Today’s Blog Is Brought To You By Letters, D, W and P

alloDWP. Brown envelopes.

Guaranteed to make any person with MS angry and anxious.

Since receiving Disability Living Allowance when I was diagnosed with MS, I now have to move to a Personal Independence Payment (which sounds enticingly exciting and intrepid?).

Well, it’s as far from independence as I can fathom.

My own personal case to one side (one I am prepared to fight, and fight hard if necessary), let me just ask, ‘Is MS Curable?’ The DWP seems to think so. For every person who has been or is still on a lifetime award with DLA (and rightly so), you now have to prove you have MS?

MS. Is. Incurable. Incurable.

Why on earth should we have to prove MS is … incurable?

Disability is great at making us invisible. We stay at home, through illness, relapses and fatigue. When we do go out, we are faced with hostility and abuse. How dare you have a blue badge? Move out the way, you’re slowing me down. You’re not working as hard as you should.

And this is the epitome of rendering us utterly out of sight (where we should be?), stuck at home, beset by social isolation and ever-increasing disability. Well done, DWP.

I live alone, now The Teenager is at University. Of course, all my child-related benefits have gone. However, as any parent with Uni-aged children know, you don’t suddenly stop paying anything at all towards their upkeep. Plus, University is 30 weeks of the year. The other 20 are invariably spent Chez Parent (in my case, the only parent, my ex-husband not being in the picture for this). The expense, in part,  remains.

And you cross that hurdle. And as the only person in the household, you trim your cloth according to your means. You adjust to a vastly reduced income, despite vaguely similar outgoings.

And then they come for you. The payments that made it possible to stay in work, to pay for help around the house. And now all that could disappear.

I’ve done the maths. My weekly disposable income with The Teenager at University is embarrassingly low. If I lose my disability payments, I will be in Minus Living.

What sticks in my gut with this whole thing is that I have worked my entire life, fought off a workplace discrimination case, started work at a new job and am still working. A job that fits around my MS, so-called ‘good-days’ and the utterly horrendous days, not forgetting the Can’t Function At All Days.

At this moment in time, I have been brought down so low, it’s hard to know how to come back up again. I could lose my house.

And I really thought I would be rewarded by trying, by dragging myself out of  bed day after day after day, all these years. By pushing myself to do things I would not have attempted previously.

There’s the nub. I should give up work. I should accept I have no other wage coming in. I won’t be able to live independently. And maybe I would Shut Up. And disappear.

D is for Diabolical Discrimination.

W is for Why are you doing this?

P is for Please, give me a break?

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28 thoughts on “Today’s Blog Is Brought To You By Letters, D, W and P

  1. Liz says:

    Excellently concise, as ever, Max and his brother’s father is afirst class employment lawyer…,( Mark Ridley, at Band Hatton Button, Coventry…

    I can happily give you their number, if you want to give them a call.,..

    Me, 17 yrs at CIMA, in London..,.part time as soon as I had delivered all 9lbs 8 Oz of Max?…., and that’s nothing…Luke…12 lbs 5 Oz….?

    • stumbling in flats says:

      Thank you, I will bear it in mind 🙂 It just seems like, here we go again, another fight on my hands!!. From ex-husbands to employers, etc.

      • Liz says:

        Yep, well done you. Mark & I got on fine for x no. Of years…:don’t look back, look forwards now…..always?…well done you…, stay strong ?!

        • stumbling in flats says:

          I will! I’ve just heard back from two lovely friends who have said they will help me fill out the forms. So between you guys and them, I feel a whole lot better than I felt on Saturday. I don’t think I’ve stopped shaking since then 🙁

          • Liz says:

            Me too, writing imposs these days, but a sis will have to fill out the form, re: my increasing disability, it might be funny were in not my/your Incurable MS…..wicked illness? Yup, for sure?!

          • stumbling in flats says:

            Truly wicked!!

  2. judy says:

    Oye. You are so eloquent. I’m sorry to hear that bs is happening to you. Maybe it would help if you specifically spelled out to the PIP the expenses you still have when your son returns during Uni holiday time and the number of weeks it is. I’m cheering for you!

  3. Dave says:

    I had fun and games with this ridiculous system last year! Nothing but an attempt to rob us of our independence and keep us out of view. They have no idea how things like MS work and have a one size fits all approach which doesn’t work with MS never mind with the multitude of illnesses that mean people need a little extra help! Gotta fight them all the way cos with me it was obvious they never had a leg to stand on at my appeal!

    • stumbling in flats says:

      Absolutely right – it’s all down to snatching what little we have left of our independence. When you’re held hostage by an illness such as MS, independence is vital. And this one size fits all approach is utterly ridiculous. Fluctuating illnesses like MS just aren’t accounted for in this system.
      Just had a look at your blog – I love your writing!

