Tag Archives: MS

Unpredictably Certain

There is one thing I am sure of.

MS can and does leap out at any time, ruining plans, stopping me from working, pushing me back into bed or tripping me up, amongst many other scenarios.

Its unpredictability is an absolute given.

I was thinking about this today when I was in work, leaning (swaying) on a long-handled brush, surveying our latest building project.

I was wobbly on my feet, and as The Boss had slept in, I was also Costa-coffee-less. It was one of those days where nothing went right and we all got an early pass home.

I’m fortunate that The Boss is my best friend, and understands the ebbs and flows of MS like no one else; I work when I can, for as long as I’m able to. I can excuse myself, take time out and work at my own pace, depending upon MS’s unpredictability. I could never find a job to match it.

My work not only gives me a movable-structure, it also ensures I’m still able to pay my bills, get out into the world and feel an immense amount of satisfaction when I get home and know that I’m keeping my whole show on the road, despite everything.

It’s the same with my studies. So many people are surprised when I tell them I’m taking a PhD. I try to explain that it provides a huge amount of structure in a wholly uncertain world. I need it. It’s a framework of sorts. I’ve worked out what to read, and I read and make simple notes as and when I can. Five minutes here, an hour there. It might take me a few more years than I had initially planned, but I will get there as I have a mighty weapon.

Thanks to Disability Student Allowance, I have access to an entire team of helpers – tech support, study support, note-takers and many more people behind the scenes. When I graduate, my ‘thank-you’ speech will take a long time.

Back to that brush; nothing is certain in life and MS magnifies that. But by factoring in some certainties, I feel more tethered to all the things that are important and keep me grounded. This begins with a tight circle of family and friends and then extends outwards, encompassing studies, goals and dreams.

Without this structure, MS would win and I would be at its beck and call. It would be so easy to succumb to and its something I fight against every day. I pay for it though and I wonder how long I can push myself, yet in the grand scheme of things, don’t we all think this?

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Smashing It?

I have MS, I work as a builder and I am studying for a PhD.

For a lot of people the above sentence makes zero sense.

  • MS?
  • Female builder?
  • Doctorate student?

To be fair, if you’d said that to me seven years ago, I’d feel exactly the same.

Delusional?

It’s a bit easier if you know that I was diagnosed with MS when I was 38, was sacked from my job for having MS, ended up working for my friend’s building company (which I helped him set up years before) and decided to stretch myself academically.

It was either that or go under. I’m not joking, I was in a bad place. My sofa seemed preferable. It was molded to my shape. It supported me through the worst of times and I was sinking fast.

After my two-year pity-party-for-one, I finally woke up. I had accepted the most invasive MS drug. I signed up for working as a builder and I put my name to a Master’s at University. Which has now led to Doctorate studies.

It was a crash course of sorts; juggling a pregnant-woman diet in readiness for the MS treatment, getting up to speed with foundation concrete depths and researching narrative styles. It was nothing if not interesting. And varied.

So I juggle these three personas and luckily I have a lot of support. I may still turn heads as the fat, female builder in warehouses early in the day, but I know what I’m doing.

MS dominates my working day, so I start as early as the Boss can cope with (if it was my way, it’d be 5am), and then crash when I get home. I no longer cope with heavy loads but I’m experienced and (I think) it’s valued on our work sites.

As for academia, it’s a case of as and when. I’ve learnt to take a book and notepad to work at all times. It’s amazing what five minutes here and there can add.

If I look back to when I was 38, my goals were to become a social worker and meet a nice man called Geoffrey, who had a beard and read the Guardian. He probably ate croissants and made his own pizza dough.

Illness didn’t figure – why would it? I imagined breakfasts at locally-sourced-food cafes, long days spent reading newspapers and French novels in translation plus the occasional city break in Europe. A bit Bridget Jones.

Now, that’s all gone. I’m a happy builder, more than confidant to deal with the enduring patriarchy and smash misconceptions, I have MS, and I’m dealing with it. I may not have Geoffrey, but I have something indefinable.

MS – it can change your life, in more ways than one.

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End Of Year Report …

What.

A.

Year.

Worldwide, politics-wide,

And of course, personally.

So, time to take a stumbling step back and reflect upon what worked, what didn’t and what I’m hoping for in 2019.

Good things:

  • The Teenager – like any parent, watching your child sprout wings and take flight is incredible. He’s had a lot of ups and downs, but he’s ending the year on a high note. Plus, he now understands why I ask him to open the window after a shower. Progress.
  • Friends – what can I say? Without you guys I would be nothing.
  • Writing – this year, I became a member of the National Union of Journalists, inspired by an (unsuccessful) interview for a short-course teaching job at a local University. I’d failed to see myself as a ‘writer’, but with great feedback from one of the interviewers a couple of days afterwards, I am now tentatively agreeing, that yes, I have a lot to say through many different channels, and why not consider myself a professional writer? Writing about life with MS is so important and I’ll do so until I no longer can.
  • The Hernia (Phyllis) – now gone after a quick operation, thankfully, although the stitches are taking a crazy amount of time to heal. I still walk like a robot.
  • Student Finance Wales – after applying during the Summer, I was approved in December for my Post-grad Student Loan. It took over half a year, but here I am, an Academic Research Associate and PhD student, aiming to highlight MS and all its complexities.
  • PIP – I had a huge amount of support moving from DLA to PIP, but I ended up with a pitiful award until a fantastic blog-reader of mine intervened and put me in touch with my local MP. Long story short, my case was heard and I was given the right amount after a truly epic battle. Note to DWP – MS is still incurable.
  • Saxaphone – long-term readers might remember I was thinking about taking up the sax. Hmm. I put it to one side and then last week I was in a cafe and saw two adverts for teachers. One to think about.

