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.
Sunday, January 25, 2015
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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