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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Photoshop Would Be Great, Thanks …

flumpI’m a teeny bit nervous, and for once it’s not down to discovering a Dreaded Brown Envelope from the DWP on my doormat.

Nor is it about waking up to several texts from The Teenager at Uni along the lines of,  ‘Mum, muuuum! Oi! Where are you?’

These are usually sent way past my bedtime so I don’t see them til the morning. I frantically text back, imagining all manner of horrendous possibilities, then curse when I eventually get a reply, ‘No probs, just fancied a pizza and had no money. Soz, Lolz.’

No, my nerves are simply down to having my photograph taken, quite possibly my least favourite activity of all time. I don’t have a good side. I don’t have a not-so-good side. I am just totally un-photogenic. From any angle, I resemble a Flump.

I’ve been made a Disability Wales ambassador for their campaign, #IAmEmbolden, and my role will be to encourage more deaf and disabled women and girls into further education. There will be a ceremony in the Welsh Government building in March, hence some photographs, which will be displayed on the day.

It’s a cause I’m really excited about, as I didn’t realise just how much support there is out there for people like me who need a little extra help with studying. Without it I certainly wouldn’t have completed my degree back when MS started and I absolutely would never have even contemplated taking a Master’s.

So, I’m starting to panic. I want to look calm and encouraging. What to wear? Sitting down or standing up? Hands clasped or at my side? Most importantly, how long can I suck both my stomach and my cheeks in?

I’ve heard about a few tricks – put your tongue on the roof of your mouth and it’ll give you cheekbones. Nope, it makes me look gormless. Be shot from above, and that way they won’t capture your double (triple) chin. Nope, I looked as if I’m trapped in a manhole.

Knowing my luck, I’ll end up posing like someone from one of those catalogues that fall out of the weekend newspapers – pointing at some far off place or pretending to laugh and point at the same time.

I’m putting my faith in Photoshop, in the hope they can tweak a few bits here and there. It’ll be a lot easier than wrapping my entire body in cling-film tonight, turning the heating up full blast and praying I lose 8lb.

As long as I don’t do my fish-face, I’ll be fine. I think.

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Less Is … More?

lessFor a couple of months now, I’ve been getting used to a much reduced income, despite fairly similar outgoings.

This will only get worse if I fail to move from DLA to PIP, and drastically so.

With this in mind, I’m tightening the belt even more – if my waist was as small as my budget, I’d be a very happy bunny.

So, I’m squeezed from every possible angle. You can only imagine my happiness when I had a letter through stating that my water bill was now £20 a month instead of £25.60 – due no doubt due to the reduction of Teenager showers and endless washing machine loads.

And the thing is, I’m quite comfortable living with less. I’ve lived a fabulously wealthy life and an incredibly poor life over the years and both have their plus points. However, I would definitely say that having oodles of money does not always equate to happiness – far from it.

In these days of straightened times, kindness comes from unexpected quarters. A friend sent me a pizza. Another friend gave me a plant. And my mum popped down today with a bag full of food, plus a sachet of Dreamies for the cat. Knowing I have £40 to last me eight  days, this is a god-send.

In the news today there is a report that people are spending a fifth of their income on rent. I spend over a third. Well over. It’s by far my biggest outgoing. Council tax, at almost £100 a month, is another significant payment. And that’s before the other bills.

Don’t get me wrong, living frugally is depressing, anxiety-ridden and downright horrific. I’m just about coping at the moment, but that’s with DLA in the equation. Take that away and deny me PIP and I’m in a whole other realm.

It’s weird – I work, pay Council Tax, pay my bills on time religiously every month and yet if I lose DLA, I will be in absolute poverty, rather than genteel poverty as per now. What I fail to understand is that the government plans to get 1 million more disabled people into work whilst simultaneously stripping them of the financial means to do so. Damned if you do, damned if you don’t?

Being disabled isn’t cheap and it’s not a lifestyle choice; I certainly didn’t choose to have MS at 37 and for  it to totally change my life’s path. In an alternate reality, I would (after years of low-paid unemployment to be available for my son) now be a fully-qualified teacher/social worker/lecturer. Well, that didn’t work out.

