It took me a good few goes to remember how to pronounce fi-bro-my-al-gia. I had to keep the leaflet on hand in case I needed to peep down and sound it out in my head. Considering around 2 million people in the UK have fibromyalgia, around 90% of them being women, it's odd that I had never heard it mentioned before.
The rheumatologist only took about fifteen minutes to diagnose me. A few questions, a quick look at my knees and she was hurrying me out of the door. I honestly didn't think that much of it. I didn't think an awkward sounding word on a piece of paper would change anything.
Six months on, my life has pretty much been turned upside down. I've had to stop teaching, I'm on a whole bunch of drugs. I'm not supposed to eat carbs any more which, frankly, is unreasonable. I can't get through most days without an afternoon nap and I have applied for a disability benefit. Because I have a disability. Fibromyalgia is a chronic condition (meaning it sucks and won't be going anywhere soon) and affects every day life. Everything, in every day life.
However, I am not one to go down without a fight. Being a busy, independent, little bee is one thing I will not compromise on. It might take me a while, but I fully intend to reclaim my life. Fibromyalgia is one of those 'medical grey areas' that hasn't had a whole lot of research and is a bit flimsy in terms of actual, professional advice. Lucky for us we live in the age of the Internet because there are lots of web tips from the fibro community about what changes to make to ease the symptoms.
Even a change you want to make can be scary. It's rare that I make it through the day without counting myself a failure in one way or another. 'Managing my energy levels' feels way more like being a lazy bum and a bad mum. It's hard to explain to a four year old why I can't take him to the park. Again. When I do try to be the active and energetic person I used to be, it can take days to recover.
My CPN said I need to learn my limits. Unfortunately, I've never been the kind of person to accept doing any less than my absolute best. Today's biggest struggle is convincing myself that I'm not a complete waste of space and that, however much fibromyalgia might now be a part of my life, I am not defined by a diagnosis.
The first year or so for me were the worst. Like you, I got worse after I was diagnosed (I was diagnosed early), but things did eventually improve for me. A lot of it was about diet change. While I didn't give up carbs completely, I did find that my body does not like grains (so I avoid those). I still get carbs (although a lot less of them) through fruits and veggies. My diet is closer to Paleo than anything now, but it's made a huge difference. I was diagnosed a little over 4 years ago and now I'm back in school and living somewhat normally again. The fact that you write will be a huge help. Keep that up and if you already do some freelancing that will be a good direction to continue in because you have some control over when you work, and can take on more when you feel up to it. My thoughts are with you that you will find the best treatment course for you and see some improvement in time.
ReplyDeleteThank you, Julie. It's great to hear that you have found a balance that works for you. I'm still working out what diet works best for me but it does seem to have a massive impact on my energy levels. Thank you for sharing some of your positivity :)
DeleteB
Hey :)
ReplyDeleteOne of my closest friends was diagnosed with the same condition as you, along with hip dysplasia and she's getting her life back...to the full. An au pair in Switzerland, active and back on the carbs and gluten. It will get better. I can put you in touch with her, if you need some encouragement - she has twitter etc
Melly x