Tag Archives: MS

Apr 20 2021
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Emotions

Endings and Beginnings

The last 20 months have been the hardest and most painful in my life.

Losing first my brother then my mum within 18 months, and with a global pandemic rearing its ugly head in between has been challenging on every single level. At times it felt as if my entire world had brutally shifted on its axis.

Life changed beyond all recognition. I made the decision to come off all my MS symptom medication (I took advice from my wonderful neurologist, but decided to go cold turkey – I was in such an enormous amount of pain, what was a little more?)

Just as I was thinking about reconnecting with the world last March, it started to shut down. It seemed cruel and ironically similar to the first years of living with MS; an inaccessible world, yet this time everyone was going through the same emotions and fears, shut at home with no idea of when we could all be together again and live life as it was meant to be lived.

We all felt disconnected and yet in ways more connected than ever. My son moved back home for six months, continuing his university studies and starting work for the NHS. We bonded in a whole new way, living as two adults in a small cottage, keeping each other buoyed up as the pandemic played out. We adapted, shared our frustrations, found new ways to get through each day.

And that’s what life came down to in the end, putting one foot in front of the other, and if we made it to the end of the day having done nothing else than get through it, that was an accomplishment in itself. We grew and learned together and looking back on it, we have come through it stronger as our little team of two.

There is no easy way to deal with grief, but taking joy in small moments helps – snowdrops blossoming, an unexpected gift dropping through the letterbox, sitting outside with a coffee watching the clouds pass.

There are tendrils of new beginnings; picking up work and studies again, reconnecting with family and friends on a deeper level, the start of a new relationship.

Right now, I am still in the each day at a time stage, but as each day passes, it gets a little easier.

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Apr 03 2021
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Blogging

My MS Story: Finding a Way Back to Me

This is guest blog post by Jen DeTracey. She runs the wonderful blog, Women Thriving with MS  – well worth checking out!

It’s been over 10 years since I was diagnosed with MS.

Ironically, on the anniversary, I didn’t think about it. I realized a few days later it had passed unnoticed. This was a huge celebration for me.

I realized MS is just a part of me, not who I am. I learned this many years ago while in therapy to deal head-on with my anger and grief. What showed up most for me was FEAR.

At age 44, I was at the peak of my career as a business consultant when MS showed up for a curtain call. After four days in the hospital, three days of steroid drip, I was sent home. Left hand, leg, and mouth were now in working order but I was slammed with fatigue.

I started asking myself painful questions. Who am I now? What is important to me now? Will I ever be able to work again? Truthfully, I felt like I was dying. Logically, I knew I wasn’t but the grief was all-consuming. Part of me wanted to die.

I knew I needed to shift my focus to something I’d always wanted to do but hadn’t. My heart-centered goal was to self-publish a book for small business owners.

This goal became my anchor. It took twice as long as I had projected due to a massive vertigo relapse, but I did it. It was a very special day when I hosted my book opening at a local café. Friends and colleagues joined me to celebrate. Doing this project saved me.

So many people with MS have to give up their careers. I thought that would be me, too. I decided to continue working just part-time. I also did a lot of soul-searching and attended silent retreats. This gave me clarity on how I could serve others.

Two years ago, I started a private Facebook group, Twitter account, and YouTube Channel — Women Thriving with MS. I had a vision at one of my silent retreats to create an online community for women with MS who no longer work. Since then, I’ve hosted virtual gatherings and met so many amazing women.

Figuring out what is most important, then making it happen while living with MS and fatigue has been healing.

Twitter
@WomenThrivingMS
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Aug 18 2020
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The Teenager

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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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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