'Are you just tired all the time?' A question asked by so many who mean well but don't understand the impact this question has on a person with M.E.
Simply by the use of the word 'just' you get that
instant feeling of inadequacy. That you shouldn't complain or even bother to
mention the condition because it's primary symptom is so nondescript and,
here's the humdinger, 'everyone gets tired'! Six years on from diagnosis it's
only now that I can comfortably talk about the emotional impact this God-damn
condition has had on me.
Let's start the ball rolling with anxiety. At the
lowest point the fear of having a day out somewhere could be crippling. Not
because there was a concern about collapsing (although it was a concern) but
because of the resulting malaise that would follow a few days later and
potentially last for weeks. Then of course there's the weather. If it's too
cold then joints will be in agony and if it's too hot you could expect blood
pressure to plummet. But yeah, I'm just feeling tired all the time!
Now let's take a right turn onto self confidence
avenue. Do I look sick? Can people tell I'm in a s*@t load of pain? Are my
shaking hands visible? Do my clothes really look awful on me now? Imagine this
every time you even think about leaving the house. Even those categorised as
having Mild M.E (https://www.nice.org.uk/guidance/cg53/ifp/chapter/what-is-cfsme
face daily challenges), and this adds another emotional dimension because those
with Moderate or Severe ME can't leave their own house at all and can be bed
bound for years.
This moves us neatly on to guilt. Social media
allows you to build a community of fellow spoonies who truly understand what
everyday life is like with a chronic illness. It's not difficult to express
just how important an emotional lifeline this community is! However, with that
you sometimes feel a pang of guilt creep over you. Imagine you're having a
meltdown at the prospect of leaving the house i.e. being able to do something
others with moderate-severe ME don't even have as an option. Do you have a
right to complain? Of course you do. M.E is a cruel condition that affects each
sufferer in a myriad of ways and it's perfectly acceptable to feel like you've
been dealt a bad hand. It personally took me a long time to realise how
ridiculous this emotion is and taught me to be thankful for my own small
victories; anything from washing your hair to completing a yoga class is a
victory.
Guilt very quickly becomes anger. Seething anger
that some Dr's and medical professionals still dismiss that ME even exists,
with some still spouting the drivel that it's a psychological condition! Anger
at those who need the help of the state the very most being let down and having
to prove their illness. NOBODY WOULD CHOOSE TO HAVE M.E. Anger that a number of
people have reached a dead end and have had to fundraise and spend every penny
their family has on private treatment here in the UK and abroad. Yes,
seriously.
From anger we stumble synthetically drunk into
depression. Many people with longstanding health conditions battle depression.
In the really dark periods you think this will be your life forever. Get up, go
to work, come home, eat, bed by 7pm. Impossible to see a light at the end of
the tunnel, right? Well you do. You accept it for what it is, learn so many
coping techniques that eventually allow you to lead some form of life again. This
gives you back that feeling of control, it might only be for a while until you
have another setback but that's ok. The point is mentally you deal with it in a
healthy way.
Our final pitstop on the emotional rollercoaster of
M.E is gratitude. This will sound strange to so many, both with and without
long term health conditions. When you have options taken away from you or
restrictions placed in your life it makes the little things seem much more like
something to take notice of and be thankful for. Some examples? A bunch of
flowers from a friend to brighten up your day 'just because'. A good book
someone recommended to you because it's not a million pages long but is a good
story to dip in and out of when your energy levels are up to it. A walk round a
National Trust country home taking in the smells, sights and sounds without
feeling nauseous or dizzy. I wouldn't wish ME on my worst enemy, even in
its mildest form, but I will say it's made me look at life in a completely
different way and believe it or not a more positive way. I wouldn't have said
that when first diagnosed but I say it now as someone who, with lots of help,
has navigated the journey in the right way for me.
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