Not Private, Not Confidential

be honestI’ve had some lovely emails recently, thanking me for highlighting both the gruelling PIP process and the issue of poverty amongst disabled people, like myself.

It hasn’t been easy being so open, but my blog has always aimed to show the reality, good and bad, of living with MS.

The parallel, Non-MS Me (the one I often think about) would be living a very different life; I’d probably still have the usual money worries like anyone else, just not the grinding, heart-stopping ones I have at the moment.

It’s an easy path to trace – having to reduce working hours due to MS, to being sacked for having MS, to taking on a less-qualified job but one which allows a great deal of space to deal with MS. And then, that’s it – I doubt I’ll ever find another job which could give me the freedom I have right now, a huge benefit of working with my best friend who’s been through the whole MS process with me.

What’s not so easy to trace is the impact of everything else MS involves – the emotional upheaval, parenting with MS, the demands of invasive and intensive treatment, the side-effects and of course the ongoing symptoms. Thinking about it, it’s a wonder we came through it at all.

So, financially, MS can be as damaging to your finances as to your health and it can quickly become a downward spiral: MS symptoms may lead to social isolation, not helped by a lack of finances, which leads to stress, which leads to more MS symptoms, which leads to more social isolation. And then your benefits get stopped and it’s a whole different, terrifying ball-game.

I didn’t grow up poor and I didn’t expect to lead some of the best years of my life in poverty. But it’s happened and I have to deal with it, along with the 14 million others in the UK (1 in 5) who live in poverty today, an increase of 700,000 since 2013. In the UK, the fifth-richest economy in the world.

My main aim, as always, is The Teenager. I have raised him to appreciate money but not to be too hung up on it – to invest in experiences, not material goods. To enjoy sourcing a bargain and to learn how to draw up a budget at University. Which is probably why he arrived back home at Christmas with three loads of laundry (£6 a load at Uni, free at home) – I only have myself to blame.

Poverty is not shameful (a fact I had to get over, before ‘going public’) – it is the government who should feel shame and the employers who dismiss us who should feel shame.

We need to keep putting pressure on the government, keep forcing more PIP u-turns and feel … outrage?

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4 thoughts on “Not Private, Not Confidential

  1. Tricia says:

    Your words are so true, I was on DLA, had my PIP assessment and 0 points. It was the worst experience I have had in my life. I’ve hit rock
    botton. Lost the money, my road fund license.
    I’ve been made to feel that there is nothing wrong with.
    But PIP people I have MS it’s real so what the hell our you going to do to help me???? AND OTHERS???????

    • stumbling in flats says:

      It’s just awful, the whole scenario. When you think about it, going through an illness like MS, we should be nurtured and looked after, not subject to this kind of Dickensian nightmare. Sending a big hug to you X

  2. Joan (Devon) says:

    I was 59 when my MS symptoms started showing themselves, so it’s a lot different for me in that I’ve lived a life before albeit quite a normal mundane one.

    I don’t know how I would feel if I was in the prime of my life now and I don’t know how I would cope especially with the PIPs, so I don’t really have any advice to give.

    You seem to be a strong character, much stronger than I would be and it seems to me that although you’ve been knocked back by the PIPs, you’ll carry on being strong.

    • stumbling in flats says:

      Thank you so much 🙂
      It’s silly really, but all I want is to be left to get on with my quiet little life. I can cope with minimal money, but if I lose DLA it’s a completely different story!

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