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Day in a life with MS

When dizzy spells and sudden temporary blindness lead to an MS diagnosis it changed Rebecca Saady’s life forever. Here she explains what MS means for daily life…

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I found out I had MS on 6th May 2012…

Well, that’s when I was diagnosed. I lost vision in my left eye and vision issues are one for the first signs of MS. I had previously had loss of feeling from the waist down and the GP thought I had trapped a nerve but I just didn’t feel right. I went to an osteopath, and then went to a consultant for a second opinion. My neurologist scanned me and I will never forget going back to him for the results. This man was so nervous, he was sweating and he said “we found 10 legions on your brain and two on your spine, which is why you can’t feel your legs”. They said I had a 50% chance of getting MS because they are told you have to have two attacks for them to confirm the diagnosis, but it was pretty obvious.

Before the attack I…

Had been to a reflexologist and when she touched a particular part of my foot I screamed, and she said that was the bit connected with my left eye (where my vision problems started). My MS is Relapsing/Emitting - so you have periods of relapse and then recover a little. But it’s not like having a cold, it takes a long time to recover - relapses for me usually last a good five or six months and I have had three in four months recently.

The impact on my daily life is…

At the moment I am in the middle of a relapse and because the weather is hot it throws a massive spanner in the works. I have to wake up and take it one day at a time, but doing basic daily things is an achievement. My consultant thinks its hilarious that I still fake tan, but at the worst part of a relapse when I can’t even do that I feel like the living dead. I told my consultant ‘I can’t have pale legs!’ - he thought that was very funny.

The biggest obstacles are…

Not being able to do what I used to and coming to terms with the grief for your old life. The relapse I had in 2013 changed my life - it affected balance and coordination. You know that smoothness of being able to walk? I can’t do that, I have to think about how to walk at the moment. Often I find I can’t watch other people; it’s not their fault, but it’s upsetting. The whole spontaneity thing I don’t have the luxury of, if I do this I can’t do that - everything has to be planned. I was definitely in denial for the first 18 months after diagnosis and every time you relapse it’s another grief process. I can’t look at old pictures of myself.

The most positive thing I have learned is…

Who’s really there for you and who cares for you. A lot of people who I thought were my friends have scarpered and I don’t think it’s because they don’t like me, but because they don’t know what to say. At the moment I walk with a crutch and I used to leave it by the door rather than take it outside - it’s just how my grandma used to be - she would say ‘the stick doesn’t go with my outfit’ - maybe that’s where I got it from. Also, and it sounds really cheesy, but you have to learn who you are again and that has its own rewards.

Other people can help by…

Caring. Their support is invaluable and I have been overwhelmed by the love I have received from people. That, and know I am trying the best that I can.

The best advice I can give anyone with MS is…

Do something. The worst thing you can do is nothing, anything you can do, do it. That’s what my neurologist said to me. He asked me recently, ‘can you still walk?’ and I said ‘yes, not well, but I can’ so he told me to do it. Also, allow yourself the time to grieve. You can’t block the emotions out, they will come back and you can’t bury them, it’s like mental indigestion. Don’t be so hard on yourself as well - not that I am any good at that, but I am working on it. I am the person who judges me the most.

The thing that makes me feel on top of the world is…

Listening to music is a big thing. I am a huge Drake fan and I have a lip syncing YouTube channel - I am a big music fan and I have a lot of time on my hands at the moment. I never had the guts to do it before, but friends said I should try it and I have had awesome feedback from it.

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