I’m resigned to MS now, but I’m not resigned to being poor.

Plans are afoot …

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MS Is Not The Only Illness

breathingI don’t know about you guys, but MS is hard enough to handle without the extra winter bugs chucked our way.

It’s tempting to think that when you’ve drawn the health short straw, anything else will be minor, easy to handle.

I stand (slump) corrected: I’ve been off work most of January with a rotten, stinking cold and it shows no signs of leaving any time soon. To add insult to injury, I’ve lost most of my voice (I know, me?!) so I’m particularly frustrated.

However, as befits anyone starting the New Year with a commitment to Get Things Done, I’ve ticked a few things off my list:

  • I finally replaced the bulb in The Teenager’s bedside light.
  • I took the cat to the vet (again) to sort out her flea-bite allergy (again) and jokingly begged the vet to give me the same steroid injection.
  • I ordered a whole load of herbal teas online, inspired by a Christmas gift. They look nice on my shelf.
  • The Boss took me on a trip to Ikea, where I munched on some weird eggs in the cafe and bought a stack of tealights and a sad-looking plant.
  • I spent a whole day and evening debating with myself whether I should paint my living room black/very dark grey. Still undecided.

The worst thing about an extra illness is how MS interacts with it; if MS had any decency, it would take a back-seat and allow a bit of time to get through this whole new host of symptoms?

Not a chance – all the usual MS symptoms have been amplified x 20. So now I’m yet again pin-balling around the house as my balance is appalling. I’ve tripped up the stairs and down the stairs. I have bruises all over my legs and if I break one more plate/cup/bowl, I’ll … break another one against the wall, if only I had the energy.

I’m bored and fed up. Just when I think it’s over, it flares up again. I got my voice back for a day and caught up with my phonecalls. Then it died, probably to the relief of everyone, including the cat. I had a tentative day back  in work yesterday. Bad idea. Very bad idea. I listed, lolled and lay upright against the walls, until it was remarked upon by everyone else and I was sent on bonfire duty, which sounds a lot more exciting than it actually is – burning a load of stuff and making sure I don’t set the work site on fire.

As I sat there with a long stick, intermittently prodding the embers and wishing I had a bag of marshmallows, I decided that when I was better, I would absolutely, completely and totally … do something different.

But what?

 

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May You Live In Interesting Times …

cookieI always thought this was a Chinese blessing, not a curse.

I think we’re all living in, um, interesting times. From the global (will we be blown up tomorrow?) to the local (will my MS nurse understand my latest ramblings?).

I had an MS nurse-led appointment on the 3rd January and I told her everything. Which is quite unlike me; I’m usually, ‘yeah, I’m fine. Huh? MS? Oh, yeah, it’s all good.’

After the initial shock of diagnosis all those years ago, I’m savvy. Or perhaps not. I hold it all in. I consult my notebook, mention ‘significant symptoms’, ‘potential relapses’, etc and then say, ‘that was lovely, thank you very much’.

Not this time though, and I even came close to … tears. My lovely MS nurse said to me, ‘… it seems to me like this, the PIP forms, are the last straw of everything you’ve been through and all the fights you’ve had?’

Yes, yes and yes again.

Every single person, whether they are healthcare professionals or people with MS and/or other neurological disorders all say the same – if you strip someone back to what they cannot do, after years in which they have adapted and overcome obstacles, you are merely increasing the despair and anxiety of formerly positively active people.

So where does that leave me now?

In the wee small hours, I am absolutely petrified. Towards morning, I’m calmer. During the day, I laugh it off. Until it starts again. The ramifications of this single benefit, PIP, are huge.

I hate to bring politics into it, but when I’m only asking to continue working and staying on the poverty line, it would be churlish not to?

Theresa May’s ridiculous decision to call a snap-election was solved by spending over a billion on harnessing the DUP voting power.

A billion. Like *that*.

Oh, and we’re the scroungers Mrs May?

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