The ups and downs

First, if you have M.E., fill in my new poll on the right.  I'm just curious how many of us have some form of OI.  My main issue is POTs, however I also have NMH (neurally mediated hypotension) which is basically just low BP when standing.  I think it's actually the NMH that causes me to faint on occasion. The OI has been pretty bad the last week.

On the other hand, I've had a couple pretty decent weeks M.E. wise, which is wonderful!  Milder flu symptoms and less weakness. I've been doing a few outings per week, short stuff less than an hour.  I've also been able to fit in a little art (printmaking).

Here's a photo of me and Tegan (I'm starting to show my age) from an outing about a week ago down the road to see the ice on Lake Superior.  We walked out just a little, there were a LOT of people out ice fishing, but I could tell that it wouldn't be safe too much longer.

And of course I'm still doing my daily PhD writing and editing session each a.m. from 1/2 hour to 2 hours.  Progress is slow.

And given the 6 week relapse I suffered this winter (and slow progress), we've applied for another medical leave, despite the fact that I've used up the four that are allowed.  I very much doubt they'll give it to me. I have found the university very unaccommodating for the most part…while the professors have been great, the policies are discriminating.

Basically if you are ill to the point of being disabled (unable to work), I don't recommend doing something like this.  I would quit today if I weren't so close.  As well, if you are too ill to work, it's a lot of money and precious energy to spend with almost no outcome (I'm as ill as when I started thus won't be able to work when I'm done).  Also, the time I've spent reading and writing could have gone toward healing and social, I have so little energy to go towards living life, and I've spent 6 years of it like this, alone with my books and paper, writing something maybe 3 people will ever read.

Anyways, these are the small details and frustrations of my daily life.  With the little bit better health the last two weeks, though, I am coping emotionally better with the day to day, not just constantly wishing it would end.  It's amazing how years of being ill can really weigh one's psyche down; also, how when my immune system crashes, usually so does my mood and vice versa.  Also sun….its crazy, but my mood is always better on sunny days (like today).

I am waiting to hear back on my most recent WBC, to see if my immune system is showing a little bit of improvement since the relapse, it usually does.

So I'm reading a book called "A Tale for the Time Being".  It's good, although I'm not completely wowed yet.  However, I keep finding these little jewels in the narratives, and this one (below) especially hit me.  It speaks to blogging.  Blogging is such an interesting phenomenon.  Why do I keep doing it? what need is it filling for me or anyone else?  While in the past, it has connected me to people who face similar health challenges, I find myself reading other blogs less and less.  Anyways, I thought this quote was pessimistic, but also insightful:

"It made me sad when I caught myself pretending that everybody out there in cyber-space cared about what I thought, when really nobody gives a shit.  And when I multiplied that sad feeling by all the millions of people in their lonely little rooms, furiously writing and posting to their lonely little pages that nobody has time to read because they're all so busy writing and posting, it kind of broke my heart" (excerpt from "A Tale for the Time Being by Ruth Ozeki).

Just for fun….

Sorry I don't have much to say this week.

But I did see this in the New York Times.  If you like solving medical mysteries, this might be fun.  First read the issues, then see if you can guess the condition: http://well.blogs.nytimes.com/2015/02/11/think-like-a-doctor-swept-off-her-feet/

Personal Updates: Searching for Balance

I've been blogging the last few weeks about the recent M.E. hype.  As you know, personally, I have problems with the proposed new name and especially the vagueness of the new definition.  I am not alone, I've seen a lot written about it by fellow patients as well as M.E. Drs and specialists.

On the other hand, the research out of Colombia University seems promising.  Their research involves  patients that fit a strict definition of M.E. (including immune symptoms, autonomic nervous system symptoms), making it more likely they will find abnormalities when they're compared to healthy controls.  And they have.

If you want, you can donate to their research….I think it's pretty hopeful.  I know, we are all stretched, wanting to give to different causes.  But if this one excites you (it's happening right now), here's the link.
https://giving.columbia.edu/giveonline/?schoolstyle=5881&alloc=21677

So I had a full month of relapse. I was horribly sick.  About a week ago (last Saturday) I felt it start to lift.  It happened over a couple days. I am now back to two or so hours every morning where I don't feel as viral, as heavy and weak. So what did I do after a month where I was mostly stuck in bed or on the couch, 95% of the time lying down?

Of course I over-did it.  I had a drive with my roommate to see the frozen lake Tuesday, and went to the bank on Wednesday.  I was crashed horribly both Thursday and Friday.  I lay on the couch both afternoons, really wishing my life would end.  I am so so tired of being ill, of it limiting my activity so completely.  I often feel very alone, suffering what feels like a severe virus all the time.  So often it's exhausting just to get myself food, get dressed, or talk on the phone.  I wonder why keep going? (I'm not saying I want to kill myself, more that I see no reason why I continue.) Sometimes I wish, if this is my life, can't it just end? Why must I suffer so much, be so disabled, feel so miserable and ill, from an invisible disease…a disease I can't fight back?

Still, everyday I try to find little things, little moments of joy to balance out the bad.  I try to push out the thoughts like: "I don't work, I'm a suck, a drain on society, friends, and family."  I try instead to laugh at the antics of my dog, enjoy the sun streaming through the window onto my bed, the birds eating at the feeder, laugh at a comedy on TV, immerse myself in a novel, enjoy my hour or two of writing each morning….I try not to feel my body, or look at the big picture, or think about the past or future.

If you're ill, how do you get through the sickest days?

These posts sometimes come across so heavy I think?  I do have better, less sick moments where I enjoy life to a degree. It's not all bad all the time.  Thank goodness I'm not always relapsed!!!! and I can do some little things, especially if I stick around home (minimize the outings).