Sep 25 2017
6 Comments
Symptoms and Treatment

Expert By Experience

speechI’m ever so slightly nervous.

I’ve been invited to speak at a neurological conference, about my experience of MS treatment: in my case, Lemtrada.

I’m nervous on two counts:

  • I’m not a hugely experienced public speaker
  • It’s taking place just outside Budapest, Hungary (and I’m going in two days, eeeek).

However, I am going and I will do my absolute best – it’s a topic I’m passionate about and if that means conquering my MS-travel-related-anxieties, then so be it.

I’ve written (and re-drafted) my speech and I think it comes from the heart. In it, I discuss my decision-making process in choosing the treatment I had and the benefits of it. And also the downsides.

It it empowering to have a voice and to discuss in public the importance of choice. Reflecting back over the last couple of decades of my life, my voice was somewhat quashed; whether through experiences or through people I allowed into my life, with all their notions about how I should act, what I couldn’t say. It’s kind of poetic irony that my first relapse affected my speech.

So MS may have taken away my speech with one hand but it gave me back an attitude – a desire to create change – with the other. Blogging has been a huge part of this – from meek beginnings, where I hid my identity for fear of ridicule or prejudicing the legal case against employers who sacked me for having MS, to my more strident posts, yet always trying to demonstrate a balance of how life actually is for a small family coping with MS.

However, finding a voice is also about listening to other voices, and the thousands of comments on my posts I’ve received over the years have proved that, over and over again. You guys have sanded off my sharp edges, picked me up when I’ve been down and virtually held my hand through Teenager crises.

And that’s why a large part of my speech is devoted to you, and the power of support. When I took The Teenager to Uni almost two weeks ago, I didn’t feel alone, even as a single parent. I really felt that you guys were there with me, every step of the way.

And it’s also why we are all ‘experts by experience’ – a phrase mentioned to me by a fellow blogger, Patrick. We both agree that the usual, ‘expert patient’ can still make us appear as passive recipients of care, whereas ‘experts by experience’ emboldens us, allowing us to stand up and say, ‘yes, amongst everyone here, the neurologists, the physiotherapists, the researchers, I’ve had the treatment and I am the expert too.’

So, listen to me?

It’s me who went through the lumbar puncture, the MRI’s, the blood tests, the initial steroids to ward off relapses, the actual treatment, administered in a drip. I’ve been completely floored and got back up again. The different tablets for weeks afterwards to ward off infection. The fatigue, the weakness, the all-too-quick-recovery back into work before time.

We’re symbiotic – the health care professionals and us, the patients.

We work together?

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Sep 20 2017
6 Comments
Daily Life

Big Expectations

fatWell, that’s several hours of my life I’ll never get back.

I wanted to buy a plain navy blue t-shirt.

And that’s it.

Not much to ask?

I’ll admit, I’m big, although not excessively over the UK average.

Yet searching online I seemed to fall down a rabbit-hole of ghastliness.

I won’t bore you with the details of my ever-frantic searches, but suffice to say, if you’re a big gal, you bound to wear clothes with:

  • Ruffles
  • Huge dropped hems at the back
  • Sequins and cheap beads
  • Ridiculous slogans (no, I don’t ‘Blame It On The Prosecco’)
  • Garish patterns, swirls and side-ties (why?)
  • Lazy tailoring and all-round general baggy fits, i.e. sacks.
  • Lace. Lots and lots of lace.

Even at the higher end price range, the choice was dismal. Nothing was understated and elegant, or just … basic but well made.

In my job as a building project manager, I only spend one or two days a week in ‘normal’ clothes. More often than not I’m in steel-capped boots, cargo trousers and a hoodie. Hair pulled back in a ponytail and some lip balm for the chilly mornings. My other outfit is jim-jams as soon as I get home and fall asleep on the sofa.

So when I wear ‘normal’ clothes, it would be nice to wear something smart but casual. Well-made, classic. I’ve never been known for my fashion sense and never well be, but it’s refreshing to emerge from a cocoon of dust and mud with clean hair and no black bits in my ears.

