19. Forecast …. rain/sun/cloud/snow

The other day I read this on twitter:

‘If you want to accept your MS, visit a lung cancer patient. 97% fatal 6 months – 5 years. They’d trade places in a minute.’

This had been written by someone with MS but luckily it wasn’t directed at me. I say luckily because if it had I would have had to reply. With a number of expletives. Because it made me mad. And upset.

Ok, so MS isn’t going to kill me. But it is, in its own way, a life sentence.

The worst part by far is the not knowing, the uncertainty, the fact that even the doctors can’t tell me how it is going to affect my life. I may be fine for the next 10 years. But then I may have a series of relapses and find my mobility severely restricted. I may wake up tomorrow with new symptoms. Problems with vision, speech, balance, bladder, tremors, pain. Or I may not. Because that is the problem with MS. There is simply no way of knowing what is going to happen. And that uncertainty is, in some ways, worse than a prognosis that is poor, but definite.

The best way I can describe it is it’s like having a grey cloud hanging over my head – at the moment I am doing ok, things are pretty sunny, carrying on pretty much as normal, things are just a bit overcast now and then – but I never know when it will start to drizzle or worst still develop into a full blown storm complete with thunder and hail stones. A bit like the weather forecast, MS cannot be trusted.

Having MS really has fu*ked with my head. It has made me question everything.

My career, my relationships, my future.

I always thought I had a forever to do things, to go places, to have a family. Being told that forever may not be quite as long as you thought or may be limited in some way is an extremely difficult thing to deal with.

Do I carry on along the road I am on or do I strive for something else, with the possibility that I never find it? Do I bring things forward, try and fit them in just in case? Or do I carry on as normal, not giving into MS, and run the risk that I may have to take an alternative route in the future according to my limitations?

I cannot imagine what it must be like to be told that there is a time limit on life and my heart goes out to those with incurable diseases such as those mentioned in that ‘tweet’ I quoted.

But equally I too am living with an incurable condition and whilst it won’t kill me the feelings of grief, anger, pity and sadness must surely be the same.

‘Not knowing what the future will bring means you have to flourish in the now’

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3 thoughts on “19. Forecast …. rain/sun/cloud/snow

  1. Work like you don’t need the money,
    Love like you’ve never been hurt and dance like no-one is watching

    No one can understand how those with ms feels. I suppose the same as no one understands how terminal patients feel.
    Life seems to have a way of pulling the rug from under you and then punching you in the face sometimes.
    What I’m trying to say is live for today and do what makes you happy today – and sack all those who snarl! X x x

  2. Nic – you sound so low. Wish I had a magic wand & could make it all go away. Sadly not. As the great (imo) Bruce Springsteen once wrote “things that’ll knock you down that you didn’t see coming”. Claire P is spot on with her advice. You will cope with this, but it’s tough. xx

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