Sunday, March 15, 2009

My CFIDS/Fibromyalgia weekend

Living with the pain & fatigue

Damn I'm exhausted; sore (burning and throbbing sore) and those ETs must have visited me while I was asleep in the recliner for 6 hours - the mind is mush. So here I am slumped over my desk - staring vacantly at the monitor, the key board, the wall, my cigarettes. hand eye coordination is awful.

Thoughts coming to mind - click, change the channel; another thought-click change the channel. Staying focused is problematic but I've had more severe bouts with Fibrofog like the year or so when I couldn't read.

Plenty about that in another post - later.

Another thought just came to mind - whatever mind I still have left. I forgot to eat supper Saturday. I guess I'll fix peanut butter toast and a tall glass of chocolate milk - sounds real good!

I feel bruised; beaten. I have a certificate for a free 40 minute massage from a local massotherapist. Finally I found someone to go to here. I haven't had a deep tissue massage in a year since I moved and I miss going to my massotherapist in North Royalton . Massage did far more for pain relief than the drugs.

This week and all the stressors have taken a toll on my anxiety level leading to all the pain.

Did anyone get the number of the bus that hit me? Oops, forgot; not in Cleveland anymore. Back in my hometown of Toronto, Ohio - there has been no public transportation here since 1972.

I have a truck tho'. Gary bought it when we were living in East Cleveland - got it for $500.00. We got more than our very limited money's spent worth out of it so...

Need $600 + to fix it - Transmission! The walking is killing me. I can't believe - dare I say it? - I miss RTA (urine stained cloth seats, having to stand because of kids sitting in the disability seats, etc).

Despite having a disability RTA ID and bus pass, I'm surprised I was able to get a disability seat.
Heading eastbound on the #6 Euclid. Photo by Cindy Miller - 2007


It's been a rough two days - 2 hours of rest for every 15 minutes of housework. I managed to change the bed linen tho'; took me an hour because I stuck with it! I also had to go upstairs to the apartment and get it ready for the new tenant. The timing - despite that I feel like crap - couldn't have been better. We need the cash!

Just standing to wash the dishes is nearly impossible. My feet are a mess from all the walking I had to do just to get around downtown Cleveland before the state approved my disability cash assistance. I have nerve damage too in my legs.

Once my Medicare is straightened out and I am able to find a competent doctor here, I'm requesting assistance to help with the housework - at least three days a week.

I've managed to keep the house in relative good order. I kicked Gary out of the living room and he is spending most of his time in bed. He was trashing the living room and really breaking down my new couch. He can barely walk and besides, the bedroom is closer to the bathroom for him. I don't care if the bedroom gets trashed from all of his meds all over the place.

People ask me how I managed dealing with my illness while homeless.

I had my safe places to go when I left the shelter every morning. Voinovich Park behind the Rock Hall was one place - no one questioned anyone laying down there. Since I had a food stamp card, I could belly up to the salad bar at the market inside of Reserve Square for one salad, pasta, fruit platter to go. I spent the entire day resting along the shore of Lake Erie.
Voinovich Park, Cleveland. This guy is relaxing in my old spot.
Yep, I took this photo and the one below it - 2007


Another safe place that I spent a great deal of my time was at the Northeast Ohio Coalition for the Homeless where I volunteered.

I researched, wrote for "The Homeless Grapevine Newspaper" -when my mind worked
but they had a couch and there were certainly plenty of times when I had to nap during the day.

Usually I was beat when I got there. The walk wasn't far from Community Women's Shelter on Payne but sometimes that short walk from E. 22nd Street to 3631 Payne Avenue could take me an hour on a bad fatigue day.

I met Gary while homeless. He and four other guys and one of the guy's girlfriend were all living in a camp near I-90. Another place for me to lie down if needed.

For obvious reasons, thank God those days are behind me now. Despite having a big house and property to maintain, at least I don't have a schedule to deal with. It's nice to be able to lie down whenever I please.

And I most definitely will be making an appointment for my free 40 minute massage Monday morning - even if I have to pay for a cab ride to get there.

In the meantime, I am going to drag myself back
(with a heating pad and Tylenol) to my recliner. Time to go back to sleep.

I'll just post this and edit it later when I have more energy and far less pain.




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