Tuesday, 16 November 2010

Speaking from the heart

Once in a while, I’ll indulge myself. I’m not a great one for wallowing, and I only occasionally feel sorry for myself. However I do think it’s important to be allowed the odd piece of self indulgence so here goes.

For those of you who don’t know already and didn’t read my previous blog, I suffer from multiple sclerosis. I don’t say “suffer from” lightly even though I have few, if any, outward symptoms. My particular flavour of MS is what’s described as “benign” which means I’ll rarely suffer any issues directly relating to MS. It is however, the most bizarre of illnesses. It’s dangerous to try and shoehorn any mundane little aches and pains into “Oh well, it’s because I’ve got MS” – that way lies madness. I can’t begin to tell you how many times since my diagnosis almost 12 months ago I’ve been tempted to do that.

I can only tell you about the things I know, the things I’ve experienced and the things I experience now. I'll do it to ease my mind and maybe yours too. I'll do it for a reader I might never know. In posts to come, I'll talk to you about treatment I may never need and symptoms I may never have. But do you know the biggest symptom I suffer from now?


We're all fearful at times, we feel afraid for our children, our partners, ourselves. I know I'm not the only one who's scared. But I can tell you I'm petrified of the time. I worry I won't have chance to fit everything in, to do all the things I want to do, see all the places I want to see. I'm afraid there isn't enough time left for me to love my child and my partner, there aren't enough days to show them how much I care.

I can feel the tick tock of an unremitting clock, and the relentless patter of grain upon grain of sand in an hourglass.

I won't die from MS, I'll die with it, but I don't know how many good years I'll have. There's no reason why I won't have as many as you, but MS has whispered gently in my ear, asking me how I feel today. Is it different to yesterday? Is that little niggle simply that?

Last week the tick tock was just a little bit louder, a little less easy to ignore. Now though it's quiet again, peaceful.

Until next time.


  1. I can't imagine what that's like. You write about it with skill, though.

  2. I hope it remains benign for many a long year yet. My thought is always one of advancing science and each year you make without it being an outward struggle, then its a year further that science, research and treatment have advanced. Thinking of you x

  3. I can't imagine what i must be like, but you should be proud of yourself for living with it and for the times when the ticking is not as loud or overpowering. We should all live in the moment more as we simply do not know what is round the corner and worrying will not change anything, but it is hard at the best of times....A very poignant post and glad things seem to be getting better. x

  4. thank you for raising this issue. I have two friends with MS one has benign and the other a more aggressive form and have seen the impact it has had on their lives. I hope it remains peaceful for you. Once again, thank you for sharing.

  5. That was a really powerful post and well written, too. I have a good
    Friend with MS and it's starting to cause her a few minor issues, but
    She does take medication and she certainly lives life to the full. I admire
    Her tremendously. I also admire you for being so open about your
    Condition. Raising awareness about conditions such as this can only
    Be a positive step in the right direction.
    CJ xx

  6. Hello Tina
    I am glad you shared this. I always think uncertainty is one of the most horrible things to deal with. And fear. I am sending you a box for them both, if they start ticking too loudly please shove them in the box long enough to have a cup of tea and a good blog. Hope this comes across the right way online - heartfelt and not irreverent.
    Penny x

  7. I can really relate to how you must be feeling since I was diagnosed with MS a couple of months ago. Fear is the biggest issue for me. I am deciding whether to start medications, which the neuro doc recommends. Thanks for writing about MS.

  8. Isn't it amazing that when we start talking about something so many other people come to share their stories too? That's the power you now hold. I hope it helps you in some way - and other sufferers you come into contact with. xx
    (Completely love your new look btw.)

  9. Hello everyone, you'll never know how touched I am by your comments, love and support. I hope to post on this same subject again, and if even a little bit of it helps someone, then my work will be done.

    Thank you all so, so much