      • Dave says:

        Aww thank you. I just wanted to keep track on what was happening cos that PIP fiasco started December 2015 took me till October 2016 to get it sorted, and think I was one of the relatively quickest to be dealt with! It’s an absolute sham. Just did a thing for the MS society magazine about why it’s important we speak out on things like this cos god knows no one else will. I hope things improve for you. Would be a real shame if you had to stop working and totally counterproductive to what Westminster says they’re trying to do, get us in work!

        • stumbling in flats says:

          I look forward to reading your piece in the magazine. You’re absolutely right, it’s so important to speak out on things like this. I did think long and hard before I wrote the blog, part of me wanting to stay private about it. But it’s such a terrible thing most of us are going through at some point, we need to stand up and be counted! X

          • Dave says:

            Cheers, just had proof copy sent through to me so think its in next month. I was so angry with PIP so jumped at every chance to speak out about it, papers, tv. My MS has never been highly active, it was just the first two attacks that did the damage. Seems to have increased in activity since dealing with PIP though. Gone to part time work now with new lesions appearing on each of the last two scans (get an MRI every year now). Can’t prove it was the Tories/DWPs fault but i know it was :). If there’s anything I can help with as you go through the system please get in touch even if its just to have a moan cos god knows I did plenty of that!

          • stumbling in flats says:

            I know exactly what you mean!! See my latest blog post, lol 🙂
            I feel utterly done in. Yet another fight, one which I’m not sure I have the energy for.
            Thank you so much for your lovely offer – I may just take you up on it!!

  4. Claire says:

    And to think that our prime minister’s mother had multiple sclerosis, she might be more sympathetic.

  5. Annie says:

    Outrageous that you / we have to do this. Utter BS , like you’re/we’re suddenly going to be MS free!! Chances!? Good luck with it … Northern Ireland a bit behind lol what’s new so I don’t think PIP is here yet but I could be wrong xx

    • stumbling in flats says:

      Yup, it’s completely rotten to the core. I really don’t understand why they don’t just seamlessly move everyone who had a lifetime award onto the new system. It defies belief. x

  6. Keith Rhodes says:

    I prefer to see you as
    Woeful treatment, still

    Try to stay positive , whatever is done to you by the uncareing .

    As for me, I feel proud of myself for resisting using another word rhyming with bankers in my alternative DWP


    • stumbling in flats says:

      Thank you so much! The support I’ve received from everyone through the blog has been so amazing. Once again, you guys are seeing me through pretty rough times!
      I have no idea what rhymes with bankers 😉

  7. Aaron says:

    Well written and totally honest as always. Good luck fighting the good fight. Don’t give up x

    • stumbling in flats says:

      Thank you! I’m feeling a whole lot stronger about things now, after being utterly poleaxed by the letter. Definitely won’t be giving up, just yet. x

  8. Keith Rhodes says:

    W……… hen you think about it there are quite a lot.

    Try to keep smiling and I hope this helps X ?

    • stumbling in flats says:

      Love this! Thank you for making me smile 🙂 x

    • Keith Rhodes says:

      Sorry Folks. I meant to type Spankers rather than Spammers.

      Should I be relieved or has Spam worse press than a Spank ?

      It was late at night and I was tired.

      Too tired for either a luncheon meat supper or to punish myself.

      Lord knows what Freud would make of this post …..

      Try to keep smiling. Incidentally Spam fritters are a favourite at local hot food takeaways.

      Bet I cannot live that well in Knightsbridge.

  9. Tricia says:

    I lost my PIP, coming from DLA, 0 points, I have MS, also worked since I was 15!!!, the stress made me feel ill.
    Depression gave such a big black hole, I felt like I did not have MS. I am fighting to get back my
    Life, as it is.

    They even took notes against me for being able to remove my driving licence from my purse.
    And being able to talk clearly and understand what they are asking you. I don’t want to talk about my problems with a complete stranger.
    Depression, bowls, vertigo, sleeping etc, why is
    A letter from your consultants and doctors not enough. Afterwards I found out, they had not
    Contacted them.

    When I feel I can, I will reapply, and try and get
    Professional help, with it all.

    They don’t no or care what they are doing to people’s lives.

    I feel we have gone backwards in time and they don’t give a care for any of us.

    • stumbling in flats says:

      This is just absolutely awful to hear. I’m fuming.
      I really hope you will feel up to reapplying soon. Please contact your MS Society to see if they can signpost you to an organisation that can help?
      You’re right – the DWP does not care, has no regard for the devastation they leave in their wake and are morally corrupt.
      The bankers caused the financial crisis and recession, we are paying for it, it seems.
      I’m here if you want to talk 🙂 X

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