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



  1. I'm highly dysfunctional, rarely leave the house, and have been losing mobility lately (plus just caught myself depressed again, which will need working out).

    And yet, as you consider yourself, I am one of the lucky ones.

    If everything I do works out right, I can write a bit every day, and the bits accumulate, and I'm working on my second massive novel - as other with ME/CFS can't even sit up in bed to watch TV.

    I hate to complain, but I am as far from normal as our most severe patients are from me, and it scares the heck out of me how far I can still fall.

    I had high hopes for 2016, but unless there is some real luck, all that seems to be happening is that more peddlers are hopping on our train - to try to sell us THEIR wares, not to find out what we need and get it to us somehow.

    I'm probably maligning some hard-working researchers somewhere, but it seems there are MORE useless ideas and treatments now than when I got sick 27 years ago and had to give up a good career as a physics researcher at Princeton.

    They STILL have no more real idea than then.

    1. 27 years! (((Hugs))) I am such a beginner with all this. xx

      I think it is the apathy of those with the power to make real research happen that is so depressing. That and the thwarting of any funding promised towards the psyche approach.

    2. Yep, because 27 years ago they knew it was an infectious/immune disease-- the name change to CFIDS-- but they couldn't find agent x that was causing it. Like HIV causes AIDS -- then they just went back to saying its in your head-- and more and more people are sick. And we're much older-- we've aged out of the treatment protocols. Got half a life. Sometimes it's hard to not get depressed.

  2. All days here, too, of course.
    Well said, Sally

    1. Thank you. Together we can make a noise and hopefully change will follow?

  3. You ask a lot of good questions, most of which have no one real answer, except this one:

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

    Because it's not contagious.

    I think if it were, as with HIV/AIDS, then research would've been there for us decades ago.


    1. Yes too true. And because the media world over latch onto the notion that we are "tired" as if somehow a couple of lifestyle changes could change that - and so others discount the illness as somehow being our own fault. Meh.

    2. There is also the UK government who if you are not frail and completely bedbound will refuse Disability support and on my report claimed I was lying about everything.

      And they wanted PACE to have the current result which is that the illness is thought of as a mental illness and all they have to do is prescribe exercise and a shrink to fix us (which then becomes they provide neither of those and just blame us for being lazy/unwilling instead).

      I have said before that if anyone says "at least it's not cancer" to me in person they will face a very bad time. This is a fate worse than cancer and I'm left with just enough physical and mental ability to realise the cage I'm locked in, and that the people who should have the keys are sneering at me instead of helping. I can rattle the bars and at 34 I'm pretty sure that's all I have ahead of me. More fatigue, pain and frustration.

    3. Challenge ruling on disability - often people are only getting the support they need once it is declined & then that decision challenged. It seems they almost turn you down first time on principle. :(

      As for ME research etc. I am optimistic that there is some change in the air... xx

  4. for years I thought I as going to get better, hoping they would find something that actually had a cure but instead I have gone down hill until I am now housebound except for docs visits to check for other things that do happen. I am turned away because they can't do anything for me or send me to a shrink which I would gladly go if that were the case. It is a very lonely existence and we get taken advantage of by those who are using our desperation to make money, especially docs who claim to have had it but got cured by taking their vitamins, eating gluten free and buying their books.

    1. I understand. Hopefully things are changing now, but for those who have been ill much longer than me, it has been too long a wait. ((Hugs))

  5. Wow, that is such a profound thought and I had never thought of it in those terms. The general population should be more afraid, after all this could happen to anyone and then they too would be not only battling with an incurable disease but somehow what I find worse is societies disbelief and intolerance of it.

    I got sick in 1982 after glandular fever and have lived a roller coaster of health since. I have been "well" by my standards - not societies but now I am on a four year slide and am terrified at what point I will hit bottom. And they should be afraid because I could so easily be them.

    1. Such a long time to be so ill Suze_Dee - unimaginable really for those who are healthy, or even like me only ill a few years. And yes it is an unpredictable illness. Wishing you better times soon. xx

  6. I believe some are afraid of "it", and do fear it's contagious, and distance themselves partially because of that. They may only know
    one or a few tho, and no external confirmation, so just staying away is their "protection". Also, protection from complex thoughts, listening to us, or research and discernment .:(

    1. I think the "protection from complex thoughts" is quite a big thing. You have hit the nail on the head.

  7. I would rather have treatable cancer (including surgeries) than this disease - but the ultimate question is terminal cancer. Is life imprisonment in solitary confinement better than hanging? Can't really say - but don't want either.

    1. Such difficult things to talk about Mary. No easy answers. People say we shouldn't compare ME to cancer, because (they say) cancer kills and ME doesn't. One look at Whitney Dafoe and other very severe patients should make it clear that ME can be just as scary as cancer. If only ME could attract the research funding and public sympathy of cancer.