This week I’ve had to leave my job as a secondary school teacher. After soldiering on for 12 years with MS, the job has just become too much. My employer is being brilliant, helping me to access my pension on the grounds of ill-health but I feel like I’m floundering around, unsure what to do. I’ve also been speaking to my MS nurse about the possibility I’ve moved onto the secondary progressive phase and I’m not sure how to feel about this. Any advice out there on either stopping work or SPMS?
First of all I take my hat off to you for trying to continue working.
I’m also SPMS and still trying my best to carry on working, it is hard, physically and mentally.
For the first 5 years I was doing well, it was a struggle but I could manage, but over the last 2 years things have slowly got worse.
At the moment I’m down to 4 days, and my company have made good adjustments, including opening up a new position for me.
I think though that being finished on ill health is looming, but I’ll continue as long as I possibly can.
I guess being SPMS your not on DMD’s ?
Currently I’m on a trial study for the Simvastatin drug , which is a trial to see if this drug slows down progression, the study is being run over 3 years and until it’s completed no body on the trial knows if they are on the actual drug or a placebo, not even the consultant knows.
Personally I think I’m either on the placebo or the drug just doesn’t work, at least not for me anyway.
I know this may sound daft but being SPMS you can at least see how you are progressing, my sister is RRMS and has had a bad time with relapses not knowing when the next one will come, and her last one was so bad that it actually left her a lot worse off than me, so perhaps in an odd way SPMS is more predictable and perhaps less stressful, if that makes sense.
As I’ve only been discussing secondary progressive with my MS nurse this week, I am still taking Tecfidera - although I have to say I wouldn’t be sorry to see the back of that! Having said that, I’ve been suspicious of my MS progression for a while now and after reading about SPMS and speaking to the nurse, the description seems spot on.
I was very sad to give up work, but I just think it’s the nature of teaching that the job has so many demands (not just teaching but planning, marking, admin & more). My employer has a close relative with MS and was so understanding and made loads of adjustments for me, including letting me go part-time. It was wholly my decision to call it a day after getting cognitive problems (my head’s just mush on some days), and worsening of a tremor in my hand that makes even using a knife and fork impossible.
Sorry if I seem like I’m moaning, I think I’m just feeling a bit sorry for myself at the moment.
I’ve not heard of Simvastatin (I’ve spent a long time burying my head in the sand about my MS). The trial sounds promising, it would be a real shame if it didn’t work. It must be strange not knowing if you’ve got the placebo or the real thing. Not great for you, but if it is the placebo, perhaps the real drug might work.
Thanks for your words of support. Take care
Hi Janet, I had to retire from work on ill health grounds when I was 47 in 2000.
I had always been a fit, busy person, but had to learn to relax and slow down…the MS made sure I slowed down!
In the 20 years since I`ve been retired, I had many hobbies…all new to me back then.
These include;
card making, writing short stories, jewellery making, Christmas decorations, making aprons, shopping bags, rag dolls, carry cots, cross stitch.
This year, mainly due to lockdown, I bought a new sewing machine with a stop/start button so I didnt have to work the foot pedal with my hand.
I`ve made many things for charity, such as cushions, masks and small quilts.
Do you have anything in mind to help you pass the time away?
Good luck and thankyou for giving a new generation the chance to learn. Bless you.
Boudsxx
Hi Bouds,
Thanks for your kind words. I’ve spent over 20 years teaching English so I’ve been in touch with a company that publishes resources for the English school curriculum. I thought that, given the years I’d put into the profession, I may as well make some cash out of the wealth of resources I’d accumulated! I also quite like the idea of some voluntary work but I’m not sure what. I have a bad tremor in my left hand so I’m a bit limited.
Best wishes,
Janet xx