I know words will never be able to come close to describing how horrible this disease is to experience, especially the crashes. Today "holocaust of the body" popped into my head. I feel so ill and sick and fluey - every cell screams for lack of energy. It is too much to even stand up, like torture. I want to curl up in a ball in bed and have it done with. But this too shall pass?? My brain knows this but it's hard to convince my body of it.
I am visiting friends in MN for the first time in more than two years. This is due to dealing with my mom's illness and passing a year ago and the subsequent family upheaval. Also, my own health situation which makes even riding a few hours in a car daunting. Right now I'm crashed and I wish I were home suffering in my own bed. I hope my friends who read this are having a better day than me. I'll post again when I'm feeling better.
Saturday, November 26, 2016
Tuesday, November 15, 2016
A few photos
I thought I'd share a few photos of some outings from the last month. I took my dad to a local waterfall on a really sunny Sunday and crashed horribly afterwards (from driving mostly). I also made it to my favourite local park with a creek in October. Also, I'm sharing my recent relief print, I'm really happy with it. It looks better (as all the dark ones do) on a screen due to the back lighting.
Saturday, November 5, 2016
Very brief update
I've had some very decent weeks and some pretty bad/sick ones. Just yesterday and today the weather has been WAY above normal temperatures for early November, so I've over-done it both enjoying the sun, and getting winterizing tasks done. This year, I'm not looking forward to winter. I hate being cold (I'm always cold) and my home is draughty. When I wasn't ill, I could get outdoors and be active in the winter enjoying the amazingness of it all. No longer. My joy/passion for winter has gone down hill.
As you know, one of my pet peeves about the media and their portrayal of M.E. is that they continue to reinforce the misconception that it's about being tired, therefore it can't be that bad and/or the average person can "know how it feels". Truthfully, it's a lot more than being tired. I think "weak" is a better descriptive...however, more importantly for me, over-doing it causes pretty significant influenza (aka SICK!!!) symptoms - sore throat, swollen glands, achy icky feeling, weakness, dizziness, chest/breathing ache. This is something that is unique to M.E. Healthy people don't get sick/worse from activity, and the studies that have been done show that other chronically ill people don't get worse from activity...however, people with M.E. do.
Therefore, I was very excited to see this report on Medscape no less!!! talking about four recent studies showing some of the biology of PEM (posts exertional malaise). Even if you don't read the article, look at the title!
http://www.medscape.com/viewarticle/871482#vp_1
or try:
http://www.medscape.com/viewarticle/871482
Meanwhile, I also saw two quotes from Drs in the media this week saying "we know almost nothing about the illness" while conversely at a recent international conference on M.E. another Dr./researcher said "we now have over 9000 studies showing biological abnormalities in M.E.".....hmmm something just doesn't seem right.
So while the story in the general public seems to be that it's about being tired, and we know almost nothing, the reality is that 9000 published studies show people with M.E. suffer from dysfunction involving the immune, and autonomic nervous systems as well as metabolism, that is made worse by activity.
On another topic completely, I've just finished my own paper and submitted it to a journal for peer review about my PhD research, so I've been plugging away at that. Also, I have a new art piece I will share here in the next couple weeks...I'm very excited about/happy with it, which is a rarity for me.
As you know, one of my pet peeves about the media and their portrayal of M.E. is that they continue to reinforce the misconception that it's about being tired, therefore it can't be that bad and/or the average person can "know how it feels". Truthfully, it's a lot more than being tired. I think "weak" is a better descriptive...however, more importantly for me, over-doing it causes pretty significant influenza (aka SICK!!!) symptoms - sore throat, swollen glands, achy icky feeling, weakness, dizziness, chest/breathing ache. This is something that is unique to M.E. Healthy people don't get sick/worse from activity, and the studies that have been done show that other chronically ill people don't get worse from activity...however, people with M.E. do.
Therefore, I was very excited to see this report on Medscape no less!!! talking about four recent studies showing some of the biology of PEM (posts exertional malaise). Even if you don't read the article, look at the title!
http://www.medscape.com/viewarticle/871482#vp_1
or try:
http://www.medscape.com/viewarticle/871482
Meanwhile, I also saw two quotes from Drs in the media this week saying "we know almost nothing about the illness" while conversely at a recent international conference on M.E. another Dr./researcher said "we now have over 9000 studies showing biological abnormalities in M.E.".....hmmm something just doesn't seem right.
So while the story in the general public seems to be that it's about being tired, and we know almost nothing, the reality is that 9000 published studies show people with M.E. suffer from dysfunction involving the immune, and autonomic nervous systems as well as metabolism, that is made worse by activity.
On another topic completely, I've just finished my own paper and submitted it to a journal for peer review about my PhD research, so I've been plugging away at that. Also, I have a new art piece I will share here in the next couple weeks...I'm very excited about/happy with it, which is a rarity for me.
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