I was told by my diagnosing doctor, as if it were some reason to jump up and down with joy, that Fibromyalgia was not progressive and it is not fatal.
I think my doctor was full of shit on the first part. If it isn’t progressive why for the last 3 years have my episodes gotten worse and lasted longer than one before?
I think what bothers me the most is that the Arthritis Foundation says that Fibromyalgia is the 2nd most diagnosed form of Arthritis – yet no one really knows about it. Even the specialists don’t know that much.
I feel like I have been plowed over by a Mack truck on a daily basis, and my muscles and brain function are so off kilter it feels like I am swimming in pudding. I don’t “look” sick – but I am. I am disabled. I can not work because while I hurt all of the time enough to keep me from working – it gets worse. There are days I can not get out of bed. There are days I can get out of bed but I can’t remember how to spell my own name for the brain fog. It is sad and it upsets me that I am young and this shit has destroyed who I was.
Fibromyalgia has stolen so much from me. And yet it has given so much to me.
I now know the side effects of every pain med, SSRI, SSNI, and NSAID on the market. I know which foods will send me running to the bathroom and which scents, cleaners and other seemingly harmless products “everyone” uses in daily life will make my day miserable. I learn new and exciting ways to get down stairs or into a pick up truck without sending pain throughout my body – unfortunately I usually look like some crazed goof doing it.
Most of the people I know don’t have a reference of what it is even like – remotely. There are few shining souls that show me compassion and empathy without understanding. And unfortunately there are a few that even have Fibro – so they know first hand. It makes me sad that people I love have to suffer like this. I wouldn’t wish this shit on my worst enemy. Well, maybe a few of them. = )
If you are reading this – I will ask you this. Take a brief moment and look up a little information about Fibromyalgia. If you know someone with Fibro – don’t treat them like outcasts or act like they are just being silly or making anything up. It is real, it hurts and it is terribly hard to function with this crap on a good day much less a bad flare day. Show a little patience.
* http://www.butyoudontlooksick.com a great site – with an even better theory/explanation to those who don’t have fibro .. http://www.butyoudontlooksick.com/the_spoon_theory/