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