Learning to live with multiple sclerosis

This week is Multiple Sclerosis Awareness week. In honor of the many people living with the disease, we’re running one writer’s account of coping with MS.

I first had the words “multiple sclerosis” directed at me two years ago. I was in hospital for a problem with my legs. I couldn’t feel them, could still walk, but my sensation was almost completely gone. After a few tests, such as spraying ice at my legs to figure out where I had sensation and where I didn’t, I was admitted to the hospital and an MRI was ordered. The next day, during rounds, two doctors sat me down and said they thought I had multiple sclerosis. I was completely shocked yet, at the same time, it finally explained so many problems I’d had in the years preceding that I hadn’t been able to explain: my immense tiredness, the tingling in my right arm, the way my feet went numb during a long retail shift standing up for 8 hours. Needless to say, whether you know there’s something wrong with you or not, finding out you have any illness is a massive shock. It’s a life-changer.

This was October 2013 and back then I had no idea what having MS would mean for me. It wasn’t until five months after this that I got a formal diagnosis and met my consultant (who had the hottest accent, but let’s not). During these months I survived a lumbar puncture (hollow needle in your spine, like your worst period times one hundred) and optic neuritis (like a blunt instrument has been lodged in your forehead, accompanied by a total loss of vision in one eye). Getting a diagnosis was a relief and meant the most important thing of all: I could start treatment.

Treatment is, in itself, a huge undertaking. I’m on a monthly infusion; I go into hospital for half a day and sit on a drip. A DMD (disease modifying drug – chronic illness lingo, yo!) which consists of synthetic antibodies which attach to my rubbish antibodies and stop my body from attacking itself. I’ve been on it for a year and a half and it’s been every bit as life-changing as that initial diagnosis. I won’t be on it forever, for various reasons, but one of the major aspects of learning to live with MS is knowing that research is a game-changer. There are new medications all the time, and scientists are searching for a cure. I wouldn’t call myself a positive person, exactly, but I love knowing that there might be drugs and therapies which work even better in the future.

Learning to live with MS, or any chronic illness I would guess, is one of the most difficult things a person can do. And if I’d made it sound smooth sailing up until now, it most certainly was not. In fact, since officially finding out those 18 months ago, everything has changed. I’ve moved 400 miles across the country to be nearer to my family and friends, my relationship status has changed, I’ve blocked about a billion people on Facebook, I’ve blogged a hundred percent more, and I’m apologizing less for who I am and the decisions I make.

One of the most crucial aspects of learning to live with MS is asking for help. I saw a counsellor for a few months, joined a group to learn more about anxiety and how to cope with it, and I made friends with people on the same treatment as me. The making friends thing can be difficult. Everyone’s dealing with their situation differently and it can be exhausting talking about symptoms for hours at a time or relaying diagnosis stories again and again. I personally don’t find those things very helpful, though you might. The people who I’ve bestowed the honor of being my Facebook friend each have unique ways of coping with their illness. They’re not necessarily super positive but they’ve done their best not to give up on life and manage to laugh about some of the symptoms which are just ridic (Bladders problems? I mean, puh-lease, I’m only 30!).

Sometimes my body makes it difficult to enjoy much or look forward to the future. But the longer I live with MS, the more comfortable I get with it; it’s like an old dress I haven’t worn since 2009 but can’t bear to throw away because it’s so darn cute, even if it does have like twenty holes in it. It’s not always fun, but it’s a part of me. It doesn’t define me, in the same way my unhealthy obsession with Tom Cruise doesn’t either. But embracing it is better than denying it, and researching every aspect of the disease can really help (although I don’t recommend Googling anything as bed time reading). MS is undoubtedly life-changing, but it doesn’t have to be the worst thing to ever happen to you.

[Image via iStock]

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