Category Archives: Emotions

Mar 21 2018
18 Comments
Emotions

I Bet I Don’t …

A fellow Master’s student threw a massive spanner in the works of my so-called Life last week.

She emailed me a link to Student Finance; apparently from September, they will be funding PhD’s through loans, in the same way as undergraduates.

I’d long since put that dream to bed, packing it away with all the other dreams that MS had trampled all over – running a half-marathon, staying up past midnight, opening a packet of crisps, having a proper career,or even a partner.

The Master’s was a challenge I set myself and it was horrific at times. The self-doubt along with the regular cog fog, fatigue and inability to string a coherent thought together morphed into a mountain of despair.

However, the Student Disability Team at my University were magnificent and I wouldn’t have graduated without their ongoing support. The pride I felt on graduation day swept away all the struggles, even if my cap kept slipping and I panicked about foot drop.

And that’s the thing. It was a challenge; difficult, insurmountable at times.

And now, there is no real challenge in my life. I have a great job but it will never be a career – I’ve traded that dream for a job that is flexible, understanding and totally built around MS.

As for a partner. Lol. I’m nowhere near ready for that. Having been single since MS first began (almost seven years ago), I’m resigned to meals-for-one and over-indulging the cat.

Don’t get me wrong, I’ve long since moved on from my epic pity-party-for-one. I count my blessings, not least the incredible care and treatment I have had for the MS.

Yet, there is something … missing, something I could never, ever contemplate but is within tantalising reach. I’m not an academic and it was noted during my Master’s that I’m not an academic writer, so that’s a challenge in itself. But I have a germ of an idea that just won’t go away.

Part of me wants to give it a shot. Part of me wants to keep on binge-watching Netflix, cutting open crisp packets with my safety scissors and peering through the window, watching the world go by without me. It’s safe and it’s comfortable.

So, I’m putting this post out there, to you guys, not to convince me either way, but let’s chew this over. Six years part-time while still working is a huge commitment. Am I running away from dating? Or am I embracing a worthwhile challenge that will stretch me to the absolute limit?

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Jan 20 2018
4 Comments
Emotions

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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Jan 08 2018
4 Comments
Emotions

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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Dec 06 2017
6 Comments
Emotions

MS Is Curable – Just Ask the DWP

curedYes, surprisingly, MS has been cured for a third of us!

Surely we should be dancing and/or shuffling/stumbling in the street?

Well, no. MS is, and always has been, incurable. Degenerative. Progressive.

So far. Who knows what the future holds? And I pray for a cure.

Until then, we get on with our lives. Or so I thought.

We bring up our kids, we go to work, we engage in society. We may have to fight the odd unfair dismissal from work tribunal, but we still pick ourselves up and continue on. We live lives that slowly encroach upon what is ‘normal’ for our age-group. We give up stuff. We manage.

For me, one of the advantages of DLA was that I was able to access higher rates of Housing Benefit and Working Tax Credit. If I lose PIP, I will lose those also.

DLA basically pays for me to go to work. As it stands, I am already living well below the poverty line. To lose DLA will effectively render me homeless, as no-one can live on minus £75 a month, after the standard bills have been paid.

I’ve heard stories, from friends of friends, of people who don’t work as it’s not worth it. Yet we don’t all have work-place pensions or critical illness cover. For me, as long as I can, I will always choose work over the alternative. I don’t care if I earn the same or less than staying at home – work is banter, it’s real world and it’s choosing to live, as long as am I able to.

I have until Christmas Eve (lol) to send my PIP forms back, and then I think I will have a decision within 12-16 weeks.

Not a long time to plan for any alternative?

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Dec 04 2017
14 Comments
Emotions

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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