Image Credit: Robert Joyce

How I Rebuilt My Life with MS

Reading time | 4 mins

Over the past five years my life has changed dramatically. Because of a simple low speed car accident, I now live with a persistent headache that feels as though it has invaded every part of my being. It has robbed me of my ability to concentrate and left me unable to remember how to complete tasks that I had once found simple.

This pain has also awoken my dormant relapsing remitting multiple sclerosis, to the extent that my taste, touch and hearing have suffered, and my mobility has almost completely disappeared. 

In this modern age of the Internet and high speed communication, my ability to be part of an increasingly complex working world gradually deteriorated. No longer am I able to work in the world I once traversed with such confidence.

Suddenly I was disabled. Excluded. Cast out of employment.  I found this very difficult to bear, and have shed many tears for the old me who is now lost. I’ve spent many dark days lying in bed, hiding from a world with its constant reminders of my old life. It was as easy, almost tantalising, to succumb to those feelings.

MS destroyed everything

With all this, I had started to wonder:

“Am I enough?”

“Has my ability to contribute to the world finished?”

“Should I just stop?”

Over the past five years, it was as though a wildfire has swept into my life and destroyed everything. While I’ve tried to nurture ideas rising out of the ashes, so many have failed to take root and survive in such a harsh environment. Thankfully however, some ideas did become stronger. And after nourishing these saplings with determination and optimism, I feel like I now see a whole new world growing around me.

Refocusing my life with mindfulness and meditation

Nowadays, my focus is in the moment – meditation and journaling have helped me with this. Nearly every day I try to have 20 minutes of quiet time, concentrating on my breath and using a body mapping technique to centre myself. After this I journal, sharing all that I am grateful for and all that I am looking forward to with the blank pages.

Every day I use a different fountain pen and ink to scribe my thoughts into a hardbound volume. It’s so simple, yet the act of moving the nib across the page feels like a channel directly from my brain. All those thoughts about the past, present, and future flood out of my brain onto the thick sheets and it feels as if I’m being emptied of all unnecessary thoughts.

Then I start my day, free from worry.

Sharing my story and becoming an advocate

Through my experience of living with a chronic illness, I have now learned to live for the now instead of dwelling on the past. Through the thoughts and experiences I share in my personal blog (A 30 Minute Life) or on this platform, I hope that anyone else who is going through a similar experience will feel less alone.

Over the past two years, people have even started to share their own stories with me, so I know that sharing my experiences has given others comfort in their time of need.

On top of blogging, I’ve also become a patient advocate and representative. This work has taken many different forms, from attending Multiple Sclerosis conferences to helping to find new technologies to assist patients. More recently, I have been involved with patient engagement and the development of new therapies for many different illnesses, including MS.

Being part of this space has been both thrilling and frustrating, and despite my increased pain and fatigue, I still want to continue to take part. After all, so many people living with the condition can benefit from the new concepts and ideas that are being developed nowadays.

Learning to pace myself

In taking on these extra responsibilities, the idea of pacing has become increasingly important for me and is a skill I must work on (it does not come naturally). Often I have pushed too far and have paid a steep price, spending many days recovering. Now, I’m slowly learning how to pace myself but I must continue to find out where my limits are and stay within them - just like an Olympic athlete, except much slower.

These new tasks have now become my work and a huge part of my life. Now I find reason in my written words and in patient advocacy. There are many times when I would love to work harder, speak longer, and shout louder but sometimes this just isn’t possible.

I’ve realised that what I do is enough and that the world is listening.

The takeaway

Is this a path for everyone with a chronic condition? Probably not. But the idea of finding a new purpose is powerful. Perhaps when you were young you painted, wrote stories, or found joy in some other hobby? Who is to say you can’t return to these pursuits after your diagnosis. When you hit a barrier, acknowledge it, refocus and rebuild it again. Immerse yourself in what you can do and be open to all the other possibilities that come along with this.

UK/MED/19/0193 August 2019