Tag Archives: work

Mar 19 2019
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Daily Life

Aw, No, Not Again?

My three worst MS symptoms are fatigue, nerve pain and brain fog, in no particular order.

To a lot of people, this sounds fairly manageable; we all get tired, a bit fuzzy in the old brain and we all have aching legs and arms? Yes, but, I’m only telling you the three worst symptoms, and there’s plenty more.

Anyway, I like to think I’m quite savvy with my MS comings and goings, yet it never, ever fails to surprise me.

Long story short, the MS fatigue is back with a vengeance and it means serious business. On Sunday, I felt so tired, I actually wanted to throw up. I flung myself on the sofa and was dead to the world for two hours. On Monday, I called in sick to work and went back to bed. Twice.

I went to work today (I have to, bills), navigated the terrain really well and luckily we finished early. My lovely boss even walked up the road and payed a cheque in for me while I sat on the door step of the house we are working at, feeling quite useful as I watched out for parking wardens.

Back home, I got out of the works van, stood on the ground, then my left leg gave way and I just collapsed. Bit embarrassing, extremely painful, hope the neighbours didn’t see.

So I have a flare up and it’s a bad one. I haven’t been like this for months. Every part of me is saying, ‘breathe, take it easy, it’s fine’, but inside I’m fretting. I’ve already missed so much time off work and studying has been pared back to the absolute minimum.

Brain fog has ensured that for the last two weeks I’ve run out of stuff to watch on Netflix and Amazon and am looking forward to the next series of ‘Married at First Sight’. Anything is easier than picking up books.

I’m trying to look after myself though – the boss makes sure I get to shops for food, he’s understanding about the time off and he cheers me up no end when we’re sat in the van putting the world to rights, as builders do. He even bought me a burrito today and expressed surprise when I swooped in on his leftovers, ‘nom, nom, first cooked food I’ve had in days‘.

I know this will pass, it’s just that awful sinking feeling when you know you’ve got to ride out the latest setback. I’ve instigated Code Red, the Ten Minute Tomato Rule – try ten minutes of everything. So laundry is in machine. Cat is fed (she’s on a Whiskas strike and will only accept Sheba – it’s a battle of attrition). I vacuum for one minute every other day and take nine minutes out.

It will all be fine. In the end.

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Jan 18 2019
6 Comments
Emotions

Unpredictably Certain

There is one thing I am sure of.

MS can and does leap out at any time, ruining plans, stopping me from working, pushing me back into bed or tripping me up, amongst many other scenarios.

Its unpredictability is an absolute given.

I was thinking about this today when I was in work, leaning (swaying) on a long-handled brush, surveying our latest building project.

I was wobbly on my feet, and as The Boss had slept in, I was also Costa-coffee-less. It was one of those days where nothing went right and we all got an early pass home.

I’m fortunate that The Boss is my best friend, and understands the ebbs and flows of MS like no one else; I work when I can, for as long as I’m able to. I can excuse myself, take time out and work at my own pace, depending upon MS’s unpredictability. I could never find a job to match it.

My work not only gives me a movable-structure, it also ensures I’m still able to pay my bills, get out into the world and feel an immense amount of satisfaction when I get home and know that I’m keeping my whole show on the road, despite everything.

It’s the same with my studies. So many people are surprised when I tell them I’m taking a PhD. I try to explain that it provides a huge amount of structure in a wholly uncertain world. I need it. It’s a framework of sorts. I’ve worked out what to read, and I read and make simple notes as and when I can. Five minutes here, an hour there. It might take me a few more years than I had initially planned, but I will get there as I have a mighty weapon.

Thanks to Disability Student Allowance, I have access to an entire team of helpers – tech support, study support, note-takers and many more people behind the scenes. When I graduate, my ‘thank-you’ speech will take a long time.

Back to that brush; nothing is certain in life and MS magnifies that. But by factoring in some certainties, I feel more tethered to all the things that are important and keep me grounded. This begins with a tight circle of family and friends and then extends outwards, encompassing studies, goals and dreams.

Without this structure, MS would win and I would be at its beck and call. It would be so easy to succumb to and its something I fight against every day. I pay for it though and I wonder how long I can push myself, yet in the grand scheme of things, don’t we all think this?

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Jan 12 2018
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Symptoms and Treatment

MS Is Not The Only Illness

breathingI don’t know about you guys, but MS is hard enough to handle without the extra winter bugs chucked our way.

