Monthly Archives: January 2014

Jan 19 2014
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Blogging

I Think The Glass Is Half Full

Patrick

Patrick is my guest blogger today – although MS has been in his life since 1979, it was only in 1999 that it changed from mild RRMS to SPMS:

Like nearly all of you I’m an MSer. My first relapse was in 1979. I was 25 and newly married. A problem occurred, my bladder emptied itself and I had no control over the event, there was a feeling of total helplessness.

The nightmare scenario did not return. Being a typical bloke I did not go to a doctor, I put the whole thing down to stress of trying to be an antiques dealer.

Next problem was 1994 when I had double vision. I was frog-marched to my doctor who referred me to a neurology consultant. Meanwhile the double vision went away but I was in the NHS system. Six months later the consultant said I had multiple sclerosis and to book another appointment for 6 months down the line.

Back at home I looked up ‘multiple sclerosis’ in the Encyclopaedia Britannica. I learnt it was an incurable disease affecting the nervous system. I was none the wiser.

Someone at work suggested I go to the local MS Therapy Centre near Aylesbury. There I picked up pamphlets from the MS Society and slowly I learned more about the disease that was not affecting me.

In 1999 I went on a 16 mile dog walk around Ashridge estate and cooked supper for the family. Then slowly progressive MS began to emerge, maturing into something that now has a profound effect upon me, my wife, our three children and our friends.

At the start of 2014 I have severe foot drop in my left leg, I can only stumble a few yards without my rollator, my sense of balance has gone AWOL and I have to do intermittent self-catheterisation. I am not allowed to drive and In 2012 I had to give up my career as an international computer geek. What else has MS got in store for me?

Today MS has turned the life of my wife and myself upside down. She helps me to beat it. I talk MS to students, nurses, and anyone else who will listen to me. I also run the website www.aid4disabled.com. Through networking I have met a wide range of people who help and encourage me.

Yes MS has forced a complete change in our lives and yet we survive. I’m reasonably content, can still do things that I enjoy but nonetheless I’m hugely frustrated.

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Jan 17 2014
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Emotions

The Worst Friend Ever?

friendsI am a bad friend.

I’ve been so busy adjusting to a new life with MS that I’ve completely forgotten my friends are also adjusting to having a friend with MS.

Now the dust has settled, I’ve crawled out from my hermit-like existence and surveyed the Friendship Damage. It’s not a pretty sight.

True, some of my friends have stuck by me through thick and thin, put up with my self-pitying monologues and wiped my tears. Others have disappeared, perhaps fed up with feeling they have to preface every conversation with, ‘I know it’s nothing like what you’re going through, but…..’

I rarely go out in the evenings, and if I plan to, I more often than not have to cancel – it’s impossible to know from one day to the next how high or low my energy levels will be. So I end up even lonelier, even angrier with myself, my world shriveled into a husk of its former self.

To make myself feel better, I stockpile books and trashy magazines, record TV programmes I really don’t need to watch (Big Brother?), cook comforting foods and hug the cat even tighter. Not the best recipe for getting back into polite society, it’s a damning vicious circle. So how can I rectify this situation?

Perhaps launch a Paris-type ‘salon’ – where I host scintillating evenings chez moi whilst I recline on my sofa, introducing my dwindling band of friends to each other? Start a book club? Chez moi? Or put out a ‘yoo hoo! I’ve got energy, who fancies going out?’ call whenever I can muster the strength to apply eye make-up without looking like Alice Cooper?

This is not how I envisaged my life at 40. My world should be opening up not shutting down.

So this is an apology to all those friends I have neglected and who have left.  I know there’s nothing I can say or do to bring you back into my life, but we had fun while it lasted? To the friends who are (thank goodness) still in my life, this is a Thank You. Your support has seen me through the very worst of times. The best of times are yet to come…

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Jan 14 2014
10 Comments
My Ramblings

Don’t Care….

care crisisCare workers are much maligned, and often with good reason.

However, I recently spoke to a carer who threw some light on what it’s really like.

She earns the minimum wage, is on a zero-hours contract and knows that she is at the mercy of her boss.

She can be dismissed at any time, forced to take on extra hours at any time and never knows from one week to the next how many hours she will have. She works with clients who have complex medical problems, is expected to administer medication and frequently has to break health and safety rules.

Here’s just two of her typical daily calls:

7.15am – 8.15 am – use own car to drive several miles, first dropping her kids off at  a friend’s house. In the space of an hour, she will wash and dress the client, strip the bed, make the bed, empty urine bottles, clean up a spilled urine bottle, clean the bathroom, wash dishes, prepare breakfast, administer medication, prepare lunch for later, put laundry on, hang laundry from yesterday, iron a shirt, talk to client, pick them up when they fall, write up notes and fill in medication chart, sweep the floor, put bins out, help client with a daunting letter from social services, reassure client, make a cup of tea.

And all for less than £7.

