Hello! My name is Annette and after a couple of years of constant trips to the doctor with various aches, pains, IBS, allergies and fatigue, I was diagnosed with Fibromyalgia. At first I was thrilled: I was neither mad nor dying, nor did I have one of the nasty neurological diseases I feared, but I knew nothing about FMS so I did what any sensible person does – hit the internet!
All those years ago there wasn’t as much out there about fibromayalgia as there is now, but I found enough to discover that while not terminal, it was not yet curable. My next challenge was to find an online support group where I could meet up virtually with fellow sufferers. Frankly, I was disappointed with what I found. Although there were several forums out there, most were populated with people feeling sorry for themselves and sharing tales of misery. While it can be cathartic to have a good old moan occasionally, I didn’t believe it was helpful or healthy to dwell on all the negatives. What I wanted was a community where fellow fibro and CFS sufferers shared their experiences in a positive way. What works for you? What have you found helpful? What did you manage to do today that you’re proud of? How are you managing to kick your illness’s arse yesterday? What made you laugh?
My experience of medical care for Fibromyalgia in the Scotland is quite poor. The NHS is under immense pressure and does what it can, but for chronic illnesses such as fibromyalgia, it seems to me that the sufferer must take responsibility for their own treatment and therapies. If you expect your GP to do all the legwork for you, you’ll be very disappointed. You’ll often get more advice from a fellow fibro bod than from the medical profession.
This is where the idea for The Fibronaut was born. It has taken several years – we fibronauts may be slow, but we do get there in the end. My hope is that by sharing my own experiences, viewed through my ‘good day’ glasses, I might be the sunshine in a (fibro) foggy day. I’ll be reviewing therapies and gadgets I have tried, sharing my successes, however small they might be, how the meds work for me, and hopeully giving you a laugh at my foggy expense.
You can contact me here and ask me anything. I’ll try to be as honest as I can be for you.
So, let’s not wallow in self pity. Instead, let us help each other live a more positive life.
This is not a medical site and I have no medical qualifications. What I write here relates ONLY to my own experiences and should you wish to try something I have, please consult your own medical professional.