Jan 10 2014
12 Comments
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An outdated concept perhaps, but it got worse.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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Jan 08 2014
14 Comments
Emotions

For My Children: Parenting With MS

childMy guest blogger today is a mum, psychologist, health researcher and MS survivor. She writes a brilliant blog at memsandbeingmum – take a look!

Anyone who has been diagnosed with MS knows this is big. The implications of your diagnosis for your children are huge, though in many respects are as yet unknown. Like so much about this condition, you are left with a cloud of uncertainty under which you must continue to raise your precious loves.

Like me I am sure many of you read the information and depending on what and where you read it, it will mean different things.

At the very least your kids are a lot more likely to get MS than a kid whose parent doesn’t have MS. 20 -40 times more likely than someone who doesn’t have a parent with MS. Shit.

I had unknowingly passed on my blue eyes, a love of musicals and a genetic vulnerability to MS.

I spent a lot of time feeling guilty about this. When I didn’t feel guilty I felt terrified. Then sad. Then a bit angry. Then sad. You get the idea… What I have learned this year though, and New Year seems a good time to reflect, is that remaining in the sad/angry/guilty ‘fug’ was not going to help my kids.

So. I began to think how I would want them to respond to their MS if it did become a reality for them. Just thinking like that was a pretty painful process, as you can imagine. But once I started it became quite clear.

Their response to it would undoubtedly be informed by their mother’s response to it. By the extent to which they saw their mother fight for her health. By the extent to which they saw MS dictate to her what she could and could not do. By how flaky she was. By how strong she was. I would want them to think “well, it never stopped Mum doing anything” and then bugger off and climb Kilimanjaro or something equally wonderful and exciting. Because that is what I want for my kids. The same as any other parent. I want their life to be wonderful, adventurous and exciting. Happy and healthy. Full of love. I want them to be able to ‘dare greatly’ because they feel strong and fearless. Because they know they are loved.

For them to do this, I need to live my life fearlessly. I need to be strong, happy and to love them and my life fully in spite of its challenges. I can make a practical impact on their views about food, what they eat, if they exercise and how they can live an optimally healthy life. Above all though, I do not want them to feel afraid if MS comes into their life. Into their brain. When I began to think in this way I was flooded with a new energy to face the future. It all began to seem quite simple. I am doing it all, for them.

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Jan 06 2014
16 Comments
Emotions

Banish That Guilt

guiltEvery New Year, we’re bombarded with articles telling us how to ‘eat guilt-free’ and ‘enjoy low-fat treats without the guilt’. This comes straight after the very same publications have told us to hang the guilt, it’s Christmas.

Guilt. It’s a strange old thing. I’ve been reading through all the emails I’ve had over the last year from my blog and the one theme that comes through very strongly is guilt.

You guys have shared with me your most challenging stories, the hell of limboland, the shock of diagnosis and your fears for your families and future.

And in addition, there are often the words, ‘I feel so guilty – my MS isn’t as bad as other people’s.’ Or, ‘do I have a right to feel so devastated when I’m still relatively healthy? It makes me feel guilty.’

I feel the same. My MS was pretty bad initially but my relapses have stopped since Alemtuzumab treatment (how long for, who knows?). I felt a huge sense of guilt – it still hasn’t been approved by NICE, so I was simply in the right hospital with the right neurologist at the right time. Most of us who would benefit from this treatment don’t have access to it. At one point I thought seriously about closing the blog as I didn’t feel I now had the right to talk about MS as ‘it wasn’t as bad as other people’s’.

Let’s backtrack though. How should we deal with this guilt? Refuse all disease modifying drugs so we can truly experience MS at it’s worst? Or if our symptoms are mild, should we ignore the fact we are still living with a degenerative, incurable illness and therefore deny ourselves access to support? No. MS is not a competition (although there are people out there who think it is ).

MS is individual and our life circumstances are unique to us. MS affects us all in different ways, physically, mentally, socially. Guilt, on the whole, is an unnecessary emotion. It brings nothing positive and holds us back from moving on.

This year, I am going to banish that guilt. Instead of feeling guilty, I am going to channel my energy into campaigning and raising the profile of MS. In 2012 when I started this blog, people from 31 countries had read it. In 2013 it was 108 countries. This blog might just be a drop in the ocean, but in my own little way I hope I can make a difference.

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Jan 03 2014
10 Comments
Daily Life

I Resolve To Be Totes Amazeballs

fireworksA very Happy New Year to everyone!

At the stroke of midnight on the 31st, I threw off the debris of a long year and became instantly regenerated. A bit like Doctor Who.

It’s exhilarating to wipe the slate clean and imagine how much better this year will be. This euphoria generally lasts until the 3rd or 4th of January when we realise we’re still the same old person. Sigh.

Anyway, this year I resolve to be totes amazeballs, at least until the end of the month. My resolutions are:

  • Stop using youth slang. Oops.
  • Embrace every challenge rather than hiding under my duvet.
  • Master the art of cooking rice (yup, this was on my list last year too).
  • Learn to play the saxaphone.
  • Work out what I want to be when I grow up.

I got the chance to try out two of these when my oven died a slow death. With an Ocado delivery packed with oven-cook food on its way and The Teenager due back on Saturday, it was a mini crisis. But I remained calm and avoided the duvet temptation. To cut a very long story short (tears and foot stamping), it will be fixed today and I can now cook rice as the hob works fine.

Life is slowly getting back to normal after the bright lights of Christmas. School starts back on Monday, the washing machine will once more be pushed into full service and I will bear witness to every high and low of The Teenager’s football team. I know far more about the Premier League than I ought to.

So here’s to 2014 and all that it will fling at us. This will be the first year in a long while I am not a) waiting for an MS diagnosis b) being bullied at work c) being sacked for having MS d) coming to terms with an MS diagnosis. Totes fab…

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Dec 29 2013
6 Comments
Daily Life

You Can’t Argue With MS

play-doh brainAlong with sprouts, bad telly and a chocolate overdose, Christmas just wouldn’t be Christmas without a few arguments.

I now know I will never win another one as long as MS insists on using my brain as Play-doh.

I used to be quite good at thinking on my feet, remembering the punchlines to jokes and telling anecdotes without losing the thread halfway through. I could also hold my own pretty well in an argument or disagreement.

Those days have passed and I now sit with a slightly perplexed look on my face as I work out my response to a point made ten minutes earlier. In the spirit of fairness, I reckon us peeps with MS should be given a few allowances when it comes to arguing:

  • We should be given prior notice, giving us time to think of some clever and witty retorts.
  • We should be allowed to take notes during the aforementioned argument. A personal scribe should be allotted if, like me, your handwriting is now worse than your neurologist’s.
  • We should be granted ‘argument breaks’, allowing us time to gather our thoughts (and energy). Lucozade should be supplied as standard.
  • Similarly, a sofa should be made available if we start yawning, and the argument rescheduled for a more convenient time.

I’m resigning myself to the fact that I am now a pushover when it comes to arguing, although when The Teenager starts one (all too frequently over this festive season), I end up falling back on that age-old parent phrase – ‘because I said so’. Which isn’t very original, but you can’t argue with that one. This is normally followed by The Teenager storming upstairs and blasting out his music.

To be honest, I don’t really miss point-scoring and the hollow victory of winning every argument. My initial frustration has given way to calm acceptance and I have now added it to my list of things I have lost, along with heels and staying up past my bedtime.

So the next time an argument brews, I will stumble inelegantly away or just stay put and use one of The Teenager’s favourite phrases, ‘talk to the hand’..

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