Costochondritis sucks so hard.
Costochondritis sucks so hard.
In the Kingdom of the Sick: A Social History of Chronic Illness in America
by Laurie Edwards
quoting Aviva Brandt, who is chronically ill and undiagnosed
Interview with Donna Nowak Robillard about Dysautonomia, POTS and Hemiplegic Migraine
This is a fantastic interview with fellow POTS & Hemiplegic Migraine medical zebra, Donna Nowalk…
"We don’t critique social attitudes to tell people how to think. We critique social attitudes to talk about how we think, and how their actions impact us.”
I have the worst flare up of skin allodynia pain I have ever experienced before. My back is on fire with this raw burning pain. I have patches of it on my arms and thighs as well but mostly it is my back that is agonizing. It has been five days now since it began and I am crawling out of my skin. Hurts to touch. Hurts to wear clothes. Hurts like hell to have a shower that is for sure. It isn’t anything I have every experienced to this degree before. Not to this level of pain anyway.
I have nerve damage in my hand and not too long ago when the dishwasher broke I went to do dishes and stuck that hand in hot dishwater. Those fired nerves are damn temperature sensitive which I tend to forget until I do something stupid like that. And this pain reminds me of that pain. But also after that incident the skin on the top of my hand had felt raw and burnt… and the sensation crawled up my arm the next few weeks. So I had this arm of tender, raw skin from that initial jolt I had given the nerves. And it is the same as I have now on my arms. Same sensation. The pain on my back is the same sensation just quite a bit more intense. So that times about a hundred.
I have tried everything to help with it. All the muscles creams I own which is more than a few given I have chronic pain. But this is nerve pain and none of them work. The only think touching the pain in the least is my tramacet painkiller. Makes it so that it is not agonizing and while I am still very aware of it, can still feel the pain against my clothes, still hurts to touch… it is far more tolerable.
The problem I find with this sort of sudden nerve pain incident which is, yes, extremely painful is that I have no clue if I should see my doctor about it or not. It seems logical to. A normal person would. It is just I assume it is a horrific FM flare up which means nothing can be done about it so why make a fuss? And it is always this mental bickering that makes it so hard to determine when something is ‘important’ enough to worry about. Pain level wise it certainly seems so. I mean the painkiller I am taking to dampen it is my migraine rescue medication… not for anything else. I don’t actually have anything for FM but Lyrica which clearly is failing on that count. I feel like I should be mentioning I’m using the painkiller to dampen this horrible nerve pain. And that maybe there is a nerve topical agent that might be beneficial. But mostly I just want it to stop, like now. Like right now. Five days of this is five days too many.
Do you consider yourself disabled?
It’s kind of a loaded term in today’s world. And it shouldn’t be- but there’s a lot of politics behind it.
I think your answer should have more to do with where you are in your life, how much your illness impacts you, and how you…
I didn’t at one time. When I was younger I believed that I was coping with my illness well enough that I was not what I would call disabled by it. Limited by it certainly but not disabled. However I have more than one chronic pain condition now and for a while there I was in denial of the fact I was not coping very well with it. Just sort of trying to survive really. I was forced to acknowledge this is disabling. This dramatically affects my quality of life.It is a matter of impact for me to be honest. Although by the time I accepted the term I was completely unable to work and I think the term fit quite a few years before that. You just like to believe your illness is not going to have such a significant impact for a significant duration. When it does it is difficult to accept that. Difficult I suppose to accept that more compromises have to made for it even though those compromises improve your wellbeing.
I am not ashamed of the label certainly. I think there should be more awareness out there for different types of disabilities and their impact on lives. Some of the stigma with invisible disabilities is because people do not even think they are disabilities. Like chronic migraines, which I find to be quite disabling.