Are
you an M.E us and them-er?
Some
people seem to take the attitude that there is a difference between ME and CFS,
and that if someone has ME they can NEVER recover and if they have CFS it is
not the same as ME. People also have the idea that if someone does recover,
then whatever their symptoms whilst ill, they can’t have had ME, their illness
must be something different BECAUSE: people with ME can NEVER get better.
I
think this is a load of old twaddle!
Sometimes
this involves people who identify as ME sufferers back stabbing others and
trying to argue against them. I myself have had nasty comments from the us and
them-ers about the use of CFS as part of
my twitter tag, the argument being that
if I don’t agree with the term CFS I
shouldn’t use it. I do loathe the term CFS as it appears to identify ‘chronic
fatigue’ as the predominant symptom, demonstrating no insight into the
particular and peculiar nature of the exhaustion experienced in ME, nor in anyway acknowledging the wide array
of other symptoms that - for me
personally - have become the nemesis that dominates my disability. However, I
recognise that this is the term the medical profession use in the UK and that
as such many people will only have this term to identify their illness with. I
used it on twitter in order to ensure I was communicating with as many
sufferers as possible and not just the ones who use the term ME.
The
thing I hate the most about all this is that to use your precious energy
criticising other ill people on the grounds that YOU have the CORRECT
definition of the illness and everybody else is WRONG is not only
counterproductive and spurious but a really really good way to distract and
detract from working out what is going on with this wretched illness and how to
recover from it. Oh yeah but that’s because I forget it is IMPOSSIBLE to
recover from ME, because, catch twenty two, if you do you obviously never had
it! Well what a load of old tosh!
Yes
there are times when I talk to people who have recovered, or people who currently
identify as having MECFS and I do wonder if they have had or have the same
thing as me. How can they own and ride a horse regularly if it’s taken me 11 months to build up from 5
minutes in a pool to 15 minutes? How can people go out and about so much? How
can they have traveled to India whilst saying they still have MECFS??? On bad
days I think "HOW? I want what you have because you can do so much more!!!" But
then I think about all the ignorant people who see me going to the swimming
pool 3 times a week and haven’t a clue
that I am ill, or the friends who just don’t ask or understand if I try to
explain how I can sit and talk to them for 15 minutes like a normal person, but
as I talk the poison is rising and I will pay for it later or tomorrow!
I
do personally believe that you have to be more than chronically tired to have
ME, you have to have an array of additional neurological symptoms, but I do
believe people get better – I live with one of them – and I do believe that as
recovery progresses we can lose the other symptoms and be predominantly left
with tiredness, but more than anything I do believe that judging and bitching
about other people is a huge waste of precious energy, and the best way to ensure
you NEVER recover!
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