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?
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)
This is a link to Stonebird Greg Crowhurst's site where he often discusses Severe ME
Just ME BLOG INDEX.
