I’m Better Than This …

miracleThe PIP forms have almost broken me down.

Shattering my psyche into tiny squared-off questions after years spent building myself up again has been incredibly difficult.

I’ve taken over a week off work; I’ve been virtually alone for eight days now. Apart from the cat and her various friends.

And that’s pretty tragic?

I watched the film ‘Wild’ two days ago, and although I haven’t trekked the Pacific Crest Trail for hundreds of miles, I did so in my mind.

When I’m upset, I hibernate, preferring to look my worst in the mirror and not to the outside world.

It’s a bit like a pity-party for one (and a half). It’s torturous.

Today – day 9 – I went to a short MS Society meeting less than two miles from my house. Safe.

Long story short, the support I had was amazing but people wondered where the real me had gone. Probably still on my sofa wondering how to dispose of the latest dead mouse outside my door and how best to fill in my PIP forms.

The real me?

All the PIP drama is akin to the employment tribunal of 2012; he said, they said, you’re lying. Analyse every single tiny little thing.

As someone said to me in the meeting today, yes, I am better than that, no matter the outcome.

Is the real me in there somewhere?

There’s definitely the old me, bubbling somewhere under the surface, but until the very real financial predicaments are put to bed, I may very well be the grumpy aunt at the Christmas festivities.

Don’t get me wrong, I love Christmas and all the promise it offers. It’s a magical time, and perhaps that is why I am praying for a miracle?

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14 thoughts on “I’m Better Than This …

  1. Keith Rhodes says:

    I thought of you and the appalling ” Justify today what we gave you yesterday with far fewer questions when we never justify sufficiently anything we do or do not do nowadays because you insisted we drop everything else to bottom Brexit negotiations so we can all ride into the future visiting all our pink Commonwealth outposts to collect the dues that belong to our noble Nation ” when I dragged myself to the cinema to watch a great film that somehow fitted nicely with that rant !

    I am a cinema fanatic to the degree that I have ordered and paid for a copy of the great film I saw.

    Shame that the trailer is lousy ( the film is MUCH better ).

    Not only is it almost unprecedented for a film to have three friends as the lead actors who all are wheelchair users but how refreshing it was for them to shoot those who p***ed them off. The film looked great too and has a fabulous soundtrack.

    I know it may sound as I have lost my marbles but if any of the PIP officials or UK Government who have imposed the offensive PIP rules on us are in the vicinity when they make Kills on Wheels II, they may hope that they only lose marbles.

    I will go and lie down now to try and restore my usual calm self.

    Love to everyone or almost everyone …….

    • stumbling in flats says:

      I need to watch this film!!!!!
      And it doesn’t sound like you’ve lost your marbles at all, quite the opposite. Loving the first paragraph of your comment – I may use this! x

      • Keith Rhodes says:

        Thanks ever so for your very kind comments.

        I saw the wonderful film Kills on Wheels at a Film Viewing & Film Society Awards event in Sheffield recently ( as I am chairman of Halifax Film Society I get invited to such events ).

        Kills on Wheels is a Hungarian film with English subtitles and I gather it is due to be released to the UK public for purchase in January or February 2018.

        The only previously released film , that shares something of the same spirit, of which I am aware, is Inside I’m Dancing which I also loved ( surely the best ever performance of James McEvoy )

        To start your run of great film pleasures, I must recommend to you the film Taxi Tehran. I should have told you earlier as it was shown on BBC4 or Film 4 earlier this week.

        I have a copy and have seen it 3 times.

        A life-enhancing joy of a film if ever there was one and just the tonic if PIP is driving you mad.

        Love to all.

        • stumbling in flats says:

          I’ll keep an eye out for it. I loved Inside I’m Dancing – one of my favourite films, and definitely McEvoy’s best performance!
          On your recommendation, I’ve just downloaded Taxi Tehran 🙂 It was on BBC4 – looking forward to it! X

          • Keith Rhodes says:

            I am delighted that we both loved Inside I’m Dancing ( Sod those who shake their heads at those of us with disabilities who can laugh with disabled characters in films or on TV – though I will forgive my Loving dear partner who struggles to watch Last Leg on Friday nights ….. ).

            I am also delighted that you have downloaded Taxi Tehran. If you enjoy it half as much as I do then you are in for a treat, I reckon.

            I truly love rabbitting about terrific films and I must warn you that I have an awful tendency to want to convert everyone to my views on what are the best and the worst films. You are warned !!

          • stumbling in flats says:

            I’m looking forward to it! And I’m always open to film recommendations, especially since taking my scriptwriting course!! X

  2. Joan (Devon) says:

    This post reminds me of a poem I wrote in May this year. If you like I’ll send it in the comments, but I warn you that it is 14 verses long of four lines.

