Hi there, I am a Staff Nurse, with a new diagnosis of RRMS, I am gutted if I am honest, I have been told to take some time off work to get my head round it, how long is long enough? Now I know why I am so shattered after a 12.5hr shift, takes me days to recover.
Not able to see the consultant till next month sometime. Not on any meds at the moment, I am exhausted. x
Hiya I think time off is a good idea as i’m sure those two little letters (ms) are in your thoughts constantly.
Fatigue is a symptom many of us relate to,and I would think its one of the main reasons for people making adaptations at work.
You have already found your shift patterns difficult, are you currently in a relapse…now you know what your symptoms have been?
It is usually a good thing to wait before seeing the professionals as it gives you time to get over the shock and to think about the answers or explainations you need.
Have you got an ms nurse assigned to you?
You will know yourself when you are ready to face going back…and who you are going to tell. Being in the care profession as I am/was I think as part of your duty of care you will need to share the dx with your manager so risk assessment can be put in place etc.
Lots to think about so take your time and fire away on here. Dont forget the new diagnosis part is full of people in your situation aswell.
Take care
Pip
Thanks Pip,
My manager knows already, I thought it only courtesy to let her know why I am off, she was great, her quote was, “with a diagnosis comes support” I have spoken to an MS nurse last week, she was great. The irony is that when I was student I had spent the day with her. I seem to be better when my family are around, when they are at work/school my mind goes into overdrive. I know I am not ready yet as I think I would burst into tears if anyone asked me why I have been off.
You are right, lots to think about, thanks for the advice.
x
Thats a good manager then, and I’m sure on here you will find answers to many of your questions.
They will also be real experiences from people who know what its live living aboard hms MS.
Day at a time.
Pip
HMS MS, is a mighty big ship, lol
Thanks again x
Hi Mo-Jo,
Without question you need time to get the realisation of the diagnosis…
This was written by a doctor about his diagnosis; were all different but this will give you some idea http://www.mult-sclerosis.org/diagnosingms.html
The only legal requirement is that you advise the DVLA of your diagnosis. This probably will not affect your need to drive.
Also I will mention as there is invariable a short window to make a claim. If you have a mortgage see if your house insurance covers ‘critical illness;’ could mean a large cheque.
Last thing; as I don’t want you to be buried with info; there is responsibilities’ by law that your employers must adhere to this will explain somewhat http://www.equalityhumanrights.com/legal-and-policy/ You can contact ‘Access to Work’ if you need any help http://www.direct.gov.uk/en/DisabledPeople/Employmentsupport/WorkSchemesAndProgrammes/DG_4000347
MS Fatigue is horrible but remember MS is not a stop sign; its traffic humps.
Good luck
George
Thanks George, I will dig out the insurance policies later.I will also have a read at the links you provided
Regards
J
Hullo ‘Mo-Jo’.
My name is Marcus (unfortunately my ‘damned’ initials are ‘MS’!). I’ve had RRMS for 13+ years and at first I thought that they may have made a mistake - unfortunately not! My own Doctor has a close relation with MS and he divulged that he ‘could get it’. I was a Director in the motor trade at one time of 4 garages. I went to university in Aberdeen and I am married to an Optometrist from Northern Ireland and we have one daughter aged 9. I am 56 and not working because I suffer from ‘tiredness’. I used to play rugby and hockey, I swam and I have a black-belt in Tae-kwon-do - not any more. I used to jog along the beaches and ‘other keep-fit’ hobbies - not any more.
My one piece of ‘advise’ would be to pay attention to others with ‘MS’ and decide whether it is important or not. But what am I telling you for? you will know better than me? It took me a while (years) to ‘admit to myself that I had MS’ - the funny thing is that I tell people that I have ‘MS’ and they tend to show that they are sorry - but generally, it doesn’t hurt! In fact when you are idle, you forget that you have it. There is no diagnosis for MS and nobody knows fully about it - but what am I telling you for? You will probably know more about it than me?
I’ll stop now because I’m probably ‘boring’ you - My own phrase which I repeat (to myself) just now (and I probably picked it up from this website is ‘little by little and bit by bit’) - I do occasionally use a wheelchair and I need a ‘walking support’. My driving licence has been taken away because my foot was too slow when moving from accelerator to brake pedal but all is not lost because I could drive an automatic car?
'It’s here and that’s the bu*ger but it becomes ‘finding the best way around things’. I have a slight problem with the memory but don’t tell the wife because that acts an excuse when needed (but you probably know that already because my wife believes that ‘females are superior’ and you (being a nurse) would know if that’s right or not!
Marcus. x.
Hi marcus, your story made me sad and happy all within a few seconds, I really hope that you are doing well at the moment and life is as good as it can be, I have really only told a few close friends of my diagnonsis, not looking forward to telling my workmates, but maybe they will be supportive, I sure do hope so. My kids are 16 and 9 and are a godsend to me at the moment.