Back to my tale of woe – a navy blue t-shirt. I dismissed the one with the sequinned pocket and dropped hem. The baggy one. The one with lace inserts. The one slashed in odd places. The one exposing bare shoulders.

Instead, I dug out my huge pile of ‘too fat to fit now, could possibly fit in the future’ clothes from my cupboard. And there, right in the middle, was a lovely t-shirt. Ok, so it has a scattering of tiny beads, but they’re so small I might snip them off.

If I breathe in, it fits perfectly.

I might not be able to talk much, but it makes a change from my hoodie?

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Sep 16 2017
14 Comments
Symptoms and Treatment

Don’t Believe The Hype

lifeI was wandering around the supermarket yesterday and accidentally went down the Baby aisle.

With the last 18 years of bringing up The Teenager fresh in my mind since taking him to Uni, I felt a bit of a pang.

I gazed upon the rows of feeding cups, teeny tiny outfits, creams, ointments and the inevitable ‘How-To’ books.

Someone once said to me, when I was heavily pregnant and reaching for my second ice cream sundae, that babies don’t come with an instruction manual; probably the best piece of advice I’ve ever had.

In a way, having a child and being diagnosed with MS are weirdly similar, and having been through both (and survived to tell the tale), I can quite confidently say, ‘MS does not come with an instruction manual.’

In the beginning, I thought it did. Similar to being pregnant, when I was diagnosed, I was bombarded with stories (both good and bad), told to do this, told to do that, take this supplement, eat this raw bark by the light of a full moon. I read endless articles online, mostly grim, and I envisaged a similar future. The few positive stories involved wildly expensive treatment and/or jumping out of a plane for charity.

When I had The Teenager, I constantly referenced books, other people, forums, random strangers – ‘why won’t my baby stop crying?’ Whilst the deluge of advice was welcomed, it wasn’t helpful. Just like MS, every baby is unique. What worked for me (draping my baby over my arm and rocking him in tune to The Verve, a completely accidental occurrence), didn’t work for others. We found our own groove through trial and error.

MS has a virtual cornucopia of symptoms and none of us are the same, just like those tiny week-old humans. You can read as much advice as you can, you can pin your hopes on a miracle cure, just like I did to cure The Teenager’s colic. Nothing worked until I found my own solution to our own unique problem.

Being diagnosed is about finding out what works for you. Your symptoms will nudge your life in different ways, to cope with various symptoms, be it fatigue, cog fog, mobility and all the rest. When you seek advice, take what you need from it and discard the rest. It’s your life and your life with MS is not the same as anyone else’s.

I’ve found my MS groove, just as I found my Baby groove. I don’t drape myself over anyone’s arm, but I’ve re-calibrated certain aspects of my life which work for me, but which I would never foist upon anyone else.

I know when to sleep, when to do paperwork, when to shop, when to go to work. I know when to be extra careful going up or down stairs and I now know how to cope with dark days. All this works for me, but probably won’t for you.

Examine your MS and find out how to play it. It’ll take time, trial and error and blind alleys.

But you will find it.

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Sep 13 2017
10 Comments
The Teenager

Living Alone, With A Cat …

CatThe house is eerily quiet, although the fan in the bathroom is humming in the background, trying to cope with The Teenager’s last, long epic shower this morning.

Spookily quiet, after 18 years of noise, from toy drums and rugby studs on the wooden floor to blasting music on the iPhone.

Hmm. So this is the Empty Nest.

All I can hear is the pesky cat crunching her biscuits.

A couple of hours ago, I took The Teenager and five huge blue Ikea bags to his new flat, at Uni.

A weirdly quiet journey as The Teenager was asleep for most of it with a heavy head cold, only waking with a start when Kasabian came on the radio (‘saw them live’), before nodding off again.

