Mothers’ Day, my mum, and MS

(I couldn’t pick just one photo of my mum, so I’ve used loads. Sorry about that. But it is Mothers’ Day.)

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I wanted to write about my mum today. Not just because it’s Mothers’ Day, but also because it’s MS awareness month.

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Mum was diagnosed with MS in the mid 80s. I didn’t really know much about it and, at first, it didn’t seem like a huge problem: she had some numbness and pins and needles in her hands and, I think, one leg. At first they’d thought it was a trapped nerve and it took a long time to get a diagnosis because, I think, she was in her mid-40s and, at the time, that was considered old to be developing MS.

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She had Primary Progressive MS, rather than the much more common Relapsing Remitting MS, which meant that her symptoms just kept getting worse. And she had some very strange symptoms. Because it’s a neurological condition, she’d experience things like feeling like she’d wet herself or that there was water running down her legs, she woke up one night thinking bugs were crawling all over her legs. I also remember her saying she had a feeling of her legs being wrapped in barbed wire. She started to walk with a stick and, eventually, she was using a wheelchair for any great distance.

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One of my worst memories is of her trying to get out of my sister’s car at a shopping centre and not being able to make her legs work at all. I remember her grabbing her trousers (she called them “slacks”) and trying to haul her own leg out through the door, but she couldn’t do it and she burst into tears. Eventually we got her into the wheelchair and the shop, which means it was followed by one of my happiest memories when I pointed at a sign for ‘Extra Thick Baby Wipes’ and said, “That’s not very nice, is it?!” and made her laugh. A lot. (Daft sense of humour runs in our family).

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Mum died in 1999. She didn’t actually die of MS – she was diagnosed with leukaemia in November and died the following June – but she’d had multiple sclerosis for fifteen years. She’d had MS since I was 13 so sadly I have more memories of her ill than well.

Having said that, she was my best friend and I never thought I’d be able to go on without her. By the time she died though, she’d been so ill and so disheartened and depressed by everything that it was actually easier to let her go.

Multiple sclerosis affects around 100,000 people in the UK.

Most people are diagnosed between the ages of 20-40, but it can affect younger and older people too.

Almost twice as many women have MS as men.

You can learn more about it here (including ways you can help) and, if you’d like to donate, I’ve finally got around to doing what I’ve been meaning to do for a long time and I’ve started a tribute fund in Mum’s name.

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