J x
Hi ‘J’,
I went to a fee-paying school and when you tell your ‘friends’ is up to you (whatever you are most comfortable with) - although I shouldn’t be telling you - maybe you should be telling me. I have 'come to my wit’s end trying to ‘find-out’ about MS. I have ‘MS’ and that is it. Maybe make sure that you get the ‘advantages’ - I let my wife drive a new ‘motability’ Mercedes - not long term (3 years) but I’m about to get another and it is ‘minimal’ cost - it will be my 4th new Mercedes but ask what you are entitled to. The MS website can be quite helpful. I’m sure that you will be able to tell me things but I don’t concentrate on them ‘all the time’ - I find that it gets quite boring! (but maybe that is just me). I’m willing to be of any help (if you want it and if I can give it) but I ‘tend’ to approach it ‘at a distance’ - Look at the amount of people that have MS - all these ‘intelligent’ people and no ‘blasted’ cure yet. Still summer to come yet?
Have a nice day,
Marcus. x. (it’s friendly, not sexual - I’ve got MS you know!)
Dear ‘J’,
I’ve just read your message again. Maybe you should see your doc. because it’s not worth tiring yourself out! (That 'fee-paying school that I was ‘blethering about’ (6 qualified in my class as Doctors but no-one has a cure for MS yet) - My own Doctor (whose close relative has MS admits that he does not have a cure yet) - At the moment, I’m trying to come to terms with the fact that it’s a life-time thing - who knows? (my cousin is a retired nurse and she doesn’t know anything. Still there’s always TV (which you can fall asleep to) If there is another message I could tell you about my catheter!
Marcus. x.
I’m a staff nurse also! Not worked since mat leave last year. I was diagnosed in 2001, but had symptoms for a long time before, which for whatever reason they were very reluctant to investigate MS even if I knew thaats what it was. Shift work killed me, so I started doing clinic work, not quite so exciting but not too difficult in my speciality and as I often say there is no humping and dumping involved. Plus my patients never take their clothes off either. I’m hoping to go back to work with support if I can (at the minute I’m subject to the disciplinary process as I’ve has so much time off), unfortunately even clinic work is tiring when there are great distances to cover, high turnover of patients etc, especially when some days I take the big ones to school and then come home to sleep. I got very little support at the time of diagnosis but as the years have gone by things have got better, my work colleagues can tell how I am just by looking at me, and have in the past helped me sort out emergency appointments. Occ health are definitely a good place to seek help from too, they can expedite appointments.
Hi ggmarch, I have been in touch with occ health already and they are fab. I think my relapse is passing now and hope not to be off for too long, hopefully I will be able to do short shifts for a wee while and take it from there.
Thanks for the reply, keep well and i will post how I am getting on.
J x
Hi Mo Jo. You have received a lot of advice already so I will try to show that ms need not be as bad as some people think. I was diagnosed with rrms in 1990 after a few episodes of vertigo and extreme fatigue. For the next seventeen years I had one or two relapses a year mostly fatigue that would last about three weeks. I was on no medication. I began to have stiffness in my legs and some bladder problems along with neuropathic pains.
I was diagnosed with spms in 2007. I am now on different medication for the different symptoms and I have also been lucky to only need steroids three times. I have learnt to pace myself and know when i need a rest. I am lucky to not have needed a wheelchair yet and still have a good quality of life. I always remember my neurologist telling me on diagnosis that only one in five people ever need a wheelchair.
When I asked my doctor years ago if he had anything for fatigue I was told no and just to listen to my body and rest when I needed. Now I take a drug called Amantadine and it is working really well. My brother who also has ms takes Provigil for fatigue that didn’t work for me.So I think my message is that there are no two people with ms the same and to try and deal with things as they come. I hope I haven’t bored you to sleep and wish you well in the future.
Mary
Just re read what I wrote, surprised it made any sense. I’ve been in for my Tysabri infusion today and honestly can feel it making me tired as it spreads through my body. Could really have done with a sleep when i got home, but was worried about forgetting to pick the kids up and I’ve now entered over tired mode (its a wonder I haven’t got myself into mischief) and can’t switch off. With my OH away during the week I don’t sleep well (we live in the middle of nowhere at the minute and I get scared that something will happen and no one will find us til he gets home on a friday night, and I worry about the rat as big as a cat and the mice and the birds in the eaves that I can’t fix but have to put up with). No one ever tells you its easy but I managed perfectly well for a good number of years, its only since I had my third child (knew it was a mistake in more ways than one) that things have not been great. If anything I’ve always felt I had more to prove, particularly at work as I didn’t want people thinking my MS was an excuse not to do things.
Hi,I am also an RGN.I work in a busy ENT ward.
My MS was diagnosed in 2006,but I first had symptoms in 1997.Being diagnosed for me wasn’t really a shock,as MS had been mentioned right at the beginning.I was glad to finally know what was wrong with me.I remember when MS was first mentioned in 97,I was absolutely horrified.I couldn’t believe this was happening to me,especially since I was working in a neurology ward at the time.I became extremely anxious and fearful.
I don’t know if this’ll help you,but try to remember that being diagnosed with MS is not the end of the world.Take a deep breath.Cry as much as you have to.Now that it’s diagnosed,hopefully you’ll be offered a treatment.Write down any questions you have for your doctor as it’s easy to forget them in the heat of the moment.Maybe take someone with you when you go to see him.Take as much time as you need before going back to work.
