Tuesday, May 12, 2009

Better late than never


Yesterday was International M.E. Awareness day, but I'm a little bit slow as usual! However M.E. Awareness week runs until the 17th May so I think this post is still allowed! If you've been following the blog for a while you might know that I suffer from M.E./CFS and Fibromyalgia. I don't like talk about it much but I think its important for people to become aware of this illness and the extent of its affect on people's lives, so today I'm going to overcome my shyness and I'll attempt to answer some of the questions I'm often asked about my illness.

What is M.E./CFS and Fibromyalgia?

M.E. stands for Myalgic Encephalomyelitis , CFS stands for Chronic Fatigue Syndrome. Fibromyalgia is widespread muscle pain.

Does that mean you just feel tired all the time?

No its alot more than that! The mix of symptoms vary from person to person but include the following:

  • Overwhelming persistent fatigue - Its not just normal tiredness, its a complete lack of energy which isn't helped by resting.
  • Chronic pain in muscles and joints
  • Post exertional malaise - which means the illness gets worse after activity or exercise
  • Unrefreshing sleep or difficulty sleeping
  • Cognitive impairment - problems with memory, thinking and difficulty finding words
  • Headaches
  • Problems with the nervous system such as poor temperture control, sensitivity to light and noise and dizzyness
But you don't look sick.

I only go out and about and meet people when I'm feeling better than normal. I don't use a wheelchair or walking stick so there's nothing to alert you to the fact that I'm ill. And I'm pretty good at hiding how I feel from other people! But what you don't see is the other 90% of the time when I'm at home in pain and exhaustion recovering from my ocassional trips out into the world.

So how are you now?

I'm really lucky in that I have a really good doctor and my health has improved significantly in the past year and I hope that in time I will recover. Many other people aren't as lucky and live their lives housebound or even bedbound.

What can I do to help?

If you know someone with M.E./CFS make the effort to stay in touch with them, it is very easy to become isolated if you have a chronic illness.
If M.E./CFS comes up in conversation (especially if there is anything about it in the media this week) and some one makes light of it - putting it down to tiredness or laziness, don't let it pass. Tell them what you've just read that M.E. is a lot more than just tiredness it also involves chronic pain and many other sypthoms that have a major impact on peoples lives.
And finally if you see anyone selling blue ribbons in your part of the world this week please buy one.

Thanks! :)

5 comments:

rachelcreative said...

Great post. You answer the questions so succinctly. Very effective.

chicknamedhermia said...

There really needs to be better promotion for illnesses like this!
My brother has an unusual heart condition which affects him in a similar way and his medication tires him out no end. Because of this finding a job would be very difficult for him, especially because he never exactly excelled academically, and because the condition doesn't technically him disabled, he's unable to get the right help financially! It's so messed up!!!

Winnie said...

You've definitely helped to enlighten me on this condition. I have friends with chronic illnesses and I know how one of the hardest things to do is to talk to other people about them...without scaring them.

deep_in_vogue said...

Great post, very informative!! I honestly didn't know much about this, so thank you!

meaware said...

It would be great to see you blogging for ME/CFS Awareness again in May 2010.

Remember to sign up to the list at http://meaware.wordpress.com so we can collate a list of those who are blogging for ME/CFS Awareness this year.

Thanks

Rachel