Thoughts on not being a Hero

I've noticed that my blog posts are far from upbeat lately. Many of those who read this blog know what it's like to be sick day after day. I don't necessarily need to report it. Of course we read blogs for many reasons: to understand someone else's perspective, to get a snapshot of someone's life experience, to find new ways to cope and deal with our struggles, and if we're ill, to learn about new research or treatment possibilities.

Obviously, I don't want this blog to be just an outlet for my suffering and frustration. Despite this, I find that having a creative outlet does help me "let go" and get things off my mind. It's cathartic, but not my sole purpose in blogging. In the beginning I thought my blog could be a chronicle of my journey towards health. This hasn't panned out yet.

Sometimes I feel like there is pressure to be inspiring by either getting better (healing or at least improving) or rising above this terrible illness in some way. In a sense, sometimes I feel pressure (mostly internal) that if I'm going to be sick and disabled I need to also be a hero. I feel I want to contradict this lately. I want to be able to say "this is really hard" and "I don't always cope well". I was lamenting to a friend recently about how everyone else seems to be able to "deal" better than I do, and she said something like - "comparing yourself to others based on things you don't know about their lives"....so true.

It took 12 or 13 days of crashed to recover from camping....I'm still very ill for this time of year (it's supposed to be my good time of year). With my first good day yesterday of course I took the dog swimming. I had to be near the water, look out at the lake, listen to the waves. So I'm in bed again today.

I've had the house to myself for the last six days which meant I had a very quiet, low-stress space. I really enjoyed it. I worked on a paper for publication that I've been avoiding for months. I would wake up and work two hours each morning, lying on the couch...then I'd putz...read, rest, surf online, rest, eat, TV.

I'm trying to come to terms with my overall decline in health this year. I think part of it is beyond my control. However, I wonder how much the long term deconditioning is playing a role? I try to walk even a quarter block on the days I'm able, but it's hard when I'm feeling fluey all the time.

I'm also thinking lots about what it means to be hopeful and how to balance that with my daily reality.

Renee recently wrote a blog post on a similar theme.
http://lymeliving.blogspot.com/2011/08/where-do-we-begin.html

Also, I was extremely moved and inspired by Sue's story on becoming visible for ME http://becomingvisible4me.org/2011/08/12/august-2011-me-story-sue/

a site that Dominque http://www.4wallsandaview.com/ started to give people a chance to share their stories about living with ME.

Endure.....

While "this sickie can camp" - see previous blog post - this sickie can also get really sick from doing too much: e.g. CAMPING (see previous post ha ha).

I really am amazingly ill. Is anyone else sometimes "amazed" at how ill they are?
I feel like the worst day of the flu X 5 with regards to malaise and fatigue. Sore throat, blisters, chest ache and breathing pain, dizziness etc.

I also have a fever 99.5 F. Yes, I know it's only a low grade fever, but still, I feel like I have a fever. When I don't feel feverish and I check, it's 98.0 or there abouts. When I'm feeling esp. badly it seems to sit in the 99.5 - 100 range.

While I should regret the camping, instead I've been laying in bed looking at maps and dreaming of the next trip. I'm trying to distract myself.

Sometimes this illness is really about "enduing" isn't it?

This sickie can camp!

Well I just did something outrageous!....at least for someone who's mostly homebound and often in bed lying down (partly due to the ME, partly due to the OI).


I went wilderness camping.

As most of you know, my pre-M.E. career was outdoor educator/wilderness instructor working mostly with teens. I did this work for 9 years year-round. For 6 of those years between guiding trips and personal days I was probably out in the backcountry about 200 days a year.

Of course I miss it and there have been plans for me to go out almost every year since I got sick.

But either I was too sick to make it happen, or feeling like if I made it happen, I wouldn't even enjoy it due to feeling so ill.

While I was attending that course this summer I couldn't even sustain the 2 hours a day for four weeks. There were days as I lay in bed frustrated, sick, humiliated, that I thought, "Why am I putting myself through this?" "What am I gaining here?"

I had a kind of epiphany....I mean I can push myself hard with consequences, but why not do this for something I'll enjoy?

So I figured I'd try to "go out". My lovely housemate and friend realized I was planning to do this alone and decided to take her days off to go with me. She helped me make it happen.

So the three of us (dog included) went. In retrospect it worked much better having help. She drove us there as driving causes me to crash. I live in an area that is surrounded by lakes and wilderness/backcountry on all sides which makes for easy access. We picked a lake, launched the canoe and canoed until we found a campsite that would work. She paddled, I mostly steered.

We spent two nights camping which involved sitting on an island, resting in the tent....eating....sitting by the fire...sitting by the lake. Not too different from home in bed except I could hear the waves on the shore, the wind through the aspens, and the loons on the lake.

The only epic was the paddle back to the car as the waves picked up and I was forced to actually paddle with my weak shaky M.E. arms....I managed to rally and now can't use my arms (arms are crashed); however, that will pass.

I think this will have to be a yearly endeavour. While I'm crashed, I was before going too. I've been so depressed about my life that this little outing will give me something to smile about for a while. I think it worked partly because I prepared myself mentally that I would be sick out there.

Sometimes when I imagine myself in a different space, subliminally I don't imagine the illness coming with me. But preparing myself beforehand to expect this experience to be different from my "well" past helped. Still, there were a few surprises like a couple near faints from OI and legs that didn't work (were weak and shaky and unstable). Overall, though, a success....in fact, more successful than some trips to see friends and family where the travel and social is so draining.

blood pooling (read and look at your own risk)!!

Guess which foot (or feet) belong to the roommate with OI ? And this is only a moderate day....you should see them when they're purple.
I hope this doesn't gross anyone out too much (sorry).


I'm going to attach a lovely local scene of my favourite swimming spot so you can get that one out of your head.




Feeling terrible and very fluey today...hurts with every breath. Hopefully tomorrow's better, right?

Phone appontment with specialist

I don't like phone appointments. I've done three, and they are just not the same.
Although there is one nice part - I get to lay down during the appointment!

I had three things on my list: Anti virals, tremor, and OI (Orthostatic Intollerance).

She confirmed that my fainting episode, lightheadedness, and the rise in heart rate is OI. Of course, I have ME right? I think that the Dr. I saw in May was just uneducated. He didn't notice a change in BP but she said he may have not waited long enough. She's sending me a prescription for compression stockings...blah. Not excited about that especially in this heat. I'll also continue to load up on the salt and water. Has anyone else tried these stockings?

The shaking/tremor could be related to the OI, it could be neurological M.E. stuff, or it could be something else. Since she couldn't observe it, she wants me to have my NP look at it. So before that appointment (later in August) I'll do some things I know will trigger it....all I can say is it's frustrating to have another ridiculous symptom that may or may not be treatable.

As for the anti viral, I'm going to up my dose a bit and keep a symptom log for my throat. I wasn't very helpful in knowing whether there's been any change on the viral symptoms. I still get low grade fevers...my throat still has blisters (although I don't think it's been as sore) and my lymph nodes (arms) are painful on and off about the same as usual. It makes sense to track these symptoms to see if the anti viral makes a difference.

She's excited to have telehealth in her office now. She said that hopefully we could do my next appointment with telehealth. I'm hoping my NP is willing to help make this happen, because it sounds like it might take some negotiating on this end.