Please feel free to ignore this post: I am merely venting, and what good is venting unless you vent to someone?
I have "invisible" disabilities. One of them is fibromyalgia syndrome (FMS). Fibromyalgia was believed by many doctors to not even exist until 2008, when a French researcher discovered differences in blood flows to parts of the brain in FMS patients. As I understand it, FMS sufferers have neurons which feel pain more acutely.
Many days, indeed most days, I appear as able-bodied as the next person. Other days, like today, are difficult. Because I do not carry a cane, or use a wheelchair or a scooter, I sometimes get glares from people who see me pull into the blue handicapped spaces. I wish they could understand...
There are days, like today, when it hurts to walk.
There are days, like today, when it hurts to sit.
There are days, like today, when it hurts to move.
There are days, like today, when it hurts to freaking breathe.
I wish they could understand that this can hit anytime: I can feel all right in the morning (as I did today), get in the car, and by the time that I have reached my destination, every muscle in my body has seized up. I have had times when I walk into a grocery store and by the time I leave I can barely lift my feet.
I get really tired of having to ask people to slow down when they walk with me. I get really tired of avoiding places -- such as the Starbucks I was planning on going to, rather than the one I ended up at -- because I cannot find parking close enough to be manageable. I get really tired of being treated as though it was my weight which causes my pain (how can weight cause excruciating pain in my elbows?).
I can work. Working helps keep my occupied. I had a flare this bad last summer, when I was employed by the Census, and I kept on working. When I do not work, the temptation to go to bed can be overwhelming. I am sitting in a Starbucks, not at home, because it is a distraction: far better to write or otherwise get computer work done than to give into the pain.
Being unemployed is a problem: I have to think through the pain enough to give myself tasks. It is much easier to concentrate on tasks someone else sets. I am a very good employee, even when flaring: I do work, and do good work, no matter my level of pain. I take pride in that.
Vicodin only works some of the time, and because it contains acetaminophen, I am limited in the amount I can take. I am supposed to limit my intake of NSAIDS to prevent ulcers. I suppose I could ask my doctor for Oxycontin, but I am not going to try another opiate when the one I've been using has ceased to work. Yes, I am scared of addiction. I cannot take Lyrica, or other fibromyalgia drugs, for medical reasons.
I do not want pity. I do not want to be treated as I were somehow heroic for dealing with this crap. I'm no hero, just a woman putting one foot in front of another. There are a lot of people who deal with occasionally severe chronic pain of one sort or another: I'm just one more. Not to mention other disabilities which have a far greater impact on quality of life.
I just hate this disease, that's all.
Thanks for listening.