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.
Tuesday, October 11, 2016
Nothing in the Tank
It's like there's nothing in the tank. The "car" won't start. I get out of bed to do something and last less than a minute. I try lifting my arms to do something like brush my teeth, it's like every cell in my body is poisoned and dead, nothing to give.
How do you participate in life when you can't find the strength and energy to stand up for more than a few seconds? When even sitting up is beyond exhausting, the only thing going through my head when I'm sitting is "I need to lay down, I need to lay down, I need to lay down". My chest is so heavy and sore and infected it aches every time I breathe, swallow, talk.
This is not laziness people, this is not in the least bit about motivation, this is not being down or sad, this is about a body that does not, cannot seem to produce energy. There are no words to describe this. Perhaps the fatigue and exhaustion of mono, or influenza...nothing else comes close.
I'm crashed. I did too much on the weekend. I did an outing with my dad on Saturday, we had a Thanksgiving meal here on Sunday (and I cooked a fair bit of it). Sometimes I can go along doing some little things, some living things, but then the repercussions come: I'm crashed, which means broken. I live in a broken body.
I know if I came down with a terminal illness right now I'd say "I'm done". I'd give into it. I had 31 good years, followed by 14 sick ones. Not that there hasn't been good things in these last 14 years, but I'm so exhausted from living in this sick body. Sometimes it really isn't living at all. It's watching the shadows on the wall, laying in bed or on the couch for hours and hours alone, too weak and sick and exhausted to do anything else. I'm tired of it...I don't want to do it for 14 more years. I don't want to feel this ill for even one more year.
Given it was Thanksgiving yesterday I'll say this, I have things to be thankful for. I am very thankful I have my roommate/friend S. in my life. I am so very thankful I have my dog Teagan who keeps me company almost all of the time, providing companionship and entertainment. I'm thankful for all my many friends I've had throughout the years. I'm (sometimes) thankful for having my father nearby, where I can help him out without a huge amount of strain on my health (although sometimes there is, like last week). I'm thankful I have a home to live in, an awesome backyard to tinker in or sit out in when the weather and my health cooperate.
On a related note, if you haven't seen any reporting about this study that showed people with M.E./CFS have a metabolic signature similar to invertebrates in a hibernation, you should take a look. "What?! our metabolism is malfunctioning? Could you find anyone with M.E. who'd be surprised?": https://www.sciencedaily.com/releases/2016/08/160829163253.htm
How do you participate in life when you can't find the strength and energy to stand up for more than a few seconds? When even sitting up is beyond exhausting, the only thing going through my head when I'm sitting is "I need to lay down, I need to lay down, I need to lay down". My chest is so heavy and sore and infected it aches every time I breathe, swallow, talk.
This is not laziness people, this is not in the least bit about motivation, this is not being down or sad, this is about a body that does not, cannot seem to produce energy. There are no words to describe this. Perhaps the fatigue and exhaustion of mono, or influenza...nothing else comes close.
I'm crashed. I did too much on the weekend. I did an outing with my dad on Saturday, we had a Thanksgiving meal here on Sunday (and I cooked a fair bit of it). Sometimes I can go along doing some little things, some living things, but then the repercussions come: I'm crashed, which means broken. I live in a broken body.
I know if I came down with a terminal illness right now I'd say "I'm done". I'd give into it. I had 31 good years, followed by 14 sick ones. Not that there hasn't been good things in these last 14 years, but I'm so exhausted from living in this sick body. Sometimes it really isn't living at all. It's watching the shadows on the wall, laying in bed or on the couch for hours and hours alone, too weak and sick and exhausted to do anything else. I'm tired of it...I don't want to do it for 14 more years. I don't want to feel this ill for even one more year.
Given it was Thanksgiving yesterday I'll say this, I have things to be thankful for. I am very thankful I have my roommate/friend S. in my life. I am so very thankful I have my dog Teagan who keeps me company almost all of the time, providing companionship and entertainment. I'm thankful for all my many friends I've had throughout the years. I'm (sometimes) thankful for having my father nearby, where I can help him out without a huge amount of strain on my health (although sometimes there is, like last week). I'm thankful I have a home to live in, an awesome backyard to tinker in or sit out in when the weather and my health cooperate.
On a related note, if you haven't seen any reporting about this study that showed people with M.E./CFS have a metabolic signature similar to invertebrates in a hibernation, you should take a look. "What?! our metabolism is malfunctioning? Could you find anyone with M.E. who'd be surprised?": https://www.sciencedaily.com/releases/2016/08/160829163253.htm
Monday, September 26, 2016
Vacillations
 |
| There's nothing like a paddle on a peaceful morning lake. |
Right now I am in a crash again. This is because I pushed myself so I could go camp on a wilderness lake for a few nights (see pictures below). I had someone drive me to said lake, but still, it was way more work than I'm used to physically. Also, I'm getting a little tired of camping alone, despite that it was amazingly beautiful. One time, it would be nice to go out into the bush/wilds with friends for a few nights (and not just so they can do the work for me :) )
Since the camping, I feel horrid again, like a huge rock sits in my chest, it hurts to breath, my muscles ache like with influenza, I have a sore painful throat, and I am....dare I say the word "tired", but not the normal tired, the M.E. tired - completely shot, no energy in any muscle, I can barely lift my arms.
And despite the crash, guess what I had to do today? Change and launder sheets. It was too much, I deserted my dad at the laundromat and told him he'd have to finish up. I came home and crawled back into bed.
The bug issue is mostly gone, but because no one has been on top of his sheets, I found blood AGAIN!!!! F%$#$%%^!!! Looks like just one bite, but it means there are a few bugs still lingering in his suite despite the fact the place keeps saying "we kicked them, they are gone". I've found evidence of bugs twice since they've said this...and I am past wanting/feeling up to dealing.
 |
| The friends who dropped me off, took a turn on the beautiful cliffy lake. |
I sat on a rock for at least 90 minutes watching this sunset, it was amazing.
Friday, September 16, 2016
Fall-Out
I'm not sure why I'm not pulling out of this most recent crash, it's been six days. Perhaps it's all the extra activity I've engaged in with my father's infestation.
Two nights ago, I even slept for 12 hours! On top of it all, my motivation is very very low. No motivation to do art, read, watch TV, work on my paper, etc. etc. I feel so rotten and sick, I almost wonder if mono has reactivated. I know there is debate in the medical community about this, but it sure feels viral on top of crashed. No point in going to the Dr. though, I'm well aware that they are useless. "Suffer through" is my only choice.
I'm just so sick of M.E.
My dad still has some lingering bugs in his suite and they are saying they wait 21 days after spraying to do it again, even if there are still bugs!! This is frustrating and annoying, but to be honest, I'm too wiped out to deal with it all. We've been changing his sheets every two days, even going over there that often is perhaps adding to this crash. I wish I had something positive to write here. Perhaps I'll post a picture of my awesome dog.
Two nights ago, I even slept for 12 hours! On top of it all, my motivation is very very low. No motivation to do art, read, watch TV, work on my paper, etc. etc. I feel so rotten and sick, I almost wonder if mono has reactivated. I know there is debate in the medical community about this, but it sure feels viral on top of crashed. No point in going to the Dr. though, I'm well aware that they are useless. "Suffer through" is my only choice.
I'm just so sick of M.E.
My dad still has some lingering bugs in his suite and they are saying they wait 21 days after spraying to do it again, even if there are still bugs!! This is frustrating and annoying, but to be honest, I'm too wiped out to deal with it all. We've been changing his sheets every two days, even going over there that often is perhaps adding to this crash. I wish I had something positive to write here. Perhaps I'll post a picture of my awesome dog.
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