Tomorrow is ME awareness day. I have made a video diary of one “normal day” to try and show those who know me (and anyone else who is interested) what it is like living with ME on a day-to-day basis.
This was actually a pretty good day for me…
What is ME?
The Action for ME website describes ME as: “A long-term (chronic) fluctuating illness that causes symptoms affecting many body systems, more commonly the nervous and immune systems.”
“Feeling extremely tired or exhausted most, or all of the time, is one of the main symptoms of M.E. This feels very different from ordinary tiredness.
“Simple physical or mental activities, or combinations of activities, can leave you feeling shattered or struggling to function.”
This exhaustion also comes with a wide array of other symptoms. See a full list here.
How can you help?
What we need is biomedical research to help us and the medical profession understand what causes ME and how it can be treated. If you give whatever you can to one of the charities below, it will help us in this mission.
You can help fund research and awareness by donating to one of these deserving causes:
UK Rituximab trial for M.E patients: www.ukrituximabtrial.org or text: “RTUX66 £2” (or £5 or £10) to 70070
Invest in ME: www.investinme.org
ME Research UK: www.meresearch.org.uk
Action for ME: www.actionforme.org.uk
ME association: www.meassociation.org.uk
A history of my illness
I was first diagnosed with Myalgic encephalomyelitis when I was 14-years-old. However, after missing a year of school completely, I gradually improved. By the time I was 17, I lived a nearly-normal life, except for the odd bad day. By the time I was 19, I was back to normal.
I went to university, gained a degree in Journalism and Creative Writing, and started work as a reporter on a trade magazine. However, at the age of 25, when everything seemed to be going so well for me, I suddenly became ill again. After ruling out other neurological disorders, I was told I once again had ME. I suspect that, after all, it had never left me completely.
This time, recovery hasn’t come so easily and, after an initial period of deterioration, followed by a spell of improvement, I seem to have plateaued.
This is why I am so keen to raise awareness of this illness, which will hopefully lead to increased research into and heightened understanding of ME.
This is me before I got ill and then me now: