Author Archives: stumbling in flats

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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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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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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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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Join The #KickMS Movement!

AliceCan Do Multiple Sclerosis, a non-profit that provides health education programs for families with MS, launched their annual, online campaign that encourages people with MS, as well as their friends and supporters, to share how they #KickMS during September’s Can Do Month celebration.

The Can Do Month campaign honors and remembers the legacy of Can Do MS founder and Olympic ski medalist, Jimmie Heuga, on his birthday, September 22.

Jimmie pioneered the philosophy of health through exercise and nutrition, enabling those with MS to lead healthier lives.

“My father kicked MS by focusing on what he could do rather than what he could not,” says Blaze Heuga, Jimmie’s son. “Because of this, he was able to go beyond perceived limitations to live his best life with MS and empower thousands of others to do the same.”

The community can celebrate Jimmie’s can do spirit and inspire others by sharing how they live passionately through a photo, video, or mantra. #KickMS by running, painting, camping, laughing, cooking, travelling, loving, or anything you can do!

There are three easy ways to share how you #KickMS:

  • Submit your photo or video online at mscando.org/candomonth
  • Share your photo or video on the Can Do MS Facebook page using the hashtag #KickMS
  • Share your photo or video on your personal Instagram or Twitter account using the hashtag #KickMS (post must be set to public)
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