The 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 …
I fully understand and commend your desire to stay at work.
Although I have had to reduce my working hours and a variety of reasonable adjustments have been necessary I am determined to continue working for as long as possible.
I refuse to let MS take that from me without a major fight.
Also with a mortgage & 3 children I financially can’t afford not to xXx
Thanks Gail!
I definitely won’t give up work without a fight.
I know how lucky I am, to work with my best friend. I would certainly struggle to find a different job with the same amount of freedom as I have now. Mind you, The Boss is lucky to have me too, so it works both ways!
x
I’m with you on the work thing. Sometimes I think it’s crazy how much of my precious energy I spend working, preparing for work, thinking about work, etc. but I need to be useful. It’s one thing I’m not letting this stupid disease take from me. Ps. I love your new storage container! ?
I know what you mean. One of the best things about my job is not having to worry about what to wear every day and it really takes a lot of stress away – I just chuck on my builder’s gear – same thing every day. I have six of the same t-shirts and six hoodies plus work trousers. Easy! I just pop the Mac in my bag and I’m ready, plus it is really helping with The Boss picking me up every day 🙂
x
I think your boss is very caring and understands your needs. You are very lucky.
I was coming up to retiring and decided I would work for a bit longer, but then came the house move to Wales and MS. So with all the stuff going on with the MS ie getting my thoughts around it, new area in Wales and people etc I decided to retire properly. It wouldn’t be fair for my new employer to have to put up with me having time off for doctors and hospital appointments.
I say to anyone with MS, keep working for as long as you can. It will give you satisfaction and self esteem. If it hadn’t been for the house move I would certainly have carried on for as long as I could.
Joan (Wales)
I sure am, and hopefully this will enable me to work as long as I can. We’ve even discussed what would happen if I have to have another course of Alemtuzumab. You’re supposed to take six weeks off work to recover due to a compromised immune system, and at least if I’m up to it, I can work from home for part of that. It really helps to know I have a plan 🙂
I really hope your retirement is going well and you’re enjoying beautiful Wales!
X
To be honest I haven’t seen much of Wales. Until recently my husband was working 7.30am to 6pm 4 days a week and on Friday was grocery shopping plus any doctor or other appointments. At the weekend my husband went to the gym (only fair that he did something for himself) and housework, which my husband did mostly with the bit of help I could give him. The MS affected him as much as it did me, but in different ways.
I must say that I have never been offered any medication for the MS. From what I’ve read I don’t know if it would have done any good or not.
I’m really sorry to hear that and it must be quite lonely for you too.
There’s some fantastic local MS groups in Wales, although I know not all areas are served equally 🙁
Perhaps it might be an idea to meet with your new neuro/MS nurse and discuss possible treatment options?
x
Your boss sounds sweet. Mine is a pain the ass. No compassion whatsoever …. “crack on with it” is her attitude ?! So I do, but I’m looking forward to Karma biting her in the backside sometime soon ? love that new office ?
She sounds horrendous!! Fingers crossed that Karma comes quickly 🙂
x
??
🙂