Tag Archives: MS

The Teenager

MS crashed into our lives in 2011, just as The Teenager was starting High School.

Unusually for MS, it came without warning – just a huge, life-altering Big Bang over the course of a weekend when my entire body collapsed inside, my mind scattered in all directions and my very being imploded; I couldn’t walk, talk or function.

For better or worse, my son was with me, all through the endless search for answers, the waiting, the eventual diagnosis, an employment tribunal, three courses of Alemtuzumab and their brutal after-effects, ongoing treatment and figuring his own way through life.

It was a learning curve for both of us, navigating entirely new scenarios, but we hadn’t envisaged this.

I went downhill, both in health and my mental state. One evening, I took him to a neighbour as I couldn’t cope. That was the day I decided to pick myself up and do something different and fight my corner after over a year of work-place bullying – to deal with a potential court case on top of Alemtuzumab was daunting.

We did it and I took him to Manhattan with the tiny pay-out, eager to show him where I had lived for a couple of years to make up for, well, everything; to show him that I had experienced a life he too could have – the possibility of travel and adventure.

He had missed out on having his mum on the rugby sidelines, the parents evenings when a friend would go in my place, the trips to the seaside I couldn’t take him to, but I was always there to hear his trials and tribulations, even when I was struggling to cut vegetables or clean the house. We managed. I slept as much as I could when he wasn’t there, attuned to his key in the lock, sitting up quickly and hiding the blanket.

He’s been a huge part of my blog, with his consent, and even now as he approaches 21 this week, he’s proud. Proud of all we have achieved together, our little family of 2 – sure, we’ve had our low points and arguments, slamming the fridge, the front door, the usual teenager nightmares. Yet, without him, there would be no blog, no book and I certainly wouldn’t be taking a PhD.

After that low point, I had two choices.

Give in and accept whatever came my way or stand up and fight back. As with so many health scenarios, we fought back. He came to protest marches, meetings, film-making, speaking on camera about his life as a child of someone with MS and many, many other things.

This week, The Teenager turns 21, a real milestone for parents.

I’m incredibly proud of him and how he has grown into a confidant, articulate and compassionate adult. He stepped up to the pandemic, moving back from University in March and taking a job at the biggest hospital in Wales for three months, before moving on to our building sites.

Now he is back in his University town, ready to celebrate his birthday, and I will take time out to think about how lucky I am to have a son like him.

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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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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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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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What Is Grief?

I’ve written about the MS Grieving Process in my blog; our health is compromised, our lives change and we need the chance to mourn.

It’s a terrible, horrendous time more often than not, especially as we’re usually fairly young when we’re diagnosed.

I thought I knew how grief felt – because of MS, I had already lost my dad at a very young age to a rapidly evolving form of MS back in the 1970’s and then my partner and my job disappeared when I was diagnosed.

Now I know, I knew nothing about grief

The grief of losing a sibling is beyond anything I have ever experienced.

My brother died two weeks ago and we are heartbroken.

In my head, I race through memories, his quirks and his mannerisms. I can conjure him up in the blink of an eye. I can hear him speak. He was so utterly vibrant, it’s difficult to imagine him inanimate.

We spent 46 years together. And now, he is gone. The realisation that he no longer walks on this earth is bizarre.

Grief is cruel, breathtaking and vicious.

We are all living in a new world now, one in which my brother does not exist. And that blows my mind. His Celebration is two weeks away and he will be buried in a woodland near to where he found true happiness.

I last saw him in July – he’d driven up from Down South and we had a fantastic catch up. He was full of plans for the future, asking lots of questions about starting a blog where he could share everything he had discovered over the years. He had helped so many people through his quest for enlightenment.

I’m in the shock stage. I know he is gone, but am finding it hard to accept.

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