Tag Archives: work

MS Is Truly, Horribly Awful. And Then Some.

disgraceIt must be that time of year, but the trolls are back out.

The usual complaints – I make light of MS, I haven’t suffered enough to understand, I am a disgrace. And so on.

So rather than replying to each individual email, here goes:

How dare I complain about MS when I am taking a Master’s degree? – If only you knew how much of a challenge this is. I have no career left; that’s in tatters. My inner compromise was to take on a job to pay the bills but which left me with a void once I got home. So I decided to try my hand at writing. It’s not going terribly well. A victory for the haters?

How lucky am I to have had Alemtuzumab treatment, so how come I complain about MS?  – Yes, I am hugely fortunate and there is not a day that goes by that I don’t think about this. And you know what hurts? I took this treatment first and foremost to be there for my son – as a single, divorced parent with 99.9% of responsibility for my son’s upbringing, I had to be there for him. My dad died of his MS symptoms when he was 35. I don’t really remember him. And every single day, I am grateful that my son will never face that.

I haven’t suffered enough to understand MS – there’s a reason I don’t blog from my sofa, when I can’t get up and my son cries. If that’s not suffering, I don’t know what is. And haven’t I ‘suffered’ enough, growing up without my dad?

I make light of MS – yes, I do. Sometimes. Read more of my blog – it varies, depending upon what is happening in my life. Some blogs are heartfelt, some are light-hearted. That’s real life, in all it’s glory.

I am a disgrace to MS – I might be, it’s a personal decision how you read my blog. If you want to see how a very normal, boring, fat(ish) woman responds to a huge change in life, read on. A disgrace? If disgrace means campaigning, then yes I do. If disgrace means being a boring fat(ish) woman with MS who just so happens to blog about it, then yes, count me in. MS is not my entire life, it is part of it.

I’m not disabled, so what do I know? – so I only walk with a stick when times are rough? I only fall down the stairs now and again? Or trip over and bang my head once or twice a month? Oh, ok.

I don’t know what I’m talking about – Yes, I do. I know way more than you when it comes to my own MS. MS is unique to every person. So why is mine less valid than yours?

If my detractors would like me to suffer more, be in more pain, have more injuries and give up work, then yes, I am an absolute disgrace to MS.

But, if there is something wrong with that last sentence, then I am, in my own little way, coping with MS.

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How Little Is Too Much?

duckWell, this relapse trundles slowly on.

I’m still wading through the days, clutching on to passing moments of clarity and tiny pockets of energy.

Thanks to Ocado, The Teenager is fully-stocked with his Special K and baked beans, his latest requests thanks to his new training regime (his muscles are shaping up nicely – very impressive, especially when compared to my flabby efforts).

The cat has her Whiskas and Dreamies. We have Bloo in the loo, milk in the fridge and blessedly, Ocado even delivers stamps. So on the surface, we’re doing just fine.

Take a look underneath and it’s a slightly different story.

The paperwork pile is a mess of unanswered letters. I haven’t taken my meter readings – too much effort to bend down into two different tiny cupboards with the torch on my phone to squint at the teeny weeny numbers.

The cobwebs are multiplying at an alarming rate. The vacuum remains silent. I’m still doing the bare minimum and it’s exhausting.

After waking today from a three hour afternoon kip (I mean, really), I tidied the kitchen then sat down. I opened the mail, then shoved it into a corner. Time for another little lie down. The smallest things take forever.

But I will not be beaten. I know I’m playing a tricky game. I keep on pushing myself, over and over again. It’s the thought of going back to those awful couple of years when I was coping with relapse after relapse. I just cannot return to those long, dark days, spent shut inside my house.

So I continue ‘as normal’. I still go to work (The Boss would totally disagree with this statement). What my colleagues don’t see though is my state of utter collapse when I get home. I still meet up with friends, ignoring my spaced-out state and heavy eyelids. I pay for it afterwards. But it’s worth it.

I just worry that I’m pushing myself a little too far. Apart from the relapse affecting my walking, speech and balance, I’ve now got a throat infection, making swallowing a real pain.

However, on a much, much brighter note, I had a wonderful phonecall from my MS nurse this afternoon. The MS team has recommended that I have a third course of Alemtuzumab (Campath).

There is light at the end of the tunnel. And this time, it’s not an oncoming train.

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Live to Work? Work to Live?

workI was having a chat with the boss the other day over Hob Nobs and coffee.

After my exploding (and very icky) skin condition brought on by the sun and a healthy dose of Herr Uhthoff, he seemed quite surprised at my eagerness to return to work.

My arms are still covered in the rash despite steroids, ice packs and much lamenting.

Thinking about it, I was surprised too. I said to him, ‘isn’t it weird that I know I’m going to feel rotten again coming to work, but I still want to? Does that make me strange?’

I guess it’s something all of us with MS who work will face at some point. It’s 50/50. In work, I know I’ll be tired, I know I’ll trip over, I know I’ll garble my words and flare up in the sun, but I still do  it. Why?

Perhaps because the alternative is too frightening to contemplate.

For me, it would be all too easy to make MS into a full-time job. I’ve been there, done that, way back in the bad old days. Hospital appointments, blood tests, a fatigue management course, support groups. They all take up time. Fitting them all around a job, a Teenager, a kitten and just running the house all takes its toll.

