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

Realistic vs Pesimistic

Well first the good news, and to be honest, I'm almost nervous to share it because I don't want to jinx it.  For almost a week I've been having a good spell.  Which means I've been doing little outings without a crash, not feeling as terribly fluy, and just maintaining more strength/less fatigue throughout each day.  And even more crazy, usually this is my sickest time of year.

Realistically, after almost 12 years sick, I know this does not mean I am 'getting better'.  I've learnt it just means I am having a good spell.  First, I need to not go too crazy and overdo. More importantly, I should just enjoy feeling less ill, and make the most of it in the moment (rather than making future plans based on a decent week).

For years after I got sick with Mono and then diagnosed with M.E., every time I had a good spell, even a few days, I would start to plan my return to a 'well' life.  I'd also do way too much and often end up sicker from overdoing.

I think it's human nature to be optimistic like this.  Also, and I've discussed this with so many others who have gone through any kind of pain or trauma, it's in our nature to forget how bad said experience was.  Even five or six years into M.E., a good few days could make me doubt that the months of misery I had just experienced was "really all that bad".  I think this technique of forgetting the horrible, is what enables us to move on and not dwell.

With M.E., though, one must be careful, especially as it's an illness where relapses are triggered by activity.  Also, while there are anecdotal accounts of people getting 100% better, this is likely rare.  In fact, having read quite a bit of research about the illness, I've seen anything from 4% - 33% of people recover.  The study that found 33% of people recovered, later returned to those who'd recovered and unfortunately, many had relapsed.

Of the people I know with M.E. (from mild to severe), I don't know anyone who's recovered.  Which really doesn't say a whole bunch because, for example, had I recovered in the first year or two I'd be living my life.  I would put the M.E. behind me and I wouldn't be interacting with a community of friends and acquaintances who were sufferers.

My point in writing all this isn't to say "abandon hope".  But for myself, hoping for recovery at this point is more harmful than helpful.  I don't think I'm being a pessimist in saying this, just realistic.

When I have a decent week where I'm clearly still ill, but have a few less layers of heaviness, it is important for me to enjoy it while remembering to be realistic.  The times where I've gotten my hopes way up, thinking a good spell is going to lead to recovery, have only hurt me in the long run.  For one, I do too much and end up crashed, or worse, relapsed.  And even more damaging, when I inevitably have another bad week or month or year, I get my hopes dashed.  When the good spell ends, it can lead to a pretty serious emotional let-down, even depression.  It took me years to learn to temper my thoughts and emotions when I had a 'good' week.

If I'm not going to get my hopes up for recovery, if I accept I'll probably be sick with M.E. for the rest of my life, what's left?  Well, in fact, I do have hope.  I hope for more good weeks.  I hope to improve or have a long good spell.  I hope for treatments that will ease some of my more frustrating symptoms: dizziness, that feeling of being ill and fluy constantly, and the post exertional malaise - the severe sick fatigue and muscle weakness that follows even the simplest amount of activity.  I also hope that I can be well enough to form and nourish some meaningful relationships in my life.  I often feel 'shut off' from people due to illness.  I also hope, at some point, to be able to earn some of my living myself.  Finally, I hope that very soon they develop more understanding about the mechanisms of M.E. and consequently treatments.

Research is achingly slow, and even slower with a little cared about condition like M.E.  For the most part, the disease and patients are still stigmatized, although I do think this may be slowly changing.  Even just recently a published study reported finding significant brain inflammation in M.E. patients.  And almost every month I read another study showing some type of immune abnormality or dysfunction.

Given the speed of research (very very slow), I doubt much of this will make a difference to me in my life.  That said, I have so much hope that future generations of sufferers will not have to face the years of misery and stigma that I have.  I hope that someone who gets M.E. will go to the Dr., be diagnosed and then, of all things, be offered treatments that target the illness and enable them to live full lives!

On a completely different note:

I have a favour to ask my readers here.  I'm doing a low-key art show displaying my block prints this July.  The local art store has a little gallery and each month they feature an artist that uses their shop.  I have been going there at least to buy paper almost since I started block printing in 2006.  Anyways, my issue is that they need a name/title for my show and I am at a loss?  I was wondering if anyone here might help me come up with something?

If you want to look at a selection of my prints go here: http://gjkuhl.wordpress.com
I want a creative title, but it can be simple too.  I've played some with the word 'northern' but decided against is because really, I live in the southern end of Canada (as do most Canadians) and north is very relative.  I also thought of something like "land, water, sky" because my prints all have one of those.  But it doesn't sound right, doesn't hit the mark.  Anyways, if you want to suggest an idea, that would be super helpful.