Not so good things:

  • Paleo/Keto/Fasting – I’ve tried all three, and am still not eating pasta, rice, bread, potatoes, etc. To no avail!! Same weight, same old me. However, I like the energy this eating plan gives me, so I’ll continue, but will still be annoyed that it’s not working where I want it most. Gah.
  • Singledom – yep, still single. I saw a tweet the other day, along the lines of, ‘Ok, so that’s it, I’ve come to terms with it, I can never imagine another first date, the awkwardness, etc.’. And I found myself agreeing. So that’s that then.
  • The outside world – having battles with the DWP and SFW has taken its toll. I just don’t go out that much at all. Chuck in a big dollop of MS fatigue and I’m done. The world passes me by.
  • Loved ones – are struggling. It’s raw, painful and all too real. I think when you lose a parent at such a young age, you become hyper-sensitive to death and dying and it never leaves you.
  • Mud – no matter how MS and the post-op hernia limits me, I seem to be surrounded by the stuff.

Hopes for 2019:

  • The Teenager – will become more happy in his own skin and realise his worth.
  • Me – I will accept the size I am now and embrace it, rather than saying, ‘sorry I’m so –  well – round, and chunky.’
  • Studies – I will keep studying/writing/researching my PhD. I’m struggling to fit  it in around work and MS, but it keeps me going, in so many ways.
  • Life – I would like to come to terms with things I cannot change. I also hope that my yearly MRI throws up pretty patterns and nothing else.
  • Other things – I’d like to learn how to re-pot plant cuttings.
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Christmas, Present

I’ve finally finished work for the Christmas break.

Me and The Teenager have our schedules worked out.

His consists of an ironic Christmas jumper, pints with the lads and a catch up with old school friends.

Mine is a stack of books to read, chatting to the cat and not moving far from the sofa.

The Teenager asked me once why we don’t have a Christmas, ‘like you see on the telly, you know, the long wooden table , thousands of people around it all smiling, with snow falling outside the window.’

I’m sure, somewhere, those kind of Christmases exist, but for most of us, we muddle through and make the best of things.

It’s the one day of the year we know exactly where we were and what we were doing in years/decades gone by, which can certainly add a bitter-sweet twist to the day.

On the plus side, we celebrate the achievements of our children (The Teenager survived a nasty attack, he’s studying hard and appears to have an astonishing amount of emotional intelligence) and on the downside we remember family members who were so vibrant last year and who are now struggling.

And of course, the family and friends who are no longer with us. It’s hard to juggle all the emotions and still stay, well, present.

It’s been a tough year for me, in so many ways; fights with the Department of Work and Pensions, fights with Student Finance Wales. Dredging up thousands of words about how my life is difficult now I have MS (surprise!).

I’m a tough cookie, until I’m not, and this year has pushed me to the absolute limit. I’ve won battles and lost others. I’ve struggled to explain just how awful things have been. I’ve wished that people could ask how they might help rather than judging, however well intentioned.

Mental health is much more in the open arena now and I’m thankful for that. However, sometimes I feel I have more support during a physical relapse than an emotional crisis.

This Christmas, I would like to think that we could reach out to our friends and family, ask if they need support, and give it. It often doesn’t take much – a kindly word, a quiet conversation, the feeling that you can be in someone’s corner.

My Christmas, this year, is tinged with sadness; I’ve had to give up two activities which kept me grounded and in touch with the wider world.

However, Me and The Teenager are both looking forward to a brighter 2019, and for good reason. Opportunities are opening up for us and hopefully, with some support, we can catch hold of them and turn them in to reality.

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So This Is Christmas …

We are recovering – The Teenager from being attacked, my much lesser incident of a twisted ankle.

Damned foot-drop.

I remember lying at the back of the works van, having fallen and thumped to the ground, thinking, ‘this is just not happening’. But it did.

Do you remember those falls you had as a kid? That sickening thud of the pavement rushing to meet your head? That’s what foot-drop is like. Of course, it’s ‘curable’, if you concentrate on every single step you take and will your feet to rise to the occasion.

But who has time for that? So I fall. I trip. I can trip over dust, cables, pavements.

And it brings me up short, and maybe not in the way you might think.

Our dad died forty years ago this year from complications arising from his MS; I am one of four siblings he left behind.

When he died in 1978, nothing was available to alleviate his condition; he was sent home after brutal tests, with only a walking stick and a diagnosis of ‘crippling paralysis’, now known as Primary Progressive MS.

After eight years, he died at the age of 35, a husk of the brilliant man and scholar he once was.

I am lucky. I was born into an age of MRI’s, MS nurses, disease-modifying therapies, which is why I didn’t hesitate to accept the one that would allow me to be well enough to be around long enough to see The Teenager in to University.

So when I come up against seemingly impossible situations, such as The Teenager calling me in work saying, ‘Don’t worry, but …’, I am perhaps more sanguine than most parents.

He is alive, well, and healthy. It is him who called me, not a consultant, a police officer or an anonymous University staff member. I was only grateful that I could speak directly to him, despite his trauma.

Christmas is always a tough time for families. The Teenager will be home in a week, and the washing machine will be pushed to its limit. The cat will be giddy with delight and I will be over the moon to have him back in our little cottage.

However, gratitude is the most important emotion; gratitude that I can greet him at the door, welcome him in and be the same person (plus limp) he last saw at University. His bed is ready with fresh linen, the fridge will be stocked and we’ll have a great catch up.

It’s precious. I’ll never lose sight of what we could have lost.

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