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.

8 thoughts on “I don’t want …

  1. Some days are more difficult than others. There are not many positives attached to MS but when you find one hang onto it. Be strong in spite of MS.

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  2. It sounds like bullshit. But it really does get better. Or rather, you learn to deal with it better, you get an acceptance for it and anything is a bonus. If you ever need anyone to talk to x

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    1. Thanks missus – felt I had been coping quite well but the last couple of weeks seem to have been extra tough. I guess there’s just a minefield of emotions and I need to stop thinking about the what ifs so much. Got out for a nice walk at Powerscourt today and that helped. Hope you’re keeping well and things are going well for you in Canada xx

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      1. It does that. Goes in roundabouts. You could even be having an amazing week when the depression and realisation of how unfair everything hits. Walking is good, staying as busy as your mental and physical state will allow etc. Meh. I am fine. Having a kind of bad week but sure! Thats life x

        Liked by 1 person

      2. Thanks Shinners 🙂 stayed nice and busy today – planted 50 daffodils :D!! Was reading your blog there – likewise if you ever want to chat or just have a rant about it all drop me a PM. Take care xx

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  3. Rosie – Brenda here. I sat in front of my laptop today with tears rolling down my face. I have had a brain aneurysm 7 weeks ago and was feeling very sorry for myself. I came across your amazing blog and learned about what you are going through. I soon dried up my tears. You are an amazing person with the most beautiful smile I have ever ever seen. A big hug Rosie and the very best of luck in the future. He is a very lucky man but I am sure that he knows that. Love Brenda

    Liked by 1 person

    1. Ahh Brenda thanks so so much – so kind of you to say so. It’s really lovely to hear from you 🙂 Had no idea about your brain aneurysm – I’m sure there’s a long road ahead but I hope you’re feeling better and getting plenty of support and TLC. Will be thinking of you. Take care and look after yourself xx

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