Aug 31 2016
2 Comments
My Ramblings

MS On Board

seatI was living in London when I was pregnant with The Baby and took the bus to work every day.

I was fine standing when the bus was crammed, but as my bump grew larger, and then even larger, I still wasn’t offered a seat.

Unlike today, where it could reasonably be assumed that I’m ‘just fat’, back then I was skinny with a, well, huge bump in front of me. Still no offers, despite my sad eyes and forlorn glances at people comfortably sitting down.

So perhaps I am a little sceptical about Transport for London’s new scheme, to aid travellers like me, with hidden health conditions – read the story here. It’s a bit like a blue badge for the Tube.

First, how are you supposed to flag up the fact you’re wearing a little badge on a busy, packed tube on a Monday morning when commuters are doing their London-best to ignore everyone else? Thrust yourself in people’s faces? Sidle up to a nice-looking person and eyeball your badge, hoping they’ll notice? (note to self – this could prove to be a most excellent dating tip – I could make a badge proclaiming, ‘I’ve got MS – Date Me!’).

Second, could I really imagine myself wearing one? I’m British! Will it mark me out as somehow different? Well, yes.

Third, we’re all sceptical people; blue badges for cars are notoriously misused and I doubt these badges will be any different. Plus, as with car badges, there will be the eternal refrain, ‘but you don’t look ill’. Even though it’s all about hidden disabilities, I fear the wider public still has a long way to go before accepting this notion.

And when do you fish out your badge and pin it on? With my dodgy MS hands it could take a while. Do you then unpin it on leaving the Tube station?

Believe me, I love the sentiment and I admire Transport for London tremendously for trialling this.

However, by marking us out as different, I fear we could lurch in to uncharted territory – must we broadcast to an entire Tube carriage that we have a hidden disability? I would far rather ask someone sitting near the exit if I could possibly have their seat and quietly explain why. In my experience with MS, people are really rather nice and understanding.

Except taxi drivers in Carmarthen …

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Aug 26 2016
8 Comments
Work and Studying

The One When I Argue With a Mini-Digger …

miniI love my job (the boss may read this).

It’s quite sedentary, excellent for an MSer, working as a project manager on a building site.

I deal with architectural plans on room-sized paper print-outs, customer’s wishes and all the rest that this job entails, mostly keeping the neighbours happy. I sort out who should be where, when and why. And if they’re not, why not?

My boots may be muddy but I enjoy pontificating, pointing and generally positing from an elevated position.

And so it was this week. I directed our newest recruit to the sewage drain and explained the brick-y stuff to our very handsome builder – not for nothing he’s known as ‘Handsome Dave’.

The Boss was happy; we had a newly-delivered mini-digger and dumper. I won’t boast, but I’m pretty good on the mini-digger (I get to sit down all day, what’s not to love?). There’s even a space on the dashboard for a cup of coffee, if I’m careful.

So far, so good. I sat down, showed off a little, then a bit more. Swing. Swoop. Swing. Get me.

I was trucking along, then paused when I had to take the mini-dumper to the pile at the front. Easy.

Problem was, it had rained. I tried my hardest, got the pile of mud to the bigger pile of mud out the front, positioned it carefully, and just as I was about to tip the contents, the dumper went all wibbly and started to fall.

What would you do?

If you’re me, you try to catch it as it’s falling.

So, I did.

Massive burn on my arm. Extremely painful.

I have a handy tip – never try to catch a one-tonne piece of equipment. I ended up at my Doctor’s, muddy boots removed and carried through the surgery when I explained what had happened.

‘Um, yes, I tried to catch a falling mini-digger. Is it bad? Ah. Really? Ah. Infected Right. I see?’

Long story short, I was soldiering on – I waited four days until the burn was so bad even the apprentice asked my why I hadn’t had it checked out.

As I apply the latest plaster and take the antibiotic, I still think I’m lucky that I have a job I love, despite the … setback …

In other news, I have written an extra 1,ooo words of my Master’s …

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Aug 24 2016
10 Comments
The Teenager

Flying The Nest … Almost …

teenagerThe Teenager is off to the Reading Music Festival.

He left with a huge amount of stuff a couple of hours ago. Early tickets.

If I read those sentences again, I sound almost casual.

Believe me, I’m not.

After 17 years (he only turned 17 last Sunday), he will be without anyone looking after him for 5 nights. Five whole days and nights. Oh, the possibilities.

The planning has been months in the making: the gear – tent, groundsheet, sleeping bag, super-duper mobile charger. I shelled out for a locker. Plus part-payment towards a gazebo when he’s there. The wellies, the thick socks. The sun cream.

Last night, he asked me if I could pack his bag if he put everything he was taking on my bed. Yeah, no worries. I’m the master of packing.

I got upstairs and surveyed the room-full of stuff to fit into a tiny bag. Out went the white t-shirts (really?), the jeans, the fourth pair of shorts, the shower gel, the toothpaste. I jumped on the bag and closed it. The wellies were non-negotiable.

In work yesterday I had a text;

‘Urgent, need funds for haircut’

‘You got your hair cut last week?’

‘Not Reading-fresh? Please?’

So, he had his hair razored. With a bit at the front, strangely reminiscent to those 80’s Aha haircuts? Anyway, we ran through the Parental Lecture. It started easily enough,

‘… son, Chris …’

‘Mum, I know what you’re going to say, and I, like, take it on board.’

