It just never seems to end, this disease is so chronic. I over did it all week. My dad had two Dr. appointments (Mon. and Thurs.) across town. I find driving utterly draining (and crash inducing) but I also don't think he could ever find these places on his own...and he needs an advocate, so I went. Wed. I had my own appointment at the University and Tues. someone interviewed me here (I'm being featured with my printmaking in a local arts and culture magazine).
Overdoing it does have it's consequences, no surprise. I am so exhausted and feeling ick (like that weak fluey sick feeling) there are no words to even describe it. Just walking to the kitchen and back I'm out of breath and utterly exhausted. This illness is insidious and life-stealing. We live, but always with a layer of heaviness and weight, through a thick film of horrid. And yet "I look great" (I heard this again just last week). No healthy will ever "get" it. I am so so so so tired, feeling so awful and exhausted. Oh wait, I may have already mentioned that. Sigh. Thanks for "listening".
I want to do Christmas, shop for people (too sick, stores make me weak and dizzy), decorate my dad's suite (too weak and sick), bake some stuff (too tired), work on preparing my course (I will do it tomorrow), call my brother (tomorrow, too tired and weak to visit today). You get the idea.
One of the tricks surviving day to day feeling like this is telling myself I don't actually want things to be different, accepting that sick is just my life...On that note, I think I'll go watch a cooking show.
Thursday, December 8, 2016
Sunday, December 4, 2016
Home Sweet Home - Busy
Well I made it home, and then had a 3 day decent spell. I've been taking care of all sorts of sorting and organizational stuff at home. Honestly, I think I mostly just moved things around, but the fact that three bags of trash went to the curb tells a different story. My house is quite small (although plenty big enough for two people). This means I can't collect a lot of junk or store stuff indefinitely if it's something I'll never use. The exception is books, there are books everywhere (and I did get rid of a bag of novels). I also brought books, some dishes and blankets, and 3 boxes of my mom's files and collectibles from my parents' house that I still have to sort through.
On top of my manic (well 2 or 3 hours a day which is a lot for a sickie) organizing, I opened an Etsy shop which is keeping me surprisingly busy. Then of course my dad is calling or visiting often. To make life even more exciting, my brother C, who has a psychiatric illness and was living on the streets after my mom died first disappeared, then ended up in the hospital (in southern Ontario). My healthy brother B. and his wife (since I'm my dad's care-giver) wanted to have my ill brother C move near them rather than have me take on another family task, however, my brother C. has been calling me multiple times a day from the hospital which is draining!!! Also, I can't help but worry about him, he has so many issues (mental illness, drugs and alcohol, etc.).
Then, it was the anniversary of my mom dying a year ago on December 2nd. I had wanted to take the time to do something in tribute to her, but in reality, a FaceBook post with some photos is all I did. I do think about her all the time and was hoping someone would connect with me through that post and share memories. Unfortunately of the people who are closest to me, most didn't really know her so couldn't say much. For those who did know her, life goes on, people have their day to day lives and I don't think they grieve the same as close family. My remaining family don't have the desire and/or ability to talk about her and share memories. Maybe I'll call her sister (my aunt) who is still living.
The final thing on my plate is a course (online) I am teaching in January. I should be getting it ready, but haven't done much and time is ticking. This week my dad has two appointments but I'm hoping otherwise I can dedicate some time to polishing it up. It's the same course I taught in the summer but over 12 weeks not 6, I think it will be about the perfect amount of work.
On top of my manic (well 2 or 3 hours a day which is a lot for a sickie) organizing, I opened an Etsy shop which is keeping me surprisingly busy. Then of course my dad is calling or visiting often. To make life even more exciting, my brother C, who has a psychiatric illness and was living on the streets after my mom died first disappeared, then ended up in the hospital (in southern Ontario). My healthy brother B. and his wife (since I'm my dad's care-giver) wanted to have my ill brother C move near them rather than have me take on another family task, however, my brother C. has been calling me multiple times a day from the hospital which is draining!!! Also, I can't help but worry about him, he has so many issues (mental illness, drugs and alcohol, etc.).
Then, it was the anniversary of my mom dying a year ago on December 2nd. I had wanted to take the time to do something in tribute to her, but in reality, a FaceBook post with some photos is all I did. I do think about her all the time and was hoping someone would connect with me through that post and share memories. Unfortunately of the people who are closest to me, most didn't really know her so couldn't say much. For those who did know her, life goes on, people have their day to day lives and I don't think they grieve the same as close family. My remaining family don't have the desire and/or ability to talk about her and share memories. Maybe I'll call her sister (my aunt) who is still living.
The final thing on my plate is a course (online) I am teaching in January. I should be getting it ready, but haven't done much and time is ticking. This week my dad has two appointments but I'm hoping otherwise I can dedicate some time to polishing it up. It's the same course I taught in the summer but over 12 weeks not 6, I think it will be about the perfect amount of work.
Saturday, November 26, 2016
If I could only find words....
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.
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.
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
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