying into other people's perceptions and/or societal "stories" that will ultimately hurt me.
(Case in point: I'm just pulling out of a crash caused by a 3 hour outing last Saturday).
In preparation, I thought I'd do all the readings ahead of time. So far I'm on track. The course starts in just over a week, there are 32 required readings and/or chapters, and I've completed all but seven.
It's interesting people's reactions to my attempt of this PhD. Most people seem to think I should be able to manage it, which to me, is pretty funny. It points to two possible points of view:
- Either people don't realize how sick/functionally disabled I am (which in all fairness is possible due to the fact that I live alone and when I'm out of the house and social I'm usually having a good day or some good hours - people don't see the days it takes me to recover or the days where I'm too sick to leave the house or my bed)
- Or people believe managing to attend the PhD course is a motivational issue (rather than a disability/physical illness one).
The reality is, since becoming sick seven years ago I have attempted to go back to work three times. In every single instance, within three weeks I was MUCH worse off and barely able to do more than lay in bed for weeks, months.
So why am I even attempting this? Well, if I can manage the one month push, then during the year, I'm pretty sure I'll be able to manage the schedule. I can do most of my work (reading, writing, etc.) from home and even in bed if necessary. I know I am capable of this because this is how I managed to complete the Masters...mostly from home - much of it in bed.
However, given my illness quotient this past week (very sick, weak), I won't even make it through one day of class.
While on the one hand, I really want to be able to do this PhD, on the other hand, there is a limit to how much I want to sacrifice. For example, if I'm "crashing" really hard, it's possible I could relapse and be in bed for months (years?) and that's just not worth it to me.
I also find that having to endure feeling ill for seven years (imagine having what feels like influenza or Mono for seven years), my illness tolerance has gone down. So if I'm starting to feel really ill during the course, I'm pretty sure I won't "push through" or endure it for long before listening to my body if it's telling me I've taken on too much.
We live in a culture that tells us to be ill is to be weak. We are taught to value toughness, perseverance. When people are poor, disabled, unemployed, whatever, we are socialized to think this is an individual fault or flaw - lack of character, laziness. I mean just look at how people try to stamp an individual, behaviourist cause on chronic illnesses. "I wouldn't get ________ because I - whatever - eat well, exercise, don't get stressed, push though."
One thing I've learnt both through reading about oppression, critical pedagogy and also through having this illness, is that our culture always seems to want to blame the individual for many things that are societal, cultural or environmental. (I know I'm ranting.....but it's true). I think these delusions "I'd never be on welfare", "I'd never get that illness", "that person's lazy" that points a finger at individual behaviour helps us feel less afraid that there are things beyond our personal control. Also, it keeps people from having to look at and act on the true societal or environmental causes or our problems.
To summarize this blog:
- I'm worried I won't manage this course
- I'm worried I'll relapse considerably
- I'm motivated/want to succeed and manage it
- I'm angry about the way our society perceives and treats people with chronic illness.
- I'm going to listen to my body during this upcoming experience and do what I know is right rather than buying into other people's perceptions and/or societal "stories" that will ultimately hurt me.
Tuesday, June 23, 2009
"The day after"
I have M.E./CFS. In fact I just celebrated (or didn't celebrate) my seventh year of illness. It blows my mind to think I've been ill for seven years. There have been months where I've felt awful and sick every single moment of every day. But mostly this illness is about cycles - ups and downs, hope and crushed hope.....and ultimately, endurance.
So yesterday was my "crash". Sometimes I crash for days.....sometimes just a day. Yesterday I felt like the flu had hit - I woke up in the a.m. and my body hurt....achy. My throat hurt, the lymph nodes in my arms throbbed and when I breathed there was a deep-seated ache. Then there's the fatigue which is a ridiculous word for the experience of it....it's like calling a nuclear bomb a match. I mean normal people get tired and fatigued, but the fatigue with this illness is in a different category.
So I have a new dog. My 14 year old husky Merlin, isn't doing too well. She has laryngeal paralysis which means her larynx is misshapen. On a bad day she has attacks where she struggles to breathe. I've had Merlin during this whole illness and she's been my best friend, biggest 
support, and a constant companion in my life. It will be so hard to lose her. So why did I get another dog? Honestly, I'm not exactly sure. But this one year old golden retriever came up (she needed a home) and I thought I'd go meet her. I brought her home on a trial and now she's been here two weeks. So I have a sick old dog and a young (very well behaved) one.
support, and a constant companion in my life. It will be so hard to lose her. So why did I get another dog? Honestly, I'm not exactly sure. But this one year old golden retriever came up (she needed a home) and I thought I'd go meet her. I brought her home on a trial and now she's been here two weeks. So I have a sick old dog and a young (very well behaved) one.
So on Sunday my friend Jan and I took Teagan and Merlin swimming in Lake Superior. I did a little swimming too - it was AWESOME. The water was so clean and cool. Teagan was hilarious swimming around, chasing sticks. I was probably out of the house at most - 3 hours.
So yesterday was my "crash". Sometimes I crash for days.....sometimes just a day. Yesterday I felt like the flu had hit - I woke up in the a.m. and my body hurt....achy. My throat hurt, the lymph nodes in my arms throbbed and when I breathed there was a deep-seated ache. Then there's the fatigue which is a ridiculous word for the experience of it....it's like calling a nuclear bomb a match. I mean normal people get tired and fatigued, but the fatigue with this illness is in a different category.
So I spent the day - well most of the day - in bed....resting.....feeling sick.....wishing I didn't have to live through this, but knowing in a day or perhaps a few days I'd be back to feeling just somewhat sick rather than "I'm dying" sick.
It's hard not to feel like "crash" days are a punishment for doing anything fun. But with this chronic illness almost nothing is without consequence - I weigh every decision and outing based on whether it's enough to cause a crash, and if so, is it a "crash-worthy" event? In this case it was - just so long as the crash doesn't extend beyond 3 days.
Monday, June 22, 2009
Ahhh....back to the blogging world
Hello!!!
Friends, Family and Fans.
I've decided to blog again. Put my voice out there with millions of others to be read (or not to be read, as the case may be).
I blogged for a while once - it was a good outlet, however, I found it fairly self-indulgent. I figured I might as well journal.
However, there is something interesting/intriguing about sharing my thoughts with the cyber world...adding my two cents.
I live a fairly isolated life due to chronic illness; still, I'm working on a graduate degree, so my mind is often spinning. I thought blogging might be a method to play with interesting thoughts and ideas as well as my daily life experiences in a creative way.
STAY TUNED...coming soon.....photos, interesting quotations, and thoughts on educational philosophy and what it's worth....ahhhhh
Friends, Family and Fans.
I've decided to blog again. Put my voice out there with millions of others to be read (or not to be read, as the case may be).
I blogged for a while once - it was a good outlet, however, I found it fairly self-indulgent. I figured I might as well journal.
However, there is something interesting/intriguing about sharing my thoughts with the cyber world...adding my two cents.
I live a fairly isolated life due to chronic illness; still, I'm working on a graduate degree, so my mind is often spinning. I thought blogging might be a method to play with interesting thoughts and ideas as well as my daily life experiences in a creative way.
STAY TUNED...coming soon.....photos, interesting quotations, and thoughts on educational philosophy and what it's worth....ahhhhh
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