Friday, 8 August 2014

Today is Severe Me/CFS Day - the invisible disability


So today, is M.E Awareness Day.

Why is this here? Why is this important to me?
Simple.  I have it.  I live with it. I fight it.  Sometimes i win. Sometimes it wins...

OK, so lets start at the beginning....

WHAT IS M.E?

Chronic fatigue syndrome/ME is a condition where you have long-term disabling tiredness (fatigue). Most people with chronic fatigue syndrome/ME also have one or more other symptoms such as muscular pains, joint pains, disturbed sleep patterns, poor concentration, headaches. The cause is not known. Treatments that may help in some cases (but not all) include a programme of graded exercise therapy (GET) and cognitive behavioural therapy (CBT).
(source:http://www.patient.co.uk/health/chronic-fatigue-syndromeme)

The cause is still being discovered and new theories arise regularly....some believe a viral condition (like the flu, or pneumonia) can trigger it, but it doesn't explain why the symptoms continue onwards.....Some believe it can be environmental, a traumatic event could trigger it (like a death, or divorce), and its even been claimed it could be inherited....no fixed reason.


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WHAT ARE THE SYMPTOMS?
This list is as long as your arm...or possibly your leg!  Each day adds a different way to make it difficult for you....

Pictures say it better i think...!


And that's a non exhaustive list....

AS FOR ME?
Yup, i fight it everyday.  I have that many medication to try and help that i swear i rattle.  I hate the days when i know i have no chance of doing anything.....i hate it when M.E wins....
Good intentions......falling by the wayside and you have no control over it....


Think about this......and put yourself into the equation - it wont show you the whole picture, as you don't feel it - but you can see what so many M.E sufferers have to deal with everyday.....and that's before even trying to do something...


Not here to preach - just trying to make people see that what they think they see.....they shouldn't judge the book by its cover...

It makes M.E Sufferers feel like they are choosing to be this way....and God.....i would give ANYTHING to not have this.  To be "normal"..whatever normal is, but i just don't want to be like THIS....to feel like my life has been a complete waste of time and.......just.....
Not to be looked at by the older generations when you park in a blue badge space (legitimately - i have a blue badge) but i can see in their eyes accusing me of parking in what they seem to consider their own parking lots.
To not have to walk with a Goddamn walking stick...how old does that make me feel!?
To sleep...but always be constantly tired....
To do something for an hour one day, and pay for it physically and mentally for at least 3 days after.....

Ill stop the waffle now!! 


And lastly, please remember.....


apologies for the heavy post, but as you can see its a matter close to my heart and very being.

If you even think you may have the symptoms of M.E - please see your GP.
There are so many websites that can help and support out there, i should follow my own advice and read them!

Oh, also - check out this post from Chrissy at My Sparkly Life - 10 surprising things you didn't know from M.E - a good read!

Take care to everyone as always, but to fellow sufferers, be good to yourself, i wish for good days and long restful sleeps for all of us xxx



18 comments:

  1. Fantastic post about such an important subject. Well done for raising awareness. That info graphic is v good.

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  2. I know a couple of people with ME and I wouldn't wish it on anyone. I know how hard it is to live with chronic tiredness

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  3. Now I understand why government spent millions about this research. Great information!

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  4. Great post! Thanks for sharing this important information :) Good to know! Shared for you :)

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  5. I think you are right about the pictures, they do help explain and I think that is partially the problem, the explanations are not straightforward enough. When someone starts to explain it you think "Oh constantly tired, yeah that is me" only no it isn't because it just isn't the same x

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  6. Fantastic post!! So informative!I will definitely share this to raise awareness!

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  7. What a fantastic blog post lots of information .

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  8. Great post, I have been a carer for a young mum in the past and know how difficult this is.

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  9. Lots of great information. I can't imagine how difficult it must be x

    http://www.youbabymemummy.com

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  10. Great, informative post! I've known people with this, it is quite a difficult thing to live with.

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  11. It must be awful to have M.E. I hope you are coping at the moment, it must be a daily struggle. Hugs xx

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  12. I hate it when people say ohh your feel better after a good rest.. Yeah course.. Things like this can really help some people understand it though - so important.x

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  13. wow, thank you all so much for your comments!
    Ive never really said much about M.E on here, in a way another way of hiding from it i guess, but thank you for showing me that if more info got out there, then hopefully more people would be aware of it.
    Claire
    xx

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  14. Disability is hard to understand when there is no physical signs - informative post

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  15. This is a very informative post. Awareness is key with issues such as ME

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  16. One of my relatives suffers with ME and I see how much it affects her and her family, such a horrible condition and one that needs more awareness

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  17. Thank you for sharing what must be a very personal post for you and raising awareness x

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  18. Very informative and well written - I agree that education & talking about it is the way to make people understand this condition more.

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always love to hear from you guys! Feel free to leave a blog link AS LONG as your comment is relevant to the post and not just a link! Thanks all! xx