Ups and Downs

For a week and a half I've felt just a little better. Such relief after months with no break from the never ending flu. So now I'm contending with a body that is easing (hopefully) out of a relapse and is seriously deconditioned.

I had to go out two days ago to pick up my medical compression stockings for POTS. it was about an hour outing. The stockings are way harder to put on than I expected. They take a fair amount of time and strength. They seem to help some with the standing/sitting dizziness which is great. On the other hand, there is increased blood pooling in my arms and hands, and after I take them off, my legs hurt for hours. To be honest, I'm not sure how much I'll use them.

Then yesterday I went on a short outing with the dog.

Today I'm absolutely crashed and ill and miserable. Right back to square one as a reslult of two days with one hour outings....sigh

I really wish there was some help for this illness. I feel so awfully sick and alone. I'm such a solution oriented person I feel like there's got to be something I could take or do that would help.

I also feel so lost with the relapse recovery. Should I just do nothing at all? Should I just lay here everyday all day? How much should I attempt? How do I know if I can do a little more if I never try? On the other hand, how do I avoid these awful crashes?

I want to have a social life, I want to work on my PhD, when I never leave the house I get depressed.

On my bad days I'm seriously considering taking a two or three term medical leave. I'm making no progress on my PhD....I can't justify collecting grant money indefinitely and doing absolutely nothing. Also, I'm no where near well enough to conduct research next summer and there is a fair amount of work I need to do before hand (i.e. now) to make it happen.

Drug that helps those with M.E.- is it really possible?

http://www.newscientist.com/article/dn21065-chronic-fatigue-syndrome-eased-by-cancer-drug.html


I read this today and felt hopeful. When you have severe enough M.E. that you have to give up most your activities, something like this can inspire hope.

On the other hand, how many times in 10 years have I gotten my hopes up only to have the promised treatment, drug, diagnostic test, diet, supplement, protocol, etc. not work out? The answer: every single time.

The good thing I see with this study, is while it's a small one, it was a double blinded study - meaning that neither the patients or doctors knew which treatment the patients were on. In otherwords, the positive effects for 67% were no accident.

Also, the drug is already an approved drug - albeit one approved for lymphoma.

Interestingly, it took quite a while (at least 3mo or longer for most) to see any improvement.

Fingers crossed

Photos...and thoughts on POTS

Fall is one of my favourite seasons here in Northern Ontario. I love late summer and winter too, but since getting ill, I don't get outside much in the winter to enjoy it. So I think late summer and fall have moved to the top of my favourite season list.

I'm just posting some photos from the fall. Some from the cabin trip a few weeks ago and others from an outing to a nearby spot.

I had a terrible crash-day on Thanksgiving after my outing Sunday. I just seem to have no stamina for any outings (without crashing); however, on a positive note, I have found I feel less fluey and weak lately if I just lay around all day. If I do virtually nothing, I've been feeling a bit better.

I guess my concern is deconditioning. I've been doing a fair amount of reading on POTS, and one of the main treatments is exercise. Further, deconditioning can exacerbate POTS. It's a bit of a catch-22 isn't it?

On the days I'm able, I've been walking a gentle half block - even if I've spent the rest the day in bed. However, this hardly feels like exercise.

Final thought/question? I finally went and got fitted for my medical compression stockings. I'm wondering if anyone has had success with these for POTS symptoms?



They were very nice in helping me at the store, but only one of the women was familiar with OI. She said she'd fit a female teen with medical stockings for OI (orthostatic intolerance).

My Dr. had indicated 30 mmHg compression and the saleswomen put me in the 30-40 rather than 20-30 because she said for OI, more pressure was probably better.

Funny anecdote. Even after a couple minutes standing to get measured, I noticed my hands had pooled blood - they were purple. Blood pooling in the feet and legs makes sense but in the hands? Has anyone heard of such a thing?

Thankful

It's Thanksgiving today here in Canada. My housemate/friend cooked a turkey and then some of my housemate's work friends came over. I was so sick from an outing yesterday (and to be honest from the M.E. in general) I spent most of the day in bed wishing I wasn't, rather than being thankful.

So before the day ends, I'm going to try:

1. I'm thankful for my green bedroom which I love and also my very comfy bed

2. I'm thankful I didn't go south to see family because I was too sick this time round and it would have been a disappointment all round.

3. I'm thankful I don't have to grocery shop (really, I think about this all the time!!! When I lived alone and was relapsed or crashed I so often had to cut it short or I would come out of the store, sit down in my car and cry from the effort, dizziness and sickness). And this makes me thankful for my housemates. Thanks S&J!

4. I'm thankful I still have two books in the pile :). Reading fiction gives me an escape and keeps me sane...or at least close to sane :) (insert maniacal laugh here)

5. I'm thankful for my yellow dog. I mean I can't imagine living this bed-life without her comfort and company and quirkyness. Love you Teagan.

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.