Jan 16 2013
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Symptoms and Treatment

Eye See

Every morning when I wake up, I’m temporarily half-blind in one eye for around a minute until it clears. It’s not painful, just annoying and tricky when I’m already slightly unbalanced on my feet when I first get out of bed. This has been going on for a while now and I’m starting to get worried.

I’ve avoided asking for advice about this as I don’t think I want to know, if that makes sense. Is it another symptom of MS or something completely unrelated? Unlike a lot of people with MS, I have never had optic neuritis or other eye problems and have always prided myself on having near-perfect sight.

I also don’t want to look like a hypochondriac and unfortunately MS can make us feel that way. There are just so many endless symptoms and odd things that can happen. I don’t think I have ever analysed my health in quite so much detail before. I bore my friends and I bore myself and it makes me feel old before my time.

To be honest, since the Alemtuzumab treatment, I have been lucky not to have had another relapse, so all the health problems I have at the moment are minor. The big problem happens when I have several of them on one day. Unsteady balance is fine on its own, but throw in fatigue, twitching and a numb arm and it can be pretty grim.

Anyway, enough of the boring stuff. I am off on a work field-trip tomorrow,so a nice easy day for me. We’re driving 40 miles out to a site where the boss might be contracted to do a lot of the building work with a team of labourers. Obviously if he gets the job, I won’t be commuting there every day, so I will be nice and warm at home, sourcing materials online and perhaps popping down once a week to check everything is running to schedule.

I’ve also got my monthly Alemtuzumab blood test this week, so maybe I will bring up my wonky eye. And pray they don’t think I’m just another hypochondriac….

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Jan 15 2013
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Work and Studying

Why Work?

Quite soon after my MS diagnosis, a few people asked me when I would be giving up work. I was stunned.

Surely now, more than ever, I would need the security of a routine, wages and the confidence boost a rewarding job can give? It seemed to me that to stop work was an old-fashioned view and had no place in the 21st century, when there was so much understanding and support in place.

I stand corrected. Recent research uncovered the depressing facts:

  • More than 75% of people with MS report that the condition has impacted their employment and career opportunities.
  • Up to 80% of people with MS stop working within 15 years of the onset of the condition.
  • Up to 44% of people with MS retire early due to their condition.
  • People with MS lose an average of 18 working years, assuming a retirement at 60.

The report states that with the right support, people with MS could continue to live full and productive lives for much longer, yet during periods of economic downturn and job losses, people with long term health problems feel especially vulnerable.

Research shows that many employers lack knowledge about the condition and may not always understand that the needs of employees with MS can and should be accommodated in the workplace. MS is a ‘hidden disease’ and the extent of its impact is not visible to others and over 80% of us are affected by fatigue.

In my case, my chosen career path has veered off in a completely different direction than pre-MS. I was steadily building towards a new career once The Teenager was old enough for me to work full-time. I am a matter of months away from completing my second degree.  It’s ironic. Just when my whole life was opening up, when I could put the years of child-care behind me and finally take on a much fuller role in my career, along comes MS and puts paid to my plans.

Life has a funny way of turning round and smacking us in the face when we least expect it. I could either crumple or make the best of a whole new situation and right now, I’m planning to work for as long as I possibly can.

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Jan 14 2013
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Work and Studying

Pass Me The Dinosaur

Who knew? Building work is a bit like being in an operating theatre and I seem to be getting much better at identifying and passing each tool to the boss. When he’s under a bath or sink with water leaking  out from somewhere, speed is of the essence. Unfortunately, sometimes my hands and brain don’t seem to agree, but I muddle along just fine.

I worked on Saturday, my last day with the woman who calls me Alan. The job is almost finished, the skip is twice as full as it should be and I will be sad to say goodbye. It’s been a crazy time and I’ll miss Trixie, the massive dog I sneakily buy treats for.

Anyway, all I had to do was unpack the bits for the sink, toilet and shower, lay them all on the ground and pass them to the boss along with the right tool. Simple.

‘Flathead’. ‘Yes, boss’.

‘Phillips’. ‘Yes, boss’.

‘Smaller Phillips.’ ‘Yes, boss’.

‘Push fits and isolator valves’. ‘Er, um, oh, yes boss’.

‘Adjustables’. ‘Huh??’

‘Don’t worry, I’ll get them myself (rummages in tool bag for ages, sighing dramatically)….these!’

‘Oh, the dinosaur!’ I grabbed them from him and moved the two bits together and actually, it really does look like a dinosaur.

