Adventures with a Sick Body

I decide after feeling cooped up in this house that I will take the dog for a short walk near the river.  I put on my shoes, grab the leash, and head for the car.  I pull out of the driveway.  I’m already feeling out of breath, out of energy.  By the time I drive a ½ block, I feel sucked dry - there is nothing left in me I am so shattered….

At the first stop sign I put my head on the steering wheel.  I realize I am too ill and exhausted to even drive somewhere, let alone walk.  My leg muscles are in tremor just pushing down the car break or accelerator.  I drive around the block and park back in the driveway.  I sit in the parked car, staring at the house.  I could sit here all day.  I rally myself mentally to make what seems like a herculean effort, to open the car door, stand up, get myself into the house so I can lay down.

I love my house, but sometimes it is also my prison.  I want to escape….I crave freedom.  I want that old body back, the one that could run and hike and paddle and socialize and work.  I want to escape this life I live now in a sick body.  It has almost been 12 years and I am still sick.  I am still sick after 12 years, how can this be?

Sometimes I feel like if I go somewhere different, on an outing to the drug store, a short drive or walk with the dog, I will somehow leave it behind. I am deluded; this illness, it is inescapable.  How do I not know this by now?

It walks with me to the car, weighing my limbs down.  It has penetrated my autonomic nervous system, I stand and I’m dizzy, tachycardic, and shaky.  It has sent tendrils down into my every cell – I feel the poison of this illness coursing through me, my lymph nodes throb, my throat is raw and blistered.  I take a breath and feel the heaviness, the ache…this disease lives deep in my chest, I’m sure of it.  

Occasionally, my dysfunctional immune system attempts to fight back, it mounts a fever, I am shivering, bleary eyed and achy. Or I wake up drenched from a night sweat – so wet I have to change my clothes.

You monster of an illness!! I hate you, but I can’t rid myself of you.  Even worse, if I fight back, if I ignore and push, 36 hrs later PEM sets in.  My throat swells, I am two or three times as weak and sick.  I am the colour of paste, I can't stand without blacking out.  I lay in bed cursing myself for trying, for overdoing….I did this to myself, caused the PEM crash.

But I don’t learn, I always do it again.

Another day, I manage to drive to the woods.  I walk some, ignoring the weakness and illness pulsing through me as best as possible.  But I can’t walk far, I’m just too feeble, too weak.  I sit on the thick soft carpet of green moss.  I look up through the spruce trees - sun beams penetrate the green canopy.  Curious Grey Jays flit down to some lower branches nearby to investigate my presence.  The dog wades in the temporary ponds created by recent snowmelt. 

Even here I can’t escape illness, I already feel the effort to get here doing it’s damage…and I know the worst of it, the dreaded PEM, won’t hit me for more than a day. But I try to put it out of my mind because, for a change, I am looking at a different scene, breathing in the coolness of the forest, the air rich with damp, earthy smells, the sounds of red squirrels and birds, a distant river.

Happy M.E. Day

It is M.E./CFS awareness day today.

As one of my friends with M.E. put it once "happy f-ing day to M.E."  Haha

There were the early years where I would do my little part to try to raise awareness.

While there is way more science showing biologic abnormalities than when I got sick, I have yet to meet a Dr. outside my old specialist who has heard of a single one of these studies or has any kind of knowledge about the illness.  There is still no diagnostic test, there is still not a single drug to treat M.E. specifically.  The amount of funding going towards research is laughable.

And the rare time where I disclose my diagnosis, I get to hear the stupidest things….here's a small selection from over the years:

• "I'm really tired all the time too, maybe I have that?" - M.E. is multi system illness, not 'tired' 
• "Have you tried changing your diet"? - no, in all my years of suffering, I didn't think of that one, duh
• "CFS, you know, tired house-wife syndrome" - this one was from a Dr.
• "Eat your vegetables" - yes a chronic multi system illness can be cured by vegetables
• "Try meditating" - while helpful for coping, once again, not a cure 
• "You need to get out more" - because I just love laying around ill at home &*%$#$!
• "Try swimming" - really? (side note: have tried this numerous times, but found I usually crashed just from the outing - even without swimming)
• "Your problem is low iron" - sigh
• "Sometimes I'm socially phobic too" - a phobia is an unrealistic or irrational fear, those who are home or bed-bound due to illness are not 'phobic'

I better end that list before I spiral further down the bitter train.

On another note, I had no idea I had so many M.E. friends on facebook until the last two days when much of my newsfeed has been filled with M.E. awareness stuff.  I guess one good thing that has come out of chronic illness,  is all the amazing friends/fellow sufferers I have met along the way.  Such a strong resilient bunch of people who endure unthinkable burdens of illness daily often without support from family or the medical establishment.  

