Saturday 19 December 2015

Walking in a straight line!

Hi,

In the past couple of weeks, something I wasn't aware of has been highlighted to me by two men in my life. For years, I have known that I have very little spatial awareness, a lack of balance and a feeling of disequilibrium. However, when out and about I always believed that, although I felt off kilter, I was walking in a straight line. WRONG!

My dad constantly tells me I'm wobbling about all over the place but as he is the only person to ever say that to me it went in one ear and out the other (kids eh?!). I have recently made a new friend and we went on a short Christmas shopping trip. I was bumping into both him and my surroundings.
Apparently he watched me walk away from him at one point and I was veering to the left and looked unstable. Because inside my head my whole body feels off balance ALL OF THE TIME I am not aware of when other people can see it!

I am just happy to be able to walk from A to B without any kind of walking aid. I am slightly amused that I have finally found the reason for my constant clumsiness! I have to do a daily bruise count after bumping into things on an all too frequent basis. It's a bit like when I used to go swimming. I could swim 30 lengths of an Olympic sized pool. Yay me! It didn't make me a good swimmer though. My brain couldn't cope with the process of doing a proper breaststroke (like a frog). I did a kind of 'pat my head/rub my stomach' scenario. I did breaststroke arms and kicked my legs. It wasn't the most aesthetically pleasing stroke or the fastest. But, I was very happy to get from one end to the other without any drama!

Love,

Sally xx

Monday 14 December 2015

Post-Exertion Malaise ....shown in a picture!

Hello!

I am currently in Northern Ireland. While I am away doing some campaign awareness raising I asked Sally to write down exactly how her body feels after taking Patch for a 20 minute walk. Here goes....

Hi,

I am so used to just saying that I feel tired or can't feel my arms and legs properly I made a conscious effort to note down every symptom that I felt post-dog walk. So I sat in a chair and studied my own body from head to foot. I wrote it all down....in case I forgot how rubbish I felt! Please remember that I am a mild sufferer, Post-Exertion Malaise (PEM) is so much worse in people with worse M.E. than I have.


As you can see, P.E.M affects the whole body. As well as these symptoms, fatigue levels increase immensely and I experience a feeling of not being able to function.

PEM is the reason I have chosen Foggy Does Sport as the next campaign theme. It also seemed appropriate to highlight this element of M.E. as the Institute of Medicine have said M.E. should be renamed Systemic Exertion Intolerance Disease. The way our bodies react to exercise/movement are key to understanding the nature of the illness.

Love,

Sally (and Foggy)