Feb 27 2017
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Symptoms and Treatment

Going Round In Circles

circles When I’m experiencing them, I’m never quite sure if a sudden surge in MS symptoms is a relapse or not.

I only get the definitive answer when I wake up one morning (days, weeks, months after) and I just know it’s over – it’s kind of a retrospective thing.

Today, hallelujah, is one of those days. The murky fog has cleared, my energy is restored to its usual low level and the world seems a much brighter place. I look back over the last couple of weeks and realise just how awful things were.

To begin with, I ignored the numbness down my right side, the dodgy tingling hand, the weak arm. Then came the beyond-out-of-proportion tiredness and jelly-brain. As is usual with a relapse, my world shrank. I did the bare minimum and I did it badly. Work was a nightmare (Boss not happy) and when I got home I slept (Teenager not happy), woke up and barely moved from my sofa.

After that came the symptom that left me stunned – my body seemed to want to pull to the right, so walking in a straight line was a bit tricky. I ended up turning right an awful lot, so much so that I might as well have been walking in circles. I slammed into walls, fell with a thud into my washing machine and tripped down five stairs, ending up lying dazed on the floor, squished between the bottom stair and my bureau, finding a long-lost catnip ball in the process.

The most worrying episode was when I was in the shower the other day. Again, my body wanted to jerk to the right. Unfortunately this meant I fell out of the shower and cracked my head against the toilet. As I was lying there, I was ever so grateful I hadn’t knocked myself out as the thought of paramedics finding me naked on the floor, crying and trying to cover up with a single flannel was unbearable.

After counting the cobwebs on the ceiling and noting the gaps in the silicone seal around the shower screen, I staggered to my feet, put my dressing gown on and sulked on the sofa for the rest of the day. Again.

So it’s over, for now; I’m back to the baseline, which seems to rise with every relapse. Whereas before I fretted about every tiny symptom, diligently jotting them down in my ‘MS Symptom’ book (one from 2013 – ‘my nose seems to itch more and swallowing is a bit of an issue’), I now have a much more ‘yeah, yeah’ attitude. It’s about accepting it and living day to day.

I can say that now. If you’d asked me last week however, I’d have given you a withering look and sighed.

Progress?

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Feb 19 2017
6 Comments
Work and Studying

Definitely In Spirit, Not So Much The Body …

cementFlexible working is great. Until it isn’t.

Over December and January, it meant that I could take off oodles of time with MS.

Luckily we were fairly quiet, so I spent day after day on my sofa, nursing my fatigue and nerve pain, feeling very sorry for myself and admiring my Nordic-Noir Christmas tree, i.e. it had white lights on it and not much else (too tired).

Now we are in February, those days are coming back to haunt me, and how. Money is not so much tight as non-existent. There’s no more days off and I’m still not 100%.

The good news is, I’ve devised ways to be in work, without actually doing that much. It’s genius:

  • On a large building site, I try to have complicated A3 plans open and nod, seriously, pen in hand. There’s always a pile of cement bags to sit on and cultivate the ‘hmm hmm’ look.
  • If there’s no plans, I sit on the cement bags and look up, with a pondering expression. People will think I’m checking out the roof pitch. For added authenticity, I open the calculator on my phone and tap furiously.
  • I waylay contractors with questions I already know the answers to – plumbers and electricians love nothing more than talking you through their work, wire by wire, pipe by pipe.
  • I count the bricks that have just been delivered (being careful to check the invoice beforehand so I already know the actual number).
  • Make teas and coffees for everyone. If I do this, no one will care you’re actually doing nothing at all.
  • If all else fails, I grab a brush and hold onto it for dear life. I look busy and it’s a great way to stand up straight.

So this is what I have been doing, alongside practising my ‘eyes wide open but I’m fast asleep’ look. I’m getting pretty good, which is why I think The Boss has twigged just what I’m up to.

He bought me a teeny-tiny computer a couple of days ago, so we can synch stuff. Which means I have to do some work. He’s also looking in to office spaces and has booked me into the Apple Store’s ‘Macs for Complete and Utter Numpties’ session next week. (there’s a pretzel store opposite, result).

As my best qualities are bossing people around and typing up spreadsheets, he’s taken the MS into account and is making the most of my talents. I’m a people person and there’s only so much you can say to a pile of cement bags and a tonne of sand.

I’m excited to be moving into a more office-based role. And the best news? It comes complete with zero office politics (I can’t argue with myself/no danger of being sacked for having MS), I still get to wear my builder’s gear to work as I’ll also be out and about checking up on our contractors and I can appear somewhat creative as I open my tiny Mac in the nearest coffee house.

If I could just work out how to use the Mac, I’ll be fine.

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Feb 12 2017
24 Comments
Emotions

Building A Future?

woodUntil fairly recently, I had dreams of taking a Doctorate in Creative Writing.

After the utter implausibility of finally mastering a Master’s through much trial and error (plus a decapitated mouse which appeared in my first, futile attempt at short fiction), I thought, ‘why not?’

I duly collected leaflets about available courses and being a mature student. I scanned blogs of those gone before, downloaded information and looked into funding. I even attended a Postgraduate Student Fair and found myself surrounded by kids I was old enough to parent. But. I could do this?

I can’t.

I’ve read the case studies. Bright-eyed eager (young) people with many, many awards under their belts and obscure research titles to their names. I’ve read the tiny success rates about securing funding and have looked in to alternative sources of funding, i.e. living like a pauper for six years, existing on Super-Noodles and crackers.

I would love to surrender my life to this dream over the next three years, or six years part time as I still have to work. I want to be immersed in writing and carry a notebook confidently into the nearest cafe, flick open a fresh page and jot down suitably astounding and genre-defying remarks.

I can’t.

