May 08, 2012

Myalgic Encephalomyelitis Awareness Week.

Hello lovely readers, as you all know I've had CFS/ME for more than a year now and this week (6th-12th May) is M.E. Awareness Week. It's definitely a difficult subject to explain and it's come to my attention that critics are denying the existence of the invisible illness.

Reading a recent article of a reporter who was given a one-sided (and false might I add) batch of information and then was contacted by someone who made them realize that M.E. really is a complicated and difficult illness was...well, refreshing. When I first got officially diagnosed with M.E. a lot of people I know accused me of simply being lazy for sleeping all the time and barely doing anything, ignorant of the affect their words had on me.

To get a clearer view of what M.E. & it's effects do, my mother has kindly volunteered to ask questions she'd ask if she didn't know what M.E. was.

How do you feel on a day-to-day basis?
At the moment I'm (as my therapist would say) booming & busting. Some days are good. Some days are bad. To be honest it's unpredictable, in my case I have a schedule of the amount of activity I'm allowed to do in a day to help balance and decrease my setbacks.

Do you get enough help with M.E.?
Yes I do, there are a lot of people involved in helping me and there's a lot of travelling involved but without these people, I wouldn't have come this far. Of course, there are times when I feel there are too many people involved but sometimes I have to trust them.

Do you feel your family, friends etc. understand M.E. & your condition?
In all honesty? I don't think any of them can understand fully of my condition. Every person with this illness is different and one of the key elements of M.E. is that I close up. I become very anxious voicing my opinions. Out of everyone, my mother is the one who understands the most. Over the course of coming to terms with the fact I had Myalgic Encephalomyelitis, my mother & I created a very close bond. She witnesses the affects that M.E. has on me and continues to this day to accompany me to appointments as support.

How do you feel compared to this time last year? 
Hmm, this time last year I was lying on the living room sofa sleeping. I began therapy shortly after. Now I'm more self-confident, in more control of my sleep and genuinely in a much better state than I was. I still have a really long way to go, just one step at a time.



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2 comments:

  1. Really good really does make u realise just how bad it can be

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  2. Wow,
    I didn't realize the full extent of M.E. and probably won't seeing as I don't have it myself. I commend you for your courage and determination.....And I think that you handle yourself well. Of course I could just be saying that because I'm biased. ;-) *Hugs Love* XOXO

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