8.15am – 8.30am – there is no travelling time between clients, so she will be late as it will take her 25 minutes to get to her next client. A 15 minute call (a favourite of care companies, detested by the care workers). Here she will administer medication, prepare a lunch for later, make a cup of tea, wash up, put bins out and talk to the client while filling in even more charts.

And all for under £2.

There is then a 3 hour gap. As she lives 10 miles away and petrol is expensive, it’s not worth her going home (she has no petrol allowance for travel to and from her house). So she parks up and sits in her car.  By the time she finishes work for the day (a couple of half hour calls), she picks up her kids and gets home at 6pm. She has clocked up a mere 5 hours of wages.

With such appalling conditions, who’d be a carer? The responsibility is huge, the rewards minimal. The only winners are the care company bosses who coin it in at the expense of exploited workers. Most carers are dedicated and want to make a difference. Most leave within a year, worn out by a system that doesn’t care.

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Jan 13 2014
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Daily Life

Ikea. That Is All.

Ikea BluesThe Teenager needed a desk, so we bit the bullet and drove to the big blue box on Sunday.

‘Mum, why is Ikea, like, all yellow and blue?’

(weeps into steering wheel) ‘Er, Swedish flag?’

We parked up alongside thousands of others and joined the masses who were swarming through the doors. Only the cafe was open so we followed the same masses to the restaurant.

One rubbery-looking bargain breakfast (The Teenager) and a grotty coffee (me) later, we got in line to follow the infuriating, snaking queue past everything we didn’t want until we got to the desks. Ikea appears to be a destination of choice for wandering tribes of families clutching bags of tea lights and pushing empty ankle-snapping trollies, smugly superior in the knowledge that they watch Scandi-dramas on BBC4 every weekend with a few bottles of Swedish beer.

‘Oh, decisions, decisions! Should we go for the (very bad Swedish accent) Glivarp or the Norden table? But, oh, the Melltorp is divine….darling, did you pick up the tea lights?’

Anyway, desk. Sorted. Scribble down where to pick it up. Swivel chair? Check. Onto the pleasantly-named Market Hall where I whisked The Teenager swiftly through to the bay where we attempted to lift a couple of one-tonne boxes onto a wonky trolley.

Joined the long queue, where The Teenager decided to abandon me and buy an ice cream (‘had to, only 25p’). Pay, pick up a couple of catalogues (hard currency among my friends) and join the masses at the supersized lifts. Car, struggle, swearing. Home.

Then comes the fun bit. Let’s just say, who knew a swivel chair could be broken down in to 150 different components? Who knew I would break down, allen key in sweaty hand, wishing I had bought another packet of mini Daim bars to soften the blow?

Chucked the cat out of the discarded boxes. Cried a little bit more. Chucked the allen key against the wall. Finally, desk assembled (drawer’s a tad loose but don’t tell The Teenager, it’s dark in his bedroom, he won’t notice).

End result – one Happy Teenager (shock). One shell-shocked parent. I was reminded of a van I saw on the motorway last year. Their slogan was ‘Why DIY?’ Why indeed….

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Jan 10 2014
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Work and Studying

Plots And Plans

world dominationWhen I was first diagnosed with MS, a trusted health professional asked me, ‘so when will you be giving up work then?’

An outdated concept perhaps, but it got worse.

By the end of the fateful day I disclosed my MS at work, plans were underway to get rid of me as quickly as possible.

Just over a year later, and after not taking the very obvious hints, I was unceremoniously sacked on a dreary Monday morning.

Work and MS. It hasn’t really been a great story for me so far. On the bright side though, my friend has been employing me for over a year now while I look for a new job. The downside is he doesn’t run a cool cafe or bijoux boutique, but a construction company.

I normally work from home doing boring thrilling admin (pyjamas, toast and cat – hope the boss isn’t reading), but sometimes, if I promise to behave, he allows me on site. This week, I was let out to drive a mini dumper truck. Basically sitting down all day, tootling up a lane and back. Not that different from sitting down all day tootling to the kitchen and back, except I had an emergency stop button and the coffee was lousy.

I was given a quick lesson first, ‘this is stop, this is go and this is a steering wheel.’ Yup, got it. Woolly hat on and I was ready to go. To cut a long story short, it’s not that exciting after the first couple of goes. The highlight of my day was waving to a toddler who was peering through the window shouting ‘Bob! It’s Bob the Builder! But mummy, it’s a girl!’

Anyway, as I was tootling along, I realised I really should get a proper job. I’ve tried, I really have. I’m signed up to all the job sites, I scroll through pages and pages of thrilling career opportunities but still there is nothing out there. I’ve moved seamlessly from being restricted by childcare commitments to being restricted by MS.

I know I’m lucky. I couldn’t ask for a better boss, I’ve learned a huge amount and can now read architectural plans like a pro. I even have my own pink drill (honestly). But plans are afoot. I can’t go far in the construction world when I can’t even go up a ladder.

But you know what? I’ll miss the bacon sarnies, the camaraderie and the filthy jokes. What other job can offer all that? Answers on a postcard….

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