This Thing Called Fi-bro-my-algia

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  

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...