Taking it easy

I've been trying to take it really easy for the last two weeks.

As you know if you read this blog, overall I've had a pretty bad year and September was my worst September I can remember, and my worst month since 2005.

The accumulation of bed time is probably wrecking it's own havoc as my muscles are weak from both the disease and inactivity. Still, small attempts at activity lead to fairly severe crashing so I'm learning to ride this relapse and when I have a decent day, I'm trying (really really hard) not to over do it. On the positive, I've had some hours of feeling less fluy here and there.

My friends J & J had a cabin rented at a nearby park last weekend and I was able to go along. It was such a nice change of face and place. While I mostly rested there as I would here, I just really needed a change. I didn't even crash from it.

I had only one event planned this week - a lunch with a fellow PhD student (which I'd already rescheduled). That was today. Then a friend called this morning and we talked and by the time I got off the phone I was in tears. I felt way too sick for a lunch outing. Still, I rallied and enjoyed it some, but came home and fell apart. Way too much yet for this sickie. It made me so sad.

It's just going to take some time to pull out of this relapse, I think. For now, no more "planned" events of any kind - at least for a while.

I finally got a call about scheduling my next specialist appointment. It's going to be done by telehealth (like teleconferencing) and my NP (Nurse Practitioner) is going to sit in. I think that will be good.

I'm going to continue to fight for some treatment for the POTS. I have been drinking lots and lots, eating salt and salty foods, and not noticing much difference. I still haven't filled out my prescription for the hose though, mostly because I've only had a couple outings in weeks and weeks and those were for pleasure. The other night I was having a fairly significant dizzy spell and took my own pulse - 160 just standing doing dishes (I usually sit).

Interestingly, I was looking at a list of POTS symptoms and noticed that tremors are on there. It actually explains quite a few symptoms we've been wondering about.
http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome
Infact, outside my immune/viral problems (which are significant), this list would explain pretty much the rest of the illness.

I'll post few photos from the weekend when I get them loaded, for now, I'll post some good photos from a near-by overlook at sunset.

p.s. I just wanted to add how much I appreciate all the support I get on this blog. I can't imagine going through this illness, let alone a relapse, without having people in my life who know how draining and difficult living with this disease is.