I also used to do 12 shifts and nights.When I was diagnosed,I was alaready off sick for another reason.I was off in all for 10 weeks and went to work at 30%.I slowly managed to take this up to 70%.Any more would be too much.I mostly do 7am-4pm shifts.I don’t work more than two days in a row and I no longer do 12 hours or nights.
Occupational health have been great and my bosses at work are very flexible and understanding.
I live in Switzerland,but I’m from Scotland and did my training in Scotland.
I hope that some of this might be of help to you.PM me if you want.Take care,Brenda x
Hi MoJo, I am also a staff nurse and was diagnosed in march. I have been off work since feb but am hoping to begin a phased return at the end of the month. I was advised by neurologist to remain off until treatment started, I commenced avonex in may. His advice was “be good to yourself” so I have taken him at his word and rested every day, began reflexology which I find helps me and just enjoyed my time off by not doing much at all.
My children are 10,5 and 4 and can be quite a handful but my hubby and my mum are very supportive.I work 30hrs a week but only do 9-5 in a chemo unit so its not too heavy. Can be quite draining emotionally at times though. My management are appearing to be very supportive at present and I can only hope that continues when I return but I have been told I will get all the support I need.
I am hoping to reduce my hours if I find it too much but will just have to wait and see what happens. Hopefully because we work in the caring profession we will be looked after by our own.
Take care
missy
Hi, I have just read your messages. I am 56 and married to an Optometrist from Northern Irelland with one wee girl of 9 whose name is Ciara. My wife is catholic, I’m not, and it is sometimes more difficult to deal with than MS? - Slow down, and relax and investigate if you can get a carer - I live in Scotland and they are free - yahoo! But to be realistic, it is not my decision to tell a ‘Nurse’ what to do. I got a job ‘seated’ answering the phone at Sky - I once did a shift for 12 hours but it was only my own choice - quite honestly it was a ‘bit’ boring and even though people phone in - you have ultimate control over the call and you can ‘hang-up’ any time you want to! As it happens people are people and nothing much happens and as a nurse I would imagine that you could do this ‘hands down’. It’s not well paid but it gives you something to do. I lasted about 8 years - I didn’t actually ‘like it’ and I seemed to have problems with my memory - I can’t remember? As for disclosing that you have MS, 6 other people who worked there but I was kept away from them for ‘secrecy reasons’ but I have had MS for over 13 years (my Doctor says ‘maybe longer’ he doesn’t know! And his own brother has MS and he suspects that he might get it - he doesn’t know!) As for divulging to other people that you have ‘MS’ - IT’S YOUR CHOICE! BUT IN THE 13 OR MORE YEARS THAT I HAVE HAD IT, PEOPLE ARE VERY UNDERSTANDING AND VERY HELPFULL. SCIENTISTS WHO STUDY MS DON’T KNOW FULLY WHAT IT IS AND ACCORDING TO THIS WEBSITE THERE ARE OVER 100K IN THE UK ALONE - THAT WOULD BE ALOT TO HAVE IN YOUR HOUSE IF YOU WERE ‘HAVING A PARTY!’ - OVER 2,000,000 IN THE WORLD - IT IS CLAIMED (MAYBE WE COULD ‘SET-UP’ OUR OWN COUNTRY?)
Now that would be something because if any one there found out that you ‘didn’t have MS’ then you might be ‘treated as an outsider?’
Sorry ‘if I am taking alot of p*ss’ - BUT I HAVE MS. DON’T YOU KNOW!
Relaxation is a good hobby and ‘sometimes’ heat and stress are to be avoided. It’s YOUR CHOICE - just think if you had to look after someone with ‘M S’?
Marcus. x.
(p.s. I am going to Lanzarote for my 9th time - because the warm breeze there helps my walking and other functions but it’s up to you where you go - in fact everything is up to you! It’s your life! - ENJOY!)
Oh, and I forgot to add that my cousin was a nurse (retired now) and she worked at Fernbrae Nursing Home (in Tayside) and she had no idea what MS was - in fact, as far as I know, I was the ‘only’ person in the family to have MS! but there are over 10,000 in Scotland - My ‘background’ is maybe from the Vikings - I wonder what they would be like if they had MS? (but who really cares?) - try and have a good day!
Marcus. x. (a kiss, more for fellow MS’rs 'cos we have to ‘stick together’ - but only if you want, 'cos I’m sure that you have heaps more important things to do and MS to look after ‘first and foremost - no arguement!’) - I THINK YOU SHOULD LET EVERYONE KNOW BECAUSE THAT IS WHAT I DID FIRST OF ALL - AND IT DIDN’T (PARTICULARILY) DO ME ANY GOOD! - I’VE GOT ‘MS’, DON’T YOU KNOW! (But try and have a nice life. x.)
I don’t know if you know Marcus but there is a gene theory that MS was spread by the Vikings because of all the rapeing and pillaging they did.
http://www.publichealthalert.org/Articles/MMDrymon/Multiple%20Sclerosis.htm
http://www.aspects.net/~janus/vikinghypothesis.htm
George