Saturday, 30 April 2016

Some Days - All Days?

Some Days!  

We have all had those days: the days where nothing goes right. Yet, we weather the rough times because we are confident that things will look up again tomorrow. 

In a similar way most people have experienced a few day's confinement to bed with a 'flu or other nasty ailment. We detest: the restriction, the inconvenience, and the horrible misery of being being so very vulnerable.

But we are confident that these things will pass.....

Indeed the knowledge that something, so unpleasant, won't last long is often the one thing that keeps us going.

So what happens when an ailment does not pass?  

I remember my early days with ME.  First the frustration of having to take extra time off work, then the increasing horror that this wasn't going to go away.

As the months passed, I was continually explaining to others that I wasn't better "yet".  Naturally, the assumption remained that I would "get better soon".

Unfortunately as the months, and then years passed, it became clear that my health would not spontaneously be restored.  So my every-day-experience became what most people endure only some days.  ME, however, is all days.

So I lost my job.  I lost my ability to walk beyond the confines of the house. I lost many physical abilities that I had previously used to define myself.  I found myself having to become some-one else.

Yet, even in my lowest months (I am doing rather better now, but that is another story), I retained my ability to look after myself; to have conversations with friends; and to occasionally leave home for outings.  With the support of my family and good friends, I found alternative ways to find pleasure in life.  Somehow I re-invented "me".

I am one of the lucky ones.

The trouble with this disease - and the thing that should make healthy people frightened - is that ME does not always leave the sufferer with enough health to create a new existence.

For some, the illness robs them of practically everything. (Read this recent heart breaking story.)

Very Severe ME could be likened to a devastating 'flu - with sufferers living that experience not just for days on end, but for months, and in some cases, years on end.

How can society (or even the less severely affected by ME) ever hope to comprehend what that must feel like?

All days.

Certainly the illness I have experienced has shocked those around me, but it is minor compared to the experiences of those most severely ill with ME.

So, why then is Very Severe ME mostly ignored in research?

Where is the outrage that people are left so long in this state?

And why are healthy people not more afraid of this illness? 

I don't know the answers, and I don't suppose change will happen quickly, but we can all help in little ways:
  • by supporting ME research projects;
  • by keeping up to date with ME news 
  • by adding support to new ME campaigns as they come up.

Think about it: Some days versus ALL days?


A few ME Awareness campaigns:

Links to UK charities that I have donated to at some point:
Hope 4 ME & Fibro Northern Ireland (I am a trustee for this charity)
Invest in ME (My family has done a sponsored cycle & a sponsored run for IiME)
ME Association 

Want to know more about Severe ME?
This is a link to Stonebird Greg Crowhurst's site where he often discusses Severe ME


Tuesday, 19 April 2016

#May12BlogBomb - Please submit your links here.

May 12th Awareness Day is fast approaching, and #May12BlogBomb is back again by popular demand!

This is a chance to use your blog to say something that you think is important about one of the chronic illnesses that share May 12th Awareness Day.

Just ME is primarily an ME blog (obviously), but fibromyalgia, MCS, Lyme and CFS posts are all very much welcomed for #May12BlogBomb.

A bit of history....
I first created the #May12BlogBomb tag in 2014 with the idea of making all blog posts for May 12 Awareness Day identifiable wherever they were shared on social media.

I let people know that I would search the internet, find the links that had been shared using this  #May12BlogBomb tag and that I would collate all the posts in a link list on my blog Just ME.  

I expected about a dozen links, but the idea took off a bit more than that!

As it turned out, trawling the internet for the links proved to be quite a task, and at the end of last year I was unsure if I could manage it another year.

So this year, to make things easier for myself, I'm asking you to submit the links for your awareness posts into the submission form below.  (Apparently this form will only work on a laptop or desktop computer - sorry - so as an alternative you can also send your link to me at

Create your own user feedback survey .

 Perhaps if you don't have a blog, and have something to say, then consider writing a guest post on Just ME or another blog.  (You can contact me on

Please watch out for the new #May12BlogBomb Link List for 2016.  I will schedule it to appear at 11am UK time on May 12th 2016, and will add new links at intervals through the day.

So what will you say this year?


Previous Link Lists can be found here:

#May12BlogBomb 2015 Link List 
May 12 Blog Bomb Link List  (2014)