Last week the
name Fibromyalgia, or its definition did not exist in my everyday language or
vocabulary.
Sure I heard the
word before, I knew it was a condition of some sort. I never bothered to look
into, because it was just one of those news words I heard at the time and
thought how interesting but was never curious enough to search further to find out what it actually meant.
Let’s rewind the clock back to about
three years ago…
Three years
ago, I had ‘symptoms’ what could be classed as generalised symptoms without any concrete, or tangible foundations. At first, for all I knew it could have been Seasonal Affective Disorder (SAD), or the ‘getting
older syndrome much more sensitive to the cold and more tired than usual syndrome.’
No that was
not it.
Goodness I was
still young. I knew something was changing. At first I brushed the symptoms off as something that would soon wear off
Then it was
the countless and endlessness trips to the GP Surgery- where my appointments
became let’s figure out the next missing piece to this jigsaw puzzle
Then I
progressed to the stage of becoming my own, ‘specialist Dr,’ for who could
understand me, or know me better than myself? I had to take control, and stop
feeling vulnerable at the hands of the medical professionals. I had to equip
myself with knowledge that made feel empowered enough to articulate what I was
feeling. I had to stop this foreign language with Dr's, for this cross purpose dialogue was not getting
us anywhere- ‘mind you, we were speaking the same national language’ English.
Then it was
onto the recruitment my own Specialist Dr's phase. Lucky me, I soon discovered that each Dr only focused on assessing different
functions of the body. Eye's wide open, I learnt there was no single medical professional
yet, who could piece all the broken pieces of me together back again. Mon Deau
So it was either the Arthritis, Gluten Intolerance,
Thyroid suspected problems, or something Autoimmune related. All diagnosed and assessed separately.
Moving onto
the next stage, it even get's better. It was the, wait a minute stage, “all
your blood tests are normal”- so everything must be okay with you. So if everything
is okay with you, ‘say’s one medical professional indirectly pointing towards
my head.’ Never felt so insulted in my life, “so it must be my imagination, or
that my head is not okay, or are you trying to imply that I have a mental
health condition? Nothing wrong being
assessed as having a mental health condition, but this is not what I am have
spent nearly 30mins of my time describing to you…
You will
excuse me, for a second. I may just need to take a minute to scream, yell out
my frustrations and anger. Breathe and relax and exhale. For I could possibly
not do so and 'act out of character.’ I would only be defeating my own solo-cause
and be pulled out in a stray jacket.
Fast forward
to today, to this exact moment. I almost
want to wear a bright sign, or a t-shirt with a bright red label to my next GP
appointment which says, ‘TOLD YOU SO.’ Off course I would not so... I am better
than that. Instead, I decided to take control and now I am seeing a GP who actually listens… Thank you
So let’s rewind back again to last week…
So last week Fi-bro-my-algia,
Fibromyalgia now I can pronounce the name fully and even spell it. Fibromyalgia has became my daily vocabulary following medicals tests, after watching countless you-tube videos and undertaking google searches to learn what this condition was all about.
As I entered
the hospital little did I know that I would soon be planted with a scarlet letter. I was given a number, told to walk through multiple doors to the Rheumatology
unit. For some reason it was coloured coded yellow, whether that means anything
or not – who knows? Only my wondering thoughts at the time, as I walked the green mile
down the endless corridor
As soon as entered
through the doors with the number and colour code, I knew this was my final
destination. There was a box in front of me, in which I was to throw my number,
mixed in with the rest of the patient’s numbers in the waiting room.
I wondered
how the medical professionals would be able to identify my number if we were all given the number (1) and same colour code. It downed on me, we were all there with pre-determined and similar medical assessments. The only things that distinguished us all, was that we
were called out by the nurse-one by one by our individual names…
As I sat down
and looked around me, everyone else looked much older than me. ‘I shouldn’t be
here, not yet, everyone else looks so much older than me.’ ---thoughts running
through my mind yet again. Well guess what there is no number, or age to
distinguish, or exempt anyone from this condition.
Another layer of reality kicked in with a dose of a bitter pill
Another layer of reality kicked in with a dose of a bitter pill
The ‘Medical Specialist’
completed his pain assessments tests by the book. First came out the all
familiar words again, ‘your blood tests results appear to be normal with a few minor
concerns.’ My heart nearly sunk again, for which other specialist medical
professional would I need to search for?
Only this
time around it was a different outcome. Turns out, I have Fibromyalgia, I
passed all the pain point’s tests; according to the specialist and the patient
brochure I was handed- all the 18-20 points on my body ached. I ached where I didn’t
even know the pain existed before.
I feel like I should get a medal, or something for passing this test- Unfortunately not the case.
So now I have
a name to the endless, countless painful, soul and physically destroying symptoms
So now I have
a name … do I feel better? Is my nightmare over?
I now have a
name and my reality is now only sinking in
I am told
there is definitely no magic cure, the only treatment is pain relief plus the added extra recommendations to ease the symptoms
Knowing me I will
trying almost everything natural and organic for this thing must have stemmed
from somewhere in the first place right? Just as it came it will soon disappear with
the right treatment right?
Don’t worry
the denial part or phase has already passed
Now it is the
taking it all in phase- the condition/syndrome digesting it, day by day and maximising each opportunity
and being thankful for what I have got phase- (although I hope it is a forever
lasting phase)
Why thankful –
I should be screaming, yelling, pulling my hair out, crying countless tears of ‘the
why me phase’
Don’t’ worry after
all, I am a human being – to not feel any emotion at all is not living in the
true sense…
Why thankful-
the condition itself is all those turbulent emotions wrapped into one. It (the
condition) speaks high volumes on it’s on. When its at its best (or what I
call beast mode- pardon my sense of humour), ‘the chronic stage’ – its angry rage
already does all those things (unravels all it raging emotions), without me needing to be an active participant. All my freedom and liberties of expressions
are taken away- I am bound by the beast until it subsides again
Thankful because
today is a good day – thankful for I am learning to store my energy for today
for a rainy.
Thankful even
though the challenges and loss of certain abilities that I can still
articulate my feelings, walk, write, manage to eat, do everything else even if it’s achieved
in small stages
Thankful for I
have been able to stop and stay still from all the madness and crazy busyness of this word – of being wrapped up in the nothingness of it all and to actually appreciate
each day
Thankful for I
have learnt to be patient and to break down my goals into a few manageable
minutes- routine has become my habit which when I had the capability to do I
did not utilise
Thank for I
allow myself to be and ride through the motions and allow myself to stop.
Are there some days where I feel like kicking and screaming, hell yes... I am only human right? Thankful for that too; ) Only better to focus my brain and in making myself "Limitless," like Matt Lloyd. After-all now I have the time to focus on myself right?
Moral of this Real Narrative?
Value what
you have today, take it all in, use 'it' (you) to the best of your abilities. Achieve
something meaningful enough each day, but not to the detriment of losing yourself completely. Later is procrastination and tomorrow never
comes...
