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.
Wednesday, February 11, 2015
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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