Category Archives: Daily Life

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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Nothing About Us, Without Us?

The news came through a few weeks ago that the medicine I chose to tame my multiple sclerosis (MS) had been restricted by the European Medicine Agency.

Obviously, having had three courses of Lemtrada, I was concerned.

I read further.

22,000 of us have had the treatment. 39 strokes have been reported, often within hours of treatment. There are many other statistics I can’t make head nor tale of, as they are written up in medical lingo. In my experience, I had a horrendous flood of weakness after the first administration, then nothing. Just the usual tedium of being hooked up to a bag on a stick for several hours.

I was contacted by various people, worried that I hadn’t heard the news and I would drop dead fairly soon.

I didn’t die, but discovered that the overall risk of stroke after (Lemtrada) may not be statistically greater than stroke in the untreated multiple sclerosis population.’ When I decided to take Lemtrada, I knew the risk of Grave’s disease – which I had – leaving endocrinologists flummoxed as Lemtrada-induced Grave’s was a whole new ‘illness’.

So, I packed on weight. Gah. But, in the grand scheme of things, I would rather be fat (which I am) and happy than skinny and immobile.  I took the risk and it didn’t work out. It happens.

The temporary guidance advises that Lemtrada is only used on new patients after they have previously tried two other Disease Modifying Therapies. That just doesn’t happen with Lemtrada – it is a first line defence, for those of us who experience  a rapidly-cycling form of the illness. By the time a newly-diagnosed person has gone through two other treatments, they are no doubt not eligible for Lemtrada.

Within this whole confusing scenario, I wish the EMA had reached out and asked some us how Lemtrada had worked. But apparently their guidelines have not mentioned patient input.

So 22,000 of us have no voice.

This is completely unacceptable. Any form of medical restriction must involve the patients who have already taken the drug? Surely this is the first and foremost consideration?

It’s an oft-used phrase, ‘Nothing About Us, Without Us’,but when it comes to halting MS, we should be consulted.

Why wouldn’t we be?

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Less Can Sometimes Mean A Whole Lot More

I lived with a millionaire for four years.

I know, weird, huh?

Shortly before that, I was a cash-strapped au-pair in Austria. On pay-day (£35 a week), I schlepped to the supermarket on the main square and bought a single vanilla yoghurt.

It was the most delicious treat in the world and made the endless toddler-wrangling of the previous seven days all the more worthwhile.

When I was living with my new partner, I went to the same supermarket and bought five and ate them all in one go.

They were awful. The taste had gone. When I could have as many as I wanted, I didn’t want them and that unique taste which made them so irresistible had died.

Fast-forward a few years and I’ve pretty much been cash-strapped for the last two decades. Unexpected bills, a brutal divorce, a rapidly-growing child, school trips and all the other weird and wonderful paraphernalia of bringing up a child without passing on the money worries to him took its toll. But we got through it, trimming bits here and there, never making him feel he was different from his friends.

The Teenager would often come home from school and find me giving a new lick of paint to my most recent Gumtree find, or extolling the virtues of an empty pot of earth, which eventually grew into a chestnut tree. Until he went to high school, a lot of his clothes came from charity shops, as did most of his books. Despite the roller-coaster of financial ups and downs, we always just about managed to get through.

Then MS hit and the reality of losing my job and taking on alternative work at a much-reduced wage was tricky. I realised I was never going to earn a decent income, so I ploughed this anxiety into studying instead and it’s been the making of me.

There’s nothing more heartbreaking than your teenager asking you if we were ‘poor’.

We weren’t. Poverty is relative. He always had what he needed, perhaps second-hand, but he had it nonetheless. Technically we were disadvantaged and according to statistics, living close to the poverty line, but he did not need to grow up with that stigma.

Now The Teenager is forging his own life at University, I can fully appreciate the fantastic house we have created – our plant pots may come from a skip, but they produce a wondrous ambience. Our garden table and chairs are from Gumtree and were nothing a quick wash didn’t solve. Most of our furniture is second-hand, but lovingly-chosen and restored, the rest is donated.

Living with less – financially and health-wise – really made me wake up and appreciate every single thing I have. I’m not denying it was difficult but when I welcome The Teenager back home on vacation, I feel proud that we have made such a cosy and warm environment. The love and care that has been put into our house speaks volumes and I always want him to feel he has a safe space to come home to.

Looking back on my ‘Five Yoghurt Scenario’, it really did teach me many valuable lessons – you can’t take it with you, love is priceless and be careful what you wish for.

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Aw, No, Not Again?

My three worst MS symptoms are fatigue, nerve pain and brain fog, in no particular order.

To a lot of people, this sounds fairly manageable; we all get tired, a bit fuzzy in the old brain and we all have aching legs and arms? Yes, but, I’m only telling you the three worst symptoms, and there’s plenty more.

Anyway, I like to think I’m quite savvy with my MS comings and goings, yet it never, ever fails to surprise me.

Long story short, the MS fatigue is back with a vengeance and it means serious business. On Sunday, I felt so tired, I actually wanted to throw up. I flung myself on the sofa and was dead to the world for two hours. On Monday, I called in sick to work and went back to bed. Twice.

I went to work today (I have to, bills), navigated the terrain really well and luckily we finished early. My lovely boss even walked up the road and payed a cheque in for me while I sat on the door step of the house we are working at, feeling quite useful as I watched out for parking wardens.

Back home, I got out of the works van, stood on the ground, then my left leg gave way and I just collapsed. Bit embarrassing, extremely painful, hope the neighbours didn’t see.

So I have a flare up and it’s a bad one. I haven’t been like this for months. Every part of me is saying, ‘breathe, take it easy, it’s fine’, but inside I’m fretting. I’ve already missed so much time off work and studying has been pared back to the absolute minimum.

Brain fog has ensured that for the last two weeks I’ve run out of stuff to watch on Netflix and Amazon and am looking forward to the next series of ‘Married at First Sight’. Anything is easier than picking up books.

I’m trying to look after myself though – the boss makes sure I get to shops for food, he’s understanding about the time off and he cheers me up no end when we’re sat in the van putting the world to rights, as builders do. He even bought me a burrito today and expressed surprise when I swooped in on his leftovers, ‘nom, nom, first cooked food I’ve had in days‘.

I know this will pass, it’s just that awful sinking feeling when you know you’ve got to ride out the latest setback. I’ve instigated Code Red, the Ten Minute Tomato Rule – try ten minutes of everything. So laundry is in machine. Cat is fed (she’s on a Whiskas strike and will only accept Sheba – it’s a battle of attrition). I vacuum for one minute every other day and take nine minutes out.

It will all be fine. In the end.

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