Vacation - Day 2

Some people with M.E are so disabled they can't leave the house. In this case, any kind of vacation that involved travelling would probably cause a relapse.

I have a moderate case of M.E. I contend with flu symptoms, fatigue, and weakness everyday; however, I can fake my way through social gatherings or outings on good days (sometimes even without consequences). I have also managed to study and work a little since 2006. I'm sincerely grateful to be able to do this as I know that the M.E. could be a lot worse.

This week I decided to take my art supplies and travel to a nearby town where there's a printmaking studio for a few days. I've done this other times. I stay at a beautiful but inexpensive little motel. My bedroom has an amazing view of Lake Superior. It's just nice to be some place different. It feels like a vacation.

The most difficult part for me is the drive. Many people with M.E. can't drive for various reasons (dizziness, weakness, the energy it takes). If I drive any kind of distance, I incur a crash the next day. The longer the drive, the worse and longer the crash. The exception is that on a good day I can drive short distances and do an errand (if the errand doesn't take too long).

I drove yesterday to get here (1 1/2 hours) and today I woke up sick and fatigued. I'm looking out my window at the lake and listening to the waves crash on the rocky beach.

I'm hoping to be able to "rally" enough to do a little art today. If not, I'll lie here and enjoy the scenery and feel grateful that I'm well enough to go on vacation. Looking at the Lake I'm once again in awe of this beautiful world that we call home.

Running

I've had a really good four days. Last week I spent 5 or 6 days with some kind of stomach infection (second one of the fall) which was pretty bad. But the last four days I've been wrapping up my class and marking, marking, marking. The whole time I've been feeling pretty decent. I've had to go in to the U for a few hours the last 3 days and I've managed OK. I mean I'm no ball of energy, but the ill feeling has been quite minor.

Yesterday was the final class and one of the students presented a lesson and activity that included running. I could have just passed and "observed" the activity, but instead I participated. My compromise what that I mostly walked. However, at one point I jogged a little and while doing it I was thinking, "This is so nice". "It's been so long" and "Wow, am I ever out of shape!". As I crash from physical activity I wondered yesterday whether I would crash, and if so, when. This morning I woke up and thought I'd gotten away with it. Well it's been exactly 24 hours and it hit at about 22 hours. The immune and fatigue symptoms arrived like a freight train.

It makes the cerebral part of me think about what M.E. really is? I figure:

1. There must be some kind of "damage" happening when I'm active. Something related to energy metabolism. Something that takes 24 to 36 hours to hit the immune and/or metabolic system.

2. Or, if it's some kind of virus, the activity (physical stress) does something to the virus to make it more active....It could be like chicken pox which, once you've had it, lays latent in your body until your immune system becomes super stressed for some reason and you get an outbreak of shingles.


Whatever the case, this is both an interesting and stupid illness.

Why Blog?

I'm thinking this could be a good question both for my fellow bloggers and my friends who read this. I've been wondering why I blog....here's what I've come up with. Some of these have emerged over time.

1. To educate friends and family about the illness
2. To keep people updated on my life
3. To feel part of a larger community of people who suffer disabling chronic illness
4. To share ideas and learn things about research, treatment, and coping with M.E.
5. As an outlet for some of the struggles and successes (hopefully) of living with a misunderstood and often marginalized illness.
6. As a record for myself.

These are some of the reasons I blog.

But on the other hand, sometimes I wonder - what's the point? A lot of times I write about my struggles with crashes and relapses and my frustrations over always feeling ill. I don't need a public forum to "vent". Why not just keep a journal? I could still follow other people's blogs for a sense of community, information and solidarity.

Thoughts?

Drive along the Kam

Yesterday I took my parents for a drive along the Kam river. The road winds along the river, then passes quite a few lakes. The whole loop is probably 1 1/2 hours to drive, but we stopped along the way. I shared the driving with my dad. It was my only day of their visit with a chance to do an outing as I had a day before and after to rest. There was one part of the river with a little canyon/gorge and a big white sand beach. We stopped and just admired it. Teagan (my dog) ran around the beach and rolled in the sand. It was incredibly beautiful and the photos (below) just don't do it justice.

It was nice to get out and enjoy the day. We were gone about 3 hours. I held myself back several times (from walking much, or doing the driving). Today I'm crashed, but not too badly. Just lymph nodes, throat ,and fatigue/weakness. Not as fluey/achy as I have been much of the last week.
I know quite a few people with M.E. Some crash to varying degrees from emotional, mental, and/or physical stress, but we all seem to have one that is especially consequential. For me, it's physical stress. Anything even remotely cardiovascular causes me to crash. This is not a theory, it's a fact. I kept activity logs for five years and I have learnt that I just can't exercise without paying. I can do some strengthening and movement activity, but as soon as I do anything where I'm "breathing", I end up crashed. This is really too bad as I used to LOVE activity. I ran, rock-climbed, canoed, swam, hiked, sea-kayaked, etc. Now I can't walk two blocks. Well that's not quite true. On a good day I can, but then - about 36 hours later I'm sick and crashed.

Sometimes I get so frustrated that someone hasn't figured this out. I have clear signs of illness (crashes, blistered and swollen throat, fevers, low white blood cell count). Why are those of us disabled by illness so deserted by research and medicine? When I look ahead to the future and imagine myself 10 years from now I want to feel hopeful that there might be a treatment. Hopeful that I don't have to live the next 1-40? years ill.

6 out of the last 9 days

I'm still going through a bit of a rough patch.

I've spent six of the last nine days mostly in bed. My level of function has dropped considerably the last two weeks - so if I do too much, I'm in bed for a couple days feeling ill.

For example, I went to a party Friday night then spent Saturday, Sunday and Monday mostly in bed. Yesterday (Tues.) I was feeling a bit better. I did an errand at the University and some house cleaning - not surprisingly, today I'm in bed again feeling really ill and fluey.

My parents are visiting for the week. They know I might not be up for much, but still, I did hope to be able to at least sit up and visit.

I feel so exhausted, weak, and viral. I've been laying in bed looking at the antivirals sitting on my shelf and wondering if I should give them another try. When I tried them in August, the side effects were brutal. But maybe if I started really slow (on a super low dose) I wouldn't get the intense nausea. I really want to try something.

crash

I'm crashed.
Hopefully not for long.
I can't afford to crash for another 4 or 5 weeks.
Why won't this illness adapt itself to fit better into my schedule?

I know I've been busy and pushing my limits...
Doing more than usual almost every day.
But I was managing fine, I didn't see the signs.
Silly me.
I thought I was "getting better".
Well my friend M.E. showed me.

Now I'm in bed.
throat
throat blisters
lymph nodes
major weakness
breathlessness
chest ache
fatigue
ache

Rest...Rest...Rest....Rest....

I hope this is a short crash.
I have things to do.
Things that can't be done in bed with my eyes closed.