I’m recently diagnosed and will begin treatment soon which I hope will help. I returned to work after Easter having been off for 5 months. At the moment I’m working half days and even this is tough going. I’m a headteacher and I’m finding any problem or challenge that crops up overwhelming and in my school these crop up everyday. I’m tearful and tired. I just want to run away from it all (well at least walk badly) I’m about to start a course of methylprednisolone to see if that helps my walking - I’m using a stick now. Steroids will make things more difficult for awhile- lack of sleep etc. have any of you got any coping tips? I’m normally quite a resilient person and in my heart I know everything will be ok but would greatly appreciate any advice and ideas.
I was only diagnosed in March (probable progressive). I am still working full time I am an Education Sister in a Children’s Hospital Intensive Care unit.
I am still learning but things suggested to me by the MS Team/ others:-
I do less work in my own time (used to take a lot home)
I work shorter shifts now does mean more days (used to do 3 or 4 12.5hr days a week)
I have been advised to take all my entitled breaks but away from PC, mobile, or any other brain stimulation including people, outside in the sun/ fresh air if I can
I make lots of meals for the freezer on days off so I don’t need to cook on work days
I also accept when I’m at work I might not get any home stuff done (I live alone so that can be hard)
I try to go to bed early on work days and have my bag, clothes etc laid out the day before
I have started using the lifts at work rather than use up my energy on numerous flights of stairs (I need to be able to walk my dog still)
Stress wrecks me and I need to practice but am trying to let things go and not get worked up, it has been better since I started Citalopram.
Practical things - stock up on Nytol or similar, or ask your GP for a few prescription sleeping tablets to get you through the steroids.
Longer term? Well, crumbs, you have l lot on your plate with a new dx and a full-on job that probably cannot easily be managed at a pace lower than full-throttle for problem solving and leadership and all the sort of things that a person who is feeling fragile is bound to find a strain. All I would suggest is, try to take things as the come and see what you can deal with and what you can’t. I wish that things were a bit easier for you.
I have no idea how you are managing full shifts in such a challenging environment!
Great advice. Like you I’d take work home but optic neuritis and weird sensation in my hand has halted this for the moment as I can’t use the laptop very well.
Im walking as much as possible with my stick in the fresh air to make me feel better and in case one day I can’t.
How long did it take for the meds to work? I’m going on to Tecifedera.
Take care Snowqueen, thank you for sharing and for your advice.
I’ve taken steroids for years and your Nytol advice is a godsend! I slept for an hour yesterday! I’ll go and get some tomorrow.
Your kind words really helped. That’s exactly it working half a day doesn’t mean less work or stress. Today I talked openly and honestly with my Chair of Governors and my deputy head- both of whom have been very supportive through the last eight month of my non stop roller coaster ride of symptoms. They listened and told me they will help in every which way and that what was being achieved so far was fantastic which really helped.
im hoping the Tecifedera will make a difference as I don’t think anyone will tolerate a part time Head for long!
i am also struggling with MS and work. Most of the time I cope ok but recently I’m beginning to suffer complete exhaustion mid afternoon, so much so that I have to close my eyes for as long as I dare whilst sitting at my desk. I have Rrms and take tec and think the higher dosage(started Saturday), is adding to my fatigue.
I am 59 and diagnosed early last year. I have a feeling that this stage of my life (stressful work as a company director), is coming to an end but am looking forward to a new chapter of my life , be that what it may.
Does anyone out there think that meds make you feel worse, so much so that on occasions I think of coming of it.
I have concluded that MS is not the end of life but the beginning of a new one and hopefully I will embrace whatever challenges Come our way. My wife is brilliant and walks every step of my journey with me so very lucky here
Fishgoose, I know the day is coming soon when I will have to give up work, but I keep going just by saying " yes I know it’s time for a new beginning, but just not tomorrow"
I am a full time teacher with MS - my school have been really supportive but from a school point of view here are some things that helped me…
getting a new chair at my desk - improved my posture and that really helped with fatigue
I use speech recognition sometimes when typing is too much (especially around report times!) My surfacepro has speech recognition included and I can work the computer with speech alone
i have someone to aid me with admin - data inputting, photocopying, carrying stuff, taking things places - this has helped too as im not rushing around all the time
a rest room - a half hour nap means i dont need to go home and waste the rest of the day, but am refreshed and feeling ready to tackle some more work
when resting I use apps such as digipill and powernap to help wake me up when not in a deep sleep and to focus on breathing adn wellbeing during my ‘nap’ times
I soon worked out who ‘my gang’ of helpers were, some of them are students who will help out handing stuff out for me or doing a small job - for me its the little things!
Hope some of those help. I also started seeing a good therapist which has helped me to let a lot of the stress go!]
i can relate to how you feel. I can see a different door opening as this one closes. I guess I’m waiting to see if Tec makes a difference. My biggest fear is having another optic neuritis as I’m deaf and rely on my sight for communication but I guess the drugs can’t stop this happening just reduce the severity and frequency is that right? I’m sorry that you don’t think it’s helping you.
We are entering an alternative universe and judging by the wonderful people I’ve met in this forum I’m less afraid and less alone. Like you I have a wonderful partner and family taking every step with us. X
I read this post and replies with interest. I am a teacher and have got a job at a local school starting September (my current journey is 100 mile round trip). The main change will be planning new lessons (world religions features so much more… I am secondary re teacher). What voice recognition software would you recommend? Can’t believe I never thought of using it before!!! Genius. I am also going to use pre-typed stickers for book marking - www comments I will circle and targets I am thinking I will hand wrote so they are personalised. I am thinking peer/self assessment for h/w tasks… Do these sound like okay strategies? Thank so much I am really excited about the new school!
Hi, I just came across this thread and am pleased to find people in a similar situation as I was diagnosed a few months ago and am also a teacher.
The suggestions above all sound great! I actually changed schools this term, moving to a part-time job after my diagnosis, although I hope to be able to build up to full time again at some point.
I want to know people’s advice on telling work. I did put it on the confidential medical form for HR and where it asked for more detail I simply wrote ‘I would be happy to discuss in person’ but that was a few weeks ago and no-one has got back to me. I am debating telling my direct boss (i.e. the head of my small two-person music department) - would you all advise this? I think I would like to tell as we are getting on and I have settled in really well but I feel like I’m carrying this big secret, and although its not affecting work too much right now it might be best to warn now just in case I am off at some point or symptoms do show more? Not sure how to put it though so she understands what it is but also doesn’t freak out about just having hired me and thinking I’m going to start being off sick lots or something.
Any advice appreciated, thanks!
Hi Amy S, I told my deputy head and chair of governors initially- this was when I was going through the diagnostic process- I had no choice as was off work for 5 months with such bizarre symptoms. Since my return I have told the entire staff. Like you I I felt I was carrying this big secret around. The problem for me is that it was obvious something was wrong eg I now walk with a stick. Everyone has been amazingly supportive and understanding. I’m working reduced hours at the moment (OH advice) and am considering my future as I don’t think I can continue but that’s ok too.
I would suggest you talk to your line manager as a first step and your headteacher. There’s lots of information from this society that you can give them to help them understand. Raising awareness is a positive thing.
i wish you every success in your career x
I’m not a teacher - I am support staff at a University finance office - and I’m finding great difficulty with coping with work myself. It requires a good memory (and mine’s shot all to hell - Post It notes are my friend!) and it’s always a been complicated and involved job … new systems keep coming up, and I don’t think I’m taking as much in as I should about the new procedures. I’ve had to go to part-time working, 32 hours a week (from 37) and it means I get to knock off a bit early while I’m still in a fit state to drive home… still fighting to keep the job going, but struggling. I don’t know how you’re coping as a teacher, when you have to be the most together person in the room! Well done!
As for telling work; they can’t make adjustments for you if you do not tell them. I agonised about telling work, but they’ve been quite good about it - giving me access to the first-aid room where there’s a bed if I need it - and if it’s not being used for actual poorly people - for a few minute’s kip at lunchtime etc etc. I’m not the first person in the department who has the Damn Malarkey (I know at least two others), and handrails etc have been installed for those people who are further along the road than I am, and I make good use of them. I do occasionally use the lift rather than the stairs, which helps… Be gentle with yourself, take advantage of people offering help, and blow the pride…make use of any short-cuts or easy options which you can!
when I was first diagnosed (feb) I told my boss - I basically phrased it as ‘I’m fine now and hope to do everything I can to make sure I am able to work to the high standard you expect but I have to let you know that this is an unpredictable chronic disease which will not go away and can flare up with quite disabling symptoms at any time’ I also talked about stress, diet and was quite frank - I told her that I could be fine for years or I could be severely disabled in a year or so, there is just no knowing.
i think making it clear that you intend to pull your weight, work as hard as you can and communicate how things are going, you will be fine.
good luck, from one teacher to another!
I would be inclined to go with your instinct on this one and spill the beans. You are going to have to do it sooner or later, and there is no good time, but, in the spirit of co-operation and mutual confidence and good working relationships, now is probably better than later. At least if you do it now it is on your own terms rather than something forced on you by circumstance.
Fingers crossed that it goes OK, if you decide to go ahead.
I am not diagnosed, but after some long absences also for bizarre symptoms, I have decided to go for early retirement (55 this year). I didn’t try for medical retirement. I continue to work as a supply teacher.
I have just registered on the site so hi everyone.
Firstly, to give you some comfort I was diagnosed 14 years ago I have a full time job and have missed less than a weeks work in all that time and that was nothing to do with MS.
Three things massively changed my working life
- be really honest with yourself and others about what you can and can’t do. If you can’t do it don’t even try
- take regular breaks, even if only two minutes
- dont stress about it - I was continually worrying about being able to do my job and that was over 10 years ago
hope this is of some minor help