Mar 21 2018
18 Comments
Emotions

I Bet I Don’t …

A fellow Master’s student threw a massive spanner in the works of my so-called Life last week.

She emailed me a link to Student Finance; apparently from September, they will be funding PhD’s through loans, in the same way as undergraduates.

I’d long since put that dream to bed, packing it away with all the other dreams that MS had trampled all over – running a half-marathon, staying up past midnight, opening a packet of crisps, having a proper career,or even a partner.

The Master’s was a challenge I set myself and it was horrific at times. The self-doubt along with the regular cog fog, fatigue and inability to string a coherent thought together morphed into a mountain of despair.

However, the Student Disability Team at my University were magnificent and I wouldn’t have graduated without their ongoing support. The pride I felt on graduation day swept away all the struggles, even if my cap kept slipping and I panicked about foot drop.

And that’s the thing. It was a challenge; difficult, insurmountable at times.

And now, there is no real challenge in my life. I have a great job but it will never be a career – I’ve traded that dream for a job that is flexible, understanding and totally built around MS.

As for a partner. Lol. I’m nowhere near ready for that. Having been single since MS first began (almost seven years ago), I’m resigned to meals-for-one and over-indulging the cat.

Don’t get me wrong, I’ve long since moved on from my epic pity-party-for-one. I count my blessings, not least the incredible care and treatment I have had for the MS.

Yet, there is something … missing, something I could never, ever contemplate but is within tantalising reach. I’m not an academic and it was noted during my Master’s that I’m not an academic writer, so that’s a challenge in itself. But I have a germ of an idea that just won’t go away.

Part of me wants to give it a shot. Part of me wants to keep on binge-watching Netflix, cutting open crisp packets with my safety scissors and peering through the window, watching the world go by without me. It’s safe and it’s comfortable.

So, I’m putting this post out there, to you guys, not to convince me either way, but let’s chew this over. Six years part-time while still working is a huge commitment. Am I running away from dating? Or am I embracing a worthwhile challenge that will stretch me to the absolute limit?

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Mar 20 2018
2 Comments
Symptoms and Treatment

And The Lump Came Too …

Phyllis The Hernia is starting to get on my nerves (which are frayed enough as it is, thanks very much MS).

As regular readers will know, I tagged along with The Boss on his recent Geneva road trip, where he gawped at a bunch of cars and took selfies of himself sitting in yet more cars at the Geneva Motor Show.

While he did that, I sat in one of the numerous cafes at the event, poking and prodding Phyllis and pretending to read through the stack of books I’d brought with me.

Luckily, The Boss was satisfied with a couple of hours wandering around miles of … cars, so we spent the other two days exploring Geneva. Just me, him and Phyllis.

I’d packed my hernia support belt (words I never ever thought I would utter in my 40’s) and tried it on. An almost metre-wide band of elastic, stretchy beige material that I was supposed to wrap around my waist.

In the comfort of the hotel bathroom, I breathed in, pulled the belt tightly around me, Velcroing myself into place. With floor to ceiling mirrors, it was easy to see how ridiculous I appeared. Sure, the pressure was great and I felt a lot better, but I looked like a semi-skinned extra-large sausage, wrapped in pastry and ready to cook.

However, and this is a definite positive, hernia belts are the new Spanx. I suddenly had a waist! With this in mind, I dressed, admiring my new figure and dismissing the ever so slight inability to breathe properly.

Anyway, I took Phyllis to have an ultrasound scan today, to see how big she had grown, before I have surgery. I duly turned up at the allotted time, having foregone coffee for hours beforehand and waited for almost an hour.

When I was finally called and had shown Phyllis to a couple of people, they looked at me sadly and told me the doctor had booked me in for the wrong scan, so I have to go back on Sunday.

I got back home, gulped down three coffees in rapid succession and cursed Phyllis. The hernia saga continues …

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Mar 20 2018
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Daily Life

An Invitation To Naidex …

I was asked to become an ambassador for Naidex, but sadly I’m unable to travel to the event.

However, I’ve looked in to it and It seems pretty exciting, so here’s some more about them (as always, I haven’t been paid to mention an external event/product – it’s part of what makes this blog so special!)

Naidex is Europe’s most exciting event dedicated to the disability, independent living and healthcare professional sectors. In the wake of the huge success of the most recent instalment of this esteemed and long established event, Naidex will return for its 44th year.

Taking place at the NEC Birmingham on the 25th and 26th April, this esteemed event provides cutting-edge exhibitors, world-class CPD accredited seminars, live demos, 1-2-1 advice and unparalleled networking opportunities, over two unforgettable days. And it’s free to attend!

