Zooming off of that slip road

Credit Mike Baldwin cartoonstock …this image says it all

So how do you react when your specialist says that having ms is a shag ….how do you react when what he was referring to was the decline in mobility ,decline in your bodily functions and decline in your cognitive and fine motor skills….
I cried …. .
As he spoke the tears gently leaked into my face mask …
I didnt look at chris ..i couldn’t because I would have fallen apart …..

How do you react when you hear that the time scales and evidence of historic episodes and the evidence of lesions show 2 dates and if decisions are going to be made its now or never …
Let me explain….

2006 means I’m 14 years into the gruelling unkind journey that ms has force me to travel …

2013 means I’m 8 years into this gruelling journey …
both dates mean I’ve been fighting for a long time something i didn’t understand …..

imagine sitting in a tailback wanting to know whats happened on the road infront of you ..

Its natural that we want to see what is lying ahead… your headspace full of frustration because you need to get on with your journey distraction techniques in full use …open the window , turn up the tunes ,rummage in the glove box for something to eat …tidy the footwell….dust the dash board with your sleeve , change the radio channel to see if u can find a report on what the problem is, turn the engine off …catch the eye of a fellow driver and on contact roll them shrugging your shoulders . back into the glovebox to eat that sticky boiled sweet spending ages removing the wrapper from the sweet only to drop it !! You get the idea ……..but amongst the frustration, you feel worried for what lies ahead …what impact will the unfolding events have on those involved …
their day has been changed forever….

I mean we will get through the road block once the rubber neckers move through…..but for those involved the journey they embarked on may have ended in a different way to what they had thought would happen.. actually not may, but definitely!

For many of my friends and family they knew something was wrong for many years so a diagnosis was a relief .. a kinda rubber necking moment as they passed by understanding finally what had slowed my journey down and some of them are still sat on the side of the motorway at the site of impact choosing to stick with me and my family as the debris gets cleared the best it can be ….so we finally had answers..and we had something to blame …

but we are miles away from ever opening the road up so it can be used as it used to be used …
ms is a life long condition set to challenge me every single day and its exhausting …..

My recent final bowel tests confirmed they are failing due to nerve damage…a collective scattering of lesions in my spine so coloric irrigation done daily is my next move forward taking responsibility of the management of something most of you take for granted ….a change in drug medication is on the cards perhaps oral medication that can cause other complications !!! . ..whoop whoop !!

My plea to the universe is this ….
please give me a break. ..im tired…..

i still feel devastated and hard done by …

i feel desperate and afraid …

i feel sad and confused ……

and sometimes I feel nothing …nothing at all because shock ripples through and leaves you numb ……

Maybe its the way of protecting the soul or maybe its just a way to play the ignorance card …They say ignorance is bliss but ms still pokes me ,prods me and reminds me its there causing disruption to my very core ….

we all get pissed off with road works where the traffic is slow the diversions are tedious and the whole chinangans pushes all the wrong buttons, but we know the road works will come to an end eventually and the journey we take on daily goes back to normal….

Ms is the same…. the body works hard to find new neurological pathways as lesions cause disruption but sadly repair isn’t an option and so ‘road closures’ are perminant …..and eventually the network of pathways become nonexistent the many slip roads taken and diversions made are hard work and exhausting and eventually the body shuts down….like a car overheating and running out of fuel ..
And its game over ….

If u travel a road that is constantly under repair and the journey gets you down you look for another option. some choosing to change route, some changing the circumstances so the journey becomes obsolete and some just putting up with it because change is uncomfortable, emotionally overwhelming or to big a challenge to commit too …..

So when I sat there listening to my neurological specialists view on hsct after I had asked him what he would do in my situation …. i can choose to sit in the road works for the rest of my life. …

His words “getting used to and adapting to a life of disability preparing for the worst and waiting for the worse to arrive” or “you can pull out the stops and act now as time is not on your side”…..

I’m sat at a crossroads and in my head the decision is made but my heart is feeling wobbly…I’m coming off of the next slip road in the hopes of finding a new road to travel one that is an easier ride and one that is kinder ….but tge slip road is fast approaching and I haven’t had a huge amount of time to think things through ..and that causes anxiety …..yet i know I should pull off that motorway despite the worries concerns and uncertainty…..
I mean I have a satnav right … I have all the knowledge I need at my fingertips but its still a massive decision I have to commit to 100% and it can’t be taken lightly….the journey ahead is far from a jolly and the recovery will be painful long and hard!!

Satnav on my journey is like a net work of supportive souls …
it will get you through,support you, talk to you and if you press the right buttons give you all the knowledge fully understood by those that get tge full blow of my melt downs and without it you never get to place that you feel safe …..

So my car may look shiny and all in order but pop the bonnet and you’ll see mayhem ..you’ll see carnnage and you’ll see pain that somedays is unbareable …. my esophagus is failing, my bowels are failing, my left and right foot are failing, my breathing is causing nighttime issues, fatigue is a right royal pain in the arse cutting short my ability to push through with a smile ,I’m a rattling drugs trolley borderline junkie and all in aid of numbing the pain to a point that its bareable and pumping my body weekly with some kind of Russian hamster dna Overy type thing that helps my body fight my immune system…not nice hey ….

i don’t want to live like this anymore …

I’m not second guessing whats wrong with me …..i know whats wrong and there is a chance I can stop this slog and speed off on the next slip road but it has to be done now and at speed but I am hoping I don’t crash and burn in the process ….

so thats exactly what I’m going to do tge exceleratoris to the floor and I’ve committed …supported by the ms team, supported by Dr hillier ,supported finalky by my local gp surgery and supported by my family im going to mexico ….

With you all supporting me and knowing you all understand the seriousness of the procedure I will be enduring will help me stay calm, help me stay sane and help me be brave …..

2021 will be a year of challenges…..but if you want to change the direction of your journey and you have the strength of mind to endure the miles why wouldn’t you ??

please help me and my family keep the faith and stay emotionally strong .. .i maybe heading to mexico for life changing treatment but Chris Hannibal Naomi Roberts Thomas Hannibal and the extended family will need the emotional support to be able to support me and without that we can’t stay strong …. if you want to donate to elevate the strain of the financial implications then head to gofundme… and search multiple sclerosis a bid for freedom set up by my family
Lots of love xxxxx

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