I nudged him awake as we navigated the campus, where I was handed a huge neon sign to put on the dashboard before we drove in circles, guided by people in neon coats. Maybe they reuse all the stuff for the first Fresher’s Party? More neon people greeted us when we finally found his block and strapping students (in neon) helped take his bags up to his flat.

The room was great, and I bustled around, sorting out his stuff (as previously agreed in the ‘What Mums Can and Cannot Do On Drop-Off Day). Towels, shower gel, plates. I held a box up, ‘these (dramatic pause) are washing tablets.’

As it was, he was so tired, all he asked for was his bed to be made up as he wanted to sleep; seems he was totally embracing the student life, right from the get-go. Impressive. More impressive was the huge sign outside the courtyard of blocks – ‘Pizza Delivery Point’.

So I tucked him up in bed, admired the view, and told him I would always be there for him, but would never, ever turn up unannounced. He smiled as best he could and I left him, with a card containing an Amazon voucher and all my love.

The drive home was weird. Getting in the front door was weird. Walking in to the silence was weird. I wandered around the house, clocking his ransacked bedroom, just his prom outfit and a few pairs of shorts left hanging in his wardrobe.

I opened the freezer and sighed when I saw the bags of his favourite chicken. In the fridge, there’s half a carton of his milk left. It all feels … weird.

But yet, taking him to his new place today, feeling the buzz around the campus and watching him take his first step to adult independence, I was bursting with pride. As my mum said on the phone when I got back, ‘it’s not been the easiest of journeys, but he did it. You did it. You must be so, so pleased.’ And she wasn’t talking about the M4 roadworks.

So as The Teenager begins a new phase in his life, so must I.

This is where the adventure starts …

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Sep 11 2017
2 Comments
The Teenager

One Child, Multiple Sclerosis …

single parentFor me, the worst feeling in the world isn’t a relapse or falling face-down on the pavement.

It’s telling your child you have MS.

And not only that, telling him it’s just me, the one with MS, who will be guiding him through his teenager years.

A bit like saying, ‘yes dear, I have your rugby kit, but I’ve trampled on it and chucked it on the club-house roof. Go fetch.’

Looking back over the last six years, we muddled through; I made numerous mistakes, I mishandled situations (kids prefer the truth), and I spent a lot of time pretending to be well. But you do, don’t you?

How do you explain the realities of life with MS at the same time as shielding them from the realities of life with MS? As the only parent? If you’re the 100%, there’s no room to carve out any space to get better, to regenerate. The Teenager saw me at my very worst and my very best.

It saddens me. If there had been more support in place, I could  have recuperated from treatment, gone through the weird and wonderful journey that is a 5-day course of steroids on my own and come out the other end, ready to be the parent I always wanted to be.

Up until MS happened, I was one of those annoying mums who scanned the free mags, looking for trips to bird sanctuaries, animal handling events, pumpkin carving evenings and all the rest of it. We made shields in Cardiff Castle, clay faces in pottery cafes, constructed buildings from cardboard, complete with messy painting and Lego figures.

Life was getting better. I had a University course in mind which would ultimately increase my earnings. I went for the interview, receiving positive feedback.  A month before MS. My child-emergency-friendly, low-paid job, which fitted in around his school hours turned into a nightmare of stealthy bullying, step by step. After almost ten years in a similar low-paid, child-friendly job, this was devastating.

And again, being the 100% parent only increased the amount The Teenager saw. There was no hiding the realities of the situation but I cried when he was in bed. I held it together until then and everything was normal. Ish. But, of course, it would never be normal again.

The upside? Of course there’s an upside. The Teenager has been exposed to human frailty at it’s worst, and got through it. Sure, this has not been the childhood I wished for him, and I will always regret that. Yet, he is thriving.

For him, I moved from inner-London chaos to lush, green North Cardiff. He had an enviable childhood in that respect – we live on a green field and he and his friends explored far and wide on their bikes when they were younger. Does it make up for being a wonky parent? Probably not.

As he heads of to University, I know he will find his niche. Have I done enough to prepare him. Perhaps not. Will that be half the fun?

Maybe.

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