I was first diagnosed with ME when I was 16. I was lucky enough to spend most of my 20s in good health, but unfortunately nearly 3 years ago this awful illness struck me down again.
Very little was known about ME when I was 16, and not much more is known about it now. Despite being a chronic, uncurable, debilitating illness which effects thousands of people around the world there is very little research done.
When I was 16 ME was just coming out of its darkest days of being known as yuppie flu and being laughed off and was just beginning to be treated like the serious illness that it is. 14 years later and it still feels like it is just emerging. There are many people like me who are battling to raise awareness amongst everyday folk. Social media has made it much easier to inform the masses and get the word out. But a lot of GPs are still stuck in those dark ages, wanting to laugh it off and not treat it seriously. This is why so much more research is needed, to give the GPs something solid to hold onto.
Many sufferers experience sensory overload, we become hugely sensitive to light, sound, smell, touch. You will very rarely see me outside the house without my sun glasses, even on a dull day. Others have to wear ear defenders, steer clear of strong smells, busy places.
One of my sensitivities is touch. I can no longer stand to wear jewellery, i often need to wear big baggy clothes which don’t restrict me at all, and my hair really irritates me. This is one of the reasons this seemed the perfect fundraising for me, shaving my hair off is something I threaten on most bad days and now I will be able to see what it would really be like and at the same time raise some much needed money and awareness for the ME Association.
I asked my 6 year old daughter how she felt about me shaving my hair off and her first response was “nervous”, so I asked her why nervous, she said “nervous of what other people will think”.
I was shocked that my 6 year old already has preconceptions of conforming and worrying what other people think, this gave me all the more drive to go ahead and show her that it really doesn’t matter what you look like, or what other people think, you are you and that’s all that matters.
So on September 12th my husband will be shaving my head for me – and I can’t wait!
To sponsor me visit www.justgiving.com/joME
Or Text JOME85 £5 (or any amount) to 70070
“It’s Real, it’s Physical, it’s ME”
This fundraising page has now closed, but you can still donate to the ME Association here.