I don’t want to be defined as the girl with multiple sclerosis (MS). It’s part of my life, but I’m also the girl with two kids, who’s a graphic designer and lives up the hill in Montenotte.
I was diagnosed seven years ago, when I was 33. The form of MS I have is relapsing remitting, which are attacks of symptoms that fade away, partially or completely.
Every time I relapse, there’s more nerve damage from which I will never recover. It’s unpredictable. The doctors can’t tell me what way the disease is going to go. I haven’t had a relapse for about five and a half years.
When I was 19 and at college, I had tingling on the back of my neck and left arm. I was checked for MS but nothing showed up.
Years later, before I was diagnosed, I had vague symptoms and was happily ignoring them. I was in complete denial because I knew what the symptoms probably indicated. I had tingling and balance issues. I would collide with the kitchen door. My left leg was gradually getting lazier and lazier.
I was pretty certain it was MS although I was happy to take on my GP’s assurances that it might be circulation problems. But I knew deep down. I had researched it.
It took a friend who I hadn’t seen for a while to sit me down and say, “What the hell is going on with you?” I obviously looked frazzled and was a bit shaky, unable to walk very well. It was probably clearer to my friend than it was to me. That’s what made me go to see a neurologist. Within a month or so, I was diagnosed.
Even though I knew I had it, it was still a shock to be told. But, in a way, it was a relief too. I had an anxiety hanging over me and a whole mixture of emotions.
Drug treatment
The first drug I was put on didn’t work at all. I was tingling and that is really considered a relapse. I was put on Tysabri for four or five years. It worked a treat. At the time, it was considered a wonder drug. I didn’t have any relapse.
But there was a general deterioration in my muscles. That was probably also down to inactivity.
When I developed a virus, there were quite negative side effects from the drug, which made it quite dangerous. So, unfortunately, I had to come off it. For the past year and a half, I’ve been on Gilenya and there are no particular side effects.
I didn’t go through depression when I was diagnosed. At the time, my marriage was breaking up and I had a six-month-old baby.
I pushed MS to the back of my mind and really threw myself into life with my two kids. I was lucky to inherit a house. I kept myself busy [moving house with] my children and dealing with all that. I dealt with the MS very gradually.
Friends say I am strong. But I think I just stick my head in the sand and carry on regardless. I didn’t see that I had any choice but to keep going.
I have a very good relationship with my ex-husband and his family, so I have support there. But there’s only so much support you can get when you’re up at 3am with a vomiting baby.
The children have seen me getting worse over the years but I try to protect them from it, to an extent.
I walk with a stick and I have started using a wheelchair when on holidays or at an event. It stops me getting too stressed out, trying to engineer my movements. I don’t want to have to walk too far or stand for too long.
At the same time, I don’t want the MS to beat me too much. I think the longer I stay moving around in any form, the better for me.
I have an exercise bike that I use despite my balance issues. I have it between my wardrobe and my bed, in case anything happens. I have to admit, I don’t use it enough.
Attacked by a virus
I don’t know why I got MS. I have heard that maybe it was because my body was attacked by a virus. I did have one serious dose of flu before I was diagnosed with MS. I was in bed for a week. After that, I remember one day having to walk from my car to the chemist. I thought I was walking in a straight line but I was walking to the left.
No one in my family has MS. I can’t think of any environmental reasons for having it. I don’t live under pylons or anything.
Around 2008, when I was much more mobile than I am now, I converted the garage into a home office. I felt it would make sense long term as I’m self-employed. I love working from home. I try to go out into the garden and I can walk about 40ft with relative ease.
I try to see the upside of my condition. I set up a blog because I was interested in writing. I didn’t really mean the blog to be about MS but when I write humorous posts about it, I get the best reaction.
I’m a positive, optimistic person by nature. I hope to live to a ripe old age.