I don’t want …

I lay on the bathroom floor shaking and crying in pain. How was I back here again? Was this ever going to end? I just want things to be back to how they used to be.This can’t be my life. Can it?

I’d had what appeared to be a rather horrible IPIR (Immediate Post Injection Reaction) to my new three-times-a-week miracle drug. Chest pain? Check. Palpitations? Check. Flushing of the face and neck? Check. Breathlessness? Check. It was a textbook IPIR, but what they don’t tell you is that it actually feels like you’re having a heart attack. And no one warned me about the horrendous knife-sharp abdomen and back pain that lasted for the next hour and left me begging to be taken to A&E. I was prepared for the heart attack sensation – I was not prepared for this pain. So, inevitably, fear set in, and when you throw that into the mix it doesn’t make a great cocktail. Luckily Niall was in the middle of his first aid training programme and kept things under control – he’s since passed his exam with flying colours, thanks in part to all this practice I’m offering him.

I can’t even put into words how I feel about MS right now. I’d focused so much on the half marathon and used it as a distraction. But now it’s over I’m left facing this illness again – maybe it’s time I faced it. In my head I’d so wanted to complete a marathon by spring, but the last couple of weeks has made me realise I can’t keep pushing my body at the rate I had been going at. I can’t always distract myself from it all. I have MS and I’m allowed to take some time to think that’s unfair.

I don’t know how I come to terms with this illness. Do you ever?

Best way I can describe it is to think of the worst flu you’ve ever had. You hate feeling ill and can’t wait to get back to your usual healthy self. But MS is like a flu that never ends. I won’t get better – this is as good as it gets. And every time I forget about it and start to feel somewhat ‘normal’ again, it jumps back in screaming for more and more attention.

I don’t want to wake up some mornings feeling like I haven’t slept in weeks despite a full 8hrs of rest.

When I go shopping with my friends, I don’t want to end up so tired I wonder how I’ll even make it as far as the car, never mind drive it.

I don’t want to drive home from work worrying I’ll fall asleep at the traffic lights.

I don’t want to paint a smile on my face and pretend I feel great when really it’s like my body has been filled with lead and each step is like walking through water.

I don’t want to have to spend the day in bed and on the sofa just so I’ll have enough energy to go out on a Saturday night.
…. and still end up wanting to fall asleep by midnight.

I don’t want to have to keep making excuses for why I can’t do certain things or go out on weeknights because I’m too embarrassed to just say it’s because I have MS.

I don’t want to inject myself every single day of the week.
I don’t want to look at those marks all over my skin and be reminded.

As we plan our wedding, I don’t want my biggest worry to be: will I relapse?

I don’t want to look in the mirror some days and no longer recognise the person staring back at me.

I don’t want MS.