2019 has been a funny year and as full as challenges as ever. I can’t help but always recap on my MS journey as the curtains close on another year, and each year I look at its difficulties and vow that the new year will be my year, it’ll be the year MS and my pain are kinder.
But MS doesn’t play by anyone’s rule book, nor does it start behaving just because the clock whirs forward.
2019 has shown me that more than ever. Since day one of my diagnosis, before it even, there’s been an echo of progression. Sometimes a drip-drop behind the scenes, other times an ocean-sized roar of destruction. One thing that’s always guaranteed is that my MS won’t play by the rules.
Since day one of my diagnosis, before it even, there’s been an echo of progression. Sometimes a drip-drop behind the scenes, other times an ocean-sized roar of destruction
I’ve started and left more blogs unfinished than ever before in the last year, either unable to find the words to truly explain things or else because of fatigue or pain in my arm as the muscle decides it’s had enough.
The hardest decline to deal with has been the widespread drop in my muscle endurance. Despite remaining as active as possible, I’m constantly swimming against the current.
So in 2019 I decided to finally listen to my body and that meant enough was enough, I was going to demand answers about my decline…
But that meant a fight lay ahead!
In 2016 I trusted what doctors said far more than what my own body was trying to tell me. Deep down I knew my medication wasn’t working as I was fast losing muscle endurance despite training harder than ever with my running. But my MRIs were clear … well, until they weren’t!
That summer I had the relapse that has left me with chronic pain and mobility issues to this day. I always regretted not questioning why I’d noticed new symptoms outside of a relapse, but I was new to the game. I know now that a stable MRI is not the full picture, nor does lesion load always correlate with disability. So when my arm endurance suffered in 2019 to the point that I was struggling to work, I knew it was time to fight my corner.
My consultant very swiftly suggested moving me to Ocrevus once it was available (see previous post) as it’s the only drug known to manage both the inflammatory side of the disease (i.e. relapses and the development of new lesions) and the progressive side of the disease. He also suggested a short stint in hospital to complete the work-up and get a multidisciplinary view on what could be done to help me.
Going to battle
I didn’t know it at the time but the fight ahead was only just beginning as my 2-week hospital stint became a battleground when a certain consultant took it upon himself to try and say my progressive symptoms were psychological. He wasn’t my regular consultant as they take turns doing the monthly ward rounds. From being offered antidepressants despite the standardised scoring questionnaire not being used to assess the state of my mental health and despite me insisting I was not depressed, to being told I had a great type of MS and I would not be getting a drug change. I asked him did a great type of MS mean living with chronic pain and using a wheelchair at only 29.
The antidepressant thing did not surprise me as I’ve heard of this happening to others with chronic and invisible illnesses when their symptoms are not black and white. Some doctors simply believe they know best and don’t take a second to actually listen to your experience of living with the disease. It’s no coincidence either that in their eyes it would have been a much cheaper short-term solution than Ocrevus, despite the long-term implications being far greater disability and cost to the state and healthcare system – but that seems to be the way things roll in Ireland; no joined-up thinking or foresight equals snowballing costs for the state and increasing disability for the individual.
It’s not the first time I’ve had my symptoms denied and it won’t be the last.
That seems to be the way things roll in Ireland; no joined-up thinking or foresight equals snowballing costs for the state and increasing disability for the individual
My main consultant was on holiday during my last week in hospital so I left none the wiser about what was going to happen with my treatment since the consultant on ward rounds told me I wouldn’t be getting a med change afterall.
The big move
My own consultant said something on his last visit that stuck with me though. I had questioned him on why this other consultant was giving me contradictory information and his reply was: “The decision about your treatment change will be made by me in clinic and not by anyone in here” And he was true to his word with that. We can only guess as to the politics at play behind the surface but thankfully my consultant listened to me and treated me as a human being. I just hope I’m never under the care of the other guy again, or at least until he realises those of us living with this disease 24-7 have a fair idea of our own symptoms and the true impact of MS on our daily lives. I know of so many others who’ve had a negative experience with him too, so at least I’m not alone with that, it’s just frightening how these people hold our entire lives in their hands and how their ability to listen to us and take on board our experience of MS can affect our future prognosis.
It’s just frightening how these people hold our entire lives in their hands and how their ability to listen to us and take on board our experience of MS can affect our future prognosis
As this was all going on we were preparing to move to Germany. I was due to head the end of September but after I left the hospital my referral for in-patient neuro rehab at the Royal Hospital Donnybrook got lost and it took Vincent’s six weeks to rectify things as they kept denying it was their fault.
When I did eventually make it to the Royal I was blown away and I’ll write about my experience there in a separate post. I made some amazing lifelong friends and I learned more about my MS and pain there than ever before and I can’t thank the staff enough – it was life changing.
I was originally told I’d get Ocrevus by the end of September but this was put back until November as the Government kept delaying its decision to reimburse the drug.
As each month slipped past without me getting on a plane, I kept saying “at least I’ll be there for the Christmas markets” and by early December I was booked on a plane.
But life has a strange way of sticking the knife in when you’re down and 48 hours before I was due to take off I came down with a horrible flu and had to cancel. Germany was slipping further from my grip again. It’s been such a tough year and then to spend 4 months of it away from my husband was torturous.
I’m not going to go into 2020 saying this will be my year as none of us know what’s around the corner regardless of our health. No doubt MS will pave the way ahead with challenges but I will face it all with my head held high. 2019 has been the most insane year in my MS journey to date and I’ve spent more time in hospital than ever before. But the last few months have also given me a lot of hope, hope that this new treatment will slow down the progression and hope that I can finally improve my mobility thanks to the Royal hospital where I watched my daily average step count climb to 5,000. It’s also highlighted just how many amazing friends I have made through my MS journey.
That’s the standout thing MS has given me. For all that’s been lost, for all the friends that I feel I’ve lost, I’ve gained tenfold
See that’s the standout thing MS has given me. For all that’s been lost, for all the friends that I feel I’ve lost, I’ve gained tenfold. It’s those friends and mine and my husband’s amazing family who keep me going. It’s because of them that in spite of MS I’m truly happier than I’ve ever been.
Life is cruel to a lot of good people and the only control we have is how we choose to act in any given situation. There will always be days the pain gets the better of me or I need a good cry but the overriding emotion I feel when all things are considered is always one of gratitude. I’m so grateful for all the good in my life, for my amazing friends and family and for the things that I can do rather than overthinking those that I can’t. It is this gratitude that drives me forward, this love for the people in my life.
I finish this blog from my sofa in Germany. I made it despite ending up with a chest infection and on antibiotics the day before. I’m currently finding my feet and sadly my pain is kicking up holy hell as the weight of the last few months finally hits, so I’m taking it day by day and trying to give my body the TLC it needs because, after all, what better kind of love and gratitude can you give than that of which you give to your own body. And it’s when the going gets tough that it needs it most ❤️