Hi everyone, I’m Emma (or Ophelia as I’m otherwise known!!) I’m 27 and have just been diagnosed with RRMS this week. I am a qualified midwife and have been for nearly 5 years. Obviously it’s a flippin hard job at times and up to diagnosis have been finding my 12.5 hour shifts increasingly more and more difficult! I was wondering if anyone on here is in this situation or have been in the past. I have yet to have an appointment with occupational health and my managers about possibly changing my shift patterns or area of work (dreading this the most as I’m currently on delivery suite and LOVE it!!!) if anyone else has been in this position I’d love some advice! Thank you!!xxx
I am not a healthcare professional - the ‘only’ reason that I am replying is because you have had no responses ‘yet’. I have had MS for 14 years - all I can say is ‘Look after yourself!’ - 'take care of yourself. because however ‘kind’ other people are - they ‘cannot’ help ‘find a cure’ and (at the moment) - it is a ‘lifetime’ commitment? - TAKE CARE AND RELAX! - ‘At the moment’, you can’t beat it! - sounds cruel, I know, but look after YOURSELF (nobody else can) - not because they don’t care but because they cant!
Best wishes,
Marcus.
I am a nurse whos swapped hospital for community. Also days for nights. You have to sometimes change the way you work to find a workable way of dealing with this disease. I have had ms for 7 years now and I am still working 45 hours a week and have a 2 1/2 year old daughter. You just have to learn to listen to your body and make changes. pm me if you want to chew the fat!!! laura x
I am a nurse whos swapped hospital for community. Also days for nights. You have to sometimes change the way you work to find a workable way of dealing with this disease. I have had ms for 7 years now and I am still working 45 hours a week and have a 2 1/2 year old daughter. You just have to learn to listen to your body and make changes. pm me if you want to chew the fat!!! laura x
Hi Emma
I was diagnosed with MS in 1986 when I was 25 and I was working as a midwife. I worked as a midwife until 1997 when I started my Health Visitor training and worked as a Health Visitor until 2011 when I took ill health retirement. My manager was very accomodating and understanding to my needs and limitations surrounding my MS and helped as much as possible.Hopefully you have an understanding manager too !
Good luck.
Sue x
Hey
I’m not quite a healthcare professional yet and I think I’ve only had a clinically isolated syndrome (although I need to clairfy this, pretty sure I meet McDonald’s criteria) but I’d thought I’d post anyway.
I’m a medical student, in my 4th year now so will hopefully be a doctor soon (1 year to go). I havn’t recieved any advice about my career from my MS consultant yet, but my university tutor said it would be sensible to rule out surgery as a career and other heavily practical jobs such as A&E. I’ve never wanted to be a surgeon, always wanted to be a paediatrician, and hopefully I’ll still be able to do that.
I know of one doctor who has MS and their supervisors/managers are very understanding about it, and she has been able to carry on with her job in the same department. The managers also very understanding about the fact the she has some goods days and bad days and are very flexible around that.
Hope it goes well for you
Fawaz x
Hi its been interesting to read your replies. I am not and havent been a health professional, but one of the things my 1st neuro said to me was, When you make plans for the future, dont include work`.
An off putting thing to say, dont you think. Especially as i still havent got a dx after 14 yrs.
I did retire early at 47, from an active job. I`m 59 now.
luv Pollx
Hi Poll,
Goodness, yes! It’s not only taking a very gloomy view, when the outlook for MS varies so widely, and is impossible to predict at the outset. I think it’s also a bit presumptuous to tell patients what their priorities should or shouldn’t be.
It’s not as if MS has a very well-defined course, where you KNOW the patient won’t be able to walk, work, or whatever, in six months or a year. And plenty of people do continue to work, even with relatively serious disability. So who is a neuro, to set limits on what you should or shouldn’t be considering? Everyone’s different.
If anything, mine was a bit the other way. When I got diagnosed, he asked: “Are you a fighter, Tina?”. When I rather hesitatingly stuttered: “…Yes”, he said: “Well, you’ll be fine then!”
Nothing about stuff I couldn’t do, or plans I shouldn’t make.