It’s tempting to think that when you’ve drawn the health short straw, anything else will be minor, easy to handle.

I stand (slump) corrected: I’ve been off work most of January with a rotten, stinking cold and it shows no signs of leaving any time soon. To add insult to injury, I’ve lost most of my voice (I know, me?!) so I’m particularly frustrated.

However, as befits anyone starting the New Year with a commitment to Get Things Done, I’ve ticked a few things off my list:

  • I finally replaced the bulb in The Teenager’s bedside light.
  • I took the cat to the vet (again) to sort out her flea-bite allergy (again) and jokingly begged the vet to give me the same steroid injection.
  • I ordered a whole load of herbal teas online, inspired by a Christmas gift. They look nice on my shelf.
  • The Boss took me on a trip to Ikea, where I munched on some weird eggs in the cafe and bought a stack of tealights and a sad-looking plant.
  • I spent a whole day and evening debating with myself whether I should paint my living room black/very dark grey. Still undecided.

The worst thing about an extra illness is how MS interacts with it; if MS had any decency, it would take a back-seat and allow a bit of time to get through this whole new host of symptoms?

Not a chance – all the usual MS symptoms have been amplified x 20. So now I’m yet again pin-balling around the house as my balance is appalling. I’ve tripped up the stairs and down the stairs. I have bruises all over my legs and if I break one more plate/cup/bowl, I’ll … break another one against the wall, if only I had the energy.

I’m bored and fed up. Just when I think it’s over, it flares up again. I got my voice back for a day and caught up with my phonecalls. Then it died, probably to the relief of everyone, including the cat. I had a tentative day back  in work yesterday. Bad idea. Very bad idea. I listed, lolled and lay upright against the walls, until it was remarked upon by everyone else and I was sent on bonfire duty, which sounds a lot more exciting than it actually is – burning a load of stuff and making sure I don’t set the work site on fire.

As I sat there with a long stick, intermittently prodding the embers and wishing I had a bag of marshmallows, I decided that when I was better, I would absolutely, completely and totally … do something different.

But what?

 

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Nov 08 2017
4 Comments
Work and Studying

Working With MS …

dogAfter Sickness-gate with The Boss, things are at last returning to normal on the work front.

He hasn’t eaten for four days since his dodgy KFC (if only I were so blessed), and he’s still looking distinctly peaky, but yesterday I made him park up and go to the local One Stop Shop for some food.

He came back with four tins of Oxtail Soup (bleugh) and some white bread (really?).

I’ve mollycoddled him, asked him how he’s doing at regular intervals, texted him GIFs of dancing Minions, soothed his fevered brow and made sure he’s ordered a whole bunch of steel beams and cement for work.

It’s been a testing few days, especially as I have excruciating neck and back pain accompanied by electric shocks in my neck every time I move. I mentioned it to him earlier, expecting reciprocal sympathy and maybe an offer of a Domino’s pizza for dinner.

No such luck.

‘It’s different for you, you’re always ill, so if you’re always ill, it’s not like me? I’m at death’s door.’

Fair point. And perhaps The Boss and everyone who knows me in work has also got used to me being ‘ill’. I sulked a bit at this (we were stuck in traffic).

‘How’s that fair then? If I’m always ill, you should be considerate, kind and, well, caring?’

The Boss thought about this for quite a long time.

‘Yeah, we’re all mates, but, you fall asleep all the time. You always take a book to work, big ones with small writing. You finish early. We’re just used to you being … different?’

Another fair point. There’s not many jobs that would allow me to sleep whenever I wanted to, or take a book to pass the time when we’re waiting for a skip or a grab lorry. The Boss knows I’m brilliant, when I’m brilliant, and he too has built in compensation for when I’m conversely under par.

Which is actually a compliment and I take it as such.

Working for a friend, who rescued me when I was sacked from my previous job due to MS was a godsend. For both of us. I’d helped him start up the company years before, and karma brought the fortune full circle. I was able to fit into his company with no problem. It helps that I’m bossy – we’re good cop, bad cop with extra caffeine.

Sometimes, especially during this DLA-Depression, I love work, no matter how tired I am. The camaraderie, the ‘banter’, the normality of it all. Other times, I fantasise about being at home all day, being ill, giving in to it all.

Which is how I think the DWP would like me to be.

Ultimately, I may have no choice.

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Mar 30 2017
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Work and Studying

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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