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.

Another Nightmare

So last Sunday I wrote: "On the positive, I won't have to run anywhere at the drop of a hat this year, I can rest and recover at home and hopefully pull out of this extended crash/relapse."  So much for being positive/optimistic and thinking I would have some time to rest and recover.


On Monday my dad was here (he stops by most days) and said he needed to flip his sheets around because of all the little blood marks.  I reminded him AGAIN that he has two sets of sheets and could take the dirty ones off and put them in the laundry and put the clean set on.  He said, "Oh no, I will just flip the bloody section from the head to the feet."


So despite feeling so horrible I had thoughts of wanting to die running through my head, I dragged myself over to his place to change his sheets.  Then I noticed bugs on his bed and the skirt of his bed (I won't go into gory details but three phases of bugs including larvae).  It turns out there was a bed bug infestation in his bed/suite and he's been a feeding ground for them for months!!


Next, I reported said infestation to the staff and was told immediately much of the issue is the renter's responsibility.  I was too weak to even lift a bag and was told "then find some help".  Being mostly home-bound I have few friends, and my roommate/best friend was away.  My 86 year old dad had to haul garbage bags full of clothes (everything fabric in the suite except the bed and coverings which were disposed) out to the car.  He got help from an elderly man with a walker!!!  Talk about feeling pathetic on my part.


I came home and just cried my little heart out because I was so horribly sick/crashed and overwhelmed. I messaged one of my dog training friends (more of an acquaintance) and we called in a few other people from the dog group and they came and picked up me, and 6 garbage bags full of stuff. We went to the laundromat and laundered it all in hot water and a super hot dryer and they even folded it all. Now bags of his decontaminated stuff are piled in corners of my house.

My dad also had to move into my house while they fumigate his bedroom.  They told me for a few days, then for a week, now they are saying 2 or more weeks. So I can't live in my room until they finish the fumigation process.  I live in a 720 square foot house (there is semi finished basement where my housemate lives, we share the kitchen). The bed in the tiny spare room is too high up for my dad to get into, so that is where i am camped for now, it's not a bad room really, it's just not my bedroom. He is here most the day, but still going over to the dining room at his place to eat most his meals, because cooking him 3 meals a day is beyond me (and anyways, he's still paying rent).

It is all very frustrating and disheartening. His place seemed so clean and nice and safe.  I'm frustrated no-one else caught this issue earlier.  I'm also VERY frustrated that they are insinuating he must have brought them with him in his bed.  He's had that bed for years and there was no issue until he moved into this suite at this residence.  They have admitted it's not the first case of them this year at the residence, not to mention other residences and hotels in this city have been in the news regarding bedbugs the last year or two.

My day to day life is now a lot more challenging.  I have trouble coping with him constantly as he follows me around this small space and is very needy, and it's not like I go to work and can escape. I'm home almost all the time resting and doing my own thing.  I will survive, but life just really sucks right now.  It's bringing back all the traumatic incidents of last year, when I was thrown into being the main caregiver to two parents while ill myself. I thought that was mostly in the past, and that I was down to a do-able level of care.  Wishful thinking.

Crashed

Well it finally happened, a sustained crash.  For most of the summer I've been going along with a crash day or two here or there, thinking "I really only have a mild case of M.E." (mild is often still disabled fyi). Then I did a dog event last weekend. Monday arrived and I didn't feel too horrible, but by the end of the day, the carpet slipped out from under me, I was just so so weak and fluey.  Unfortunately, I haven't had a good day since (seven days running now).

I keep waking up each day wondering if I will feel any better/stronger, so far, not so good.  I am not completely bed-bound, but can't sit up for very long (unless my feet are up) or stand for more than a minute or two.  I am just completely wiped out. I've had a lot of days where I can barely lift my arms. It hurts to breathe. I've had a headache (I am not a headache person) for two weeks running now.  Not really much else to say about being crashed, if you have M.E., you already know.

Finishing up this online course has been really challenging, especially doing it while fighting the equivalent of Mono, but I'm nearly there, which means I can hopefully just shut my brain off and rest for a couple weeks.

It's amazing to me when I'm having better days how quickly I put this horrid existence out of my mind. I tell myself "it really isn't that bad"...then I have a week like this! It really is this bad.

Last summer at this time, I got an emergency phone call and headed down south to help out my folks when my mom initially went into the hospital.  On the positive, I won't have to run anywhere at the drop of a hat this year, I can rest and recover at home and hopefully pull out of this extended crash/relapse. On the negative, my mom is no longer around to go help, which is really sad. If I had to do it again, I certainly would. What a heart-wrenching traumatic year it's been.

Here are some photos from my front garden which is full of (mostly) native plants.  It can look sparse at times and unruly, but late August is a good time of year for these gardens.