Thoughts on Life with Chronic Illness

Life is complicated - a complicated mess of relationships, interactions, emotions, thoughts, ideas, actions and reactions.  Sometimes I find I close myself off from the world because it is so overwhelming.  And I don't just mean my mostly forced home-boundness. For the most part that is not a choice. Rather, I mean pulling away from my online support group, or avoiding talking to family or friends on the phone, or not engaging with the local, national or international news, or trying not to think about social and/or political issues.

When I try to make sense of stuff, I get mentally exhausted.  And then I think to myself "what can I do about it anyways?" "Why worry about stuff I have no power over?"  I used to think I was making my small mark in the world by working with teens in the outdoors.  I felt maybe there was at least a small ripple effect of my work both environmentally and socially -helping youth see their potential, develop decision and leadership skills, and perhaps even an attachment to wilder places that could lead to future protection of natural environments.

But these days I wonder if I leave even the slightest positive impact on the world.  I collect provincial disability, drawing resources from a strapped system.  I am not a good daughter or sister or for the most part aunt, I'm often a poor friend.  I find family dynamics too dysfunctional and no longer want to play the role of 'helper' in the family.  I'm too sick, too tired.  Friends: I find the ones I still have hard to connect with.  Our lives are so different.  I feel like such a failure, what do I say when we talk?  I can listen, but I have nothing to offer.

Case in point, an old friend called the other day and we talked for 1/2 hr or so.  On the one hand, I really appreciated the gesture.  He just wanted to touch base, catch up.  But I felt like such a loser:  "What are you doing these days?" he asked......"um.... nothing", what do I say? So often when I tell people that I'm on medical leave there is this silence.  They don't say anything at all.  Obviously they don't know what to say.  Are they thinking "how could she be that sick that she can't do anything?".

And then after phone calls I often crash.  I had two phone calls in one day this week and by the end of the second, my voice was hoarse and weak and I felt so terrible.  When efforts to connect with people come at a price, I wonder, why do I bother?  And yet I don't want to be all alone either.  I don't like being alone all the time. I want connections, other people in my world.

I've been glued to this "Canary in a Coalmine" project http://www.canaryinacoalminefilm.com
Why are they getting so much publicity? Indiewire news, ABC, they have raised over $130, 000.  Jennifer Brea, the filmmaker with M.E. is not stupid.  She's done her homework from everything I've seen.  And she is hopeful, and already making an impact.

She's what you'd call a credible witness and advocate and she admits it herself.  What does she have going for her? She's incredibly articulate, educated and obviously has a support network not to mention that she's also beautiful and in the prime of her life.  She was a PhD student when she fell ill.  And it's only been 3 years.  Can you believe I'm saying "only" to 3 years ill???  I hear people complain when their cold lingers for 2 weeks.  Imagine being that sick and worse for a year, two years, five years, fifteen years!!!

I try to remember how I felt having being sick for 3 years.  Was I still hoping to find the "answer"?  I was pretty sick at 3 and 4 years, those 2 years stand out for me because of how severe I was and also how vulnerable I was (transient, no permanent place to live, no income)....but I was not up for much....could I have taken on a film project?  I do remember it was around then that I realised I probably wouldn't get better.

I will say this: I am feeling grateful to Jennifer for what she is doing, and what it is costing her health to do it.  I think that many many people both present and future may benefit.  What a gift!

Anyways, if at all possible, spread the word about this project.  I would on facebook, although I have so many 'friends' there, and I don't want them all to know I have M.E.  I have never fully "come out" on that venue.  Basically, for the same reasons she's making the film - it's an illness where sufferers are mostly dismissed outright by the general public and medical practitioners.

Back to waxing philosophical, we only get this one life right?  It turns out I get a life where I'm living in a sick body.  I don't think it behooves any of us who are chronically ill to sit around waiting for a cure or a time when we might get better.  Somehow, I have to make the most of this life in a sick body. But how do I do that when so much that might be pleasurable (social, work, hobbies) makes me so much sicker/worse?  That is the ultimate question isn't it?  It is such a fine balance, a tightrope to walk.

As for my activity of late, I've been block printing, although I have not created anything fantastic.  My tamarack bog print (below) had potential after the second layer, but all in all didn't turn out quite like I'd hoped.  Still, it looks decent enough that I may keep one for myself and frame it. It looks better than in the photo, the photo makes it a bit glarey.

It's what's called a reduction print.  I only used one block.  First I printed the yellow, then I carved away everything I wanted yellow.  Then I printed the blue and gold, then carved away everything I wanted blue and gold.  I was left with what shows as the chestnut brown in the final print.

after two layers

after the 3rd and final reduction

I have two specialist appointments in the next 2 weeks.  A new gastroenterologist.  I won't go into the details of why I'm seeing him, but hopefully he's better than the last one.  I'm in real need of a gastro right now for two reasons.

I'm also seeing a cardiologist for the POTS.....I will only stick with him if he agrees to test for the POTS rather than sending me on a bunch of tiring tests.