Category Archives: Emotions

Never Rains But It Pours

It started innocently enough – my bargain Gumtree washing machine juddered and jumped around the kitchen floor with a full load and then died.

With one last gasp, it dropped its drum, then coughed some water out on to the floor.

My PhD student loan faced obstacle after obstacle and I was in danger of having my email access revoked for non-payment of fees.

The Cat decided she no longer liked Whiskas and a bumper pack of tender chunks lay dormant in the cupboard.

So far, so annoying.

Then that awful phone-call from The Teenager. I should have known; it was around 8.30 am, when few Uni students are awake.

He had been assaulted by a group of men after a night out.

What can you say?

I was numb. He had been to hospital, where they put his dislocated shoulder back into place. Two female students helped him and a homeless man bought him a bottle of water. He was bruised, upset and angry. The police interviewed him.

So far, so soul-destroying.

I went to see him last night. My overriding feeling is one of thankfulness that I am not in that group of parents who, instead of hearing from their child, have an anonymous police officer or surgeon on the phone.

He’s shaken up, bruised and shocked, as am I.

Driving back home in the vicious rain, my anger shook me to the core. It’s taken me 19 years to raise a fabulous child, through all the trials and tribulations, and yet a random group of people can flip that on its head, in an instant.

I collapsed into bed and got up for work four hours later.

As a random aside, foot-drop has been haunting me for a while and I thought I had the better of it, concentrating so hard on placing my feet where they should be. I had a narrow escape last week, tripping over a bit of dust and twisting my usually-weak right ankle.

This afternoon, at the end of a very long day in work, when I was at the back of the van, I saw it happen in slow motion. My left foot dropped, I regained my balance  (congratulated myself) and then foot-dropped a second time in a pile of mud.

I thudded to the ground, smashing my ankle and hands. Embarrassed, furious and scared.

I think/hope we have now had our run of bad luck. The Teenager will recover, older and wiser, sadly. We have new washing machine, ready for his Christmas break washing. My ankle will heal.

I’m hobbling around making our cottage Christmas-ready.

I’m still furious.

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This Is What An ‘Unskilled Care Job’ Looks Like

Since the Conservative Party Conference began, you will hear ‘care work’ written off as ‘unskilled’.

And, ‘how will we fill these unskilled care posts after Brexit?’

Time and time again, over and over, on every news channel.

Why do I believe it’s not an unskilled job? And why I am so angry with this term being bandied around?

Because I was a care-worker, I did that ‘unskilled’ work and it was the hardest job of my life.

Sure, I stepped on the ‘bottom rung’ in the Care Sector, with my ultimate plan being to train as a social worker. But I believed it was intrinsic to learn at grassroots, if I was ever going to become an effective manager.

So, here’s a little insight into this so-called ‘unskilled job’:

You are on a zero-hours contract with no time paid for travel between customers. So, you can work a 12 hour day and be paid for 4.

You have no idea what situation you will encounter at each job, whether it’s a 97 year old woman screaming at you to leave her alone, but it’s on your notes that you must shower and dress her, despite her bones being in danger of snapping. Or whether the next customer has severe dementia, is living in squalor and you have to step over dog mess in every area of the house.

We washed women dying of cancer, trying to give them a little dignity back. We changed pads on proud men, shying away from us through sheer embarrassment, all the while reassuring them that everything was ok.

We encountered hostile relatives, violence and rudeness. We were yelled at, shoved, pushed around and still had to pull on reserves of patience and kindness.

We came in at the end of life, mostly, with all its indignities, yet we bathed, administered medication, washed, dressed and fed people who needed us. We built relationships with no training. How do you learn to talk about death, sickness, infirmity and all the rest that we endured?

But we did. We forged friendships, saw some of the customers every day, chatted about this and that and learned what they liked and didn’t like. We sorted through their mounds of medication, diligently noting what they took and what they refused. Unskilled?

We saw death, uncaring relatives, abusive relatives, heart-wrenching loneliness. Every time we closed the door on a customer, a little part of us died. That fifteen minute ‘Med Call’ was the only human contact they had. Interesting. That fifteen minute call is also one of the most lucrative for the care company. But what can you do in that time?

Not only that, to work for fifteen minutes, earn perhaps, £2, then travel across peak traffic (unpaid travel time), maybe seven miles to your next call, and you can see the problem.

It’s called unskilled because it needs people living in poverty to apply.

Who else would put up with such conditions? And who else cares enough to organise seismic change in this rotten, cruel sector?

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Write On …

I’ve been in a bit of a tussle recently, and not only with Phyllis, the Ever-Expanding-Hernia.

My blog was born in October 2012, a dreadful time for me.

Not only was I coming to terms with a diagnosis of MS, my first Alemtuzumab treatment and a Teenager in High School, I was also being horrifically bullied in work.

I desperately needed an outlet and I had always, always wanted to write.

I reached out to the fantastic author M J Hyland (who had written a beautiful piece describing the darkness around learning to live with MS in an Observer ‘Review’ piece), and who, through many emails, urged me to find a way to get everything down, document it all.

I took her advice and my blog went live; I typed away every single day, posting blog after blog after blog.

