Tag Archives: multiple sclerosis

The Human Side of Politics

I rarely write about politics, although I have taken part in other media regarding the utter disregard the national political narrative seems to have for disabled people, despite the fact there are 13.9 million of us in the UK.

Since the global recession, the optics have been cleverly shifted away from the very source of the problem – the finance sector – to the most vulnerable of its victims – us. And when that ‘us’ have no voice, it’s a recipe for right-wing thinking.

Slashing disability benefits was a good place to start and allowed the media free reign to wage war on us, and how. We were cast as the ones draining the economy, not the foolhardy bankers. It’s a staggering leap, but the press and public latched on to it with a vengeance.

Living in a marginal seat, I’m going to share my experience of my previous MP, Labour’s Anna McMorrin and her Conservative predecessor.

Long story short, Anna McMorrin displayed a deep compassion not often seen in today’s politics.

A few years ago, I noticed that the parents of a local school took every disabled space in the main car park, behind the shops where I live, twice, three times a day. I asked a few of them why they did this as there were plenty of other non-disabled spaces. Their replies were illuminating:

‘Disabled people don’t go out this early’

‘It’s only for five minutes, what’s your problem?’

‘They’re all scammers anyway’

When I met my Conservative MP canvassing for votes outside those shops one day, I approached him and asked him if he would help with this matter. He told me it wasn’t his problem and I should speak to the school involved. When I said I already had and was told, ‘it’s not my problem, speak to your MP’, he couldn’t get rid of me fast enough and in an extremely dismissive manner.

Fast-forward to October 2017, five years after I was awarded a lifetime Disability Living Allowance(DLA) due to my diagnosis of Multiple Sclerosis. Until MS is curable, it makes sense; it’s a progressive, degenerative illness.

I received my ‘invitation’ to reapply for the new Personal Independence Payment as DLA would be stopped. I went into a tailspin – for five years I had tried to remain positive, focus on the positive and, well, be as positive as I could be living with MS. Now I was invited to write endless answers about how much MS had negatively impacted my life and would continue to do so.

It was a desolate, soul-destroying experience, picking apart my life in minute, excruciatingly personal detail. I went in to a deep depression and had to ask for further time to complete the paperwork. However, I was blessed to have wonderful support in Stuart and Marie Nixon who held my hand and kept me sane throughout the whole experience.

I submitted the paperwork on Christmas Eve 2017. On 13th February 2018, I had a face-to-face assessment at home by a Capita representative. I could write endless blogs about this car-crash, but suffice to say, she somehow observed that I was absolutely fine (without any Quality of Life measures or fatigue measures undertaken, amongst many other complaints) without taking her eyes off her computer. In fact, she appeared stressed, hurried and short-tempered and told me she had had a long day and I was the last on her list.

Of course, the next month, my benefit was reduced drastically. I send a mandatory reconsideration letter. This was turned down. I sent an appeal for a tribunal, and was informed at the end of June 2018 that it would be held at ‘some point in the future’.

And then fate intervened; someone who reads my blog met my MP, as-then Labour’s Anna McMorrin, and told her of my case. This person (still anonymous to this day), emailed me, urging me to contact Anna as she could help me. I didn’t hold out much hope, but was running out of options, so I called her office and spoke to a lovely case-worker, Lauren. I sent documents over and waited for the rebuttal.

It never happened. Instead, Anna and her team fast-tracked my appeal, moving it from a normal PIP tribunal to a District Tribunal Judge. By this time, I was in hospital for a hernia operation, as if MS wasn’t enough. After two nights under observation, I came home to a letter – in my absence, I was awarded PIP.

To add some context to how much this means to me – the loss of DLA meant I was perilously close to homelessness. In preparation, I had already contacted shelters and advice-lines as to what my next steps could be and the outlook was bleak. I have no partner to fall back on and due to MS, I work part-time so all living expenses were my responsibility, with the added stress of factoring in time off for MS problems. I spent endless hours working out the figures and they simply didn’t add up. It was a tipping point.

In short, Anna McMorrin has kept me in the house I have made home for me and my son for the last 15 years. I am not in a shelter, awaiting rehousing. I have breathing space, so I can pursue my dreams of further study. I feel safe.

My body might continue to conspire against me and it does so on a daily basis. But to know that I still have my own personal space, and to keep hold of the only home my son has ever consciously known, means the world.

I believe we have a Conservative candidate parachuted in from London. He may well have grown up in Cardiff. I grew up in Glasgow, left as a teenager, but would never claim to understand the intrinsic social problems there now. I do not want this person to represent me.