Building can be a tedious and boring business at times, so anything vaguely comical (apart from me being called Alan) is good. I wandered round tidying up, chucked the brush around a few times and we were almost good to go. Until the boss realised the sink was leaking. I passed all the tools, one by one. Then he said, ‘Pass me the dinosaur’ with a pained look on his face. Result! My mission now is to rename each of the tools for a laugh.

I got home tired but happy. Then I noticed that my university books had been delivered. I don’t even want to think about studying, drafting essays or cramming for the exam. It all seems rather pointless, as the career I had planned for when The Teenager was old enough will now probably not happen thanks to MS, but I’ll worry about that another day. I would much rather work out what I can re-name a chisel. Or a circular saw.

Life’s too short to take too seriously…

p.s. where is the snow??

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Jan 12 2013
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Daily Life

Bring On The Snow….

We are overjoyed in our little household that there may be snow on the way. The Teenager is happy because it could mean a day or two off school. I’m obviously not happy about that, but I love snow. Apart from it looking pretty, I love it because it makes some of MS’s horrible side-effects socially acceptable. Honestly!

Let me explain. I have foot drop. Some days it doesn’t happen (but you’re always waiting for it to) and some days it’s constant. Wandering around the shops is not always an attractive option, It’s more a case of smash and grab a few groceries and head home. But if it snows, we all belong to The Ministry of Silly Walks. Foot drop is hidden when you’re trudging through snow. Everyone is watching where they put their feet, not just me. It’s lovely.

And if I fall over, well, lots of people do in the snow, and at least there should be a soft landing. I also like the suspension of real life and the feeling that we’re in the grip of a national crisis. We start to look out for our neighbours, whoever gets to the shops first buys milk for everyone and we smile as we walk/stumble past other people in the street.

I used to live in a country where it snowed for over half the year. Everyone was pretty blasé about it but I was like a kid at Christmas, ‘ooooh it’s snowing, look!’ ‘Yes, dear, it does that a lot here.’ Snow wasn’t very kind to me back then though. I skidded in my car and ended upside down at the side of the road, in the middle of nowhere. I clambered out and walked home, crying all the way. I wasn’t hurt, just stunned that snow could be so mean.

Then there was the time I was convinced I’d make a great skier. How hard could it be? Answer – very difficult when everyone else in that country was born with skis strapped to their feet. On the nursery slope (called nursery for a very, very good reason), toddlers whizzed past me at electrifying speed pausing only to point at the adult inching painfully forwards, legs akimbo. I called it a day and never went back.

Anyway, I am watching all the weather forecasts, as is The Teenager. Please, please bring snow!!

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Jan 11 2013
4 Comments
Blogging

Why ‘Stumbling In Flats?’

I’ve had some  messages asking me to explain the title of my blog, so get yourselves comfortable and I will tell you the whole sorry saga.

I’m quite tall for a woman, and I was pretty tall in school. I longed to be a dinky little thing, one of those cute girls the rugby blokes would be quick to take under their wing and look after. No such luck. So, I slouched. I wore Doc Martin boots, long skirts edged with tiny mirrors and grungy tops. All through sixth form, I was group-less, so belonged to the group of all the people who didn’t belong to any group.

When I was 18, I decided against taking up my place in University and moved to Europe instead. I swapped the grunge for crisp white shirts and smart jeans, and if I was feeling particularly adventurous, a jaunty neck-scarf. The next step was exchanging my Doc Martins for elegant, Italian-made leather ankle boots, with a glorious heel.

Well, it was a life-changer. I did not walk, I strode. I sashayed. Head  and shoulders back, I adored strutting my stuff. I had a bit of a setback in Poland though, when a bunch of friends and I  headed off to stock up on cheap fags and beer. We ended up staying in a dodgy hostel where we were told to leave our shoes outside the door. Polish tradition, no?

The next morning, my beautiful boots were gone. I cried. A lot. I drove back home in a borrowed pair of too-small flip-flops. Lesson learned, I saved up for another pair and never looked back.  Until MS came along. I may as well have been walking on stilts. I simply could no longer wear heels at all.

My ‘walk’ became a ridiculous shuffle, eyes downcast, watching the floor. Foot drop was the bane of my life. So, with a heavy heart, I gave my last two pairs of heels to a good friend of mine. It was a sad, sad day. And since then, the closest I have to heels are cowboy boots. How depressing.

I miss my walk. I miss striding and sashaying. I hate foot drop. But it’s happened. I have a whole bunch of beautiful flat shoes. But, hey, I still stumble…

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