Category Archives: Emotions

You’re On Your Own

What does it feel like to live on your own with MS and essentially be your own carer?

Luckily, we now have a vast array of information for carers of people with MS. There are carers groups, helplines, benefits.

Thank goodness things have improved immeasurably since my dad had MS back in the 1970’s.

But living on your own with MS is a whole different ball-game – you are the patient and the carer. Sure, we might see our neurologist and MS nurse once a year – the support they give is invaluable.

Yet look beyond those two appointments, and you discover a whole raft of worry, anxiety and fear. It’s almost like arguing with yourself: ‘you need to rest’, ‘Yeah, I know, but I need to go to work/sort out the laundry/write a shopping list.’ And, ‘whoops, there goes another coffee cup, who’s going to clean it up?’

Sometimes you can cope with the conflicting advice you get from yourself, and then other times it tips over; you’re too tired to make dinner, you fall out of the shower and lie on the floor for over an hour, you take yet another day off work and worry about your income. It is Just You.

It doesn’t help when you’re also too damn proud to ask for help. I’m fortunate in that I know I have that back-up should I need it, but it still makes day-to-day living hard at times. My long-suffering Boss sometimes takes me to pick up my prescriptions, drives me to the shops for food and is always on hand to fix a blown fuse or a broken washing machine. But back at home, when the door closes, I know I’m on my own.

It’s tempting to slide into another Pity-Party-For-One, and I always fight against it – I held one for two years after my diagnosis and I don’t want to revisit those dark times.

I wish there was more information about Living on Your Own with MS. Many of us do. We muddle through.

And of course, there’s an upside – I’m eternally grateful I was on my own when I fell out of the shower. The thought of being discovered clutching a bunch of cotton buds, naked save for a small towel brings me out in a cold sweat.

This is where social media comes to the fore – to send a little tweet out into the ether and have so many comforting replies is amazing.

We may live on our own, but are we still part of a bigger network?

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Grossly Unfair

I don’t need to be ‘fat-shamed’.

I do that myself, quite easily, every single day.

No-one was more shocked than me, with how much weight I packed on after starting medication for neuropathic pain, back in 2011.

Then the Grave’s Disease, oscillating between hyper and hypo with a string of meds to match.

Then the carb-fest I indulged in during family dramas.

So, yes, I admit it, I’m fat.

I agree it’s not a disability as such, but it’s certainly a side-effect of a disability, in my case, MS.

On top of everything I’m coping with, I’m astounded that some people have a problem with my weight. I’m mobile, I work, I go to University to study, I look after myself and need no external help.

It’s not easy finding nothing to wear in shops apart from lurid tops in garish colours. Or catching a glimpse of yourself in one of those long mirrors – the chubby face, the still-healing hernia, the ‘bigness’ of me, when inside I feel pretty small.

It’s weird – my MS is mostly invisible and I have to prove over and over again that I am in pain, that I could do with some kind words and help. Yet my weight, outwardly visible, is what people remark upon and feel free to make hurtful comments about.

Believe me, I know. And I also know that fat-shaming does not work.

Fat-shaming keeps you at home, exactly the same as MS. It keeps you out of view as much as possible. And it hurts, deeply.

When I stand on stage and talk to a crowd of people, I’m acutely aware I’m fat. But, I put that to one side and give my best. The people are there to hear me talk, not judge me on my dress size. I would like to think that what I have to say about MS is far more important than my weight.

I am not impacting our NHS or our social services with my weight,

I carry it all by myself.

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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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