Looks Like a Busy Summer Ahead

First, the lilacs are out and the the air is full of their aroma.  Here's a photo from last year when the crab apple and lilacs bloomed at the same time.  This year, the lilacs came later maybe because it's been a cool June.

I have done three interviews for my research (PhD) recently.  Two on Skype, and one over the phone. For those who read this and have M.E., I'm sure you can understand how this could be exhausting. They really drain me even though I'm not doing much of the talking.

On the other hand, I think often about Laura Hillenbrand who has M.E. and is also mostly home bound.  As well, she suffers from periods of severe vertigo.  And yet she has written two best selling books - "Sea Biscuit" and "Unbroken" and researched them all from bed. While it takes her years and she sacrifices other 'living' to do it, it is pretty amazing.

I think if I were to do a PhD, I couldn't have come up with a much better project (interviews by phone). So really, I am going to (as best I can) 'suck up' the suffering they cause post-interview for the fact that come September, I will have 12-15 interviews recorded that will provide the basis for my study.

I dearly wish I still had some medical leave left, however, because I would preemptively plan to be off this fall.  On top of the research, I have my parents visiting next week, some travel planned this summer and just thinking about everything I am attempting with this sick body is exhausting me.

Speaking of exhausting, I recently had to crawl under my bed to look through some boxes I have stored there.  I realized that there are a lot of boxes in this house that could really use some purging.

Even worse, it brought home how many times a week I attempt to do something seemingly small and run head first into my limitations.  For example, I tried to pull a box out from under the bed and just being on my knees made me super dizzy with a semi black-out standing back up.  I also got the very weak arm problem trying to get out the boxes.  Then, a couple hours later, I got the internal muscle tremor/buzzing that seems to be a post-reaction to anything that requires strength.

So that's the physical post-effort effect, then the mental/emotional one comes sweeping in.  "I am so useless, why can't I manage to do anything, why am I so sick?" and feelings of being overwhelmed "I have so many boxes I should go through, there is so much should do, why can't I manage to do anything useful?".  I know some of these feelings are ones both the healthy and unhealthy get.  I seem to have a motor that's hard to shut down even when there are all kinds of signals that I should, and the repercussions are so bad that sometimes I want to die.

One thing I've been trying to do lately is be kinder to myself.  If I'm having a decent day I put 'crashing' out of my mind and tell myself "it's not so bad, why are you living off social assistance?  You need to tough it out and do more, think about working." Then a day later when I'm horribly fluey and crashed, "why did you do too much, can't you have learned by now that you are sick?" I'm trying to change those to "remember to take it easy even on these 'good days'.  It's ok to enjoy laying in the sun, it's ok to spend the day in bed, to rest and read on a 'good' day".  "You are still an OK person, even sick".  "you are still an OK person, it's not your fault you don't work".  It's really hard to change those patterns, though.

On July 3rd I hang my little art show, and to be honest, I'm feeling a lot of anxiety about that as well.  The internal voice keeps saying "my art is just not good enough to show".  I realize it is a very low-key show in a basement art-store gallery.  It's a chance for the art store's clientele to show - amateurs like me.  But I'm finding the whole thing embarrassing.  I in no way regret doing art, it's one thing that makes me happy, I can manage it in small doses and it distracts me from being ill.  On the other hand, I feel as if the longer I am sick, the more I am plagued by self-doubt.  I realize this is no way to go through life, especially when I have the extra burden of being so ill.

Speaking of art, this is my most recent print.  It involved three carvings and many drafts if you can believe it.  While it is very very simple, I do like the colours and feeling of misty twilight it portrays.  It's called "wolves at night".  Fitting eh?

I just had to do Something!

http://www.microbediscovery.org

Has anyone heard of this?

Governments and drug companies put so little money into M.E./CFS research that it's almost a joke.  Despite this, they love to spend money on coming up with new definitions for the illness every few years and sponsoring workshops without paying attention to any of the research that has been done, or turning to specialists who have the most knowledge about the condition.

Why isn't anyone doing anything about this illness? I was feeling so angry about this today that I donated to the cause above.  This very well known and respected virologist cannot get funding to study M.E./CFS because those who grant funds ignore the importance of researching M.E./CFS.  Instead, he's turned to crowd funding.  This study could be completed and perhaps published within a year if they could get the funds.  And I've been watching the amount raised over the last few months, and feeling really sad that they are not even a 10th of the way there.

