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.