A double edged sword

I continue to suffer a bad period.  I feel like I'm always saying this.  But after I managed to get over the  c. difficile infections in early to mid Feb., I had a month of not too bad.  Not great, but I wasn't feeling completely incapacitated all the time.  Then sometime in early March I just got a lot worse.  I was having trouble walking even very short stints, standing at all.  I have just been feeling so so sick and fluey.

Well this week, I finally had a couple decent, less sick days and I completely over-did it activity wise.  I have so much trouble holding back when my energy improves a tad.

So now I'm worse than ever today (very crashed).  It has been hurting so much to breathe and I looked in my throat and noticed it is more blistered than usual and my left tonsil is swollen.  I expect that blistering and/or inflammation reaches down into my bronchial tubes.  That's what my specialist and I figured in the past anyways...that the breathing pain is inflammation probably caused by immune issues and/or the continual low grade virus I seem to be fighting.  And it is definitely related to the M.E. because when I am worse, the throat and breathing pain is worse.

Oh well.  It is what it is.

I have cut back some on my PhD writing hours.  But I have been doing too much art.  My parents helped me purchase a little home press which is fairly new.  I can't seem to stop myself trying to print things every day.  I have lots of linoleum blocks sitting around that I have never been able to "try" as I didn't have a press and hand-pressing takes so much work.

But I need to learn to slow down.  I've been pressing a layer (one colour) every day or every other day.  There is a little standing up involved but the clean up seems to take the most out of me even though I do it sitting on a stool (maybe because it falls at the end of the session).  I have been forced to slow down now as I'm so much worse again.  But I thought I'd share one of my (kind of) successes.  Much as I'm very excited still, the press itself is a double edged sword-until I learn to print every 3 or 4 days maybe? Or once a week.  I have been keeping the sessions very short (under an hour).

It's a 3-block 8x10 print.  I have had it sitting around for a couple years and have never had the chance to see what the 3 layers might look like.....I was pleased with the graphic comic like look to the finished product.  Not sure what to call it "Ravens in Snow"  "Winter Ravens"  any ideas?

Feeling gross

I've been feeling significantly gross, weak and sick every day for weeks now.  I don't feel too bad when I get up in the morning. I wake up hopeful and probably a little too ambitious.  Between 11am-1pm the funk sets in and I feel just wasted and ill.  every. single. day. It's frustrating.

After ten years I realize it is just M.E.  But still, I wish I could put my finger on why this is always such a bad time of year for me health-wise.  My worst crashes/relapses have always fallen in the Feb-April months.  Even while taking it pretty easy this week (avoiding outings of any kind) I have not been able to pull out of this bad period yet.

To be honest, I could probably limit my activity further - for example, cut out the 90 min of PhD work in the morning or refrain from doing any art.

The thing is, despite feeling so ill, my mood hasn't yet taken a huge dive.  I know if I cut out those activities, it will be hard not to get sucked into depression.

Thoughts? Suggestions?

The National ME/FM network is in fourth place in the Nature's Bounty contest.  The top three charities win money....it wouldn't take much to bring them into third.  Please vote if you are able (it's really easy) and you can vote from any country, one vote a day.  Please share this link.
 http://www.sharethebounty.ca/index.php

Reachable Goals

I'm trying to set some realistic goals for myself.

For one, together with a friend who also has this illness, we have committed to trying to stretch daily-even if it's in bed.  We check-in with each other to make sure we are sticking to it.  We were both talking about how deconditioned we are due to this illness and the possible long-term effects.

I have not been stretching every day, however, I think 4 or 5 times a week is a more realistic goal and I hope I can stick with it.

Unfortunately the last two weeks have seen a huge drop in my PhD focused hours.  I am hoping to get back on my daily work schedule (one to two hours a day) this week.

I think it is easy, when you are on disability and feeling sick every day, to stop trying to do anything.  A counsellor I saw last week gave me a resource which is just excellent.  It has some step-by-step ideas of creating as much of a fulfilling life as possible despite chronic illness.  Evidently, it is very common for people with chronic conditions to withdraw from society, from life....of course often with good reason.

I thought the tips were very realistic...I will post the webiste/resource at some point.

It has continued to be winter here.  We have more snow expected this week too.  I don't really mind.  I'm not a fan of the post winter brown slop....I wish we could skip that all together.

From the back window

I have been doing too much this past week and hope that is the reason I feel just so ill and weak all the time.  I think this coming week, I am going to try to forgo any outings and just give myself a lot of rest.

