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.