Category Archives: Daily Life

We’ll Do What We Do Best

If there’s one thing I know about the MS community, is that when the chips are down, we all pull together.

And never more so than now.

If I’m honest, it’s strange to be doling out advice to normally-healthy people stuck at home, climbing the walls.

Yup, I’m the one now doing the ‘sad face tilt’, murmuring gentle ‘hmm hmm’s’ and suggesting ways to keep engaged and less isolated. Except now, it’s all of us in the same boat, an entire country, a huge swathe of the world.

It’s heartening to see a veritable outpouring of resources previously inaccessible to us – working and studying from home, celebrities bringing us everything from cello lessons to live work-outs and dreadful song compilations – Gal Gadot, I’m looking at you.

New programmes devised and on our telly within days. Tips and hints for staying at home are abundant, a flood of all the resources we have campaigned for over the years. Can’t get to the theatre or ballet? It’ll come to you. Same for the museums of the world, the cinema, online learning where you can pick up wood-whittling amongst many other things. Newspapers are now full of great ideas for lessening the isolation, and not before time.

Are we all disabled now, in some way?

Opinion columns are full of shocked and stunned op-ed writers aghast at being without a cleaner, a playgroup, a holiday, their Boden order. Ok. I feel your pain, although somewhat ironically.

Back to MS, and it’s awe-inspiring to see how our community has come together to keep us informed. From the MS Society, MS Trust and Shift-MS, to the Bart’s Blog, we are kept right up to date. And this is despite a truly dreadful time for charities.

I had my shielding letter on Friday, followed by a letter from my MS team yesterday. I feel cared for and protected. However, my landlord may not feel the same way, which is why I have to continue to work, with only one other person, the long-suffering Boss, as long as I can.

It’s not ideal. I miss my son terribly, and my partner. Me and The Boss are looking at each other and thinking, ‘really?’ Are we the two people we’re going to see for the next few months? I feel more sorry for him, to be honest.

I listen to his Sky TV Planner list, he listens to me wittering on about medical humanities. He wants a Baby Yoda for his birthday and I don’t quite know what to say, always aware that we are in this for the long haul, Baby Yoda or not.

Pandemics and Other MS Problems

You’ve all seen the news.

If you’re anything like me, you’ve been glued to it, waiting for specific advice for those of us who live with compromised immune systems.

And just like me, you’re probably disappointed.

Instead, thankfully, we have our own trusted sources to rely upon during this incredibly confusing time – MS Trust, MS Society and many others have been quick to keep us updated.

If you are finding it difficult to get out and buy food, please don’t panic. If you can, ask friends and family and if not, there has been an amazing lift in community measures to make sure no one is left behind – look into the NextDoor app and your local Facebook pages.

In the midst of all the terrible news, there are, at this moment, three good things to take away:

  • First, when this is over, and you ask your Boss if you can work from home, they’ll have a much harder time saying no. If we can mobilise half a nation to work from home within a week, why has this not happened before? After all, ‘reasonable adjustments’ are enshrined in law?
  • Second, self-isolation is second nature to most of us with MS and we have honed and perfected our techniques over the years since our diagnosis. Let’s share our lessons with others. I know it’s tempting to yell, ‘it’s not Christmas or a snow break!’ but be kind. They know no different. We can teach them.
  • The final point, although more intangible, may be that other people might realise just how difficult it is to be at home, day after day, week after week. We weren’t moaning unnecessarily after all!

Wow.

This is unprecedented – we have no rules to follow, but let’s be kind, look out for one another and stick together.

What is the alternative?

Overcoming Obstacles

Shockingly, I haven’t had a bath for over nine years.

Where once I liked nothing more than wallowing in boiling hot, heavily-scented water with a good book to hand, MS heat intolerance has rendered this a sepia-tinted memory.

The only problem is, my shower is over this bath, a pre-MS relic. It is also very curved, very high to step in to and completely impractical. My feet are never quite flat in the bath, I’ve fallen out a good few times, once cracking my head on the toilet (very unglam) and now I live alone, taking a shower each day is a persistent worry. Despite my friend installing a couple of grab rails, it’s an obstacle course.

I am my own worst enemy, in that I rarely ask for help. Instead, I muddle along, accommodating way beyond what is reasonable. Desperation drove me to apply for a Council Disabled Facilities Grant and I didn’t hold out much hope. The plan was to take the bath out and replace with a large walk-in shower, something my paltry income would never extend to.

A wonderful Occupational Therapist visited me at home, chatted through everything with me, had a good look at the offending bath and agreed we had A Problem. The relief was intense. She filled in forms for me, contacted my MS nurse and asked the Council to visit me for a Financial Review. This took place last week and I had every single piece of paperwork to hand, with the upshot being that I am poor enough to qualify for help.

I cannot describe the utter relief that something I am increasingly finding so difficult will now be made so easy. I think all of us constantly scan obstacles and work out how to make them easier – I took my kitchen door off its hinges when I walked into it too many times. I have a cordless vacuum after tripping over the cord far too often. I ignore dust, batch-cook when I have energy and live off re-heated meals when I don’t. I don’t work when I can’t and I do when I can. It’s all about being flexible.

I wish I had asked for help much sooner, but pride got in the way. Now, I can’t wait to not worry about having a shower. It sounds so simple?

If I have any advice, it would be, don’t wait until you put your health in danger as I did, ask. You may be knocked back but just keep asking.

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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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