I’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 …
You have my complete sympathy. I too have had to completely restructure my life. After 2pm I am neither use nor ornament but by then I have done the work I can. But it always seems to be too much (nothing wrong with him..) or too little (why do you never help around the house…) I think one has to develop defences not just against the direct effects of the illness, but also of its fallout on those around us.
A brilliant comment, thank you! It really is about the fallout. Even at night after work, I’m so tired that The Teenager has had to learn that I’m pretty useless for lifts to the gym 🙁 So it happens both ends of my day, the beginning and the end, and all the while I’m trying to keep body and soul together!!
x