The Worst Thing about Fibromyalgia

Reprinted with the kind permission of Sarah Borien and A Life Less Physical

When I was younger, I played a game of Would You Rather with my sister. I remember asking her, “when you’re older, would you rather lose your body or your mind?” What a lovely, cheerful question to ask. Physical health or mental health? Paralysis or dementia?

I remember my answer. I said I’d take physical health because if I lost my mind, at least I wouldn’t know about it.

It’s a ridiculous question for many reasons, but it’s still an accurate representation of my biggest struggle with chronic pain. When your mind is active but your body can’t keep up, it’s the biggest test of your patience.

Friday was Fibromyalgia Awareness Day. Each year I think about the best way to utilise the day; what can I blog about that will grab your attention? how can I raise awareness? and what can I tell you that you haven’t heard before? My awareness day posts never end up being very good – I think I feel a bit desperate when I write them and it comes across in my writing. As it happens, I wasn’t well enough to write one on Friday – go figure – and so you’re getting it today because, quite frankly, we should be raising awareness of invisible illnesses every damn day. We need to be better equipped at caring for and managing mental and physical health issues that cannot be seen. We need to see beyond the smile.

see | me

I’ve decided that this year, I’m going to tell you a story about something that happened to me recently.

So, managing fibromyalgia often means doing as much as you possibly can whilst you’re in a small amount of pain and then dying inside whilst you crash and flare. (This is obviously not the advised way to manage your pain, but let’s be real, this is how a lot of us do it.)

Sometimes, when I’ve been taking it easy and doing things properly, I still crash and flare, and often when my crash and flare is really bad, I think ‘there must be some other way to deal with this, there must be something we’re missing.’ And only when I get to the point where I can no longer cope with the pain, I’ve reached my limit and hit breaking point, do I ask for help. I go to the doctor.

Now this is rare. If I go to the doctor, I’m admitting defeat. I do more preparation for the doctors than I do for job interviews; I get sweaty and nervous and do my best to sound like a sane, normal person despite the fact that I feel like I’m cracking up.

On Tuesday I went to the doctor because one aspect of my health has gotten really bad. It’s got so bad that it’s no longer manageable and something has to change. It’s been over a year, I’ve kept notes, I’ve done research, I’ve checked symptoms and so I went in prepared – pretty sure that I knew what was wrong with me.

Know what he said to me? “Yeah, it’s just your fibro.” Know what I did?

I cried.

Only when I’m at the doctors do I cry about my pain. It sucks. I want to appear like a knowledgeable, rational person, but as I try to articulate my pain whilst my voice breaks and tears roll down my cheeks, I know that he thinks I’m an emotional and hysterical crazy woman. (By the way, this is a great blog about exposing medical sexism and gender bias, and I believe it’s a very relevant part of the way my chronic pain has been managed over the years, but not something I’m going to go in to right now.)

I cried in the pharmacy, I cried in the car, and I cried when I got in the house and R asked me how it went. Big sobbing heart-wrenching tears.

Thankfully, it’s not very often that I feel like this. I reckon once or twice a year you’ll find me sobbing in a heap on the kitchen floor, being picked up by my wonderful partner as I ask through the tears, “why won’t they do anything? This can’t be okay; this can’t be it.”

I normally indulge myself in uncontrollable floods of tears for no more than twenty minutes or so, then I pick myself up, dust myself off and make a cup of tea. This is the life of a chronic pain patient.

Generally, it is what it is and we all crack on with our lives. Often it’s fine, sometimes it’s absolutely fine, but occasionally it’s really quite shit – and what’s worse is that those really shit days are often the days that you’ve built up all your energy and courage to ask for help.

Just in case you’re now worrying (because you’re lovely readers and you do that sometimes), I am of course fine now. I went to a black tie function for work on Thursday (didn’t throw shapes on the dance floor like I wanted, but sat and ate a fancy dinner), and I spent this weekend doing one of my favourite things: life admin. On Saturday I cleaned out my utility room, organised the shed and got my car cleaned, and on Sunday I pulled up weeds in the garden and put on 300 loads of washing. I did all of these jobs until I was in too much pain to carry on, and then once I decided I should probably stop, I did a few more jobs and then a few more jobs. And then I crashed. But then I ate a roast dinner and a chocolate fondant so it was great – don’t judge me.

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