MS + T + W + MA = Stress?

new to MST = Teenager and W = work – an impossible equation.

The MA is just the wildcard.

MS = LIFE x 1000.

I’ve been exploring the theme of MS and radical life changes recently, and a good few of you have got in touch with your own incredible stories, both personally and through the blog.

The overriding theme is, ‘ok, I’ve got MS, but I changed my life for the better, and decided to do what I always wanted to, sticks/wheelchair/nerve pain or not’.

Of course, walking with a stick or waking up to numb limbs doesn’t tend to feature heavily in our good-news scenarios but the fact that a large number of us appear to live more fulfilling lives puts it all into perspective. Yet it can take a while to get used to.

Like me. On Monday, we had our book club Christmas party. Readers, I had to take my stick.

Awkward. I had unwittingly marked myself as ‘other’, even though I knew I could grasp the tables and chairs and stagger my way round the room without it, the stick was a solace and it helped. I am proud and didn’t want to look like a toddler taking their first steps or face the inevitable whispers of, ‘has she? Too much red? She always says she dances on tables when she drinks red’.

Yet the stick also rendered me speechless and quiet. And anyone who knows me will know that’s pretty unusual.

Anyway, Monday taught me a lesson. I am still the same person, with or without a stick for balance. Perhaps I should fashion my own one from driftwood, imbuing it with magical powers, terrifying the neighbourhood children. I already have the black cat, so why not?

What I’m trying to say is, what does it look like like to have MS? For me, and people like me? The few memories of my father are distorted and shaped by familial prompting. All I remember is that in his final days, he lost his power of speech and moved from his wheelchair to his bed. And he looks odd in the few photographs I have, whereas I appear to be happily sucking my thumb on the grass in the backyard.

So, what am I? Yup, I got his eyes, his chin, his dismissive sense of humour. And for good measure, the MS.

Who are you with MS?

Are you still denying its existence or have you accepted it and understood that you are not MS. It does not have you, unless you allow it.

For those of you with more advanced forms than I, I apologise. The aim of this post is to inspire us who are still at the beginning; if we give up now, who’s going to care?

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20 thoughts on “MS + T + W + MA = Stress?

  1. tony cardis says:

    I was 55 when my visitor arrived most unexpectedly, now 2 years later I’m learning to live with it.there has been many changes some bad some unexpected but I’m here that’s the most important thing. I have adapted to wall walking and can do quite an impressive swerve, the walking stick was a big hurdle for me to overcome,so I spent some pennies and got a personalised one (it has a photo of the dog on it) but now I turn off lights with it, collect the remote control and control small children with it. And since Gandolf has made sticks trendy I’m quite happy with it.
    But I will be honest I would be much happier without MS and all its problems but it’s here it will alter how I do things but I will still do them and I’m still me xx

    • stumbling in flats says:

      Oh, me too! I hate my stick. Still hate it and what it could represent.
      I’m not used to it, especially as I normally have to only use it in the evenings.
      Of course, I would be far happier not using it, but like you said, it can be a handy help to switch stuff on 🙂

    • Jonny says:

      Evening Tony,

      I can still enjoy doing sailing thanks to the support of Belfast Lough Sailability…….I can still walk on even ….very even, non slip surfaces…but it’s nice to venture off the piste occasionally! even go down to the pontoon. Yes, I can hear the reprimand from other BLS Volunteers…….’YOU FORGOT YOUR STICK !!!’ I need their support, so much, to continue doing sailing again. My stick comes with me wherever I go……


  2. Ellen says:

    I don’t have MS, but something similar. At some point I finally had to admit I needed a stick. I’d come to stores and be looking around in a panic, wondering what I could hold on to. I was very self-conscious using it at first. It just seemed so… not right, somehow. But then while reading about fatigue, I came across a research article about people with MS. The essence was, people with debilitating fatigue can be their own worst enemies. They put off using assistive devices far longer than they should. Using a stick helps you conserve your energy. It is as much a way to manage fatigue as to keep you upright. The case made was very convincing to me. I began to use the stick every time I left the house. I’ve discovered that it really does allow me to walk just a little further and stand in line a little longer (or at all!), as well as stay a little steadier. I’ve come to think of it as something a little liberating, making going out more possible, than something limiting. Now I panic if I go out and somehow don’t have it. Everything is so much harder without it.

    So I was flabbergasted when I had an appointment with a neurologist at a major teaching hospital two months ago, and he actually made a nasty comment essentially suggesting that I didn’t need it and was perhaps, I don’t know, milking it a bit by using it? He demanded to know why I actually used it. “Um, because I’m debilitated a lot of the time, am weak and have balance issues?” He didn’t think I was that weak. (He also hadn’t seen me after I’d been out for a couple of hours and the fatigue was descending hard.) Unreal. Obviously, it’s just such a hot fashion statement for a 40-something, so I’d look for any excuse to use one? (They still have no diagnosis for me. He also suggested that since he didn’t know what I have, I need a psychiatrist. But he also admitted that the damage shown on my brain MRI was so extensive that perhaps I should also have a referral to someone who specialized in autoimmune neurological conditions. Idiot.)

