....and holding

I'm still doing better.  I feel less sick. I have more energy than I have for a year, maybe two.  I am maybe 10% improved overall, although it is so hard to quantify.  I would say even more when it comes to immune symptoms.  I have periods of the day without a sore throat or lymph pain (they still hurt at night).  The POTS and OI are still quite bad (summer, heat, you know) and I've had a few scares with significant blackouts.  But throat, fevers, breathing ache, and malaise are much better.

Instead of 1-2 hours of the day not horizontal (where I am able to sit-up or stand), I'm spending maybe 4 upright. This is wonderful.  For the first time in a long while, I don't hate my life.  All it took was not feeling like hell every minute of the day "go figure".

That being said, I had a friend visit and tried going into a big store (Michael's) and it was a disaster.  Not only did I get flu symptoms and dizziness from the standing (and the lights and the sounds), but I crashed the next day from the effort.  It's funny, because if I do something similarly active outside I haven't been crashing every time (maybe one out of 3 times).  I think it must be in part, the standing still which wrecks havoc with those of us who have fairly severe OI (orthostatic intolerance).  Also, perhaps because stores are especially mentally stimulating they are more exhausting.

I know someone might read that and say "you must have a phobia of crowded places", but really, I'm not scared of stores at all (not that I was ever a shopper - I never have been), but for some reason they drain me and cause crashes in the same way driving does (despite the fact I  used to love to drive).

Most Dr.'s who research M.E. call it a neuro-immune disease (sometimes a neuro-endocrine-immune illness).  There are definite aberrations in both the nervous system and immune system.  While I have always been more aware of the immune symptoms, I definitely get some nervous system ones.  Like crashing from stores, driving, the severe OI (which is an issue with the autonomic nervous system), as well as periods where I get fairly significant tremors and muscle twitches.

I won't be blogging much this month partly because I'm a little busier what with the better health.  I'm also spending way less time on the computer (doing a lot of reading for one).

I hope everyone who reads this is also doing well, having a good summer.  If not, I have my fingers crossed for all of you.  If you had told me 4 months ago that I would ever feel this good again, I wouldn't have believed it.  (Not to get carried away, I'm not well or healthy or anything, I've just had enough of the illness cloud lift to remember I have a personality and things I enjoy in life).  Here's hoping it lasts.