Rough Day

We've had two beautiful warm spring days here. I've had the urge to do all kinds of things. But I've also been feeling ill and my stamina has been poor. I did too much yesterday; then today I spent some time in the yard, planting some seedlings. I'm going to have a little herb garden and I thought I'd start some of the herbs indoors and save money rather then buying plants this year. So I was sitting on the lawn planting seeds in little pots.

Just that short 1/2 hour to an hour outside and I was completely drained - it caused tremors, dizziness, and an intense feeling of having the flu. It's just so frustrating sometimes to be so motivated, yet have a body that just won't cooperate.

Then I lay in bed feeling sick and sorry for myself, it's pathetic. Maybe I need to go back to scheduling rests throughout the day. My specialist used to have me on a regiment like this and even though it didn't always improve my status, it helped avoid these awful crashes. Right now I'm resting lots, I'm just not doing any preumptive resting. On my better days I rest less....I'm not on a strict schedule like I once was.

Up and down week.

Health wise it's been an up and down week. Most afternoons spent in bed feeling really ill, and the occasional morning feeling fairly decent. Still having issues with the throat. Blisters on my tonsils and the back of my throat again this week but at least I haven't had many fevers. I've had tremors in my legs on and off this week too. I haven't had this symptom in ages. It's one of the most annoying, disturbing symptoms for me.

On Thursday we went for a few hours out to the Sleeping Giant - one of the most beautiful places I've ever been to (and considering the natural places I've been, that's saying something).

I'm going to post a few photos.

10 things about me....

My blogging buddy Treya
http://jen-mecfs.blogspot.com/2010/03/10-things-about-me.html
tagged me to write a list of 10 things about me.

For some reason I'm finding this difficult. Perhaps because I don't really do a lot. I guess one thing about me is I'm an expert at laying around all day doing nothing (hee hee)...But I'll give it my best shot:



1. My favourite foods are corn on the cob (fresh), avocado, berries, peanut butter and chocolate.

2. While I had some brain fog when I first got ill and constant pressure headaches, those went away after the first three or four years. Cognitively I am not a typical M.E./cfs patient so I can read. I read LOTS. Between reading for school (the PhD) and fiction I probably spend about 3-5 hours a day reading. I love nothing more than a good novel - the kind of novel that takes me into the life of some other person, a novel where I'm immersed in new perspectives, a novel where I think, cry, and laugh.


3. I took 11 years of classical piano lessons (which doesn't mean I can play well).

4. I spent 5 falls as a dog-trainer, training sled dogs (both my own dogs and dogs for an organization that offered dog sledding trips).

5. My favourite time of day is in the morning when I don't feel as sick, and when the potential of the day is still unleashed. (Also, I LOVE coffee, and I let myself drink two mugs full each morning).

6. A few of my biggest hopes/dreams/goals are: to get better, make my own living thus ending my reliance on government disability, and to adopt a child.

7. The first thing I would do if I were well is go for a long run in the woods with my dog Teagan.

8. I've lived in three countries (Canada, England and the U.S.A.).

9. I love winter - snow, ice....everything seems so fresh, there's something special about winter skies - lots of purples and greys, and the light in the winter is unique (long shadows etc.). Also, I have so many good memories of being out in wilderness areas in the winter.

10. I'm doing my PhD research on wolf conservation and education....details to follow (eventually).

p.s. feel free to vote on this month's poll - I'm curious what brings meaning to your life.

Decent Weekend

I had a decent Easter weekend.

My good friend's birthday (celebrated at home, but I did bake a cake), then a small house-warming party, followed by Easter celebrated at home.

Thank goodness the relapse is over....I'm back to my normal which is a low level of feeling ill/fluey or malaise and a moderate level of fatigue - especially post-exertional fatigue. So if I'm careful, I can do some low-key things without feeling terrible or making my situation worse. THIS is such a CHANGE from the 6 1/2 week relapse where I was suffering from what felt like a fairly severe virus/immune problem every moment of every day!!!

I'm so thankful to feel a bit of a person again instead of just a sick body (draining me dry of mental, physical and emotional energy).

I'm hoping that's it for relapses this year....the occasional crash day here or there is to be expected.

In reaction to an article I read this week...

How very unlike me to post during the week.

I just had a few things on my mind that I wanted to spew onto this blog.

First of all, I read a very good article this week about M.E./cfs which included a discussion of the controversy over the XMRV (retrovirus). I wanted to provide a link to, as well as some personal comments on the article:

http://pharmexec.findpharma.com/pharmexec/article/articleDetail.jsp?id=661633&pageID=1&sk=&date=

The things that struck me are:

• It's so true M.E./CFS is an orphaned illness, we are an orphaned group of sickies - deserted for the most part by researchers, medical practitioners and governments (who fund research).


• The phrase "It's not a death sentence, it's a life sentence" couldn't be closer to the truth. For those of us with moderate and severe M.E./cfs it is a lot like being "locked up", unable to participate in so many aspects life.


• I'm not sure if the average life expectancy of those with M.E./CFS is really 55yrs as stated in the article (although I have heard 15 years shorter than average which might explain where that number came from), but surprisingly, this doesn't really scare me. When I think of being sick for another 16 years! I think that will be quite enough, thank-you....now if I get better or improve, I'm sure I'll want a good long life, but at this level of illness I'm not so sure that after 24 years of suffering through this illness I won't be ready to move on.

Sorry, I guess I got a little morbid there...I'm not without hope that I could improve or that there might even be some treatment available someday (although at this rate I'm skeptical!!!!).

I did too much last weekend and yesterday (big surprise). Today I whipped into the grocery store quickly and was standing there feeling so sick and dizzy and weak...close to passing out - asking myself "How is this my life?". I need to take it easy the next two or three days or I'll be back in relapse mode which I definitely don't want.

I've included two photos from my retreat last weekend in this post.

Definite improvement

I've definitely improved this week. I can't believe how much better I feel. I'm back to a low level of flu symptoms and ongoing fatigue, but not NEARLY as extreme or disabling as the past 6 weeks. Wow, that was hard....living in my body the last 6 weeks has been SO hard.

This week I've been able to get out of the house for an hour or two most days without consequences. I'm still needing 3 or 4 hours of bed time during the day and my usual evening on the couch, but overall, a real improvement.

I'm now on a little retreat. I needed a change of space after the long haul (six week relapse - imagine 6 weeks of influenza) so I'm taking a 2 day vacation in a little town south of Thunder Bay. The motel has a beautiful view of Lake Superior and a creek in the backyard. I hope driving here doesn't crash me, but so far so good. I'll post a few photos when I'm home.