August 08, 2014

Severe M.E. Awareness Day.

Hello lovely readers, today is another important day for all Myalgic Encephalomyelitis suffers. All the way back in May, we had International M.E. Awareness Day and M.E. Awareness Week, which I contributed through a series of back-to-back articles of my personal experiences with the illness, now it's time for Severe M.E. Awareness Day.

August 8th was chosen as Severe M.E. Awareness Day because it is former M.E. sufferer Sophia Mirza's, birth date. Sadly Sophia died with a severe case of M.E. in 2005, and today would have been her 41st birthday. This day has been marked as her remembrance as well as awareness.


As an existence, we inhabit different levels of the spectrum. Whether it be personality traits or mentality or operative methods, we are each individual and diverse to one another. Myalgic Encephalomyelitis is a spectrum of condition. Each sufferer differs from the other in the level of their severity. Although society’s perception of M.E. is misconstrued enough, severe M.E. exceeds it further.

Throughout the last three years, it’s taken time, tears and strength to progress and gradually alter the level of my condition with Myalgic Encephalomyelitis. Although, I still have a long way to reach the levels considered mild and moderate, I have absolutely traveled higher on the spectrum of intensity as I have documented on this blog. But for two, excruciatingly painful, years, I was trapped in the darker end of the scale that is Severe M.E..

M.E. Awareness Poster.
See the original here.
2013 © Tammy-Louise Wilkins
To quote an article I published during M.E.Awareness Week; I withdrew from life, my life, my friends, my work. I withdrew from myself. It was as though I forgot who I was. The woman I saw in the mirror was not the one I remembered; the latter had become a blurred dream.

To say that those whom suffer with Severe M.E. are confined to the darkness of an isolated room would be hitting the nail on the head. Patients with this are most often either bed-bound or unable to leave the house without the aid of a wheelchair.

I was extremely lucky that I just about escaped having to use a wheelchair. I have my own stubbornness and pride and the fact that I had a mother who could practically carry me around to thank for that. Alas, I was imprisoned inside, either in a bed or on a sofa for a long time.

For months, I found light and sound almost intolerable and would often retreat to the solitude of blackened room. I had to have blackout curtains installed due to this. It was as though I was staring into the blistering lustre of the sun and I could feel my eyes disintegrating. With sound, even if I were in a room with one person, it would be the equivalent to a rowdy crowd. There are times, even now; that I feel like there is a whirlwind of voices filling my ears.

Only 25% of Myalgic Encephalomyelitis sufferers are dealt this dreadful card of fate which is why it has been given an individual awareness day for is variety in occurrence.

Now, there is another a reason I am writing this article today. A lovely woman named Janet Smart began an awareness campaign for Severe M.E. entitled, Black Dress Day, in which a person wears a black dress and take a snap of them in it. So, of course, I am very happy to contribute:


I’d like to thank fellow blogger, Sally Burch, for bringing this campaign to my attention. I would also like to ask you to get involved! Search your wardrobes for either a black dress or (for men) a black shirt and take a photo and tweet it to me at @TammyLWilkins.

So, to provide a silver lining, I would like to end this article with this;

Myalgic Encephalomyelitis is a very difficult condition to live with in itself, let alone when it is the most painful level of the tier. But even with Severe M.E., you have every chance of improving. Hold onto that person you once were and use that as your motivation to climb out of that bed and stride out of that house on your own two feet. You can do it!

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1 comment:

  1. Hi Tammy, thanks for sharing. I also suffer from ME/CFS and had no idea there was a black dress day to raise awareness. What a great idea!. I'm glad to hear that you are a lot better now than what you were a few years ago. I hope your going well at the moment! :)

    Lennae xxx
    www.lennae87.wordpress.com

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