‘… but …’

‘No, it’s fine …’

‘… but …’

‘Mum.

‘Can I just say  it?’

‘Mum. I know. No drugs, no women. Got it.’

‘Women? Who said anything about women?’

Anyway, he got the bus to town earlier and met up with nineteen other friends who will be sharing the gazebo.

I had a think, after taking some deep breaths. I should be proud? I should marvel at his desire to be unwashed and dazed for five nights. To worry that someone will steal his groundsheet?

I can’t talk. Shortly after turning sixteen, I took my backpack and tramped around Norway, The Shetlands and The Orkney Islands for six weeks. Without nineteen friends. All on my own.

And I came back almost unscathed.

Maybe I should just text him, see if he’s eating properly?

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Aug 18 2016
10 Comments
My Ramblings

Safe Haven or Prison?

homeI had a very interesting chat about the early stages of my MS the other day.

One thing that cropped up again and again was how isolated I felt.

The foot-drop, the stumbling, the jaw-dropping fatigue – they all conspired to keep me at home.

I no longer socialised, preferring to invite my few remaining friends over to mine instead, where I could lounge on the sofa, safe in the knowledge that they wouldn’t judge me or the amount of tears I cried. Or how much cake I scoffed.

I went out far less and began to place internet shopping orders for everything – groceries, books, a radio, even a packet of batteries. My lovely squishy sofa became a hateful place where I spent hour after hour sleeping my life away.

My window was a torture instrument, displaying an endless reel of everything I was missing out on. My kitchen morphed into an obstacle course, showing off the ingredients that lay rotting in the fridge and languishing in the cupboards. Meals were ready-made and unsatisfying.

In short, my home became a prison, and the more I was isolated, the more I became isolated. It seemed a vicious circle and one I couldn’t find an escape from. I realised I was in serious danger of living my life from my sofa, comfort-eating, feeling sorry for myself and developing a serious lounge-wear habit.

I don’t often talk to myself, preferring to offload to the cat instead, but this time I gave myself a shaking down. This had to stop. I used to love my house – it was a place where I was bringing up The Teenager. I had stamped our style all over it; it was fun, bright, comfortable and, well, home.

Over the next couple of months, I ventured a little further out. Ok, I got tired, I tripped up. I dropped a whole cup of coffee over myself. I started to think, who cares? And why do I care so much? It wasn’t easy. It was painful and embarrassing, but the alternative, that looming prison-home was far worse.

Nowadays, I have accepted that life will never be like before. Spontaneity has gone, never to be seen again. The rules have changed and I have to change with them or be left behind. I’ve worked out my high-energy points and low-energy points and put them to good use. I accept there will be down times, when I have to rest or pay the consequences. I make the most of the up times.

My house has returned to it’s former state – it is a place I feel safe and comfortable in. I love it. I love my squishy sofa. I love my kitchen – it plays host to fresh ingredients and a sprinkling of ready-meals and they happily co-exist. I have a stack of books ready for when all I can do is slump on the sofa, as elegantly as possible.

And now, when I’m having a really bad MS week, I’m tussling with my house again. I have a pile of uni books to read and I could do with wrapping myself in clingfilm and lying down somewhere quiet in a bid to lose weight.

My house could be a prison, or it could be a safe haven I can return to …

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Aug 12 2016
14 Comments
Emotions

The MS Olympics

ringsI’m enjoying the Olympics.

I’m also thinking, ‘you think that’s hard, try juggling The Teenager, Work, Studying and MS. Pah.’

Honestly though, I’m not really so mean-spirited, but I do sometimes think I put in an Olympic performance most days. We all do, don’t we?

If MS could be an Olympic sport, it would surely be the hurdles; you’d be standing there looking at a sea of impossible things to get over safely and with dignity intact.

Sadly, that’s not always the case; I would probably stumble flat on my face at the first hurdle, lie there for a while staring at the sky, humming gently to myself and let everyone else overtake me. A bit like life really.

Mind you, I think my performance could be vastly improved if I had access to an Olympic network of nutritionists, physios and mind-training-coaches. Plus a little bit of sponsorship wouldn’t hurt either – I would quite happily wear a discreet logo (or even a huge one) if it meant I had a few grand in the bank.

It’s interesting listening to the competitors speaking to the news broadcasters straight after their performances, especially when they lose – ‘I gave it my all, but there wasn’t anything else I could do really. I gave it 110%.’ How true. I need to bear this in mind when I come up short to my own expectations – I’ve passed many a day beating myself up for not doing this, not doing that. Or as an Olympian would say, ‘I had nothing else to give.’ Yes. So us peeps with MS are actually strangely similar to world-class athletes?

When MS strikes, things you take for granted become hurdles, things you can see you just have to get over. There’s no other way. Weird stuff like formulating a sentence when you’re shattered or trying to navigate a staircase when your balance is shot (me last night). Or attempting to pour boiling water into a cup without first-degree burns.

MS requires tremendous mental strength. We may not be physically able to do what others take for granted, but boy, do we have tenacity in bucketloads. It gets us through the day.

Therefore, I think everyone with MS and other chronic illnesses should give themselves a huge pat on the back. When the Olympic rings are packed away and the last firework goes off in the Closing Ceremony, don’t forget, we’re still here, trucking along, facing each day with fortitude.

And if we don’t come up to our benchmark ‘good day with MS’, well, ‘we gave it our all.‘

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