MS Is What You Make It

FuzzyA while back, I never thought I’d write this post.

MS was an ugly intruder, returning again and again, chipping away at everything I once held as true.

It took my health, of course. But it took more than that. It spirited away my social life (who wants a friend who trips over when sober? And cries down the phone?). It stole my son’s transition into teenagerhood – it was marred by worry and fear. It stole my career.

In essence, it took my future. And it tried to take the very core of me, my spirit.

Well, MS, be damned. You can get away with the trembling, the nerve pain, the stumbling. But I will still barricade the gates so you won’t destroy me entirely.

Before anyone takes offence at the title to this post, MS took my father. Way back, before treatment, drugs, MRI’s, 1978. I was 4.

I live in a different era and I believe that MS is what YOU make of it.

I’ve been to hell and back and have still not fully recovered. I live in fear of the treatment not working and I’ve already had a relapse, plus complications (I admit, the over-active thyroid has short-term delights, such as my miraculous weight loss, but it won’t last and the Wotsits are already calling…). My hands don’t work properly and the foot drop is verging on the comical, which my bruises bear witness to. I am covered in them.

MS is horrendous. It sneaks up and unleashes a bewildering array of symptoms on us. But if you can come to terms with the fact that Life Will Never Be The Same, you’re already halfway there (honestly).

Your families may ignore you and you will probably lose friends. You may also lose  your job, as I did (don’t forget, I won the legal case). But. For all that, you will transition into a whole new way of living. You will adapt and you will overcome, to coin a tired phrase. Some of you are happy to say that you have MS, MS doesn’t have you. Well, it does. But! The way you receive and react to that news is the key to living a brighter future. .

We cannot deny it’s a nasty existence. It is right here, right now and it always will be. So we adjust to new ways of living, despite this foul illness.

We can do this, right?

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14 thoughts on “MS Is What You Make It

  1. Emma says:

    Honest and inspiring! Thank you for the post 🙂

  2. tony cardis says:

    Yes we can x

  3. Randy says:

    Heads Up!Attitude is everything when dealing with MS, you can wallow in sorrow or refuse to let it control how you feel about living with it! YES we can do it!
    Great post, keep laughing in the face of adversity.

    • stumbling in flats says:

      Thank you! Yup, it’s taken a while, but I’m now at the stage where I can say, ya boo sucks to MS. It won’t be stopping me doing anything.

  4. John says:

    I agree entirely with what you say. You have to do the best you can in the circumstances as they arise. It’s just that when you have primary progressive MS “the best you can do” just gets less and less.

    What’s that old story – “One day as I stood alone in the wilderness a voice came to me out of the darkness and said “Cheer up things could be worse” So I cheered up and sure enough things got worse”.

    Well it makes me laugh!!

    • stumbling in flats says:

      I love that!!! And yup, totally agree with primary progressive. I know what you mean. Thing is, I can do way less than say, three years ago, but I’ve also done stuff I would never ever have done, had it not been for MS. Writing and my Masters for example. I’d still be tootling along thinking, ‘one day’. MS was a wake up call and I dared to think, I can do this.

  5. Rosanna says:

    Thank you for your honesty and frankness. So tired of reading posts from people that ms does not have them. Yes it does! Don’t get me wrong I like positive attitudes but honesty is key and realizing your life will never be the same… The new path is yours to create and love! I have been riding the rollercoaster ride of ms for almost 20 years and still trying to learn to love this ride.

    • stumbling in flats says:

      What a brilliant comment! I’m with you, MS does have us and always will in some shape and form, it’s just what you make of it. Clocks don’t run backwards, sadly.
      I have to admit, despite the health challenges, life is a whole lot better and more satisfying now. When the worst has already happened, the only way is up. I took a long hard look at myself and asked myself what I wanted to do with the rest of my life. Yes, dark days are still with me, but isn’t that the same for everyone?

  6. MS is def what YOU make it. You really have 2 options when dealing with it, give up and wallow in sorrow, or get on with things really. You do adjust, most of the time with out realizing it. Yes it is very unpredictable, you don’t know what is going to happen day to day, but there really is no point worrying about it. For me, its a case of what will be, will be and what ever happens you do deal with.

    i hate that phrase, I have MS, but its doesn’t have me. it doesn’t make any sense, and even if it did, I find most of the people that say it or in the doom and gloom crowd who let it take over their life.

    • stumbling in flats says:

      I’m with you – that phrase really annoys me. It’s some kind of denial rather than acceptance and concentrating on making the most of your life??
      I’m also not that keen on the mssucks hashtag on twitter. It does, we all know it, but this just reinforces it over and over again. And I too find that the people who quote these two phrases are definitely the doom and gloomers 🙁

  7. Kiran says:

    I’m not saying anything new; I agree with all of the above and want to say thank you. It is possible to face reality, accept what we can have control over, and just importantly that which presents increasingly complex challenges. For me there is a really healing aspect to discovering the varying ways to appreciate and live life with intent. My current life isn’t one I had accounted for in imaginings of my life after 50, but then I didn’t have the maturity to value many of the experiences that accompany something as physical and emotional as MS or recognise the gifts that come with walking more slowly through my present.
    I, like so many others find your musings put many thoughts into words and in a wonderfully articulate and funny way – yes to an essential dose of humour, reality and reflective positivity. Thanks again

    • stumbling in flats says:

      Thank you!! A lovely, lovely compliment. Means a lot!
      And the points you make are so thoughtful. What you say about gifts really resonates. I remember, shortly after diagnosis, I saw everything through new eyes. A bit like being reborn in some strange way. Everything seemed real and I understood then that like most of us, I was going through life without really appreciating everything around me.

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