Community: Real Life

Happy MEAW


Anna

16-year-old Anna tells us how life is as a teenager with Myalgic Encephalomyelitis (M.E.).
Entry: 5

Anna's raising awareness for M.E. Awareness Week.

Firstly and most importantly, this week (May 9-16) is M.E. awareness week, so here I am raising awareness of my condition. It is really hard for me to explain all about M.E. and I have tried but now I've found you lovely people a good website which explains it much better than I do: www.sleepydust.net. I would say "happy MEAW" but I risk sounding like a cat and I don't think that happy is the right word to associate with M.E. so I shall move on to the exciting world of my hospital appointments instead.

This week I had my first session of hydro in two years. I had forgotten how tiring it can be, but it is important that now my health is getting slightly better I try my hardest at improving my leg strength. It was horrible having to wear a swimming costume but once I got over the initial "is this going to go see-through" fear I relaxed a little as my physio floated me around gently swishing my legs from side to side in the warm pool. Floating might seem relaxing to most people but it really tired me out and simple things like getting dressed have become really difficult as a result, (I'll spare you the details!).

"I would say "happy MEAW" but I risk sounding like a cat and I don't think that happy is the right word to associate with M.E."

Another major event of the week was my monthly appointment with my paediatrician. The thing is we have a very volatile relationship and when I get angry with him all hell breaks loose! This week was a fairly pleasant experience for a change, we talked about various new medications due to some new test results of mine and discussed powered wheelchairs, social services, the freezing cold sea and numerous other things! No shouting, both of us smiling and we even said a polite goodbye. Result!

Finally I would like to tell you all about my secret identity - may I introduce you all to Mr Ted. Mr Ted is the pseudonym I use to write to the ill children that belong to Postpals, a volunteer-run organisation that aims to put a smile on sick childrens faces. I helped start this organisation with friends that I met through AYME but had to step down from my role as team member due to appointments, study and the strain on my health. But now I work as a volunteer which means less pressure and I don't need to worry about how much work I do. Postpals is set up so you, the general public can send letters and drawings to sick children across Britain. The satisfaction you receive is tremendous and it is one of the few organisations where literally every little bit helps! (plug over).

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