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).