Never Never Land

fairy dustI have been living a dream.

The dream is simple – no more relapses. No more fear.

But as with all dreams, we wake up.

Campath. It has been a marvel.  I adore it. I embraced it in the hospital. It quite literally gave me my life back but with a proviso. My neurologist told me I could expect ten good years. Yet at 37, that seemed an eternity.

A couple of days ago I met  a wonderful woman who had double the number of infusions I had. Her story mirrored mine. Eight fabulous relapse-free years.

Now she is in a wheelchair.

I have slept badly. I jolt awake, feet twitching and burning, dark thoughts running through my mind unchecked. Believe me, I don’t fear a wheelchair. I fear the loss of control.

MS is weird. We have no idea what the future holds. Mine may have rainbows arcing over the next few years. Or it could be the opposite. Do many of us ‘wish’ we had an illness with a more predictable disease path?

So I kind of feel I am back to stage one. Two years ago, almost to the day, when I sat in my car, dreading the neurology meeting. I knew it would change my life. It did. And  it keeps on changing.

Tagged , ,

13 thoughts on “Never Never Land

  1. :/

    you said it, we have no idea what MS will do. and just because you met a person who had the same treatment does not mean you will follow the same course. and yes it would be great to able to predict how things would progress, but would you ultimately want to know since it might stop you from doing things??

    • stumbling in flats says:

      A very good point. A bit similar to those tests you can get to predict your likelihood of getting certain diseases. Sometimes I let my mind run a little bit wild.

  2. Tony Cardis says:

    I expect to end up in a wheelchair with my PPMS, I expect to go totally grey and I expect I will fart if I bend over suddenly. But none of them have happened today and unless I eat sprouts I’m not expecting them tomorrow. So enjoy today and don’t look to far ahead x

  3. hmm that reads very snarky, dont mean it to. but really, you don’t know what will happen with the campapth

  4. Tricia says:

    X X X

  5. MS so different for everyone; who knows what may happen? All we can do is hope for the best – and try to remember to enjoy *right now*. It’s all we can count on.

    How is THAT for a cliche? Hang in there, my dear! Sorry you’re not sleeping well…

  6. Hi,

    I was at MS Life 2014, very good. I saw presentation by Giovannoni & Chataway, it was excellent Here is the link to it. Yup its long so settle down. Basically keep in touch with your MS Neurologist. You are lucky in Cardiff. They do NOT want to see deterioration as much as you DON’T want to deteriorate. If you are worried go and talk to them

    • stumbling in flats says:

      Thank you for that Patrick! Glad you enjoyed MS Life. I went in 2012 and it was fabulous.
      I guess it’s one of those things that wakes you up in the wee small hours. And you’re right, we are very, very lucky in Cardiff and my neurologist is brilliant.

  7. Angela D says:

    Hey, I know how you feel….but when the panic sets in I try to focus on the thought that MS is different for everyone and it would be so sad if I looked back on my life and I’d spent it worrying about the worst case scenario, if that actually never happened…now that would be a waste and the stress will only exacerbate things. I don’t always succeed though and have dark moments too! Hope your sleeping improves…Nytol (over the counter stuff) helps me! x

    • stumbling in flats says:

      Thanks Angela! It does seem silly to tie myself up in knots about it. I mean, if I hadn’t had the treatment, I would have been in a far worse way, so I’m really fortunate and I do count my blessings!
      Had a good sleep last night, so hopefully this insomnia is now over. Fingers crossed!

Leave a Reply

Your email address will not be published. Required fields are marked *