Jun 17 2020
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Daily Life

Rewinding The Disability Clock?

At the beginning of Lockdown in March, once my sheer horror and fear of it had subsided somewhat, I was quite hopeful, positive even.

We were all in this together and the whole world was suddenly available at the touch of a laptop key. Everyone I had ever tried to explain the feeling of being ‘stuck at home’ to – due to MS and the treatment I had for it – now knew what I was talking about.

Excellent, so far so good. Progress?

And so it continued – local groups sprang up, offering much-needed help and support. The TV, internet and newspapers assured us we were Never Alone and  I truly hoped disability rights and awareness would finally be advanced by decades, now we were all in the same boat, unable to access even the most basic services.

Now we are in June though, and I’m increasingly anxious. I’ve been fortunate to only work with one other person in a wide open space throughout this time, as well as having my University student son move back home for the duration.

However, for the last two weeks there has been a subtle but noticeable shift.

Unable to access supermarket shopping slots when I needed them the most, I’ve been queuing, waiting and working up the courage to face my MS nemesis. Before the pandemic, shopping in real life was a total no-go area for me, but now it is a necessity.

The first problem are the queues; I simply cannot queue without a walking stick or leaning on something. The second problem is the weather. I can’t deal with the heat, or Uhthoff phenomenon. Once in the shop, I’m pushed forward by the people behind me who probably wonder why I can’t decide what to buy. They jingle their coins in their pockets, sigh loudly and shift from foot to foot in an exaggerated fashion. Or they just brush past me, muttering vile insults under their breath.

My hands tremble, I lose my balance (impossible to use a walking stick and carry a basket simultaneously). Once at the queue for the checkout, it’s the same. We are of course rushed through after waiting in line and I drop most of the shopping I’m buying. I try to explain, but they’re busy and the queue behind me is growing as is the animosity.

Two weeks ago I had to ‘prove’ my disability to a man outside a supermarket, who was in charge of the queue. He had a high-vis jacket and a fat book of rules. After a loud, public conversation, and showing my MS Society card which states I have MS, plus my son’s NHS staff card, I was grudgingly allowed into the shop. The same thing happened today – I was harangued by an elderly gentleman who wondered why I was being too slow through the shop’s newly-introduced one-way system.

I can’t do it.

In many ways, I feel more disabled now than ever and I wonder why we are not being heard in amongst the conflicted messages from government . Casting my mind back to my diagnosis in 2012, I had the same fears, and without knowing it, I could kind of blend in, just about. Now, that’s impossible. My anxiety levels are rising and everyday things I once took for granted, with a huge MS exception, are almost out my reach.

So I stay in my house and study and chat to my son. My boss picks me up and takes me home again. My world is very small, despite my large Zoom window.

Once it was my MS treatment which shoved me onto the sofa, now it’s the world.

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May 07 2020
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Daily Life

Hunkering Down In Lockdown

I was off work for a week during the dramatic escalation of Coronavirus here in the UK and had felt quite cocooned, my usual MS problems combined with a trapped nerve I was receiving treatment for having kept me at home.

Going back to work was unreal: it was the same building site, luckily secluded with only one other person working, but everything was different. I looked around, remembering the Good Old Days when my main concern was picking up milk on the way home. It was utterly impossible to take in, that the world had changed so much and in such an unexpected way. Driving back through an emptied capital city just reinforced this. Life would never be the same again.

I cried. I cried on site and I cried when I got home. Watching the news and seeing country after country across the world close down was utterly beyond comprehension.

Fast forward a couple more weeks and my son is now home from University, still studying online and now working as a housekeeper with the NHS. He makes his bed in the morning and cooks for himself but I am banished from our living room when he works out, huffing and puffing with my weights and kettle-bell that served just fine as a doorstop for many years.

There is much talk about the ‘new normals’ – something all of us with MS have had to adapt to over the years, regardless. It is heartening to see so much online and, wow, accessible. For once, the world is perhaps coming to us. So this is a very unreal situation for those of us who are quite at home with being, well, at home, because we have to.

For me, I have strategies in place. Concentrate on small pleasures, make a list, watch the clouds go by. Now we are all doing the same thing, it’s quite wonderful. The media is full of ideas, hints, tips, opinion columns, all aimed at Me. Us. Suddenly, museums are open, there are online lectures, I can travel the world, dip in and out of talks with the cream of authors. In a way, it’s amazing.

Yet, can this last? If you are on furlough, are worried about your job or have you always been at home, what happens next? Will these wondrous interventions such as tele-medecine continue? What we thought could take years, has taken place in a matter of weeks.

So, it looks good for us? Or does it? The benefits system has yet to catch up. A lot of us cannot access carers. There are no groups, no access to the work we once took pride in. Where do we figure in this seismic change?

We cannot be forgotten during this. I know there are a huge amount of fantastic interventions in place, but there are always people behind the figures and we cannot forget this. I can’t think of a time that is more pressing for an understanding of MS, bar my dad being diagnosed back in the 70’s.

MS charities may go under but we need them more than ever. Engage, if you can, take part in discussions with them and if you have the energy, fundraise. They need us as much as we need them.

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Apr 02 2020
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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.

Mar 15 2020
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Daily Life

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?

Mar 08 2020
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Self-Isolation? Just Ask An MSer

Pre-MS, I could never imagine a day I did not scoop up my kid and take him out.

The very idea of being stuck at home was absolute anathema. I collected cut-outs from newspapers, leaflets and magazines with a zealous streak, not wanting him to miss out on anything.

Post-MS, it was a very different scenario; devoted rugby mums would collect him and bring him back brimming with mud, injuries and victories. My friend attended parents evenings and took copious notes on my behalf, which she then relayed to back to me.

Those were dark days.

When you can’t take your Teenager to the beach as you know you’ll be weak and miserable, with a massive dollop of heat intolerance is distressing beyond belief.

I waved him off, a smile on my face, but inside I was crumbling.

Eight years down the line since my diagnosis, and three courses of Alemtuzumab later, I am in an ok-ish place.

And now we have this virus, which we may, as people with MS, be a little more susceptible to. I say this gently, as we are not yet aware of the whole picture. What I do know is that to have an MRI, which I do yearly, may show more lesions, and this could be the year for another course of Alemtuzumab.

If this is the case, I cannot see it happening for me, as it would reduce my immunity to near zero. And that is ok. I’m still working, still studying, I’ll get through this blip.

But the one thing us MSers are brilliant at is self-isolating, after all, most of us have been doing it for years.

So, let’s turn the tables and give others the benefit of our experience?

  • Home shopping
  • Friends leave cake outside your door
  • Twitter
  • Netflix
  • Stay in touch, whatever way you can
  • Learn something new

I’m actually amazed that our Government hasn’t yet called upon our superior experience in this matter, but we live and learn?

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