Personal thoughts on living with MS from Joanne, one of the partners of the clinic.
The last week of April sees all the MS charities coming together to focus how MS makes people feel, think and act and to raise awareness of the reality of living with MS.
When I was suddenly diagnosed with relapsing remitting Multiple Sclerosis 7 years ago, I felt devastated. Some people wait years for the diagnosis, living with unexplained symptoms until their suspicions are finally confirmed. For me, it was completely unexpected. I had a sudden onset of numbness as if someone had drawn a line down the centre of my body and everything on the left was numb. Initial investigations ruled out a stroke, but confirmed the typical picture of patches of demyelination in my brain. Symptoms of MS are diverse and vary from one person to another. As well as numbness, I had muscle spasms, severe pain, fatigue (I pretty well slept for a month during the worst phase), bladder irritability (every 30 minutes during the initial days of the relapse), loss of balance, unable to walk properly, unable to talk properly – the wrong words just kept blurting out or I couldn’t find words. My family learned not to laugh when I said “Pass me that thing you use to stir a cup of tea”. Infuriating!
I remember thinking that my life as I knew it was over. I love my work as a physiotherapist and acupuncturist. I’m a keen mountain hiker and love skiing and I really couldn’t imagine a day when I would do those things again. My bucket list had a couple of big things on it – I wanted to go back to Yosemite National Park to climb Half Dome, which had defeated me years earlier and I wanted to go heliskiing with my son and husband.
I tried to keep a positive outlook, but I felt quite miserable about it all if I’m honest. I couldn’t stop thinking about the possibility of further relapses making my condition worse or developing progressive MS, for which there are less effective treatments at the moment. Eventually, the worst of the symptoms began to settle or be controlled with medication and I returned to work after a couple of months.
Fast forward 7 years and life is really pretty amazing!
I have learned how to manage my symptoms and they are really well controlled with medication. Some days they really annoy me, so I just take things easier. I am back working full time doing the job I love. Most people have no idea I have MS, although sometimes I do tell people in case they think I’ve been drinking!
I needed to get back to walking, so started building up from 1/2 mile. My close friend and walking buddy started walking with me again, initially on the flat, then taking in some hills. After two years we made it to the top of a French Alp, which gave me hope that Yosemite was a possibility and the following year, my son, husband and I summited Half Dome. We took our time, doing it over 4 days carrying 40lb backpacks, wild camping and with a mountain guide. (The first time we did the whole 28 miles in a day, except I bottled out near the top!). In a way, the whole thing was more stunning, less rushed and I felt amazing achieving something that 3 years earlier I had crossed off my to do list. I admit to a very emotional cry at the top.
I had been to the Chill Factor in Manchester to get myself back onto the snow and gradually learned to ski on piste again. As I progressed, we booked some lessons with a guide to get me back to doing some off piste skiing. I was really rubbish to begin with, but I was determined to get there. Eventually, I got back to off piste skiing and I honestly feel amazing when I am in the mountains. This year I went heliskiing in Canada with my son and husband so I have ticked that off my list too.
What I have learned from striving to do these things is that my MS symptoms are loads better if I do exercise or movement of any kind. Exercise is well known to help with MS and I definitely find that. I also think that once I got over my initial negativity and decided that anything is possible, I discovered that it really is. Getting MS taught me to slow down my life a little and to acknowledge I was doing too much. It has also taught me that you really do have to make the most of life as you never know what lies ahead. I no longer dread the thought of another relapse, instead I focus on planning to do the things I love with the people I love.