Losing all the things…2

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Where was I? Oh yes. Waiting for steroids to kick in. Relapse #2. Well, they did kick in. 

To go back a bit, at the time of this all happening I’d been off medication for about two years – Copaxone (the Rebif was knocking out my white blood cells) – something to do with trying for a baby and, to be honest, not injecting myself every day was A MASSIVE RELIEF. I did not enjoy that at all. 

I’d convinced myself that my MS was benign. Idiot. 

But. Relapse #2 was manageable, I was back at work in about a month and seemingly fully recovered. 

So I did a pregnancy test and it was positive – that’s happened before, but this time it appeared to be sticking. And it’s hard not to start finding stuff out – like which fruit it’s the size of at five weeks, and stuff like that. I had horrible symptoms too – complete exhaustion, constant nausea, ridiculously heightened emotions. But there was a bit of blood and my GP (who’s ace) sent me for an early scan (8 weeks, I think) and it’s ludicrous because you’ve seen that exact scene so many times on TV and in films but, alas, ’twas not to be. And the nurse, let me tell you, did not have the most sensitive of nursing personas. 

And I think that’s what caused relapse #3. 

That’s all been a bit heavy, hasn’t it?

Let’s all calm down with a picture of a kitten.  

 

Losing all the things…1

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The next post or two’s going to be about my ‘devastating relapse’ (the words of my MS nurse).  The one that kinda changed everything for me. Or at least forced me to ‘accept’ that my MS was real and wouldn’t be going away. 

Before I get on to that, in the intervening WELL years, D and I got married: 

 
And we moved here: 

  

Well, not exactly there, on the bridge. That would be inconvenient. No, to a house! Don’t take everything so literally man. The picture is but a representation of the beautiful town that is Shrewsbury. 

Here’s another, it was taken from THE SKY so please don’t be alarmed. You’re safe, I promise. 

 

Relapse #2

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A sharp pain, like being stabbed in the head with an ice pick. And each time it comes it’s a surprise. I google ‘sharp stabbing pains in head’. Could be a migraine? MS doesn’t even cross my mind. I go to the GP. Could be a viral infection? Come back on Monday if it’s still happening. Take painkillers till then. 

Some more googling. MS comes up in one result. I start to mildly panic. Very mildly. The pain continues. 

D goes away for the weekend, I was supposed to go as well – to visit C – but I cancel. 

Sunday. I can’t walk properly. This is familiar. L calls, I cry. I ring D. I try to be brave but I’m distraught. He’s coming home. 

I know what it is now: a relapse. 

Monday. Sick note signed. I know what’s happening. My body spells it out in big bold sans serif type for me. 

Wednesday. Off to see the MS nurse with my dad. He supports me. Walking is hard now. The nurse prescribes me a course of steroids, pills, not a few days of IV like last time. I am so eager for those tiny red tablets. 

Back home dad buys me a bacon sandwich from our local deli as I settle on the sofa where I wait for the steroids to kick in. 

Things I forgot…

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I’m a soon to be ex-teacher. I think. I wasn’t pushed, I jumped (stumbled, tripped, fell?). Chronic illness/extreme fatigue and full-time teaching do not mix. Insert cocktail metaphor here; I can’t work one out. So part of this blog will be about my imminent unemployment and coming destitution. Jokes! I’ll be figuring summat out. Or supply teaching for ever more. 

Being both gluten and dairy free is a thing too, so maybe they’ll be food stuff as well. 

And pictures of the cat.  

 

How my MS slowly revealed itself.

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In about 2005 my legs started to feel, well, odd. My right leg, I think, went totally numb –  I could still walk but it was weird enough to worry me. By the time my neuro appointment came around, I felt pretty silly about going – I was fine now.

Then it happened again.

And again.

And by now I was referring to “my MS” and having D (my husband now, my boyfriend then) and my friends rolling their eyes and raising their eyebrows – I was hugely health-anxious already.

I remember being in a bar one time (Edin’s in Nottingham – check it out!) and I got a filthy look off a woman after bumping in to her table. Talking to a friend afterwards I said something like, “man, It’s not my fault when I’m having an MS attack!” And she said something like, “It doesn’t work like that, Ema” BUT IT TOTALLY DOES. So, who’s laughing now? Well, neither of us, but still.

Then, at work one day everything felt like it was going in slow motion, and I remember saying to a fellow-teacher, “it feels like everything’s in slow motion.” And I didn’t go in the next day. I was supposed to be going to a gig, I can’t remember who the band was now*, but I was seeing double so I went to eye-emergency-hospital instead and got signed off work for a couple of weeks.

A person I used to work with sent me an email that said something along the lines of “hope you’re okay and not Googling your symptoms!”

I wasn’t but I did then.

And all the search results said double vision and optic neuritis and HARBINGER OF MULTIPLE SCLEROSIS.

When D got home from work I was mid breakdown and my right leg didn’t work anymore.

And I was supposed to be going to Berlin with L and A but I couldn’t.

And then it was all bad with much crying and throwing up and being unable to eat or walk properly or see properly and I read it could affect your hands as well then one of them stopped working and I couldn’t write either.

So eventually after being nursed by my parents back at home, after an MRI, after being looked after amazingly by C who is awesome, I was diagnosed and the first thing I said is “told you so” to D who was with me.

Than there were steroids and Rebif and being 100% okay for FIVE YEARS.

Oh, and I was nearly turned away from a bar in Sheffield because the guy on the door thought I was drunk and Bjork, who L and me were in Sheffield to see, was ill so she didn’t show up. It’s okay, we’re going to see her at MIF soon so, you know – that worked out.

*The Go! Team. I fact checked my own life.