Oct 17 2015
8 Comments
The Teenager

The Teenager, Reinvented

teenagerIn the Summer of 2011 when MS brutally crashed into our lives on a beautiful, blue-skied, Summer’s weekend, my first thought was, ‘My son. What about my son?’

I was lying on a cold, hard bed in Accident & Emergency at my local hospital, unable to speak properly or walk in a straight line.

He was eleven years old and due back from visiting his dad in London, a round train journey of almost 300 miles. He expected me to be waving at the concourse, holding up a bag of goodies from Marks and Spencer’s.

Instead, I hastily organised a trusted friend to pick him up and take him to my mum’s house where he was fed cookies, milk and platitudes.

Since then, we have traversed the triple-whammy rocky roads of secondary school, the Teenage years and MS. It’s not been easy for either of us. Just when my son needed me as his rock, my foundations were shifting and I was floundering. Life as I knew it was crumbling around us and I was desperately trying to shore up the gaps to no avail.

The answer dawned slowly through the fog of grief and self-pity; rather than cementing the crumbling footings, we could both build anew from the ground up, and that is what we did. We had a lot of very, very honest discussions and also confrontations. We were both learning to live and grow in wholly new ways. It was simultaneously frightening and enlightening.

My son has learned to live with MS as a constant, just as I have, and this saddens me. However (and despite it all), he has matured into a caring and kind young adult and I burst with pride at his achievements.

Over the Summer this year he decided to train at the gym on a regular basis. Now he is in sixth form, he plays for the school’s rugby team and boasts a six-and-a-half-pack, standing tall at well over six foot. He has swapped his favourite Domino’s pizza – extra pepperoni, don’t hold back – for protein snacks, and exudes a glowing sense of confidence and self-determination.

Looking back over the last four years, I couldn’t ask for more.

Hang on, yes, I could.

If he could find a weekend job, my joy would be complete. But that’s another story.

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Oct 12 2015
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Symptoms and Treatment

Nerve-Jangling

nervesEvery late-afternoon, just as the sun begins to set, I have an overwhelming urge to take off all my clothes.

Sadly, this has nothing to do with a new-found interest in naturism or a desire to embrace my post-40 body, flabby bits and all.

I don’t find myself in front of the mirror chanting positive affirmations while gazing deep inside my soul.

It’s much more pedestrian than that – it’s an MS symptom. Mind you, that sounds quite weird so I’ll explain.

For the last two weeks I’ve had the most hideous nerve pain. I’m well-used to this in my legs, my feet and those occasions where it comes and goes in my arms and hands. It’s my constant nemesis. But this time the pain has been cranked up to the level where it hurts to have clothing next to my skin, a bit like a case of very bad sunburn.

Not only that, any kind of pressure is torture, so I spend my evenings alternating between sitting bolt upright on the sofa or wandering around the house like a lost soul, tripping over the cat.

Every morning when the nerve levels are manageable once more I think, ‘gah, must have been imagining it, tsk, silly me’. I get through the day, catch up on university reading (still struggling, still bewildered), attempt to pin-down The Teenager for more than three minutes to find out what he’s been up to (apparently we live in the same house, though you wouldn’t think it).

And just as I begin to relax, start to slough off the challenges of the day, blam, there it is. As if every single nerve ending is a burning needle. I’ve tried billowy t-shirts and baggy sweat-pants, I’ve tried a kaftan (yup, and luckily The Teenager was out that night). I’ve tried slathering myself in moisturiser as some kind of barrier cream but ended up sticking to my clothes.

I’m hoping it’ll pass and doesn’t become a permanent feature of my life. I know I quite fancied myself as a tortured writer, starving in my garret, but this isn’t quite the way I had planned it.

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Oct 09 2015
2 Comments
Symptoms and Treatment

The Perks Of Being A Goldfish

goldfishThere’s nothing much happening in our little cottage since I’ve been convalescing from my third course of Alemtuzumab, so I’ve mostly been Thinking, which is always a risky undertaking.

Uppermost in my mind is, well, my Mind. In other words, my Goldfish Brain.

This is best explained by my risible attempt at New & Experimental writing at Uni:

I had to ‘write a sketch  in which the gender of the narrator and/or characters is obscured or manipulated in some way’.

Really.

So I did what any pretentious peep with literary leanings would do and wrote a sketch using only titles from the top 50 bestseller list from a popular bookstore – sample line: ”It was always Personal, always about Us. Where My Heart Used to Beat, there is only Lamentation”. Counter-culture or what? And I even called it ‘Water & Stone’. Yup, I am that tragic.

Anyway, I polished it, posted it on our forum and promptly forgot about it. Which probably wasn’t a bad thing.

This got me Thinking. MS has taken a giant eraser and smudged out a whole part of my brain. At first this was pretty frightening, as you can imagine. Words failed me, jokes died, anecdotes withered in the middle and post-it notes bloomed all over the house.

