Back in 2001 I went through a lengthy period of being unwell. I had tonsillitis on and off for 3 months straight, which crashed my immune system, leaving me susceptible to every ailment floating in the air. Then one morning I woke with what looked and felt like a bee sting on the inside of my right knee. I left it for a week or so but as the swelling grew I ended up in A & E, who wrongly diagnosed…… a bee sting! After 6 weeks of incredible pain, unable to walk and struggling to even stand upright I made my way to the doctors surgery again and sat there for 4 hours until someone would see me. I eventually got in front of a locum doctor who made an instant diagnosis of Erythema Nodosum
This lead to weeks and weeks of tests, which identified an under active Thyroid gland that took months to treat with the right level of medication and of course whilst all this is going on I’m holding down a full time job, running a house full of kids and a demanding husband.
The upshot of all this lead me to a top rheumatologist as I think the NHS had literally run out of places to send me, tests they could run and had no idea what else to do with me! Thankfully after careful monitoring over 3 months (including keeping a daily pain chart, food and drink diary and an activity calendar) he made the proper diagnosis of Fibromyalgia. It’s more commonly heard of nowadays but when I was diagnosed there was so much controversy around it, as an imagined illness that was all in the mind.
I was lucky to have a consultant who truly believed that whilst Fibro can’t be cured, it can be controlled with medication and I was soon on 7 tablets a day to control it. He did however warn that I could be bed ridden or in need of a wheelchair by the time I turned 40 (I’m 41 and still active by the way.)
Stairs and going uphill became avoided at all costs, and that’s still the case today – you can frequently find me sat the top of a flight of stairs or going extremely pale when I’ve walked up even the slightest gradient.
The hardest thing to deal with throughout all of this has been the constant tiredness that dogs me day in, day out. Chronic Fatigue is a bi-product of Fibro and the Thyroid problem, and it has changed the way I live my life so much.
So when I signed up for the Race for Life last year I knew I was taking on the biggest challenge of my life – but I also knew that if I committed to it mentally then my body would follow suit. It wasn’t easy, I was in tears the whole way round and it took me about a week to fully recover but do you know what? I was one of the first to sign up for it again this year when registration opened in January.
To beat / combat Fibro you have to have a strong, positive attitude. You have to WANT to get better and fight to stay mobile.
I recently discovered Matcha tea powder, not something I would normally do but it’s having an amazing effect on my energy levels and I haven’t felt this well or alive for years – I feel like I’ve woken from a very long sleep! S
So I’m going to fully embrace this new lease of life and live every day to the max – life’s too short not to!
Are you a Fibro survivor? How do you cope with it? I’d love to hear from you below.