Tag Archives: multiple sclerosis

Apr 02 2018
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Emotions

A Date With Fate

People often say, if you think too hard about the best time to have a child, you never will.

It’s the same with car crashes and disabilities.

If you’d asked my 23-year-old self if I had the time and resilience to be involved in a near-fatal car accident, necessitating six months off work, I’d have laughed. But it happened.

Forward 14 years and if you’d asked me on Friday 24th June 2011 whether – as a divorced mother of an 11 year old – I was ready for a serious, degenerative illness to suddenly pop up and change my life forever, I’d have laughed my head off. I had far too much to do, how could I possibly fit it in?

Yet it happened – I went to bed that evening as usual and woke up in a completely different body, one I barely recognised.

The surprise element in these three scenarios can be overwhelming for people like me, who think they knew where they’re going.

Just like that, you don’t.

I often think back to that fateful evening and wonder if I truly appreciated my life, as it was, when I closed my book, fluffed up my pillow and turned out the light. I don’t think I did.

Sure, I had a plan, and it was a good one – possibilities were opening up as The Teenager entered high school and the tethers of childcare were loosening. I would also lose that extra weight, learn how to apply eyeliner and rustle up a mean Martini.

MS hit and I went under. For two years. It was almost as if I refused to believe that it had actually happened. I was grieving for what could have been and what should have been. It was all so … unfair.

It’s only now I realise that it wasn’t so much the MS that rocked my life (**** happens?), but my inability to recognise that life had changed and there was absolutely nothing I could do about it. A bit like the car crash.

Almost seven years on from that day, I am serene, calm and accepting.

Nah, not really.

But – I’m much more flexible in my approach to life, unlike my body, which is often rigid, wracked with weird vibrations and does the strangest things.

So many awful things have happened since MS but none now have the power to shock me quite as much. When life events drop down the shock-scale, it’s rather nice. When MS happens, what can be worse?

Oh, wait, I forgot about The Department of Work and Pensions …

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Mar 31 2018
2 Comments
Symptoms and Treatment

Out In The Open

I realised something quite profound the other day.

My life since the age of 13 or so has been divided neatly in half by two very different medical problems.

And not only that, one was visible (far, far too visible) and one is by and large invisible, to most people anyway.

And it is this issue of ‘visibility’ that makes me stop and think, and one which links both problems.

For over 20 years, I had incredibly bad acne. To many people, this might be a case of, ‘so what?’ But believe me when I tell you I went through absolute hell. It was difficult enough enduring it throughout school (you can only imagine), but for it to continue well into my 30’s was horrific and dominated my life entirely.

I would go to bed every night for two decades, praying I would wake up with clear skin. Very few people ever saw me without thick make-up (I tried all the foundations under the sun), but none of them could ever disguise the angry skin flaring up underneath. The more I tried, the more I failed.

I simply can’t begin to explain how my skin affected my life. My face was the first thing people saw and every time someone looked at me, a little piece of me died inside. I knew exactly what they saw, and I felt humiliated and ashamed.

And then, just as my skin cleared up, MS hit.

I wonder whether it is my experiences of hiding away, saying no to so many things (so many regrets) and generally shunning the best that life can offer that has made me so vocal about living with MS.

This time, I refuse to hide. It’s tempting, very tempting. In light of the DWP debacle, part of me is seduced by the idea of doing what they ask, shutting my front door and retiring politely from public view. And I remember exactly how that feels, from years and years of experience.

But I won’t hide and now I have the reverse problem – having to work endlessly to prove to people that I actually have a medical issue. It’s quite bizarre.

Ultimately, what can I learn from this? Am I trying to overturn my ‘mistakes’ from before? If I am, bring it on! Perhaps if social media and blogging had been around ‘back in the day’, I would have evolved into a proud ‘reclaim acne’ teenage blogger.

As it stands, visibility and medical symptoms have been the enduring story of my life. Isn’t it time we reclaimed all health issues as just that – if you’ve got an issue with it, jog on?

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Mar 25 2018
5 Comments
Daily Life

PIP Off

PIP has taken over six months of my life. And I will be reassessed every three years.

Because MS just gets better and better, dont’cha know?.

I first got the ‘invitation’ in October last year.

And now we are facing April, and I’m looking to compile a Mandatory Reconsideration.

The meeting the Assessor described is something I don’t recognise at all. Were we in the same place? Was she actually present? Or did she in fact have her head down the whole time, cutting and pasting paragraphs?

She was angry and upset and willingly told us we were her last on a list of six for that day. Oh, and she had been an A&E nurse, so knew all about MS.

Think for one moment how much detail you can achieve of someone’s life with MS in 55 minutes, excluding greetings, setting up a laptop, asking, leaving?

Yet apparently they can, they know you inside out, they know everything about your life with MS.

In 40 minutes.

According to their own guidelines, a ‘snapshot’ of life should not be a guider in a DWP decision. And, in fact, neurological, incurable illnesses such as Parkinson’s and MS are decreed unnecessary for a face to face assessment.

But still it happens. I’m not the same person I was six years ago, but under new guidelines, I am better, recovered, cured.

Huh?

Yet this less than, shall we say, 40 minute, assessment, could be the difference between independence and complete reliance upon the state.

I want to keep working. I want to stay engaged. But this takes the biscuit.

What do you hope to achieve by stripping us of our lifelines?

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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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