But at the moment, work is my personal statement and a yah-boo-sucks to MS – it’s something I’m clinging on to. It gives me routine and pride in myself, and I’m planning to do it as long as possible. Of course, if I had a hunky, tall, chiselled-jawed, sensitive and caring significant other who earned shed-loads in hedge-funds, I may think differently. But I’m the only source of income in our little cottage – The Teenager needs pizza and the kitten needs her Dreamies.

So, in reality, I will still stumble out of bed and get ready for work. Some days I might want to crawl back under the duvet and hide. Believe me, it’s very, very tempting. But there’s always Hob Nobs …

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The One Where MS Becomes Normal

memoryI was feeling very smug the other day in work.

We’re currently on an outside project and the sun was blazing.

I could feel myself getting hotter and hotter as the day went on, so I disappeared at carefully-staggered intervals into the shade and called my mum for a random chat or scrolled through Twitter or simply watched the sheep stroll past (It’s Wales, we were up a mountain).

Anyway, as we were wrapping up, I remarked, ‘Oi, boss, see! I’m not as red as I usually am! Result, eh?’

He glanced my way, burst out laughing and told me to look in a mirror. I did. Oh. Bright red, round face. But! I wasn’t lying stunned on the grass, flapping my arms like a hot-weather snow angel, felled by Herr Uhthoff, Master of Heat Intolerance. I was being proactive and mature (for once), taking time out to cool down before I collapsed in a soggy heap.

This made me think. Have a I finally grown up with regards to MS? Or am I just fed up shaking my fist at it, daring it to strike me down? Perhaps I am, and MS has fully integrated itself into my life, like some kind of tapeworm, but without the added advantage of rapid weight loss.

I decided to clock just how much I now regard as normal:

  • Tripping over the bath mat every single day. Also, doorstep, dustballs and the kitten.
  • Having to hold a cup of coffee with two hands and will myself to keep hold of it.
  • Dozing off at the good bit during telly programmes and dropping my bag of chocolate buttons.
  • Mixing up my words and making people laugh, when sometimes, I’m actually telling them something quite sad.
  • Forgetting simple words and using a lot of Italian gestures to make up the shortfall (quite a natty effect, I think).
  • Fumbling with buttons and zips (my own, tsk).

I’m also applying my new-found maturity to my studies. Before, I could sit for hours thinking about different ways to say the same thing in essays. Well. I now have a handy list. For example, if I want to give an example, I could say:

  • as an illustration
  • to demonstrate
  • specifically
  • for instance

Which means my essays are now full of lots of examples, but I need to find lots of examples to use the example phrases. Confused? Me too.

Anyway, it may have taken almost four years, but I think I’m now at the stage, largely through repetition, where what was once odd and disconcerting is now, well, normal life for me. I struggle to forget what life was like B4MS, not helped by my goldfish memory.

Did I tell you what happened in work the other day?

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Will Work For Donuts …

donutA lot of my friends seem to be shimmying up the career ladder at the moment.

Me? I’ve fallen off it and will probably always struggle to get back on the first rung (dodgy grip certainly doesn’t help).

It also didn’t help that my previous employer’s definition of making ‘reasonable adjustments’ to my MS included sitting me near a window, alone, in a faraway room – the staff kitchen no less (to combat heat intolerance, natch), taking all my duties off me and launching a bitter ‘get her out by any means’ campaign.

My job now is brilliant – who wouldn’t want to work with their best friend? And as the Project Manager/Chief Nagger/Design Bod of a construction company, I’m in my element. I roll out of bed (literally), chuck some work gear on, hide unwashed hair under a hat and I’m good to go, bacon buttie in hand. Bliss, and perfect for those unpredictable MS days.

Which brings me to my next point. I now choose my working hours – they fit round appointments, fatigue, and general meh-days. Me and my friend have worked out a flexible system and it works for us, plus it helps that I am of course totally excellent at my job.

But a little part of me hankers after a ‘real’ job, with a proper career path, dress-down Fridays, babies trundled into work during maternity leave, gossip in breaks and water-cooler moments. I’ve just caught up with Poldark on telly and have no one to share my, ahem, thoughts with (anyone outside the UK, please google Aidan Turner, you’ll understand my dilemma) .

Could I ever go back to a normal job? Could I work 9 – 5? Well, no. MS demands a certain flexibility plus a pretty decent employer. Besides, even getting past the initial interview would be a trial:

Scary Interviewer: And which skills could you bring to the table?
Me: Um, I speak Norwegian? And I’m super-organised *cough*.
Scary Interviewer: That’s nice. Anything else?
Me: I’m a team-member, I have blue-sky thinking and I can think outside the box.
Scary Interviewer: And any health problems we should be aware of?
Me: Um, well, kinda, p’raps.

(stumbly exit, drown sorrows in nearest Starbucks)

So, ok, the glittering career is gone, but when you know that 80% of people with MS give up work within 15 years of diagnosis, it spurs you on, no matter what the job. For me, my job is more than a job. It may not have a distinct career path, but what could be nicer than making people’s lives better and helping them to create their dream spaces? My job satisfaction is immense.

Should it matter the career ladder has disappeared or is quality of life more important?

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