Happy Easter

Sorry I haven't written anything in a while.

Partly, it seems like there is nothing much to say these days.  I feel like when it comes to navigating life with M.E., or despite of M.E., what is there that I haven't written about already?

I'm definitely no better/healthier than I was when I started this blog in 2009.  If anything, I'm worse.  At least I have less resilience for things that most healthy people my age take for granted.  Jobs, outings, socializing, errands… or for that matter, lifting my arms, walking, sitting up for any period of time, folding laundry, you name it. Part of this could be aging, some could be continued deconditioning, and perhaps my case of M.E. is slightly progressive, that is a possibility.

On the plus, while I've had some crashes, I haven't had a full relapse in quite a while.

I've been dog-sitting this past week for the woman who looked after my dog over Christmas.  We did a trade because for one, it's free.  Despite the fact her 2 little dogs are small and don't need much, it has been exhausting.  The first night here, the one dog whined and cried at having been left from 9 p.m. when she dropped them off, until 5 a.m. the next morning.  Needless to say, a night without sleep was NOT a good way for me to start the week!

The only positive, is that there was a full lunar eclipse that night which was pretty amazing and I was up to see it.

Just the small task of two extra dogs has been draining.  The chaos of 3 dogs has been entertaining, but I'm excited for them to go home tomorrow.

I did get one outing with the dogs down to a local island park.  My roommate drove and I will add a few photos.  It was sunny and warmish out after having snowed 15cm two days ago, so that was nice. We still have big piles of snow around, but they are melting fast.

As you know, I absolutely LOVE to get out and this is such a beautiful spot, right on Lake Superior, so I was pretty happy. The trails at this park are short and flat and in the summer, I believe, wheelchair accessible.  Not to mention lots of benches.

I hope you all had a nice Easter whatever you do to celebrate (or not).


TREATMENT FOR ORTHOSTATIC INTOLERANCE

Finally, I said I'd mention my POTS/OI treatment.  I've been taking a drug called midodrine for maybe 2 months now. I'm still on a very very small dose as I'm having some annoying side effects.  My cardiologist is happy for me to experiment with the dosage and keep track of how well it works.  He also gave me a prescription for flourihydrocortisone and wants me to try that one too before I see him again.  I don't think he was happy with how clearly I was still having a huge spike in heart rate on standing, but to be fair, I'm still on a very low dose of midodrine.

The dose of midodrine I'm on hasn't gotten rid of the POTS, however, my jump in heart rate when I stand has definitely decreased.  Instead of 60 or 70 when my feet are up changing to 150+ when I stand, more often it's 120 or sometimes even 100.  Since POTS is diagnosed when it jumps more than 30, it's still POTS, but it is making a little difference.

I've also noticed a little less quantitiy of swooping blackouts when I stand up.  This is harder to track because I don't get them every time I stand, and it fluctuates from week to week. Unfortunately, I notice if I try sitting up more during the day, I still get exhausted and crashy (meaning flu symptoms).  Obviously PEM (post exertional malaise) which is unique to M.E./CFS is not one and the same with POTS.  So while I hoped I'd be able to do quite a bit more once I treated the OI, so far, I haven't found that to be true.

On the other hand, I like being able to cook or do the dishes sitting on my stool and not get that panicked "your heart rate is over 150" feeling.

Short Post

I've been really struggling to recover from my visit to Minnesota.  Also, for some odd reason, this time of year, my health status frequently takes a dive.  For example, almost all of my worst relapses have been in March - May.

I was starting to feel a bit recovered from my trip early this week, then, because my back has been so sore, I went for a massage Wed., made the mistake of doing a short outing Thurs., then had an appointment with my Cardiologist Friday.  Needless to say that was way too much for me.

As per usual after too many outings, I am feeling completely crashed, bunk, and miserable, especially in the afternoons.  Two days in a row I've figured I was coming down with a cold virus (swollen glands, increased sinusitis, low grade fever) but I've concluded now that it is just the M.E., immune system flaring.

I did finally carve and print something I like in 2014.  And for a change (almost by mistake), I printed it in water colour inks which have a much different look.  While the print is a little cliche maybe, I really like the way my pines turned out.

Anyways, I'll post some updates about, for example, my POTS treatment, when I'm feeling a bit better.

It looks like there may even be some days warm enough soon to sit on the front stoop.  It's south facing and gets really warm, even when the temperatures around are still cold. Fingers crossed.