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.

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.

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

Vacillations

There's nothing like a paddle on a peaceful morning lake.

I seem to be going through vacillations with this illness.  I'm doing more, or suffering through so I can do more "living", then I'm crashing and burning so that I have periods where I'm in really really bad shape.

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.

I haven't worked all month, haven't lifted a finger to earn a single penny.  And twice I've postponed my meeting with the professor I'm going to do some part-time editing for.   Well to be fair, she hasn't really felt up to handing stuff over anyways, she's swamped.  I want to remain a sloth for the rest of my life.  My dad's suite is already a part-time never-ending job, at least from the perspective of disabled sickie.

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.

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.

Chronic Illness: A Lonely Path to Walk

Beautiful Lake Superior beach

Warning: complainy post

Well my dad is moving back to his suite today after 2 1/2 weeks of living/sleeping here.  He has gone back to his "very needy" phase most of the time, and I'm embarrassed with how frustrated I get with him.

I am SO SO ready to have my bed and space back, to watch what I'd like on TV (not at volume 50 which just hurts my brain).  I do love my dad (a lot), but am not a good caregiver.  I'm impatient with having him constantly on top of me.  I know I should savour every moment with my dad, but this just doesn't seem to be the reality.  Instead I am often frustrated and overwhelmed.

There is lots of work to move him back in, hopefully I can get some of it done today: piles of garbage bags full of clean laundry, vacuuming to do, reorganizing his closet and dresser (hanging and folding), moving in the new bed and box spring etc. etc.  Yes, as you can imagine, not great for someone with M.E.

But I've learned over the last year plus that really it doesn't matter much that I am sick.  My parent's needs trump mine.  And if it adds more layers of ill health and suffering to my life, that's just the way it is...it doesn't matter except to me, because I have to suffer through the subsequent crashes.

This sounds harsh, but it's a truth I've recently learnt.  In some ways having to "push through" more the last year and a half has been good.  I've found that I won't totally relapse (or haven't yet) and I now understand that the added layers of sickness and crashes really don't matter in the big scheme of things.

At some level we are all alone in the world, and I've come to see the absolute reality of this lately. Having M.E. just makes that aloneness worse, because we who suffer from it have to navigate all life's tasks with the equivalent of influenza or mono much of the time.  And yet, there is no treatment for us, no acknowledgement from the medical profession we are ill, no specialists (not a single one left in this province). We don't look sick so there is also little awareness of our constant struggle and suffering from friends and family...unless we complain (which I try to avoid except on this blog).

After some recent tasks, I've crashed so hard I can't lift the book I'm reading without my arms shaking, but that just doesn't matter.  Some days I've crashed so hard I can't walk across the back yard...and so what? Recently I spent 8 days barely out of bed at all, so ill I just wished my life would end...and does it matter? My dad still needed help with his finances, needed a bed bug cover for his bed, and there was no one else to help him get it.

Being chronically ill, living constantly in a sick body, is a very very lonely path to walk.

I do realize I have helpful people (friends) in my life that have saved my butt multiple times over the last year. I'm very very grateful.  But still, I feel as if the amount of tasks/burdens I face while disabled and sick is at times ludicrous.  Like having my arms and legs together,  a heavy brick attached around my neck, and being thrown into a pool, being told to swim. When I manage to keep  my head high enough in the water to breath (aka not drown/die) I'm told "see, you can do it, you're swimming". I don't want to be sick and drowning, I want to live.

However despite my bitc&*ing about feeling so alone with my struggles, I have fit in a little living recently too.  First, my wonderful amazing friend and housemate took me camping for a night to get a break. I was supposed to have a little break/holiday after my 4 month push to plan and teach the online course, but then, of course I had this emergency with my dad.  So we went away for a night  (deserting him here at my house) and camped at this campsite that had it's own private beach on Lake Superior.  While it wasn't the planned week away I'd been dreaming about for months, it was still incredible.  I crashed some after, but it was worth it.

Love these rugged "private" beaches

Also, my brother's family is moving back across the country (from B.C. to Ontario) so on his drive, he and his family's golden retriever stopped here and stayed for a 2 day visit.  Imagine 4 people and two golden retrievers packed into this tiny house! It was crazy.  We took my dad on an outing (since I had my brother here to drive) which was really fun, we also had a bar-b-q, and I made my brother do 3 bags of laundry/decontaminating at the laundromat.

I am honestly so glad to be done teaching my online course. It ended up being harder than I thought it would be, due to some challenging student issues.  This fall I will be back on disability (mostly) earning a little of my own way doing some editing work for a professor.  This should be more doable than an intensive course.

As for the M.E., while I have been struggling with some pretty bad crashes (from doing too much over and over), I would say when I'm not crashed, I am slightly better overall health wise.  I feel very nervous to put this into print, as I'm afraid once I say it, I'll have a terrible crash or relapse (superstitious, I know). Late summer, early fall have always been my best time of year. I'll take it right now.

I had my brain/head MRI this week, and having had MRIs on my pancreas, I thought I would be fine. Unfortunately, because they put a little camera thing around (close) to my head for this test, I actually freaked out less than a minute in, and had to ring the buzzer.  My heart was racing and I was shaky and panicked.  It was horrible.  I did manage to go back in for a few minutes, but will never agree to that test again.  I certainly hope that my scan was clear.