Anna McMorrin restored my faith in politics and for that reason, I will support her all the way, as she did for me.

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Honestly? MS, Again and Again and Again

Just when I think I’m doing a pretty decent job of faking it with MS, I discover that no matter how hard I try, it will always make its presence known.

When I say ‘faking it’, I don’t mean denying I have this illness, it just means that I try to hide stuff from the people who mean the most to me.

Yesterday, this hit home in an unexpected way; I had been at work and once back home, I put the fan on to cool down the house.

When The Teenager came home, he found me semi-relaxed, reading a book and being blasted by a formidable Arctic chill. So what followed was surprising:

‘You ok?’

‘I’m great! Fab fan! You ok?’

‘God, it’s depressing.’

Hmm, did he mean something had happened when he was out? Or was it the state of the world? Politics? No.

‘I just feel so sad that you have to sit in front of that thing to feel ok. It’s depressing.’

I tried to explain it was all good, I felt fine, I was just dealing with a symptom.

‘Still crap.’

I understand where he’s coming from – he’s had a fair old journey as the child of a single parent with MS which hit right when he started high school. He knows my MS foibles inside-out, but no matter how much he’s witnessed over the years, I’ve never relied on him as I wanted him to blossom and grow despite MS. The same wish I have for myself, I guess.

Of course, he will always have this hanging over him, as I am his main parent. He reads too much on the internet and stores it up until it explodes in fear and anxiety. I will always provide a safe harbour for him to come back to when he needs to.

I guess I am the Great Pretender. I refuse most offers of help, I push myself to the point of exhaustion and in some ways, I gain a lot of satisfaction by doing that and stuff the consequences. Yet within myself, I have somewhat calibrated MS to suit me; I go to work when I’m at my best MS-wise, I catch up on paperwork when I know I can engage my brain, I write randomly, whenever I can and I now accept that when I can’t, I can’t. No matter how frustrating.

When that happens, I’m stuck on the sofa, or in bed. Lying flat in a cool bed sometimes brings more relief than any meds. I realise my life has shrunk, but in a bizarre way it’s also grown. Without MS, I could still be in a dead-end job with a dead-end partner, cycling through life with no real care or direction. Life has been honed down towards what is most important, and that’s been a huge learning curve. I’ve discarded all thoughts of what I should be doing, could be doing, ought to be doing. I now choose.

So yes, MS happened. It’s not the best, it never will be, but I will try for as long as I can to continue to be the best parent I can, above everything. If I could only reassure The Teenager more, I would be happy forever.

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Public Speaking and Other Horror Stories

I am not, by any stretch of the imagination, a public speaker.

It’s something that has always terrified me.

I trace this back to moving from Scotland to Wales when I was 14, and asked to talk to my English class in a new school about some topic I was passionate about. The girl before me spoke about The Body Shop and smashed it.

I mumbled and stuttered through an excruciating two minutes and swiftly sat back down again, cheeks flaming.

Since that time, I vowed never, ever to speak to an audience again.

Until MS.

Why did MS give me back a voice I lost?

For one, accent doesn’t matter. Second, a slick speaker is all well and good, but sometimes it is just as important to hear from someone like me, an average person , saying it as it is, mumbling and pauses accepted.

During my work in raising awareness about MS, I have been fortunate enough to speak at MS conferences in Hungary, Greece and Denmark. When I say speak, I mean talking with passion to audiences, voice wavering. I always keep in mind that if I can survive a two-hour lumbar puncture by a Doctor who has never done one before on a live patient, I can survive anything (true story)

And that’s the thing about passion – at my last conference, we were talking about Patient Focused Priorities, something I’m, well, passionate about. We had all chatted beforehand, ran through some scenarios, but to be live (it was live-streamed), to be there, at the conference, for that twenty minutes, I wanted to give my all.

It could have gone either way. I blow-dried my hair (taming the unruly curls), I dressed in smart black trousers and a grey top and made my way to the conference room. I was led to a bank of dials and switches and mic’d up (bit embarrassing, muffin top). Then I sat down, heart pounding.

It seemed a good idea weeks before, so we agreed, as I was in Scandinavia, I would explain my background. In Norwegian. A language I used to speak fairly fluently until MS blasted me with a massive relapse of the speech part of my brain, which I’ve been told is quite unusual.

