Tag Archives: work

The One Where I’m Put Into Storage …

storageThe Boss has finally noticed that I’m not operating at full strength over the last couple of months so has decided to put me into storage.

We’re working on a particularly large renovation so he hired a storage container for me to use as an on-site office, which means I’m within yelling distance, but far enough away to be able to doze off and/or daydream.

He bought me a MacBook Air for me to project manage everything and so far I have created some lovely colour-coded tables and notebooks. I’ve played around with the fonts and sizes and can easily pass a couple of hours highlighting and un-highlighting everything in bold or itallic.

My office also doubles as a mini-kitchen, complete with a table and chairs for the labourers to take their breaks. I have a kettle, microwave, toaster, fridge and radio, plus ample supplies of biscuits which is an ongoing struggle of avoidance. I also have a set of shelves where I have arranged (and rearranged) loo roll, cloths, tea-towels, kitchen spray, etc). It’s truly amazing what you can find to do in a storage container.

I miss being more hands-on, but my balance is shot, I don’t walk in a straight line and when I yawn, the labourers start yawning too. I’m a bad influence. So, The Boss does all the wandering around the site stuff, looking serious and important, then feeds all the relevant information back to me, which I promptly forget. After much trial and error, we’ve now developed a system of notes which he sends straight from his phone to my Mac. Genius. I then put them in the correct colour-coded table.

As I’ve been so poorly, The Boss has been picking me up for work recently and this is when the real work gets done. We brainstorm, which is quite funny as it’s my brain that’s playing up, but actually, it’s a good way to push projects forward as we swap ideas and chew over problems.

A couple of people have asked me why I’m so determined to stay in work despite feeling absolutely dreadful but I’d rather feel dreadful yet useful in work than dreadful and useless at home. I’ve been there, done that too many times.

However, I do have one fear. I remember as a kid watching a film where the baddie was hiding in a storage container at a port. The doors were closed and the last scene was of that container being craned onto a huge ship, bound for somewhere thousands of miles away. Every time I close my eyes (just for five minutes, lol), I worry that I’ll wake up on my way to China with nothing to sustain me but a packet of Kit-Kats and a half-eaten ham roll …

 

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What Lies Beneath

hardhatI’m becoming increasingly aware that I’m not really getting away with it at work.

And there was me thinking it would be the dead giveaways – the tripping over every single thing, the fatigue, the balance.

No.

It’s being ‘too well’.

MS, eh?  – you’re never too ill nor too well, eh?

I’ll explain: over the last four years, I have calibrated (shackled) myself to MS – so I now obey MS like a good servant and go to bed early, wake up early (in the dark) and more often than not, fall asleep on my sofa after work. That’s how I deal with the clinical fatigue and nerve pain. And it kills me, I hate it. But …

… luckily, I work for someone, The Boss, who also starts early. Result! Or so you would think. I truck up at 7am, yawning, the first person there, and catch up on a little light University reading. The Boss arrives, we chat over coffee, day begins. I then finish at 2pm.

And that’s the problem.

Honestly, I don’t mind being called ‘Half-Shift’. I can take the jokes, the swearing, the rib-nudging.

As the lone female in amongst upwards of seven blokes, I think I can roll with the punches and to be fair, I’ve developed a thick skin, which can only help me in the dating scene, no? Every cloud.

Plus I can speak knowledgeably upon many subjects, including drainage, tracking down antique architrave and where to source the best windows this side of the M4.

But, because I can hold my own, the shouts of ‘Oyyyyyyy-oyyyy Half-Shiiiiiiiift’ when I leave at 2pm are growing ever louder. And I’m not happy.

What they don’t realise is:

a) I earn less than them

b) Having to lie on the sofa for hours on end is not, NOT, a cushy life

c) I would give anything to have a normal job. One where I didn’t have a pink hard hat

So, yes, my co-workers have a laugh at my expense. And you know, no matter how hard I try to explain, they don’t understand. I’m not saying I want a ‘softly-softly’ approach, far from it. I’m made of far tougher stuff.

But, a wee bit of understanding wouldn’t go amiss? And what they don’t see is:

  • The ridiculous nerve pain
  • The twerking/twitching in my head and arms
  • The dead feet
  • The garbled speech (I cover this well – I’m Glaswegian!)
  • The utter soul-destroying fatigue
  • The endless days I have to take off work to recover from a spike in symptoms

I just wish, for once, they would be chuffed to see a peep with MS, still working, still trucking along. Despite everything. Rock and hard place …

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Simply The Boss …

mugJust when I think my life is bad, The Boss proves me completely wrong.

Not only is he juggling three jobs at the moment, he is also without a van, his phone and his hair.

I’ll explain:

A few weeks ago he was in a crash at a notorious roundabout. Luckily no one was badly hurt and it wasn’t his fault (it was an 84-year old, on his way to his birthday party, poor thing).

Sadly, his beautifully sign-written van (designed by moi) is a write-off and was sent to the Crusher Yard last week – a day of sad reflection for us all.

So he hired an interim van after much grumbling about lack of shelf space and roof rack. Last week he had to sort out the plasterer at one of the jobs, left his phone on the dashboard for a minute (d’oh) and came back to find the van broken into, the phone gone and half his tools as well.

As if that wasn’t bad enough, after sporting a Donald Trump-esque haircut for a while, he went to a new hairdressers and came out with a razor-thin cut, looking like someone I saw recently on Crimewatch.

And finally, to top it all, he’s had to put up with me going through an MS floaty-exacerbation-of-symptoms.

I worry about him.

At work today, I tripped over countless times. I took ten minutes to doze in the corner. All the while, he was on my phone, sorting out a new van, chasing up his new phone and working out which tools have been taken. He collects them as a hobby so this in itself was a monumental task.

Anyway, as I was packing up to leave, he said he’d worked out a plan for the week and ran through it for me. I gently reminded him I was having a blood test on Wednesday and seeing my neurologist on Friday, so wouldn’t be in work those days.

I left pretty sharpish.

As I got in my car, The Teenager sent me a text, ‘Sixth form party tonight, can you iron my jeans? Can I have some money?’

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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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