Since taking over this powerhouse event in mid 2016, PRYSM Media Group have injected diverse content, expert speakers and 20 years of experience in event organisation, and it hasn’t gone unnoticed. Attracting thousands of public, trade and healthcare professional visitors, Naidex has regained its momentum and is back on the map as the event for the disability sector.

With an increased floor plan, and running alongside the Dementia Care and Nursing Home Expo, there is no limit to the reach of this incredible event. PRYSM Media Group will be resolutely nurturing and developing Naidex leading up to the event, to ensure that old favourites such as the Mobility Test Track and Sport Demo Arena are refined and focused, and brand new, never before seen components will motivate and awe a cross section of forward thinking, international delegates.

Naidex will realign the disability sector, propelling it into the future of inclusion, accessibility, empowerment and efficiency. If you have a disability, live with or care for a disabled person, or are operating in the disability sector, this event is absolutely imperative for you.

Register for your FREE ticket on naidex.co.uk!

Mar 13 2018
8 Comments
Daily Life

Hair-Brained

Readers, I have committed a cardinal sin.

I quote, from a DWP representative who visited me for an hour, with me being the last one on her list of six for that day:

‘she … raised both arms up to her head running her fingers through her hair.’

That is an actual ‘observation’ of what it is like to live with MS.

Funnily enough, all her comments create an image of a meeting I don’t actually recall taking part in. Apparently I was ‘dressed appropriately for the climate and was well-kempt.’

If you consider a worn and old t-shirt and jogging bottoms (minus a bra) to be well-kempt, I would seriously worry. Likewise my hair, greasy and lank, which I hide under a woolly hat most days.

My ‘memory is good’.

Yeah, I wish.

I ‘handled my ID well’ – which is strange as my mother did that for me.

My ‘speech was normal and I showed no signs of distress’. So she obviously forgot when I asked her to give me a break and stop asking me question after question after question, with the sole aim of catching me out.

Apparently I ‘visit family often’. My mother lives two streets away, my sister a few miles. I haven’t seen my sister in months and my mother visits me by taxi.

I could go on but I won’t bore you with the endless lies.

One last thing, I was ‘chatty and engaged’, with ‘full eye contact’. Which is strange as she (the Assessor) never looked directly at me once. She was so disengaged she might as well have spoken to my back wall.

I am entering the sixth month of DLA to PIP assessment.

Six months.

And according to this person, I should go through this again every three years.

If I were to write about her in a DWP report, I would say:

‘zero eye contact, rude, abrupt, uncaring, disinterested.’

Two points?

Nul points?

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Feb 23 2018
10 Comments
Daily Life

Alien?

herniaAt first, I put it down to pasta.

Then croissants, lattes and wholegrain rice.

It started with a slow but distinct rumbling and gurgling in my stomach and I thought no more of it.

Until it started to grow.

The upshot is, I have a hernia. I mean, what? Huh? How?

I’ve been to my Doctor and I’m waiting for a scan (‘the same one you get when you’re pregnant. You’re not pregnant are you?’ chirruped my Doctor, as I chuckled), but this lump in my stomach doesn’t seem to want to wait and grow at a semi-decent rate  – it’s morphed from a cute little egg-size into a full-blown grapefruit in the space of weeks.

And it moves. Even the Doctor was impressed, and she’s probably seen everything, warts and all.

Of course, as with MS, I’ve been inundated with horror stories – aunties and uncles who ended up strangling their hernias or being strangled by them, hernias that popped, hernias that led to … more hernias. There’s even support groups out there, filled with more horror stories, along with some excellent advice (I am awaiting a hernia support belt – extra strong – as I write).

To be honest, it’s uncomfortable in the extreme. I may as well have a brick strapped to my stomach. I look weird in the mirror, my podgy belly is still there, but now with a pronounced lump on top of it.

In a bid to embrace this unexpected addition to my already raddled body, I’ve decided to name my hernia Phyllis. My MS has many names, most of which are too rude to publish. More often than not, it’s a malign shadow – the exact replica of my body, but completely different when it moves.

And that’s the great thing about hernias! Yup, there is one. It’s got a definable path. I know what to expect. I’ll most likely have a quick operation, where the Doctors open me up and squish everything back inside then staple me back together. Or strap me up with gaffer tape. I don’t mind, I’m easy.

It’s refreshing in a way. Like having a cut I know will heal. Or a headache I can take a tablet for. So although it’s dominating my life at the moment, it’s temporary and it will go.

Wouldn’t it be amazing if we can one day say the same for MS?

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