Living with Primary Progressive MS

This week Mary Deveraux shares with us her experience of Primary Progressive MS. Akin to the big stories we’re all familiar with, PPMS brings unexpected twists to life no-one ever expects. 

Living with Primary Progressive MS is like starting a new book, with a difference. Each and every page you turn brings an unexpected ‘twist in the tale’. As the days add up, I realise my experience is like an epic story akin to the Iliad. It consumes my life and the lives of all that surrounds me as we grapple with the unexpected (far too regularly). The motto changed in my home from “will we” to “if your up to it”.

Once there was a name put on it, Primary Progressive Multiple Sclerosis (PPMS) it was as though the floodgates opened. Every sort of symptom came in my door, wrapped around and in me and never left my body. The PPMS brings new ones with it too. From incredible pain to mind blowing fatigue that makes me want to become one with the sofa! PPMS is exhausting and the mental strain that makes it even more so.  The forgetfullness, the difficulty in making decisions, the doubting myself and a pervading send of fear of doing something wrong that would effect others and making mistakes. In my line of work I couldn't afford mistakes. I would never have forgiven myself. After a difficult six years of traumatic change, I stopped running away from my illness. I am learning to accept that the work that I had dedicated my life to had to go. Then there was the personal guilt and shame of letting THAT go. Because of my symptoms, I failed an off-the-road test and my driving licence was taken away. 

Accepting all these changes is hard. Readers would know from my previous piece that I was always ‘The Fixer’. Now I can’t fix myself. Yet, as time is going on I am learning that I can help myself. I have had to get out and make new friends and do things at 50 I never thought I would be doing. I accept all the help that’s offered with the grace and kindness with which it is offered. I now need a cane to walk and know I might need a mobility scooter on holidays to make sure I make the most of my holiday time. That’s okay. 

These changes (the cane, the mobility scooter, asking for help, being open about my vulnerability) don’t come easy nor over night. But this process of asking for help and accepting it absolutely is making my life easier and this transition more tolerable. Living with Primary Progressive MS is never going to be easy for me; it doesn’t give me a break or a holiday. It has broken my heart. But as I accept the changes, that I have more limitations, I still pick up my book. Each day I get to turn the pages and through all the heartache, I’m determined to find the hero and the great things in my story. Today, may we all remember WE ARE the heroes in our story.