(I am in no way GRATEFUL for the 12 years I have spent plagued with constant viral symptoms AND WEAKNESS COMPARABLE TO THE WORST DAY OF INFLUENZA)! That said, sometimes good things can be found within the muck.  Like the friends I have made, learning about art and printmaking, being able to read a lot, learning to be alone.

What have I done to raise awareness on Facebook? NOTHING. For one, I'm not completely 'out' on Facebook, although if you really wanted to know what illness I had, you could figure it out from the groups I'm in.

This year I'm feeling jaded.  It's almost been 12 years sick.  I'm just as sick as I was 12 years ago. I'm also older and incredibly deconditioned. For example, I have the added bonus of a lower back that's always seizing up when I try to do the smallest of things.  Also, the POTS has gotten worse due to deconditioning, etc. ect.  And I've spent so much of the last 12 years laying in bed or on the couch alone….just trying to get through the day until I fall asleep.

And what treatments out of the 100s that I've tried have helped? A small handful at best, and none have brought me more than mild improvement.  For example, if I pace my activity and never do too much activity, I can avoid some of the worst, most fluey days. On the other hand, I miss out on much of life and am terribly deconditioned from being inactive, making a lot of things worse.

Interesting fact: 

Did you know May 12th was chosen because it's Florence Nightingale’s birthday and she was thought to have had M.E. or an M.E. like illness?  The man who instigated M.E. awareness day was a sufferer and advocate who after years of suffering, had enough, and ended his own life.  Very sad, but Thomas Hennessy's legacy is a big one.

I actually wrote my 'story' about getting ill in order to raise awareness one year for M.E. day

http://upnorth-gailstories.blogspot.ca/2009/09/advocacy-my-story.html

If you have M.E. (or have a friend or family member with M.E.), what are you doing to raise awareness, if anything? 

A few nights ago, I took some photos of the harbour.  You can still see some ice (in the harbour and in the distance), but we are starting to get hints of spring here.

The ups and downs

Most of the snow has melted, at least in the yard.  My roommate/friend and I did a little outing to see ice-out on Lake Superior.  Get this, we were too early! It has been such a cold, long winter.

Not that ice-out happens all at once, but it can be pretty interesting to catch a part of it.  One year we found these huge frozen ice pans that were floating in very shallow water and we stood on them.

One year the ice was candling (which means disintegrating into numerous vertical columns, hard to describe).

open water near river outlet, in the distance, entire bay still frozen

This year the whole bay was quite obviously still frozen in, so we went to one of the local river outlets.  The river was extremely high from the rain and the snow melt.   It was pretty amazing and twice the volume of water from my last visit - loud over the rapids and a misty spray rising from the cascading water.  I'm posting a few photos - some taken from an old railway bridge above the river outlet.

Also, a week ago I went to the local harbour down the road and just looked at the ice.

I know I said I'd been having a good week, and the day after I wrote that I crashed hard.  This week has been a series of ups and downs.  Decent days followed by horrible weak and fluy days.  Also, I have been having poor sleep, waking up multiple times a night with sweats, bad dreams, and just not getting the quality of sleep I usually do.

I'm fed up with the cold and grey.

I'm also frustrated with the side-effects from my POTS/OI drug.  I can't get the dose high enough to notice much of a difference with dizzy spells and tachycardia, because the side effects (headache, shivers and chills, and head tingling) are persistent still on the very low dose.

Otherwise, I've been tooling around with some unsuccessful art and waiting for my research to make it through the university ethics assessment.

Sometimes I find this illness so isolating.  Not only because I'm mostly homebound and have virtually  no local friends, but because I feel as if I live such a different life from most the world.  When I do connect with friends, the last thing I want to do is complain or talk about my boring sick life. And yet what do I have to talk about?  I try to focus the conversation on the other person.  For one, I can enjoy their stories and live vicariously. Also, almost anything is more exciting discuss than my life.

My exciting life:

"I had a bath today", "I ate some chocolate", "I watched Big Bang Theory", "Of the hours I was awake, I lay on the couch for 5 hours and in bed for 8", "I read 5 chapters of a book".  

I don't make for a very interstering conversationalist.  In fact, sometimes I'm surpised I have any friends left at all.

That being said, what with all the time I spend resting, reading, watching TV, and just coping with illness and dizziness I often feel fairly busy.  And in my own little world, sometimes life feels normal. It's only when I spend time around a well person and experience the contrast, or try to do a short task or errand, that I realize how seriously incapacitated I am.  For example, I tried to pull a few weeds this week and got dizzy and arm shakes/weakness almost immediately. (FYI this by no means will stop me gardening…I will just keep it to very very small spurts and get help with the heaftier tasks like turning the soil).

local harbour still iced in