Alexis Swete looks back on her journey from diagnosis 26 years ago
Looking back, my first symptom was probably optic neuritis, but the one that sticks most in my mind is the seizing up with painful muscle cramps down my right-hand side.
I was 16 when I had optic neuritis and 17, 19 and 21 when I experienced the muscle seizures. I was sent for ECG scans but by the time the appointment came, I no longer had the symptoms.
I then went numb in my fingers, and this spread up my arm. After a visit to the GP, I was diagnosed a trapped nerve, so I went for a second opinion privately.
There I had an MRI scan and although I was 23, my parents were told of my diagnosis first, and they then told me.
Shock and confusion
I was initially in shock and actually confused multiple sclerosis (MS) with Parkinson’s disease. My whole body had gone numb by this stage. I think I pushed the diagnosis to the back of my mind. There was little information back then. The neurologist who diagnosed me said there were no treatments, advised against joining the MS Society, and said it was a progressive and incurable condition and I should get lots of rest!
After what was probably a few months my sensation came back and I no longer felt like the Michelin man. Initially, I would have relapses about twice a year, but would always go into remission fairly unscathed. It wasn’t until about seven years into my diagnosis that I had a bad relapse and did not fully recover my mobility. I started Rebif which I took for the following 10 years.
Diet and therapies
I have changed my diet to a gluten-free one which works for me. I have tried excluding many foods and still do try and eliminate, as much as possible, diary and legumes. I have recently cut out eggs as I discovered that my vertigo symptom disappeared when I stopped consuming them. Food definitely affects my symptoms.
I also try and stretch as much as possible (but not often enough!) and this really does help.
I have tried pretty much every complementary therapy there is but I have found that massage and acupuncture work for me. Gentle yoga also works. I know that everyone is different and I do think that MS symptoms need to be managed differently person to person.
I also have had some cognitive behavioural therapy (CBT) over the years which helped. Having someone to talk to who is not judgmental, and who isn’t family, I found to be very helpful.
I have been lucky that I had a wonderful career as a primary school teacher. I stopped working five years ago and now tutor online. Life with MS means figuring out ways that one can do things.
Life now is so different from when I was younger and very physically active. I listen to my body and do allow more time to rest. I have become more open and understanding of others.
As an enthusiastic skier, and before I was no longer able to ski, I tried disabled skiing. I found it just wasn’t the same and I didn’t take it up, but the experience helped me to discover other things.
I got myself a mobility scooter and like to travel a lot (the added bonus of not having to wait in passport control!). I have taken up painting and have even held three exhibitions at which I’ve sold my work.
One of my best discoveries was sailing with Oceans of Hope two and a half years ago. They are a charity where only people who have MS can be members of the crew. It was on one of these trips in October 2019 that I met an incredible man, a member of the crew, and we are now boyfriend and girlfriend.
I also adopted a dog who keeps me company and gets me out of the house to walk her.
Don’t hold on to what you used to be able to do, but appreciate what you can do now. Don’t focus on the future, as no one can predict what will happen. Keep your body healthy by thinking about what you put into it. Do join an MS group, as speaking to others with the same condition, who understand what you are going through without explanation, is invaluable
I’ve been diagnosed for nearly 26 years. I have learnt so much from having this condition. I am in a good place at the moment but you never know what is around the corner so grab life when you can!