    But I digress… Yes, it is really hard to come to terms with using it (and, in the beginning, it will likely prompt all kinds of questions you’d probably rather not answer). But, speaking for myself after about 3 years of using mine, I’ve grown to actually see it, in a strange way, as a positive thing. It helps me. Conserving energy and not falling down are good things. And, if nothing else, it makes a handy weapon… (I’d also strongly recommend replacing the plain rubber tip with one of those little attachments that allows it to stand. Much more maneuverable and easy to use–and you won’t constantly be having to pick it up off the floor.) Customize it and make it yours. You’ll feel more comfortable with it.

    Reminds me–some months ago I was waiting for someone at the local university. There was a cute little boy sitting in the same lounge area. He thought my stick was the coolest thing(!). There are ads on TV for a fancy type of stick that stands upright. Mine stands upright, but it’s not one of those. He, however, thought it was one of those things he’d seen on TV. He thought it was just great and asked me all kinds of questions (much less annoying questions than grown-ups ask–nothing to do with my disability, and all to do with how it worked ). It was refreshing to see it from a childlike perspective of “cool walking thing” that someone would want to talk about rather than “stigmatizing disability thing” that people are pretending not to notice.

    • stumbling in flats says:

      My mum said exactly the same thing – it conserves energy! Which is the holy grail for people like us 🙂 It does make life a lot simpler and I wish I had the guts to use it more instead of deciding not to go to places I just know I’ll trip over at (cobble stones!).
      How awful the treatment you had with your neurologist. Surely they should know more than anyone the value of a walking stick?? I will be taking your tips about getting a cool one. Mine has roses on it and is a bit twee. Plus I keep dropping the blasted thing, natch, so it’s a bit battered.

      • Ellen says:

        Sorry for writing such a long comment! Got carried away. I liked mine a lot less before I got the tip for it that stands up. For me, comfort and practicality were the important things, but a friend has one that looks sort of part sporty hiking accessory crossed with arty carved bits that came from New Zealand. Whatever works! Conserving precious energy is good.

        • stumbling in flats says:

          I loved your comment!
          I’ve got some Nordic ski poles but last time I used them I got some funny comments, i.e. ‘Oi, you lost?’ Meh.

  3. Kerri says:

    Certainly no need to apologize to those further along. I think anyone in a chair remembers when they had to first use a helper and how difficult it was. I completely skipped the cane phase and went straight to a walker. It was such a relief to be able to do more and be faster, and I welcomed a signal to alert adults to give me space and children not to jump up and hug me. I still had to deal with curious stares and insensitive questions. It gets easier with time. I blogged about my transition awhile back.

    Able or Cane?
    When You Have a Flat

    • stumbling in flats says:

      What a brilliant comment Keri, thank you!
      I’ve been chatting to people this weekend about it and I feel a bit more ‘normal’, lol. The big problem is that the nerve pain in my legs gets gradually worse as the day goes on. So much so that by 7pm ish, it’s horrible. Clouds everything I do. I’ve had three days at home alone without Teenager and I haven’t gone out any evening, just stayed at home :-(.
      Anyway, thank you for the posts!

  4. Peter says:

    The stick is an accessory of your wardrobe. You use it as an extra arm. You walk with style and confidence. We do not live with a disability, we live with an inconvenience. We still move, we still function we still contribute, we just do it differently! Disabled car on the side of the road does not move. We do move, we do function, we just do it!!!!

    • stumbling in flats says:

      Could you be my own personal cheerleader please?! I like your attitude:-)
      You are of course absolutely right. I might have mentioned before, but I had the same feelings when I had to navigate a three-wheeled pram around London for the first time when The Teenager was a baby. It just seemed … odd to have a huge contraption in front of me and I was nervous/scared, etc…
      Funnily enough, the boss was driving me home yesterday and we stopped in traffic. Right next to me stood a dapper, and dare I say it, very handsome man. With a stick. He looked AMAZING. Boss had to central lock the doors to stop me from stumbling out and accosting him.

      • Peter says:

        I love your attitude !!!! Yes I would be honoured to be your cheerleader. Our MS Chapter has a motto and it goes like this “If we don’t laugh at ourselves then we will cry” I wonder if you were upset at your Boss for locking the doors !!!!! Your new MS Family member!!!!

        • stumbling in flats says:

          Yay! Can I be an honorary member??

          • Peter says:

            ABSOLUTELY !!!!!!!! Is it possible for you to send me your email address and the reason for my request is that I send out regular emails on various topics of MS along with research, exercise and feel good stories to our membership …. I will put your email in our data base that way you will receive all future emails …..

          • stumbling in flats says:

            Sure, that would be fab – will email you now…

  5. Cheryl Payne says:

    Can Peter include me on his email please. I read Stumblings blog all the time and would love to comment but I have so much to say I don’t know where to start. So I will keep quiet for a while. Anyway perhaps when I return from a holiday of a lifetime in Australia and New Zealand. Stick, Crutch foot up FES. I have tried them all I think a wheelchair has to be a must this time. Sorry I am a rambler( words not walking). Will post about my journey on return in Feb EEK!!! If I survive

    • stumbling in flats says:

      Wow!! Good luck and have a fabulous journey. Looking forward to hearing all about it 🙂

    • Peter says:

      Hello Cheryl, It would be our honour to have you included in our MS Chapter Family. Cheryl, in order to be one of our family members you MUST express your opinions, ideas rants and raves. Express Yourself and the world will be a much better place …..I know Australia and New Zealand will embrace you. Enjoy your holidays !!!!

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