I am so broke it's ridiculous, but I donated anyways. I just needed to do something other than stew.  If you are a friend or sufferer and feel you can donate even a dollar, I think it is a very worthy cause.  If every sufferer with M.E. in the U.S. donated one dollar, the study would be funded.

Tough Week

It's been a tough couple weeks.  I may have overdone it two or three weeks ago when the weather first got nice.  I actually managed to "black out" in the garden 5 times in one short session.  I didn't fully pass out, just lost 100% vision briefly with the head rushes. Definitely POTS/OI which comes and goes in severity.

On my Birthday last week, I had the sickest Birthday I can ever remember.  My main event of the day was talking with one of my best friends on the phone, we hadn't connected in a while, so it was a nice birthday treat.

The rest of the day I lay in bed or on the couch praying that the crash would end ASAP.  I did feel well enough to celebrate with a campfire in the backyard the next night - it was low key and perfect….and GF chocolate cake, I love chocolate.  Then I had another horrible horrible day where every bone, muscle, and cell in my body felt poisoned, weak and depleted (M.E. crash).  It has continued like this, a couple OK days, a couple horrible days.  I can't tie it all to overdoing it activity wise just because I've been taking it pretty slow and easy all week.

Two summers ago low ferritin and digestive issues led to mild anemia, so I'm going to get that checked.  The nearest appointment I could get with my NP is a MONTH away, jeez!!! Can you believe that? They suggested a walk-in clinic but there is no way I am going to waste 1/2 day sitting in some room with a bunch of sick people.  It's not worth the crash and exposure for the off-chance I have anemia.  I'm already treating myself for chronic iron deficiency either way.

I've been home bound now 8 days straight, but it's not near as bad as being home bound in the winter, just because I can still sit and lay outdoors and we have had some beautiful days here.  Sunny and warm with a cool breeze, my favourite.  Small, but important blessings.

Uninspired

I try to post a blog entry about once a week.
But lately, I feel at a loss for anything new to say.

M.E. is with me every day, but illness wise, nothing seems to change all that much.  I live with it as best I can, or perhaps live despite it as best I can.

I am not pursuing any avenues to improve my health at present.  This is a good and bad thing. Good, because I'm not setting myself up for any dashed hopes (again), on the other hand, I feel no hope about my health improving without some kind of treatment.  The M.E. has thrived in my system for almost 12 years, and I expect it would take something pretty big to shift things.

I decided to go off the midodrine (POTS med) as the side effects were so annoying, and I couldn't get my dose up very high. The low dose was improving things a little, but not enough to stick with the side effects (weird tingling sensations, goosebumps, shivers, headache).

I have a prescription for Hydrofloricortisone which I will try before I see my cardiologist in October but I wanted a break from drugs for a month or so.

I have been setting up interviews for my PhD research which I will do over the phone or Skype during June and July.  I'm hoping that I can schedule them so that they don't cause my health to decline….I think I can if I'm smart about it.

I did two outings over the last two days and yesterday, my throat was so painful, bloodshot and red I was sure I had a virus.  But no, it was an M.E. immune flare due to overdoing it.  I really seem to do best with only one outing of around an hour a week, or at least 3 days between outings.

On another note, I finally chose a name for my upcoming show of my linoleum block prints "under boreal skies".  While a little cliche, I think the name is fitting.  Showing my prints feels akin to being naked in public.  I am by no means a gifted artist, it is just something I love to do, and even more important, something I can manage to do during my good hours.

Here's my print of the week….although the final block sat around for at least 2 weeks before I finally printed it.  The bird is called a whiskey jack, grey jay, Canada jay.  It was inspired by my outing in the previous post where I sat in the mossy spruce grove and the whiskey jacks came by to check me out.  They are brave and curious birds and have always been a favourite of mine.

I also wanted to share an interesting study I just read (but didn't fully understand) about how those with M.E. and M.S., but not healthy controls have trouble maintaining neuronal structure: http://omicsonline.org/open-access/brain-derived-neurotrophic-factor-is-decreased-in-chronic-fatigue-syndrome-and-multiple-sclerosis-2155-9562-S12-013.pdf

Also, a fellow M.E. sufferer just recently started a blog.  I love her writing but especially her drawings…they are so telling, they hit the nail on the head: http://tangerinebeak.tumblr.com

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.