    • stumbling in flats says:

      Please send!! X

      • Joan (Devon) says:

        I did warn you that it is a long one. Here goes,


        You don’t understand MS?
        Is that what you’re telling me?
        You don’t know what the fuss is about,
        There’s nothing special to see.

        That’s because we hide it so well,
        With the face we put on display.
        We don’t want to be labelled, Grumpy,
        Each and every day.

        You really don’t want to feel the pain,
        That’s dealt to us each day.
        I’ll spare you that performance,
        But I just want to say …

        “I’m putting on my face today,
        So not everyone will guess,
        That instead of a cheery soul,
        Underneath I’m an absolute mess.

        Yes, I can cover the cracks
        And smooth them out quite well.
        So no-one will ever know,
        I’m living through my hell.

        I’ll paint on a smile
        In a vibrant and cheeful shade.
        Pretending that I’m ready,
        As part of the charade.

        Hiding my aches and pains,
        That are difficult to describe.
        Keeping you all in ignorance,
        Because all I have left is my pride.

        My acting will be perfect,
        As I have the starring role.
        Pushing my feelings to one side,
        Just like a burrowing mole”

        Am I hiding it well enough?
        Or did you get the clue?
        That my face is all bravado
        Keeping my pain firmly from you.

        You tell me that my efforts,
        Have not been totally in vain,
        That you only see the actress
        And not the excrutiating pain.

        I can’t explain or elaborate
        Exactly the pain that I feel.
        No words can ever express
        The nasty grip of MS steel.

        Nor can you possibly know
        Of the hopelessness felt from within.
        That progression is inevitable.
        With squared shoulders I offer my chin.

        All I have left is an active mind,
        With imagination and thoughts untold.
        It’s like a colourful rainbow,
        With an occasional pot of gold.

        That’s it! I’m done! I’ve had my say,
        Of MS and it’s effect upon me.
        Do you understand any clearer now?
        Or did I waste my limited energy?

        Hope you got through it okay, the poem I mean as well as your relapse and cold.

        • stumbling in flats says:

          This is absolutely beautiful! I wonder if you could get it published somewhere?
          Thank you so much for sharing, Joan. I’m going to print it off and keep it 🙂 X

          • Joan (Devon) says:

            Thank you Barbara, I’m glad you liked it.
            I don’t think poems are very popular, certainly not ones about MS.
            I bought that magazine you referred to a while ago, but it was mainly about short story writing. Although I sometimes like to tell a story in my poetry I don’t think I’d be any good at actually writing a story.
            Have a good week.

          • stumbling in flats says:

            That’s a shame 🙁 One of the writing magazines I read has quite a big section about poetry every month, which I always skip over as I can’t write it! I’ve always been so envious of people who can.
            The Teenager is experimenting with song writing and some of what he sends me is pretty special, and almost like poetry.
            Have a good week too – I’m back to work tomorrow after over a week off and quite looking forward to doing normal things again rather than being mired in PIP forms! X

  3. Julie Martin says:

    I feel your pain. We do well to get on as usual, as much as we can, then DWP want us to think deeply about the stuff we try not to notice. Then we have to go through the awful process of being questioned by someone who is thoroughly bored and can’t be bothered to think about what we are saying. DWP look at it and take the stance that we must be pulling a fast one.

    Some of us are not up to holding down a job, even though we want to and are treated like lying scroungers, when we are not.

    I really feel for you going through this alone, I have to too, it is a horrible process being forced to expose every issue to strangers who are paid to dis you.

    Know that even though you are alone in your cottage, there are lots of others also alone in their homes, sighing over these forms, which means that we are not really alone in all this.

    I am in Essex which is many miles away from you, but my thoughts are with you going through this. Hopefully you find some comfort in that there are people who get what you are saying. It’s hard I know but don’t let it take over your creative space. Don’t give the DWP too much of yourself, save some for the things and people you love. x

    • stumbling in flats says:

      What an incredibly kind comment, Julie. Thank you so much!
      I’ve been overwhelmed by everyone’s support and I really do feel much less alone now, even in my little cottage 🙂 It’s been good to blog about it but now set it to one side while I transcribe the forms and wait for the reply. Not a lot more I can do than that really. My blog truly has been a lifesaver and I feel really surrounded by everyone’s good wishes and thoughts.
      I’m so sorry to hear you’re going through the same thing. You’re right, it’s been terrible to dig so deep and bring up stuff I’d either adapted to or just ignored. A really painful process! Like reverse counselling or something – being broken down instead of being built up.
      Thank you again 🙂 X

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