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Luke Bowes

Luke's 100k Run :O

I am running 100k (62 miles) for Fibromyalgia Action because more awareness & £££ is needed to find treatments

92 %
£483.00
raised of £525 target
by 17 supporters
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  • Event: London to Brighton Challenge 2018, 26 May 2018 to 27 May 2018

Fibromyalgia Action

We Provide information and support research to Improve treatment options for FM.

Charity Registration No. 1042582

Story

Fibromyalgia?

As many will know my Mum and one of my closest friends, Abbie, suffers from Fibromyalgia. In case you aren't aware: 

NHS DEFINITION
Fibromyalgia is a long-term condition that causes pain all over the body. As well as widespread pain, people with fibromyalgia may also have: increased sensitivity to pain. fatigue (extreme tiredness) muscle stiffness.

Life with Fibromyalgia

You just can’t do the things you used to do, even if you are a very strong-willed person you'll end up suffering twice as much the next way if you do your best to push through and do things. It often causes extreme fatigue and problems with sleeping. Things you take for granted such as washing, popping to the shops or going out with friends becomes a hard chore and you often end up unintentionally isolating yourself. 

Predicting how you’ll feel next week or next month is impossible. Which means it's impossible to plan, yet alone to work for some sufferers. Not only that but Fibro Fog is an frequent symptom of fibromyalgia, it is a broad term used to encompass many of the brain related symptoms including poor memory, directional difficulties and confusion to name a few.

Many are diagnosed later on in life when they've had a family, marriage and/or many other things they want and although they don't want to burden their loved ones, they can be supported. Others have barely stepped into the world of work before being diagnosed leaving careers, families and ambitions in taters.

Treatment/awareness

It's incredibly frustrating as not only is there no cure but there also is no fixed treatment to counteract symptoms. What works for one person may not work for another, it's a constant state of trial and error. Alongside this there is very little support or understanding from government agencies. It's also it's something that isn't talked about very much: since I've known about my Mum's and Abbie's Fibromyalgia I now know another 2 other people who suffer from the condition.

Whilst my mum has found something that helps, she still suffers some days more than others and that was only after being lucky enough to get some private advice/treatment something that not everyone is able to afford. Unfortunately Abbie has not found something that works for her yet, as I mentioned above treatment is very much pot luck and constantly trying different things, which is incredibly difficult in a situation where you are unable to work, yet you don't get any support to help, no matter how much you try! To see them on their worst days is very upsetting, they can be in so much pain that they struggle to get out of bed and perform simple tasks we take for granted.

What I'm doing and why

So I'm planning to run/jog 100K between London and Brighton in May 2018 in order to try and raise as much money as possible to help raise awareness and support other fibromyalgia suffers. What my body will feel training and running that distance is, to be honest, probably a small taster of what they can go through on a daily basis. 

Any donation or support you can give is greatly appreciated! Thank you!

Please consider signing this petition regarding classing fibromyalgia as a disability and thus hopefully opening further support options for those who suffer - https://www.change.org/p/uk-parliament-make-fibromyalgia-a-disability

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