There’s not much funding out there for a getting-on-for-mature MS blogger who fancies herself as the next Sylvia Plath.

So, I have a brand-new, shiny idea.

After much googling and sending-off-for-information, I have decided to retrain (perhaps) as … a carpenter.

Brimming with excitement, I laid out my life-altering plan to The Boss, aka My One-Time Best Friend over a coffee. After he stopped laughing, he asked why.

Well. After project-managing many building projects, I felt confident that I could carry out such an artisan craft, all by myself. And a training course would merely solidify all that I have learned these last years?

I like the word ‘artisan’ and pictured a future workshop where I would wood-turn and create dove-tails and suchlike. It would be a dusty, arty place, with deliberately mismatched chairs, a Scandinavian name and hand-thrown pottery mugs.

He mentioned that I could already cut architrave, lay floors and use a drill. I was even a passable tiler (praise indeed from The Boss, although I am an excellent tiler, if the space is small enough and I can sit down).

He queried my MS – would I be able to cope with the course? Yes – he could be my helper, if needs be. This didn’t go down so well, so I won’t be telling him when I go for the interview.

What do you guys think? Have I got enough drive to cut it in the World of Wood?

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Feb 09 2017
6 Comments
The Teenager

Letting Go Of The Reins …

mumWhen The Teenager was a toddler, I had one of those Maclaren buggies.

Lightweight and foldable, it was easy to navigate.

Especially for The Toddler, who quickly learned how to propel himself forwards with a sudden thrust, hoist the pram onto his back and toddle away as fast as his little legs could carry him.

We moved on to reins. He ran rings around me, literally, and they were quickly discarded. I was left to dash in all directions, grasping hold of a chubby wrist before he could come to harm or raid a nearby fruit and veg stall.

Now he is approaching 18, I am going through an accelerated crash-course in letting go of the bonded reins. I have taught myself not to grab his hand when we are crossing the road, remind him to brush his teeth or check he has his house-key.

Which is a shame for my spare-key-holder as The Teenager discovered one evening. Having left his key at home and unable to rouse me by fishing an array of plastic bottles from our recycling bags and chucking them at my window – I sleep spectacularly soundly – he called my friend who cursed the entire 40 mile round trip to let The Teenager into our house at 11pm.

This week, The Teenager went to a concert in Bristol, technically a whole other country away. I asked if he had the tickets for him and his friends. I queried his departure time. Asked if he had bus fare. Did he need a snack for the journey? A blankie? A teddy?

I joke, but when The Teenager sat me down for a gentle word, I listened. He is effectively a grown-up, although the youngest in his school year (I don’t hear the end of this – why he couldn’t have been born a couple of days later – to make him the oldest – or a few months earlier).

I explained to him that after almost 18 years of caring for someone, ensuring their very survival (a bit of drama – tick), it would inevitably be difficult to surrender the care role as quickly as he was assuming independence.

We bantered back and forwards, working out new ways of talking to each other. He agreed not to laugh at my new glasses (for reading only, not because I’m old – or maybe a tiny bit old) and I agreed to relax about his movements. I realised I didn’t need to know everything any more. I wasn’t arranging play dates, he was arranging days/evenings out for him and his mates. He could handle it. And so could I.

It’s a joy to witness a child you have nurtured blossom into adulthood and I’m in awe of The Teenager’s drive, passions and go-getting attitude. Despite everything we have been through these last few years, he is turning into an incredible person (I am of course biased).

His teddy (it’s actually a yellow duck, called ‘Ducky’) is now safely tucked away, his job done.

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Feb 04 2017
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Emotions

Bored Now …

palletsThere’s a dissertation-sized hole in my life.

After an initial frenetic and unseemly hedonistic flurry of trash telly, food, books and gossip magazines, I’m very, very bored and can’t face another jumbo-bag of Bombay Mix.

It’s time to Take Up A Hobby, especially as I will also become an Empty-Nester this year.

I want to reassure The Teenager that I have a fulfilling hobby/social life and won’t be eaten by a pack of wild dogs, at home alone, surrounded by piles of old newspapers and junk mail while he’s away at Uni.

I have many options, some more promising than others. Inspired by The Great British Pottery Throw Down on telly, I investigated clay. Sadly, I don’t have an outhouse where I can build a kiln or a pottery wheel. Undeterred, I looked into air-drying clay, but you can’t really do that much with it beyond napkin rings and small plant pots, so another idea came to a dead-end.

I looked into jewellery-making and bought a magazine all about it. I know how to use pliers and a blowtorch, a pretty good start. I just don’t know how I’d cope with fiddly beads and delicate bits what with my dodgy MS hands. So that was that.

I gave up knitting just after my diagnosis and I gifted my guitar a couple of weeks ago. My sewing machine was donated to a friend years back and crochet confuses me. However, I can make mini ghosts from toilet paper, a bit of thread and a black Sharpie but that’s seasonal.

Upcycling pallets was my next great idea. I see a lot of pallets in my line of work. What if I were to take one apart and put it back together to make seedling racks, coffee tables or outdoor sofas? After having a look on Pinterest, I realised it had already been done to death. The other thing I see a lot of at work are sewer pipes but I can’t see anyone wanting to buy a table made from the stuff, even with the ewwwww/exclusivity factor.

So I’m back to what I know a teeny-tiny bit about – writing. I shall write. I will suffer for my art, drink black coffee and pace the length of my house, anguished and deep in thought. I will produce the Next Great British/Brexit/Scottish novel.

I do have an idea in mind. It’s gathering pace and I think it could just work. So I’m going to put up all my failed-hobby bits and pieces on Gumtree and invest in some hand-ground extra-strong coffee. I’ll tell The Teenager I’ve taken up ballroom dancing, but between you and me, I’ll be writing. Watch this space …

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