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.

Update

The cold virus moved through quickly. I had two days of feeling really ill followed by a two day crash (from the cold?) where I was reminded that I hate the sick feeling of M.E. far worse than the sick feeling caused by a cold. However, both suck.

I'm still crazy busy. In fact, last week I worked 22 hours total (more than half of that at home, but still!!!). I'm in shock that I'm managing, but I'm not complaining. In the back of my mind, I sometimes wonder if I'm going to cross a line and incur a relapse, but at the same time, I want to make the most of it for now, rather than be dictated by fear. I have about five more weeks to go at this pace.

I've been in a dark place psychologically, on days where I'm feeling especially sick lately. I'm not sure if it's because I have to push through despite feeling so ill. I've been thinking things like "I just can't take this constant sick anymore." or "I feel so alone." or "How can I manage another day in this body?". Partly it's knowing that no matter how sick I am, no one to date has really been able to help. And while I know I'm quite ill, I also realize I look healthy. If I share with someone how ill I feel, the fact that I look perfectly well makes my complaint seem dramatic....so mostly I just try to suffer in silence....this only adds to my feelings of isolation.

But I don't' know if I'd be happy if I wasn't doing anything. Ultimately, I really love the teaching. I love connecting with people and feeling like I have something to offer. And the editing work too, has been really rewarding. I've learnt so much. The way things have worked out I just have a little too much on my plate right now, but that's temporary. There are only four weeks of teaching left and the editing/writing work is almost over.

I've posted a couple photos from a few weeks ago. I was trying to capture my favourite season at a nearby park.

Next week I'll post a new "poll of the month" and provide an update on my neutropenia. I have an appointment with my NP to find out if it's improved at all.

cold virus

I've got a nasty cold. The funny thing is that it took me three days before I realized/confirmed it was a cold. M.E. is such a "viral" experience for me that with the sore throat, body ache, and fatigue I thought it was just a "flare" or crash due to the fact that I've been doing so much. When the sinus infection hit yesterday afternoon/evening, I finally clued in.

I taught my class today despite the cold and made it through fine. Now I'm in bed and will stay here for a day or so. I'm feeling so so so so exhausted and sick. Hopefully I'll do my proper weekly blog entry and catch up on people's blogs by next weekend, once I'm feeling better. I hope my readers are doing well.