5 Aspects of Fibromyalgia to Accept in the New Year
I got my diagnosis for fibromyalgia around 2014, seven years after I first found out what fibromyalgia was. The first time I mentioned to a doctor that I seemed to have a lot of the symptoms, the doctor laughed and told me not to rely on “Doctor Google.” She refused to discuss what my symptoms could be. Only that they couldn’t possibly be fibromyalgia.
Back then I was too nervous to push the point, too nervous to say I didn’t get my information from Google – I had a friend who was actually younger than me who had fibromyalgia, and she said we shared a lot of symptoms. But I pushed it so far out of my mind I actually forgot about it.
It was quite an interesting seven years. I moved houses nine times and found my way to some amazing doctors. Doctors who taught me that I needed to be as involved in my treatment as they were. They had the knowledge but only I knew how my body worked.
That was how, seven years later, a doctor brought up fibromyalgia to me, and I remembered that first appointment. Since getting the diagnosis, it has been easier to deal with the miasma of symptoms fibromyalgia tends to be.
Accepting you have fibro isn’t one simple decision. Here are a few aspects of the illness you can work on accepting first to help lead you to an overall acceptance of the illness:
1. Accept that sensory overload is a real thing.
Maybe make cards to explain it to other people!
Sometimes our brains take in so much information, and fibromyalgia turns us into this huge open nerve. All the information batters us over and over until we feel so frazzled it’s like our brain is torn open.
When this happens, pushing through it isn’t the answer as it can just hurt more. You need to find a quiet room with dark or low lighting. My partner made me a silk eye cover and wow, it’s amazing.
So when you overload, excuse yourself, go somewhere dark and quiet with a soft blanket and a nice, relaxing drink like hot chocolate. Just take an hour for you.
2. Accept that fibro can build up.
Just like a system that builds up grime each day, imagine we are dishwashers. They work well time and time again, then they work just slightly less well, then…not as well. Not drastically – just a tiny bit, but the grime keeps building up, and after a while they don’t clean anything. You might have to stop and clean it, taking out bits covered in limescale or…something (it might be obvious I’ve never owned a dishwasher, but I know something like this happens).
It happens with us, too. We do the same thing. We push ourselves a little bit each day, over and over, and it builds up. Soon we have to push even harder to do the same amount.
So just stop. Take a day. Put it on a calendar so you can be sure this day is clear. Give yourself a reboot. Curl up on the sofa and read, have a bubble bath with mountains of bubbles, snuggle a partner or pet…or both! Color a book…whatever you need to reboot.
Make sure it’s what you need. People are always telling me to meditate, but that doesn’t work for me – meditation stresses me out! So make sure your reboot is calibrated for you.
3. Accept that, sadly, not all doctors will believe you.
We know fibromyalgia is real. But even now, some doctors still do not think it is a real condition. I don’t know why they still have this outdated view, but sadly some of them do.
This does not mean you are a faker; it means your doctor is wrong and maybe it’s time to embark on the long, arduous journey of finding a new GP.
Fibromyalgia is very real. We can feel it in every inch of our bodies. It stretches into parts of our lives some doctors can’t possibly ever imagine!
4. Accept that not everyone experiences fibromyalgia in the same way.
I think this is why doctors have a problem with fibromyalgia. When looking at the huge list of all the possible symptoms and signs of fibromyalgia, sometimes I feel like I’m just checking things off – like I’m separate from my body, walking around with a clipboard. “Hmm, yes, skin randomly goes red for no reason… Heat causes hot flashes… Cold makes the knees creak… Tick, Tick, Tick…”
Not all of my ticks will match up perfectly with yours. Not all of your ticks will match up perfectly with another fibromite. This doesn’t mean none of us have fibromyalgia; it means fibromyalgia is huge.
However, finding other people with fibromyalgia can be incredibly uplifting. Maybe you find that the weird symptom you’ve had for years, unsure whether or not it was a “fibro thing,” is something they have, too! I didn’t know how validating having someone say, “Wow! Me too!” could be.
5. Accept that flares happen. It isn’t your fault.
Sometimes a flare will come out of nowhere and completely, 100 percent blindside you. Sometimes, you just know… You know it’s coming and you can trace it back to a particular event. Either way, it isn’t your fault.
Although, spending an extra 10 minutes in the garden and forgetting to wear a hat is a major no-no for me. If my ears get cold, the migraine monster will rise up from the depths and bite my head. I’ve known this trigger since I was 15 years old. Every time I forget to put a hat on, feel the ear go cold…
But I’ll spend longer beating myself up than the migraine itself lasts. My partners told me it isn’t my fault. I argued – I know the trigger, I know what happens if forget the hat.
But they have a point. It isn’t my fault that some tick in my body’s physiology causes me to have crazy pain when my ears get cold. Now this doesn’t mean I should go galavanting off outside in the cold with nothing in my ears, but, when I forget – and I will forget (fibro fog…we know it all too well) – blaming myself isn’t going to make me feel better.
*Extra bonus point for 2017 *
Love yourself. Care for yourself. Don’t beat yourself up. You didn’t ask for the fibro life – the fibro life chose you, and that isn’t your fault.
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