International MS/CFS awareness day (12.05.2011)

Category: By panda_eyed
Posted this to Facebook today:

In November 2005, I got a flu, which, try as I might, I never seemed to recover from. I seemed to be living with constant flu symptoms -- constant exhaustion, achiness, joint pains, a sore throat that never went away and bouts of fever and chills, just to name a few.

What I didn't know was that this was the beginning of my relationship with ME/CFS (http://www.meassociation.org.uk/?page_id=1666). It took months and months of doctors' visits, numerous blood tests and hospital tests and visits to various specialists before I received my diagnosis. It took only 11 months for me to be diagnosed with ME, but, surprisingly this is a very short period. For some people, it takes years and even decades. Let's think about this -- that’s years of living life with a unknown illness, frightened because you don't know exactly what's wrong with you, of being labelled a hypochondriac by society because you can’t put a name to what you've got.

Today is international ME/CFS awareness day. Please help spread the message so that people with ME/CFS don't have to live with the uncertainty of having no diagnosis and, hence, no treatment. I was lucky – my PCT have a Chronic Fatigue Clinic and I was able to attend therapy sessions and get the support I needed in order to get better. Again, this is very rare. There are very few such clinics in the country, but hopefully raising ME/CFS awareness can change this.

I'm not asking for money, just a simple repost to help spread the word. You shall have my eternal love and gratitude :)
https://www.facebook.com/pages/May-12th-International-MECFS-FM-Awareness-Day/220534562160?ref=ts

Here's an excerpt from something I wrote in September 2006, before I was finally diagnosed with ME/CFS:
I can't tell you how sapping this thing is, but worse than having to live with it, is having people around me doubt that there's anything wrong with me. I have lost track of the number of times that I have been told I need to get more fresh air or more exercise, that I need stop being such a hypochondriac. You may not be able to physically see my symptoms, but they are very real indeed. It’s upsetting that people I love don’t understand.

Sometimes I’m so frustrated that I wish I could transfer my pain onto them for just a few minutes, so that they can feel exactly what I feel all day, every day. How well would they deal with the constant tired, aching, weak muscles, bouts of exhaustion, muscle twitching, recurrent sore throat and illnesses that take weeks to recover from, joint pains, insomnia, dizziness and brain fog?

'This' is not me. I wish that I could wake up tomorrow and feel normal -- just like I used to a year ago. Some days I just want to cry. Some days, I do. But mostly, I just wish that they'll figure out what's wrong with me and make me better.
 

2 comments so far.

  1. GIrl Interrupted 3:56 pm, May 12, 2011
    You were very lucky indeed with your doctors, what area are you in? I have often thought that I have the same thing. And forget about those people who don't know what you are going through. Thanks for posting x
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