a goal: wilderness camping

As those who follow my blog know, I used to be a wilderness guide. I really miss getting out in the woods. So I've had this goal the last few years to go wilderness camping. Last summer friends and I had a trip planned to some remote Islands in Lake Superior. My role was going to be to hang out at the campsite - and hopefully do some art and nature observation. After my course last summer my dog died and between the two events I didn't have it in me to make the trip.


I've accepted that I may be sick for the rest of my life. I do still have hope for treatment or recovery, but at the same time, I realize it may not happen. So I've been thinking more and more about how to do some of the things I love despite the illness. If I wait until I get better, they may never happen. Wilderness camping is one example. I need to find a very low energy way to do it, minimizing the logistics, and choosing a site that involves no travel (e.g. I don't need to paddle all day to get to it).

Since I'm not doing the PhD course this summer (postponed until next summer) I thought I might try to plan for a wilderness trip in August. Of course everything is tentative with M.E., but it's there in the back of my mind to do it. I'll keep you updated.

rallying

M.E./cfs is a very frustrating illness and for me, a lot of frustration comes from not being able to exercise. As someone who was previously quite active, it's really difficult to keep myself from exercising.

For example, I try to walk everyday, even if it's only a 1/4 block. But if I've walked a 1/4 block and don't feel terrible I start thinking "maybe I'll walk a 1/2 block, or a whole block, or three blocks". And maybe I do walk a whole block. But very unique to this illness is something called post exertional malaise...which means that the consequences of walking that extra block might not hit for up to 48 hours later!!!! So, I could think while walking the block that I got away with it and it was good for me - then 48 hours later I get hit with what feels like the flu (influenza, not stomach flu)- a slew of immune symptoms, fatigue, and weakness. Adding to the frustration is that fact that sometimes I DO get away with it, and sometimes I don't, so I can never be sure when it's OK to push it.

So what does the title of this blog post have to do with exercising? Well, I sometimes do what I call "rallying". Lets say, for instance, that I'm laying in bed feeling awful, but I have the chance to go out for coffee, or breakfast, or I need to work on school-stuff. Sometimes I rally and make myself do it despite feeling ill. And sometimes rallying works and I'm glad I pushed through the sick feeling, but sometimes it leads to an even worse crash and me laying in bed later wishing that I'd never heard the word "rally".

The last two days when I've taken my walk I've started out feeling OK. Then, as soon as I've walked a bit, the feeling of being a heart patient sets in. It's like I can't get enough oxygen. Don't get me wrong, I can breath OK, it's just that I start to get waves of the fluyness, weakness, and fatigue like my body has no fuel. It's like what I've heard described by people with heart conditions or anemia. On the positive side, when I feel like this I don't push myself hard. I just take a short gentle walk. I figure even if it's just a little movement, that it's important. I don't want my body to completely succumb to deconditioning through laying around all day. Even simple movement can help with lymph flow, blood flow, and muscle atrophy.

Decision Time

I just realized that I began this blog prior to starting a PhD program one year ago. After a year of successfully completing every element of the program to date (albeit with accommodations in two out of three of my classes), I've decided to take a medical leave of absence this summer.

After a week of attempting a work schedule including two hours work a day at home (reading, writing, editing) and an outing of 1/2hr-3hrs at least every other day I decided I wasn't up for the one month course in July. After five days of this amount of activity I was crashed in bed feeling terrible. I realized that while I may have succeeded to make it through the one month course, I would have been pushing myself to the limit - enduring a lot of days of feeling like viral fatigue hell. I decided after a long winter/spring of feeling awful, that I don't want to put myself intentionally through another season of it. Perhaps me and my body deserve to rest up and feel good some of the time this summer.

Also, I teach a class (4hrs of teaching a week) in the fall which I LOVE. If I push all summer there is a chance of relapse which would entail having to opt out on the fall teaching.

So, I'm still going to work on stuff this summer (attempt to write a literature review), visit family and friends, garden and lay in bed or out in my lounge chair in the backyard.

Being someone who likes to "achieve", I'm trying NOT to feel bad about my decision. Sometimes I need to accept that I'm ill and give myself a break - literally and metaphorically.

Teagan at the beach

I just thought this photo was so fun. It's my dog Teagan at the beach. We celebrated my birthday while my folks were visiting. I made everyone go to the beach for a picnic. I spend so much time home-bound I just wanted to be out near the water. So we went to Mission Marsh which is in town here....but it's lovely. We ate yummy food, cake (wheat-free but importantly chocolate), visited, flew a kite. It was a fairly short (3 hour) outing, but well worth it.

After my parents left I got a cold. Not a bad one, but enough that on my actual birthday I wasn't up to going out. Today's the first day I've felt better from the cold but now the M.E. is back with a vengeance. Fever, fatigue and weakness, painful lymphs, chest ache - same old.

I'm still putting off making a decision about the month long course I'm supposed to do this July. By next Monday I think I'll just decide because the need to buy plane tickets, find summer housing etc. is becoming more pressing. Today my decision is to take medical leave and put it off until next summer. For the last 5 days however, I've tended more towards giving it a go.

I'm starting back with the activity logs my specialist had me keeping for years. I log everything I'm doing including scheduled rests to get an idea of what I'm managing and what is causing me to crash. I'm trying to work at home 2hrs a day. If this seems at my limit or more, then I probably shouldn't go (the course entails more than this even with accommodations - probably in the range of 3 hours class and 3 hours work/reading a day).

My new GP recently ran a slew of tests looking for anything "missed" in the past. As per usual, most tests came back normal. I don't have an autoimmune disease, for example. The only irregularities were a mildly low white blood count (very common for me since the M.E.) and low iron (also an ongoing saga). I can't help but get my hopes up sometime that they might find another answer to why I'm so ill. I'm trying not to hang my hopes on XMRV but boy it would be nice to find out what's made me sick for almost 8 years.

No, I'm not a hypochondriac because I'd like a "positive" blood test and no, I don't really want an incurable retrovirus or an autoimmune disease.....but I would love to know what's making me so sick. And when tests come back normal sometimes it feels like the tests are saying "liar! You're not really sick". I understand that, as my GP and specialist both say, "they just haven't figured this illness out yet". But that doesn't make it any easier to go for years being sick and not really knowing why or having any significant treatment options.

some photos

The poll of the month is up, and I'm posting some recent photos. May was just and incredible month weather-wise.