I wanted to encourage those who can, to vote for the National ME/FM network on this site http://www.sharethebounty.ca/index.php
They are doing very well and have a chance to earn some money.  It's also easy, you don't have to have a facebook account or anything like that.

That's my news for now,
I hope you are all doing as well as possible.

March is still winter

Technically winter ends in March.  However, up here March is still winter.

In fact, I like to tell the story of walking across a lake on the first of May with a canoe tied around my waist.  I was leading a spring canoe trip and the ice wasn't out on most of the lakes.  On some lakes we did the shuffle (one foot in the boat, one foot out - leveraging as best we could, pushing off the the tenuous ice).  On this particular (very large lake) on May first there was still a foot of solid ice (hence pulling the canoes as we walked along in the snow).

The average mean temperature in March is -6 C

Spring really starts in April here (the average jumps to 3 C!).  We always get at least a little snow in April, but it melts.  Things are wet and soggy and brown.  It's not a very pleasant month.

We got snow today, maybe 5 cm or so.  But it was most definitely March wet heavy snow.

I have had a tough week energy wise.  I had to cancel a meeting as I was too sick to leave the house on the one day I had something planned.  Another day I drove to a spot nearby to walk the dog and was so exhausted even sitting in the car I turned around and came home.  The ill factor (flueyness) hasn't been too bad (thankfully), but my energy has been completely non existent.  Like someone vacuumed me out completely.

Sigh, this too shall pass right?  My M.E. is always worse during PMS...anyone else? TMI?

So today after the snow I did an expedition into the back yard.  I thought, if I can't leave, then I will find some small beauty here in this snowy, wet, city backyard.

I'm going to share a little of what I saw.

Snow-covered Lilac

Someone's Christmas tree cast-off we
used as a bird feeder tree

A PhD from Bed

Can I really manage to complete a PhD from bed?  I have finished all the course work.  Two of those courses involved in-person attendance; that was the hardest part.  With accommodations (which meant extensions and missing much of the class time) I did end up completing those.  I think in part, the second course in the summer of 2011 is responsible for the last year of relapse.  It was too much.  I had to take a year and a term of medical leave.

So now all I have to do is write a portfolio and a research proposal, do my research (interviews mostly by phone), analyse those interviews, write up my findings, develop some discussion and conclusions, attend an oral defence and voila, I'll have a PhD....which I'm too sick to use anyways.  Hahaha

So why am I doing it?  Well to be honest, it gives me a modicum of satisfaction and fulfillment.  Every morning the last two months I have been spending an hour or two reading, writing, and editing.  It feels "healthy".  It's not making me any sicker, and it is distracting me from my body- which is a good thing.

I have made some small stepwise goals (flexible of course) and I just finished the first one....so that feels really nice.  My 56 page review of literature is off to my advisor.

And I figure if I ever finish this, and I can keep up with 10-15hrs of at-home work on a flexible schedule, with a PhD I might be able to find contracts such as research and writing that I can do from home....so there is a chance I'll use this.  But that's too far off to think about much right now.

The last couple days I have been very ill.  It's very difficult.  It's the old fluey feeling, immune symptoms, and crushing fatigue.  I now own a blood pressure monitor which includes a heart rate monitor and I know that the POTS (Postural Orthostatic Tachycardia) is pretty major at present. Within 2 min of standing, my heart rate goes from the 70s to over 120, sometimes as high as 160.  To put this into perspective, 160 is above my age-based target heart rate for exercise and that's if I were healthy!!!!  Just standing up sends my heart into that kind of panic.

I had an appointment with my NP and my second test came back negative for c. Difficile which is wonderful news.  My gut is still in bad shape (not as bad) so they are sending me to another gastroenterologist (hopefully this one is a bit nicer).

My iron is low (7), but as usual I'm not anemic.  My white count and neutrophils were low as per usual, but barely (I think neutrophils were 1.8, low normal is 2) and not near as low as last time where I think my WBC was 3.2 (normal depending on the lab is 4 or 4.5 through 10 or 10.5)

I'm curious from the pole on the right that so many of us have daily fluctuations in how bad we feel.  I'm going to add a pole to see if we all have the same daily pattern as well?

I had an exciting moment today.  I sold a blockprint.  Someone saw them hanging at a local restaurant and wanted to buy one.  I've only ever sold 3 or 4 so that felt affirming.  Here's the one she bought.  It was one of my first prints from 2008.