May 122014
 

Danni on ME Awareness Day 2014Yesterday (Monday) was ME Awareness Day. I had a couple of ideas of blog posts I wanted to write for the day, but my brother came over on Sunday and I spent too long chatting, which means I now have payback. I didn’t wake up until 5.20pm and spent most of the evening in a weird fuzzy state. I had been doing really well (last week I managed 2 hours in the living room with no worsening of symptoms) but I pushed too far Sunday and now I have to pay.

That’s the defining symptom of ME- a worsening of symptoms due to too much activity. What counts as too much depends on the person and the severity of their illness, and to make things complicated it can change from day to day, from hour to hour. The payback has various names (the most common I’ve seen being post exertional malaise or post exertional neuroimmune exhaustion) and the symptoms it causes are as varied as those of the illness itself.

My payback today consists of a worse than normal headache, pain behind my eyes, greater light, noise, smell and touch sensitivity, more pain (mostly muscle and joint pain, some nerve pain, other random pain I can’t really define), more muscle weakness, worsened coordination, worse nausea, difficulty swallowing, muscle spasms and the fuzziness I mentioned earlier. Compared to how I’ve been the last couple of weeks, it’s pretty bad, but before then this was pretty much my normal. I’m hoping with lots of rest I’ll get back to where I was.

If you want to find out more about ME, my previous blog posts about it from two years ago are linked at the top of my blog. There’s also the #MEAwarenessDay hashtag on Twitter. Jenny, Stroopwaffle on Twitter has tweeted about living with very severe ME for years. If you know any other good places please comment as I’m not sure when I’ll be up to finding them. It’s a sucky illness but hopefully there will be a cure found.

 Posted by at 11:35 pm

  3 Responses to “ME Awareness Day 2014”

  1. Lots of Awareness posts here: http://sallyjustme.blogspot.co.uk/2014/05/May12BlogBombLinks.html

    I could add this post to the list if you like. Message me via Twitter @KeelaToo xx

    Hope payback passes quickly.

  2. You were not alone in having to demonstrate ME/CFS rather than write about in on May 12th.
    (see some of the blog bomb posts.)
    I am still slowly working through the vast variety of the blogs published, having, almost a week later, done my payback for being overactive on the 12th.

    I share with you a place on the autistic spectrum as well as the ME/CFS.
    On the bright side it meant that when the ME/CFS hit I don’t have a massive social circle to offend or lose, and I was well-equipped for spending time on my own.

  3. Hi Danni!! I found this the other day and was thinking of you and Gattz found your website! So we are stopping in to send our love 🙂 Here is what I found -> http://grabilla.com/04515-9c109aea-9dae-4f01-97ec-88d04333d3cb.png

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