updates

Spending time with my parents (who've been visiting) has taken most my energy lately. However, it's been really nice to see them. I feel like I'm pulling out of the most recent relapse/crash, which is great. This winter/spring seems to have been a fairly significant relapse followed by several smaller crashes/relapses. We'll see if this good spell lasts through the week as I have quite a bit to do school/work wise.

This spring during the relapse I often felt just too unwell to work on school stuff. Then through lack of working on stuff I just lost momentum and motivation altogether. I hope if I'm feeling a bit better I can get back into the swing of things again. In the past I've been able to put in one to three solid hours of work at home a day.

I also have a big decision looming (whether or not to try to do the one month course in S. Ontario this summer).

I'll post again within the week for the poll of the month and some recent photos.

p.s. If any of you who have M.E./CFS are interested in a quiet, friendly, low-key forum, you might want to check out Bluebutterflies. http://cfsandfmshelp.proboards.com/index.cgi?action=recent
I've been part of this forum for a couple years and it's great. I like that there aren't 100 posts a day to keep up with. We would welcome a few new members.

Lack of Blogging

Sorry for my recent hiatus. First I had another couple REALLY bad weeks and just didn't have it in me, and now my parents are visiting from the south. The last two days have been pretty decent. I seem to be rebounding. I hope it lasts.....maybe I can do the course I'm supposed to do this summer after all.

M.E./CFS Awareness Day

Since most of those who read this blog already know all too intimately about M.E./CFS, I won't create a long post today.
However, if you would like to read some facts about the illness, Laurel did an excellent job on her blog of putting together a succinct educational post: http://dreamsatstake.blogspot.com/2010/05/may-12th-mecfs-awareness-day.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+DreamsAtStake+%28Dreams+At+Stake%29

Also, the Myalgic Encephalomyelitis (M.E.) association of Ontario put out the following facts sheet which is OK....I don't necessarily like M.E. being clumped with FM as they are different illnesses (and I have M.E. only). However, I think they did it just for the statistics section.
http://www.meao-cfs.on.ca/files/ME-FactSheet.pdf

Here's what I have to say about the illness:

1. If there is one piece of education I'd like to share today, it is this: M.E. is NOT "chronic fatigue"....Being chronically tired in the way a healthy, but sleep deprived or overworked person gets, is nothing like the neurological, muscular fatigue and weakness associated with M.E. Fatigue is only ONE symptom of a multi-system illness.

2. Also, people with M.E. are not laking in motivation. They are seriously ill. If you read any of the above facts sheets (links) you will see that most NEVER return to complete health and the majority are unable to work full-time. Will power and gumption are not solutions for M.E. sufferers, in fact, they can be our worst enemies because with this illness if you push, you get sicker....and sicker...

SO what you can do is:

-take M.E. seriously (like you would any better known illness or disease)
-try to be supportive and empathetic of those who suffer from it
-advocate for M.E. sufferers by spreading the word about the seriousness of the illness and contradicting those who think it's about being tired, depressed, or lazy - patients have been stigmatized and marginalized for too long!
-advocate for better research and funding
-don't call M.E./CFS "chronic fatigue". If you can't say Myalgic Encephalomyelitis, call it "M.E." or M.E./CFS.

Help vs. Independence

I was just thinking how sometimes it's really nice to have help. But how it's a mixed blessing.

For example, I'm putting in two little native plants gardens out front. Now to say I'm doing it is a real stretch. For one, I'm not digging the beds. I may or may not be able to help get the plants....The only parts I can do are make garden plans, sit in the grass and plant stuff...and in my good moments I am able to weed a little too.

Today my friends/roommates spent a few hours working hard digging out one of the beds. It's really hard not to join in. I took some weeds out of the roses then I sat on the porch and watched them work hard for a while-even watching was tiring. I felt a mix of excitement and appreciation along with feeling bad that someone else was doing all the work so that I can have a garden. Partly, it's that I want to join in....but I know it will make me sick and I'll pay for it later; also, while they probably don't mind doing stuff for me, I don't always enjoy "being done for". In exchange for accepting help I lose a sense of independence and feelings of self-worth.

On the other hand, in the big scheme of things, if no one ever accepted help, no one would ever get to help people (which can feel really good).

I've had a fever most the weekend and my throat is quite swollen. The flu ache/chest ache is there too, but the fatigue is only moderate. I mean M.E./cfs moderate....not moderate for someone who's "well". If a "normal" stepped into my body for the day they would experience the worst weakness of their lives I would expect.

Joe and I also collected some rocks later this afternoon for the border of the garden. While I kept myself from carrying any big ones or walking very far, I expect I'll pay for it within the next 48 hours...still it was fun, and sometimes it's worth just saying "screw it" for the chance to feel even a little active.

My pole this month (on the right) will be about this topic of how hard/easy it is to accept help and assistance.

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.