My life with primary progressive MS
My husband John and I both like motorcycles. In 2013 we were out on our bikes and we had an accident. We were stationary at a roundabout and a young driver didn’t see us, and hit us.
Getting a diagnosis of primary progressive MS
For years after the accident I kept having issues. My foot was dragging and tripping and I found it hard to do things like peel potatoes. My doctor kept saying it was because of the accident, but eventually I was given an MRI scan.
I went off to the hospital on my own to get the results. I’d had so many visits with specialists it wasn’t a big deal. I got there and was told the symptoms I’d been experiencing were actually because of primary progressive MS. I was so not prepared, I didn’t have a clue. I fell apart, crying at the neurologist.
When I got home John, completely unaware, asked me how I’d got on. Again, I was a mess, and he was devastated.
I was also relieved. I had kept saying I was hurting and no-one was listening. Now I could finally face whatever was given my way.
What helps me manage my MS
MS affects my walking and my holding. If you cut me in half it would be my left hand side which is not working. I’ve reacted to all the medicines they’ve given me to help with things like pain. I’m that one person in a million who is allergic to it.
Now I use mindfulness as my little trick to get over whatever is in my mind or my body. Thinking of breathing stops me thinking about the pain that is coming. It’s like the brain doesn’t do two thoughts at the same time. So if you channel your thoughts into breathing you might think, gosh that hurts but it’s not as intense.
My husband is a great help. I always think I’ve got to do my housework this weekend and it has got to be spotless. But he’ll say “Flo, relax” or “Flo, you have already cleaned the floor in the front room you don’t need to clean the hallway”. I might still do the cooking but he’ll do the washing up. We’re a partnership and he puts me right.
The adaptations that help me work and play
I work part time in finance. I told my employers straight off after my diagnosis and they have been the most supportive people. I work around my difficulties by doing things like making tick sheets to make sure I’ve not forgotten anything and using the speaker on the phone. My office is near the mobility toilet and if I need time off for hospital appointments it’s not a problem.
In my spare time I like listening to music. The Christmas after I was diagnosed my husband gave me saxophone lessons as a gift because he knew that was something close to my heart. I did them from February until September last year, then I had to stop because I couldn’t depress the notes anymore and blowing into the saxophone was tiring me out.
It was difficult giving it up but I got a little recorder instead, so everything I’ve learned I’m transposing to the recorder. It’s going alright – although my dog keeps on putting her head under the pillow or hiding in the kitchen…
Keeping active in the garden
I was a very active lady. Now keeping active physically for me is going into the garden to water my plants. With gardening you don’t have to think about anything else apart from what is growing, or not growing, today. There’s no judgement from anyone else or even from me.
I do tend to judge myself a lot, comparing what I used to do to what I can’t now. As soon as I think like that I do something else that I’m good at.
Telling my story using a voice app
A friend suggested it might be useful for me to talk about my MS, and useful for others. So I started talking to myself using a voice app on my phone called Speech Note.
I wanted to talk about the symptoms, my physical abilities or disabilities, my mental process. Whether it’s my balance, my sight, my guts – because unfortunately I have got bowel incontinence myself. Everything is pretty much in there, there’s no hiding.
Navigating through my MS jungle
English is not my first language so the app would not always hear the right word. I used to shout at my phone trying to speak properly and articulate. And the next thing you know it’s trying to record my dog snoring…It’s been fun, but also emotional as I was re-living what has happened to me.
I now have a 66-page book about my life with MS, which I’ve published on Amazon Kindle. All the royalties will got to the MS Society.
I’ve called it the Unseen Jungle because my mind is here, there and everywhere. It’s like trying to get through a jungle. I’m not a professional writer and wrote the book to be ‘as me’ as possible.
Writing a book was something I never thought I’d be able to do. So I have learnt something about myself: that I was able to do it.
After finishing it I felt there was a void in my life. So now I’m writing a book for children, using my cat and my dog as inspiration. I have my little notebook next to me, and some ideas in there already.
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