How is the PEM going after the exam, well it normally
takes 4 days for Angus to experience the full impact of his Post Exertional
Malaise (PEM). PEM simply means an increase in symptoms and a decrease in
ability to be active, things like listening and reading are affected when in a
PEM state. His exam was on 23rd May 2023, this was written on the 26th.
I want you to come along on the journey with me.
There are 101 reasons why but taking you with us as we journey through the
impact of PEM, I hope you will learn something useful and understand us more.
So far, he has been fooling around the house
with the extra adrenalin, talking to his mates and watching a movie on his
laptop with them on Face Time. I’m going to try to tell you of the double edge
sword of these moments. After 10 years of living through the complex cycle of
PEM, I hold on to those moments of who he really is and marvel at the young man
who has had to learn to wear expertly the mask of normality.
I have spent most of the time giggling at his
antics, like a ghostly entity that swoons around the house in a cloud of contented
energy, silent and unseen, as he roams outside and looks in at the windows with
funny and googly faces. I have learnt over the time of his illness that these
moments of normal life, is to be savored. Not hoped for with by every fiber in
my body, as I once did because the pain of the let down as he progressively slips
into pain and suffering of PEM, is too much for my heart to take.
Sadly, with every inch of mindfulness I try to
possess so that I can curb this innate response to my child’s contented
ownership of time, to shout out that recovery is here. I never can use that
mask of mindfulness and hide behind positivity because that positivity has broken
me many times before.
Living with someone who has severe PEM is like
living with someone who has periodic Alzheimer’s. You can’t ask questions
because they get lost, they slip through the gaps in the brain forged by
dysregulation of every system in his body. You have to second guess what is
needed, wanted, or the question they need answering.
Angus uses FaceTime to ask for help when his
pain is bad, and his heart rate is bouncing around his chest like an excited
monkey.
It goes something like this he calls me on
FaceTime.
Me “you ok”
Angus “you’re talking too loud”
Me “sorry”
Angus “what did you want mum?”
Me “you rang me”
With frustration he ends the call only to
reconnect a couple of seconds later. By this time, I figured that he needs
water, it could be food but I’m guessing it is water.
I answer with a softer voice “would you like me
to bring up water?”
Angus “what?”
Me “Water?” at this point, less words means a better
outcome”.
Angus “Yes”
It is a weird experience when the person you
know changes in a flash from someone who is verbally articulate, to one that is
unable to communicate a simple need such as - needing water. It comes with so
much frustration from us both, but it always makes me giggle a little. How
funny our existence is now.
I take the water up and then lay by him in bed.
I feel there is something going on that I had not picked up and he needed time
to get his brain to work out what it was. He drank 2-3 glasses of water
straight down; I could see the dry lips already taking shape. He then took me
through a question he had in the exam. He spoke fast and in a fragmented way.
It was like being fired at by one of those tennis ball flinger things, with
someone changing the direction and speed. Then it happened, the full flow of
what I can only describe as intelligence on another level, coherent and concise.
I know at this point I cannot interrupt him or ask questions, but to keep up as
best as I can because he will be giving me a test at the end of it all.
He took another gulp of water and asked, “Well what
do you think? Did I do alright on that question”.
My first thought was, if you answered as you had
in the last bit of the information he just articulated then yep; if only I knew
what the question was.. However, if it was like the first part of your explanation
then I have no idea. What I actually said was “I’m not an examiner but it
sounded amazing to me”.
“Not helpful mum”.
“I know but it’s the best I can do”. It’s his
laugh that has me in a contented lull of life. He knows me better than I know myself,
I think.
He then informed me he needed to space out and
chill listening to audible, his only way of switching off his brain a little,
to help with energy saving.
“Where are your ear buds I asked”.
“Under the bed I’ll get them in a minute”.
I know this would be too much for him, I looked
under the bed and there they were at the furthest point, against a wall. I got
the grabber thing we use as I am short, and our cupboards are tall it is a very
useful tool for many occasions.
I have the most horrendous uncontrollable laugh
ever possessed as a giggle morphed in to a belly laugh. There I was stuck by
both my north and south appendages, under a bed with a grabber thing, trying
hard to fling out or grab 2 very small and slippery earbuds. We both ended in
hysterics.
Obviously, I did get unstuck in the end and yes
Angus did video my heroic effort. A kept moment that I will constantly look
back on. However. Having fun and being normal can make you feel a fraud. You
are either ill or not, there is no area in between where life lurks a little.
I know we should grab every occasion to laugh
as hard as we can, we deserve it after all. But laughing never ever makes up
for the loss we face on a daily basis, nor does it stop me or Angus from having
to wear a normal mask because the public and medical fraternity demand it and neither
can they deal with the reality of chronically illness.
To constantly be positive is positively harmful
though and although there is no crime in having fun and laughing spontaneously society
can make you feel as if you are chronically ill you have to prove it every
second of every day. More importantly is that it is OK to show the world what it
is to live with illness that takes your life, dreams away and for society to accept
it.
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