There’s a double edge sword that comes with advocating for yourself when you have a chronic health condition like fibromyalgia.

For those who don’t know, fibro is a chronic pain condition that has over 200 symptoms a few of which are fatigue, overstimulation from environment, body temperature dysregulation and wide spread pain throughout the body where even a feather light touch is registered by the nervous system as pain. This leads to mobility issues and takes a huge toll on a persons mental health as well. Then add to that brain fog where even remembering the simplest things like what’s my name or where am I today to putting the kettle in the fridge.

There is a very strong connection of Fibro being in the mind. Now don’t be thinking that this means it’s all made up. It most certainly isn’t. The nervous system is effectively in overdrive and the mind/body connection is a thing. Think about it this way if someone is embarrassed they may blush. The flushing of the cheeks is a physical manifestation of an emotion, right? Well in Fibro when the mind is stressed, worried or upset it manifests as pain, fatigue, anxiety etc in the body and so finding ways to manage the mind as well as the body is important.

And why am I blogging about this now? Well if you saw my blog from August 16th you’ll know that I spent three weeks going back and forth with Haslemere Hall advocating for my rights to not be excluded on the basis of my mental health which was picked up by the local BBC. During the interviews with BBC South Today and BBC Radio Surrey I was incredibly anxious. The reporter/presenter were great at helping to put me at ease but it still had an impact. During the hour and a half I spent with Steve Humphrey and cameraman Trevor Adamson, my heart rate maxed at 170BPM during our outdoor filming and while just sitting during the interview it was around 108BPM. On top of this I was hot and clammy, so much so that by the time we wrapped and I got indoors around 14:30 my clothing was soaked.

Why put myself through it then I hear you say. Well no one else is going advocate for me are they? And if I didn’t stand up for myself I run the risk of being excluded from more places and becoming isolated which would lead to my social anxiety getting worse to the point I could become a recluse which is something I do not want to happen. And so when I feel up to it I fight. And then I take the aftermath of a flare up in pain and fatigue that follows. 

I’ll ride out this wave, I’ll keep doing the things I know help like a massage, listening to podcasts, long soak in the bath and listen to my body when she tells me she needs to sleep and rest. And if I ride the wave rather than fight it, it is more likely to pass more quickly.