You might have seen my post a few week back looking for volunteers with M.E. to share their 'The Real M.E.' story for The M.E. Show, a podcast supported by The M.E. Association.
The special edition of The M.E. show sharing Real M.E. stories was published this week. A link to it can be found ⇨ here.
I submitted my recording and just like my 5 minute video for Action for M.E. (a link to that blog article and video can be found ⇨ here) it was hard to sum M.E. up in just a couple of minutes.
It was amazing when I started to listen to the podcast to find that my story has been selected. I cried as I listened, hearing my story and that of others as I could relate so much. I could relate to the pain, the isolation, the shared symptoms and the difficulty in living with such an illness and the lack of understanding M.E. has.
My submission did get shortened but it summed up an typical day for me and the choices I have to make with the limited energy I have - at the end of this post I'll leave a copy of the transcript.
This week I've participated in two awareness raising opportunities and it's felt amazing to be able to share my story and help bring understanding of 'The Real M.E.'
The Real M.E.I have my typical days which I talked about and I briefly mentioned my bad days. The days spent in bed in the dark and silence, riddled with pain and a multitude of other symptoms that I can do little about and too brain fogged to understand the most basic of things. To help distract me I listen to something on the lowest volume possible - usually a podcast, audiobook or film just to help distract me. Any sort of sensory stimulation makes the pain worse.
Usually I can't predict those days; sometimes I can if I've done 'too much' the day before, like going to London for an appointment, but even 'too much' on a typical day can trigger a bad day or a series of bad days.
Often people don't understand why I need so much rest. Even just after getting dressed. People often assume that you're lazy or slacking off or not pushing yourself hard enough, but what they don't understand is the consequences of doing too much and that emphasis their belief that you're lazy.
M.E. is much more than feeling tired or feeling like you permanently have the flu. It's to complex to explain or understand until you live with it.
M.E. turns your life upside down, it leaves you isolated, depressed (by this I mean diagnosed clinical depression), vulnerable, dependant, struggling and fighting for the most basic of things (for example I currently have to pay for carers and I've been fighting to get funding but it's proving an almost impossible task).
Check out my #meandmyME posts each Sunday this month to learn more about well, me and my M.E.