As I mentioned in my blog on the new schedule/writing plans, I’m beginning a weekly column entitled Fibromyalgia Gone Wild. I do this as part of my memoir, Chronically Disposable, as well as in the face of the issues that chronic pain patients are now bringing up over getting treatment and access to treatment. In my case, it comes with the heartbreak of having a doctor finally ask me about my fibromyalgia treatment, and when I told her I’d done nothing because all I’d ever been given was a large prescription for “suck it up”, said we should look at things to do. Then, months later, when I tell her that things are getting worse, due to changes at work and other stressors, does nothing. Basically blames my increasing issues on my fibromyalgia getting worse without offering any solutions.
So here, I’m going to be documenting what I try, both medical and holistic/spiritual, as well as talking about living with a disabling chronic illness while having that dreaded label of “high functioning” where as long as you don’t look as if you need help, no one helps you. I hope this helps.
One of the things I’ve wanted to do for a very long time, is reach out to the writing and creative community and help those who have chronic illnesses of all types. I’ve had a project, including a podcast, on the table and the to do list for a while. And while things are still as they are, I’m getting closer to being able to bring this to you.
Part of that will be this column. Since this is the first column, mostly I just wanted to say “hi” and talk about a bit of what has brought me here. I hope you find this series helpful and I hope you decide to follow the blog. I’ll be making a special page for it on my website, so look for that coming soon.
So sorry you are going through this. I sympathize totally. The lack of knowledge of how to treat intractable illness is staggering.
I have Ehlers Danlos Type III. Dare I say it is a cousin of Fibromyalgia. Bad enough to wake up with different body parts painfully out of alignment each day, and the best supportive care (cannabis) out of reach by law. Just getting your primary doctor to recognize the ramifications of such a disorder seems a giant hurdle. Presenting to a different doctor in an ER setting can be life-threatening as I found when I went to the ER with pneumonia (and also I found out, the flu.) Though I clearly stated I was an ED patient, the prescribing doctor prescribed me an antibiotic the FDA warned was dangerous to ED patients.
Keep fighting the good fight. I’m behind you all the way.