Tuesday 12 May 2015

Guest post from Therese: Happy ME/CFS/Fibro Awareness Day!

It is ME/CFS awareness day, so I would like to tell you a little bit about my personal journey.
I was healthy, just starting out as a Graphic Designer in my first job after art school, looking forward to an adventurous life including travel, love, design and whatever else I could eke out of life. I was hungry, alive and hopeful. Marriage, kids... not on my agenda at that early stage but I would have loved to have got there in the end.

When I was twenty three I came down with a severe virus. I won't bore you with the details, just tell that I have never recovered from it. It wreaked havoc in my body though they are not sure where; possibly my immune system became disordered or over-reactive; maybe my brain is chemically imbalanced or damaged; could be my gut bacteria is completely shot. I react to almost everything I eat and come across in my environment. They are still not sure of what is happening, just that something is.

It has been a hell of a journey and one I would not wish on anyone. There is still very little help to be had for people with these disorders.You have to find your own way; try many ideas; read books, try diets; philosophies; pacing; exercise therapy(god help us!), pray and try not to slit your wrists. Of course you also often have to battle with the disbelief of doctors, family and friends who haven't got a clue what the hell is going on, as you yourself don't either.

Finally, in the The United States, they are finding markers that prove abnormality in the cells. They are considering changing the name from a Syndrome to a Disease (M.E. =Myalgic Encephamyelitis (Old name but preferred by sufferers/ CFS = Chronic Fatigue Syndrome(current name)/ SEID = Systemic Exertion Intolerance Disease - suggested new name). Hopefully this will start a slow avalanche of belief; trials and eventually treatments for people suffering from this disorder.

I believe I am one of the lucky ones. I have found some things that help; diet, pacing myself, resting a lot in between activities, meditation, spiritual beliefs. I am a creative person so I can meander my way around those things when I am up to it. I try to maintain a positive attitude in the midst of this and focus on what I can do. I grieve for the rest, but all things are not possible in even the most healthy life.

My heart goes out to the ones who have ME/CFS so severely that they are bed bound or house bound. They cannot even wash themselves without terrible repercussions. The worst thing that all of us have to deal with is the lack of understanding and belief we face every day of our lives. These people need and deserve support, belief, help, treatments. Many of us don't look sick and this doesn't help our cause.

The next time you hear of someone with ME/CFS or Fibromyalgia (a similar disorder), or any other unseen disease, please try and put yourself in their shoes for a minute. How would you feel if this was your reality? Let our voices be heard; maybe just a hug would help; maybe allow your disbelief to be challenged; maybe reach out a hand to help if it is wanted or needed and if you are able.
And if you are one of the ones that understand, thank you so very much.

Thank you for listening. Therese


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