Looking on the bright side however, I decided to write a list of all that was positive about this, and here it is, taken from my scribbles:

  • Supermarket home delivery is a joy, every single week. I completely forget what I’ve ordered, so when I unpack the bags I stare in wonder at the gluten-free pasta and think, ‘wow, I needed this! How fabulous’. Digging through the bags is exciting and just like Christmas. Especially when they pop in a free sample – ‘yay, a small pot of spinach-flavoured yoghurt, just what I wanted’.
  • I am the Best Ever Friend. I’m the friend who can not only keep secrets, but also promptly forgets them. Result.
  • Every day is a whole new experience. I wake up refreshed, having forgotten the traumas of yesterday. If I’m reminded, I’ll deal with it. If not, I enjoy my coffee.
  • I can’t argue any more. This may sound like a bad thing, but believe me, it’s an unexpected bonus. People will attempt to bring me into long-standing grievances/arguments/slights and I’m like, ‘oh, really? And when did that happen?’ They will then start talking really slowly in a very loud voice to me and try to explain. I forget.
  • I’m never bored; I gaze at my pile of books by my bed (just the books I want to read, how amazing), I admire my friend’s notes from Uni (was I actually at that lecture? Wonderful, let’s read the notes and enjoy it all over again). Hey, someone’s put more loo-roll in the bathroom and it definitely wasn’t The Teenager. How thoughtful.
  • Last but not least, I forget how much chocolate I have eaten.

Mind you, I’ll have to rein in this Goldfish Brain as I start back at work in a couple of days.

Apparently I’ve met with The Boss for coffee several times over the last week for a catch up and debriefing. If you remember what we talked about, could you send me some notes?

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Oct 04 2015
4 Comments
Symptoms and Treatment

Sick. And Tired.

workWell, this convalescing malarky isn’t much fun.

An interminable routine of waking up and falling asleep, interspersed with hideous headaches and increased foot-drop, so much so that I had to dig out my craft glue-gun and stick the soles back on my favourite boots after tripping over one too many pavements.

University started back last week which was a welcome reprieve. I packed my file, pencil case, water bottle and emergency Pro-Plus and toddled off, careful to watch my step as the glue has been in a drawer for a couple of years.

A whole module of New and Experimental Writing. Exciting. Or so I thought. I pondered ruminated mused, ‘I can be avant-garde, I can be Left Bank and enthuse about counter-culture and the like’. I pictured myself in six months time, graciously accepting a literary prize for my ground-breaking, innovative novella in which the main character was an MRI scanner. Brilliant. Undeniably genius.

Anyway, back in the real world, I have one more week off work and plan to sleep through most of it in the desperate hope that I can bank some energy. I dipped my toe in the water yesterday and worked with The Boss just to see how I’d manage. All went well; I was on top form, as I’m pretty good in the mornings. We started off with a debrief over coffee and toast in the local cafe. My eyes glazed over after a while and he dragged me to work, bribing me with a flapjack from the bakery next door.

It was fine. Until about noon, when the foot-drop reared its ugly head. There’s a lot to trip over on a building site. There’s a lot of holes in the floor, and after my spectacular fall through a kitchen ceiling a couple of years ago (which I’m reminded of on a weekly basis), I’m pretty careful.

I yawned more and more until the boss took the hint and wrapped it up by 1pm. Bliss. I fell into my house, threw myself on the sofa and didn’t move for three hours. I’m not so sure my Back To Work Plan is, um, going to plan.

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Sep 27 2015
10 Comments
Symptoms and Treatment

How Not To Convalesce

illnessTime off to recover after Campath is a tricky thing.

Viewed in a certain light, it’s an excellent chance to slow down, take stock and make the most of the enforced sofa-rest, cushioned by a pile of books, a stash of chocolate and box sets.

In normal life however, without my very own Mr Darcy, the washing piles up, The Teenager has started his A Levels, the cat insists on bringing home an endless parade of headless mice and Ocado have emailed, imploring me to book my Christmas Delivery Slot, NOW.

In between bouts of complete and utter exhaustion, I’m battling to keep the show on the road. Plus I’m trying to think laterally and use the time off not only to rest but also to get ahead, i.e. work my way through the entire University reading list for next term.

I had all the books delivered, settled down, unwrapped a bar of Green & Black’s and prepared to be inspired and transported to wondrous new worlds.

Bad idea. I checked the syllabus. I checked the books. I emailed the tutor. ‘New and Experimental Writing’. Let’s just say, I have no idea what Gertrude Stein was taking when she wrote ‘Blood on the Dining-Room Floor’.

However, I ploughed through, ticked her off my list and moved on to the next one. Excellent. Somehow, I have moved into a Poorly Routine. I get up early when I have most energy, do something outside the house, get back by lunch then snooze through the entire afternoon. Then, I wake up, cook dinner, snuggle under my blanket again and wait for bedtime. It’s been working. For a while.

Two days ago, same routine. I got up early. Then fell on the floor.

Oh. Painful doesn’t begin to describe it. I was in agony. I could barely walk and somehow made it downstairs through a combination of swearing, clinging on to the handrail and thumping. By some bizarre coincidence, I had booked in to see the chiropractor, more for The Teenager than for me (scrums, head-locks, dodgy balls).

Long story short, my psoas muscle is in spasm. The pain goes through my pelvis and groin and out through my lower back. Walking is excruciating. According to the chiropractor, it’s all due to my sudden inactivity. Lol.

When I told my MS nurse I planned to return to work ten days after Campath, she laughed, then said, ‘no you’re not’. Ok then. Quick call to The Boss to explain the situation. His reply? ‘Didn’t notice you were off, Half-Shift. Or should that be Sick-Note?’

Charming.

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