Tina
x
Your most beneficial path will naturally take it’s course, you will know when it’s time to cut down on hours or change your focus, no need to worry about having to give up what you love, BEING A HEALTH PROFESSIONAL , your career will change shape with your life and you will bow out of it , as we all do, at the right time for you. You have so much to give yet and so far to go, don’t let MS control it , make some room for it in your life and live round it on your terms. I have just retired from a career in the health service, am 55 this year and have been struggling and reducing hours and responsibilities for last few years, winding down is the appropriate term I think! Due to the unpredictability of my energies and capabilities these days , am much better suited to writing, something I can do for as long as want at my own pace and when I feel most able to. Hope you find confidence and support to follow whatever path is right for you and long may you work in this area you love so much xx
I had my first attack the week after I first qualified as a nurse in 1996. Unfortuantely it wasn’t diagnosed for 5 years. By then I had already reduced my hours to 3 days a week and worked with a small team who knew me very well and if I needed to sleep they would let me sleep (the joys of working in a hospice). After I had my son in 2002 I knew that I could not manage to work quite so many hours or work shifts so went on to clinic working which I had managed reasonably well up until recently. They had always been very accomodating, suggesting term time working to ensure I gotr regular rests through out the year. They have never stood in the way of my career letting me extend my role and run my own clinics. Unfortuantely I’ve had a really tough time since having my 3rd child (its the big gap and the sleepless nights even though she is now 13 months old, plus I never really recovered from a horrific labour, as when I first had her my OH was living in another county preparing our house). I’ve recently been recommnended by Occ Health to take ill health retirement. My ward manager didn’t want me to (you are too young to go on the scrap heap just yet) so I decided to plan to return to work, but at the minute I just know I can’t manage it, so after getting to the stage where HR are doing a formal investigation and I’ve been looking to the RCN for support I’m thinking of throwing in the towel and taking the retirement so that I can stop stressing about being ready to go back to work to a timetable and start putting all my energy into being well enough to b e a proper mum to my family. I take my baby to a toddler group and have to come home and nap when she does and for the last hour I can barely interact with anyone as I am so drained by the whole thing.
Qualified in 1995 as a Paediatric Nurse. Since then am now this and Medical Devices Nurse Practitioner. Diagnosed last Nov and fortunately work a number of non-clinical days as a tutor (Medical Devices/Conflict resolution/Moving and Handling) for Paediatrics, Neonates and Maternity. I went to the MSLife yesterday and wondered whether a MS Forum group would be useful for NHS Employees? Talking to the Armed Forces one they find theirs useful but would other NHS workers apprecaite the group?
I totally would!!! I appreciate the majority of people work 9-5 jobs but it’s been difficult to get information on what reasonable adjustments might be for shift work in an acute hospital environment!
Oh and I just want to add that I’ve had the same positive response from my managers that all you have had from work. They’ve promised they’ll do everything in their power to help. I feel very lucky to have all this support!! It’s just all the unknowns i’m struggling with!! Thank you all for your responses!!xx
Hi Emma,
I’m 45 and was diagnosed when I was 39,but had symptoms dating back to when I was 30.I’m a nurse (RGN).I work on a busy surgical ward. I live and work in Switzerland by the way,but I’m from Scotland.
When I was diagnosed with MS,I was already off sick because of another health problem.I’d always worked at 100%.When I went back to work,I started at 20% and managed to increase this gradually to 70%.I don’t feel able to do any more than this and sometimes think that 70% is too much.For the time being,I’m managing to plod on.We do 12 hour shifts on my ward,which I don’t do any more either(not since my diagnosis) and also no longer do nights.I’m very pleased with this as I don’t feel I could cope with thes shifts.I mostly do a 7-16h shift.My immediate bosses are very considerate and understanding.
Hope that you get something sorted out.12h shifts can be a killer even for you’re young and ‘well’.Take care,Brenda x
i was a support worker with adults with chalinging neads and behavour. And for my job i had to be able to use controll and restraints wich obviously caused big problems when my right arm and hand decided to stop working. I got put onto light duties to begin with but then ended up on long term sick due to the fact im right handed and could’t type propperly or right by hand any more. We are now a year on and i have ended up having to leave my job becasue my sick pay ran out and i still wasnt fit enough to go back to work.
Hi Jms, one of my tutoring things is how to use Team Teach (a sort of control and restraint but for children). Shame you cannot go onto the books as a tutor to pass on your skills!
I think a forum for the care industry as a whole would be helpful.
I have just been advised to take the ill health retirement option at 44 . I am a care home manager in the private sector but my home is for adults with profound and complex learning and physical disabilities. As such the job is physically and emotionally very demanding together with an on call every other week.
My employers to be fair had weekly meetings with me to keep adapting my role and responsibilities and I am by no means badly affected.However the unpredictability of my balance,memory and eyesight meant that in terms of safeguarding the vunerable adults I care for they felt they were unable to bring the risks to an acceptable level and will not allow me back to work.
I imagine this is a problem for many people in the caring profession.
Pip