I 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 …
It’s strange isn’t? I love my work and in fact at the end of last year became quite depressed, when the work was drying up (I’m self employed). Although that wasn’t the whole story (was it?) I’d just had a relapse, I was taken off my DMD and told I was probably transitioning to SPMS! Somehow it was just easier for me to justify my depression to myself as being due to lack of work.
I also intend to work for as long as I can. It gives me focus and helps my self-esteem.
Thank you for your lovely comment!
Although I haven’t been through your experience, I know what you mean. And I really hope you keep on working as long as you can!
Bx
Medically retired in 2012 but very happy doing website, increasing awareness of MS and being a service user. In fact I prefer it to my old job
As the previous person Debra said “I also intend to work for as long as I can. It gives me focus and helps my self-esteem” I agree totally + it stops me going bonkers and becoming MS-obsessed
That’s really interesting – it stops you becoming MS-obsessed. I think I’d be like that if I was at home. It would take up my every waking moment and would be horribly magnified, especially as I am the only adult in the house. There’s no one else to introduce ‘new’ topics!
Your website is fabulous and helps so many people!
X
Realistically speaking, the way I look at it is work while you still can.
Very true. Despite a lot of people thinking MS = automatic giving up job. I still get asked a lot about why I work.
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Your time at work will be your time. To face challenges outside of your home, Your work will keep or hopefully keep your mind off your MS. Im very proud of you for taking on this huge challenge that you will win and deliver and prove to yourself and those around you that MS will not dictate how you will live !!!
Exactly! Although I ‘take’ my MS with me, it’s a chance to get out and about, try new things, meet you people and discover hidden strengths!
x
Great post.cringed inwardly re: tripping over feet at work. I haven’t told anyone but people are v kind & rush to open heavy doors for me etc.
I have worked for 20 years & never realised the dignity that comes from a job, until I had MS, newly diagnosed.
As my neurologist says, there is no point in sitting alone at home, with spasticity.
That’s so true, about dignity and working. I can’t imagine ever not working at the moment, although it makes me so tired and painful. The alternative is far worse!!
x
Easier said then done BUT don’t let MS dictate on how you should live your life … Change the way you do things in order to accomplish what needs to get done
Exactly – it’s about working around MS, not letting it consume you.
I’ve got energy in the morning, so I get up early and do some housework before I go to work as I know I’m going to be shattered when I get home!
x
Focus on your tasks at work and let the work at home come second Out perform others at work, Get a raise and hire someone for your domestic duties
I’m really lucky, I work with my best friend! I helped him start up his company 12 years ago and now, when I need a flexible job, I have it. I choose my own hours, there’s no problems getting time off work for medical appointments or if I’m feeling ropey, plus I get to work with a great bunch of people.
It’s such a joy to wake up and looking forward to work 🙂
As for the housework, I get away with the minimum!
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