However, me and my wonderful Norwegian host began…

Reader, it was amazing. My Norwegian was awful (to be expected) but our rapport carried us through,

Looking back, I think it is the same for all of the conferences I have spoken at. I’m not coached, tutored or subjected to a round of interviews: I’m invited because I am me, living with MS.

I would like to think that a genuine speech about someone living with MS is more effective than any PowerPoint slideshow.

I may mumble, stumble and fumble, but I get my point across.

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A Wrestler in the MS Ring

The last seven days have been interesting, if nothing else.

Each day brought a flare-up of existing MS symptoms; one day blinding fatigue (hit by an anvil), the next Bambi legs.

Then there were the dodgy hands (hello smashed crockery), the stumbling, the teeth-gnashing nerve pain, the upside-down balance issues.

As I normally do when this happens, I retreat home, batten down the hatches and conduct life from my sofa and my bed. It’s taken years of practise and I think I now have it down to a fine art. Even the cat knows what’s expected from her. She has a chair opposite my bed (with a special blanket on it) and keeps a beady eye on me and also dominates the sofa opposite mine (much to The Teenager’s chagrin when he’s home).

MS is a boxing opponent who just won’t give up. They might leave the ring for a little while, to grab an energy drink or something, ready for the next bout, then they’re striding towards you once more, when you’ve barely made it back on your feet.

And the worst thing about this? Every single one of my symptoms are virtually invisible to all but the people closest to me. If I have to explain nerve pain and fatigue one more time, I’ll scream. And if someone says, ‘but you looks so well’, I’m half-tempted to say, ‘yeah, bit fat, got MS’ and see if they shuffle away.

MS is a very lonely illness. Of course, I live alone, but still. It shoves you into the deepest, darkest corners of real life. I had to cancel meeting a friend yesterday and I was devastated. I schlepped around the house, slept three times and listened to life going on outside my window.

So, I went to work today. I know I’m lucky, working with my best friend. He picks me up in the van, coffee ready in the cup-holder. He takes me shopping and on errands. At work, he made me take ‘cool breaks’. We had a laugh and it felt wonderful to be out and about, engaging in real life, despite my legs crawling with pain. For a short while, MS didn’t matter.

I get knocked down and I get back up again as the song goes and MS truly feels like that. Each day is shaped around MS and I could let it dominate or I can work with it to make it work for me. It’s amazing what you can get done from a sofa before nodding off to sleep yet again.

There may come a time when the balance tips, I know that. But until then, I’ll take the blows and get back up again.

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Has MS Changed Me? Hell, yeah …

I’ve been thinking.

MS has almost taken me back to my wild teenage years, when absolutely nothing held any fear.

Take a train to Austria after your last A level? Yup.

I travelled the world, got into numerous scrapes, came out alive and picked myself up. Crossing a river in The Gambia in a sinking ship springs to mind.

Then, when I was 26, I had The Teenager and life naturally took on a more sedate pace.

Which continued for the next 18 odd years.

I settled into a nursery/school/rugby/the many other activities routine. I was in a job I loved, working with a wonderful person but it had no future. However, it was close to his nursery and school and that was all that mattered.

Then, MS. An explosion, obliterating life as we both knew it. I remember a conversation with The Teenager, as he stood on the threshold of High School, when we discussed how we should approach the MS imposter. By this time, I had had my first treatment of Lemtrada and was back on my feet, just.

We decided we should throw ourselves into campaigning and so it was that we attended our first march, against austerity and benefit cuts (‘I’m Not a Scrounger, I Have MS’ placard) back in 2011. The Teenager came with me and was delighted to hear the speakers swearing. He then came with me to awards ceremonies, meetings and discussions. He was interviewed, photographed and involved in all the media projects.

I had changed jobs through this time and was subsequently sacked from it after my diagnosis. The Teenager went through the whole legal case with me, alongside navigating the high school system. But we came back stronger. I got a new job, enrolled in a Master’s and he knuckled down to studying.

Life wasn’t at all easy – I had to sleep a lot, which I think is frightening for an only child with one main parent. I know it still scares him.

Every single event or speech or article I take part in is a blast into the unknown. Public speaking terrifies me. Seriously. Yet I keep putting myself out there and campaigning for disabled rights and acceptance. Most recently, I have been shortlisted for a Wales Online Digital Award and am due to speak live at a conference in Copenhagen at the end of the month. Gulp.

So has MS made me more brave? Erm, yes. What is the worst that can happen when the worst has already happened? I’m still terrified of public speaking, I would like more Photoshopping, a rapid weight-loss solution and a Master Class in public speaking.

However, when I am on stage, I am … me.

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