My writing was simple, direct and to the point. I wrote about me, The Teenager and The Boss, who employed me as soon as I was sacked for having MS.

I blogged what I saw, what I experienced and what I was going through, warts and all. My aim was to show MS as it really was for me. As the only adult in a house, life with MS was frightening, terrible and daunting in equal measure.

Six years on, I’m still blogging, but in that time, and thanks to a huge amount of encouragement from you guys, I completed my Masters in Creative Writing. And The Teenager is in University.

For my Master’s dissertation, I wrote an angry piece about the realities of care work (having worked in that dismal sector) a brutal and unflinching novella laying bare the real-life experiences of ‘social care’.

Reader, I won that year’s Humanities Prize for Academic Excellence.

I took a break for a year or so. I uhhhhmed and ahhhed about taking it further. I liked my job – I enjoy it, and need the flexibility of working with my best friend, but something was nagging away.

Could I go further? The next step was a PhD. Lol.

Hmm. Lol.

Nope. I’m not a natural academic.

I don’t write academically. So, in short, no.

I had an interview recently, to teach a ten week course in Digital Media, and the first thing I told the interviewers was that I wasn’t academic. Needless to say, I didn’t get the job. But my passion was there.

I had the most incredible feedback two days later. Sure, I was let down on the technical side of the course, but one of the points was my claim that I wasn’t academic.

So, what is academia? Is it ivory towers? Yep, that’s what I thought. Convoluted arguments? Yep. Long stripy scarves and a pile of books? Yep.

Well, no. Not always.

I’m going for it, despite my ingrained fears that I’m just not clever enough. I don’t have the right vocabulary, I can’t write paragraph-long sentences and I have no idea how to conduct myself in a tutorial.

I’ll still have to work, still run the house, be available for all The Teenager’s Uni dramas. And still cope with everything MS flings at me.

It might take a while. Perhaps a lot longer than my goal.

And for me, the great thing is, I’ll need your support throughout it – and not only that, I want you to contribute to my studies.

My dissertation will put you at the centre. The more I think about it, the more excited I get – it will be a collaborative effort.

How does that sound? Let me know …

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Never Knowingly Alone …

My wonderful friend Caroline took me and Phyllis the Hernia to hospital today.

Long story short, we’ll part ways very soon (Phyllis, not Caroline).

Anyway, before the appointment and after the obligatory trip to ‘Tiger’ in the hospital concourse, we sat with our coffees amongst the benches and abandoned sandwich wrappers and it hit me, full-on.

I’d been thinking about it for a while, but here it was highlighted: I never (very rarely) go out alone.

Caroline has been with me to so many MS appointments, MRI scans, endocrinology appointments, overnight stays with Alemtuzumab. She takes me to cafes, charity shops (I love a good rummage), exhibitions. You name it, she takes me.

And my long-suffering Boss/Friend – he picks me up for work, drops me off, takes me on long car trips, to Austria and Switzerland, where all I have to do is learn a few more foreign phrases and watch out for lane switches.

I can’t remember the last time I went to town on my own, despite a bus-stop being right outside my house.

Me and Caroline talked about it – I mentioned fatigue, foot-drop, balance. I might not hold on to her arm, but having her at my side means I have support and more importantly, an ally if something stupid happens (whoops, there I go again).

When did this happen?

I’d average that I spend around 75% of my time, at home, alone. Home is familiar, I know every ‘grab post’, every swerve, corner and dodgy step. I can pinball quite happily on my own. Perhaps a bit too happily.

In short, I just don’t go out alone, and how awful is that? Why didn’t I see this coming? I used to stride confidently, everywhere. Now I’m hesitant and I look down, not up, missing out on so many things.

Ever resourceful, Caroline has challenged me to get the bus and meet her in town. It’s a first step?

Inside, I am panicking, planning, worrying. I’m too happy at home and too comfortable with my two closest friends.

Perhaps it’s about time I took a (foot-drop) into the unknown?

Glossing Over The Cracks

In the spirit of Bank Holiday DIY-not, here’s a little list explaining how what I say covers up a whole different, hidden life:

  • ‘Yeah, just a bit tired’ – I will simply wither and die if I do not immediately find somewhere, anywhere, to lie down and sleep.
  • ‘I had a really good day yesterday’ – I got through it.
  • ‘Oh, me? Loads of plans for the weekend’ – Sleep, sit on sofa, have a little think. Sleep some more.
  • ‘Your amazing meal at that great new restaurant sounds fabulous – wish I could have come with you guys, but I had a lovely meal at home’ – heated up some microwave rice, ate from packet.
  • ‘What, these? Oh, I bruise easily’ – you should see the walls.
  • ‘Whoops, butter-fingers’ – please excuse me dropping my coffee/juice/water all over your trousers.
  • ‘Wow, I can fly’ – pesky foot-drop.
  • ‘Awww, I’d love to, but I can’t’ – pretty much everything.

I could go on. And on, but I won’t bore you.

It surprises me how much I gloss over serious symptoms that impact my life at every turn.

But, ‘tomorrow is another day’.

Or, let’s see what MS throws at it?

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