Hello World

I don’t get out much.

Truth be told, I don’t get out much at all.

So, to be part of a regenerated writing group has been brilliant and so far, I’ve managed three monthly meetings out of three. Yay!

Fair play, it takes a lot of planning. I worked all weekend and took the day of the meeting off. I’ve been whacked over the head by my old nemesis MS fatigue recently, so I woke up, watched the news and fell asleep. Twice.

Wading through treacle is an understatement. There are simply no words to describe the skull-crushing, soul-sapping fatigue of MS and it doesn’t seem to get any easier.

Is it the invisibility? The difficulty in explaining? Or just that awful, horrendous feeling that most people with MS will be familiar with? The one that makes you want to cry with frustration. Who knew tiredness could actually be a painful ache?

So it’s all the more important that I get out into the world, tempting though it is to stay hunkered down in my sofa. Living on my own, perhaps even more so.

And here’s the truth:

MS is bad enough. But living with MS and Complex PTSD is a double whammy, something I had to admit to in my PIP form. Many of us do, and it’s something I’ve touched lightly upon in my past blogs.

Weirdly though, knowing what I’m up against has made me stronger and more willing to fight, after wondering why I feel so bad when I should be feeling better. I have a wonderful life, for which I am eternally grateful. The Teenager is thriving, despite the terrible knock-backs he’s had to cope with, and that to me is more important than anything.

I only have to look around our cosy little cottage to smile; The Teenager’s bedroom ready for whenever he wants to crash here, the cat ready to greet him, the continuity of it all is a wonderful thing.

MS has made me face up to challenges and Complex PTSD is one of them. It can happen to any of us, at any time, but if the effects are suppressed, the fallout can be huge. Add MS into the equation, and it’s asking for trouble.

I’ve messed up, trusted the wrong people with the right information. I’ve made a fool of myself and have paid the price.

True friends are hard to come by. The ones who ask how they can help are the ones I cherish the most.

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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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Growing Old Disgracefully

I met with my fabulous MS nurse last week for my six month review.

I recounted my most recent symptoms (I keep a log book, MS brain).

After I’d read out the last one, we both looked at each other and said, ‘Hmm, age, or MS?’

It’s true – it’s becoming far trickier to work out which is which. Balance, fatigue, brain, all of it. I mean, I’m not ancient (cough, 45), but life does have a funny way of creeping up on you when you least expect it.

At Christmas, The Teenager mentioned he’d be twenty years old in August and it took me aback. Seriously? I quickly worked out the dates, and he was right of course. I just never figured my son would be … 20. Just as I never expected to say I had been diagnosed with MS for seven years. A bit surreal.

Not only that, as we’ve debated, what on earth will I call him? The Twenty-ger?

In some ways, I now think I’m ‘settling’ in to MS. It is what it is, if this it what it is. And whether it’s age or various busted neuro-pathways, it’s all the same – some sort of loss.

What I should be concentrating on is what I can do, not what I struggle with. So, I’m trying to come up with a list of things that encompass a more positive approach:

  • I’ve had an epic cold since November that only now shows vague signs of finally leaving. Rather than lament my neglected writing, I’ve been reading books to prove I’m still, just, studying.
  • Downside to that is I’m totally mired in Victorian times, but it’s quite comforting, all the carriages and fainting spells, horrid asylum episodes to one side.
  • I’ve sorted through my wardrobe, passing on clothes, buying some others in the Christmas sales.
  • I’ve dusted off the Nutri-Blast.
  • I’ve analysed the two new wrinkles that appeared overnight on the 2nd of January, initially dismissing them as ‘pillow-face’ creases. Nope, they’re here to stay Two days of anguish followed by, oh well.
  • Should I get a shopping trolley?
  • I’m four and three-quarters years away from a Saga holiday.
  • My lovely friend, who is 57, has found love on a dating site. Hope?
  • Our house is incredibly sorted, as I look for any excuse rather than study. Even my cutlery drawer is gleaming.
  • The little cutting I took all the way in the car from Geneva in March is thriving.

So all in all, a good result for January. The Teenager (I can still call him that for a while) is gaining confidence after a blip, I’m getting better, the cat is recovering from The Teenager’s procession of friends over Christmas and all is well.

What could possibly go wrong?

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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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