Losing all the things…6


Afternoon! How you doing today? Wait, wait, stop! A simple ‘fine’ will suffice. Jeez. This is my blog, okay? Okay. Are we ready to listen now? Good. For this blog post picture us sitting in the sunshine, perhaps gathered under the welcoming shade of hefty branch. 

Remember last time I said that MS is a kleptomaniac? As well as that, no two people with the disease will be affected in the same way. There’s a whole panoply of symptoms. Relapse #4 was kind enough to bless me with all of them. At once. The cheeky monkey. 

Why not list them?

  • Double vision. Your eyes don’t track at the same time. So if you check this out in a mirror, while one eye moves as is normal, one stays staring back like a weird jokeshop acquisition. Proper freaked me out. 
  • Constant whooshing sound, like the noise of heavy traffic. I couldn’t hear anything properly. When listening to music, the only sounds I could make out were percussive (not sure that I’ve used that word correctly). 
  • Difficulty swallowing. So eating’s no fun. 
  • My voice altered. It went all high-pitched and like a child’s. And it was tricky to speak so I often gave up and said nothing. 
  • My hands and arms wouldn’t work. I lost any dexterity so dressing became impossible to do by myself. I remember spending ages trying to pick something up from a side table and then place it back down, over and over, to try and ‘train’ my body to do as it should. 
  • Walking. As I said before, I had a wheelchair. For much longer than two weeks. My brother, A, or my Dad – but mostly my brother (I should say, my brother’s very strong, like Action Man) – carried me upstairs every night and back down in the morning, and from room to room, and sometimes picked me up from the floor. D, by the way, is not the strongest – he’s basically a skellington. And I couldn’t even move my legs. I’d try for ages but, weirdly, if my Mum said, quite sternly, “Ema – lift up your leg”, I could. Weird, eh?
  • Balance. I couldn’t sit up without support. One day I was left sitting on the bed and I fell off it, just like that. 
  • Sensation. Hot felt cold and cold felt hot. 

So just those things, basically. 

My Head Teacher paid me a visit – statuary obligation – and was shocked by the state I was in. I let my Mum talk on my behalf; I was so angry – why couldn’t D just explain! Horrible. When he came by the way, I was resident on the sofa at my parents’, in my pjs, under many blankets, with all of the list above going on. 

Here comes a point. A point that D agrees is so important. Under all of those symptoms, with all of the things (luckily temporarily) lost, I was still me. My friend L has reminded me that after my first relapse I said to her that a thing it’d taught me was how much I like being me. Ema. And I hate MS for taking that away from me. Probably, like anyone actually, what I value most is the ability to communicate. To say “this is who I am and this is what I think” – and not being able to speak, read, write – even listen – left me distraught. I was told I shouldn’t be crying all of the time, it wasn’t helping me and wasn’t normal, and my response was always that I thought it was perfectly rational in light of my circumstances. What the fuck else should I do? I’m sure there are people who would cope better but I’m not one of them. And I don’t feel the need to apologise for that.  

There’s more but the cat’s wondering why I haven’t fed him yet and I’m supposed to be in charge of dinner tonight. 

So, let’s stand up, brush those stray bits of grass off our clothes and go indoors, get a glass of wine.   


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