I am feeling really lost at the moment. I got diagnosed in Dec 2011 after lots of nagging of my neurologist. I feel like I really coerced him into giving me my diagnosis and maybe he made a mistake - does everyone feel like this?
Anyway after spending 4 years being made to feel like I was imagining my symptoms - It is now very hard to even for me to take my own symptoms seriously.
The problem I am having is that I am really struggling at work. I don’t want to give up work - i think it keeps me sane and I am only 32 and I think I have some good years ahead of me - Also I need the money.
However I am struggling with the work load, the responsibility ( my memory is awful and I get very foggy headed and dizzy). I am often the most senior nurse on shift and I just feel very overwhelmed.
My work have been very supportive and I now only do 8 hour shifts or 13 hour night shifts and I only work 15 hours.
I have tried telling myself to stop whinging and just get on with it! I just don’t think I can. As my symtoms are mild and transient I feel like a fraud as on a good day I am good but on a bad day I am useless. I don’t what the solution is or who to talk too.
I hope that makes sense x
Alison
oh and could you tell me do these sound like day to day MS symptoms or something unrelated.
Foggy head / feel drunk - this is generally when I am post a 13hr shift.
leg pain - mainly thigh and one sided - like a burning.
These tend to be things that bug me a couple of times a week not when I am having relapse.
You seem to be having a ‘why me;’ ‘is it me’ moment. This is something we all have had in one form or another and are questions you must ask yourself to come to some sort of realisation.
Yes; even without knowing your situation it is quite possible to be misdiagnosed but sometimes doctors are right. There are; as you probably know; a myriad of things that can be classed a neurological complaint.
If it is MS do you get attacks and remissions; therefore you could enter a good phase soon and you would be able to cope. I know it sounds a bit like ‘Dirty Harry’ but it’s a case of ‘how lucky do you feel.’
Don’t throw away your dreams and aspirations; with MS you cannot fight against it. Try and alter your workload; also have a word with Equality Commission http://www.equalityhumanrights.com/ who will guide you through the legalities of the requirements of your employers (NHS I presume).
One thing I will say upfront I definitely recommend you do not do night shifts; sorry I know that is awkward but your health is the first requirement.
Alison, I dont know how you do it…I have not been dx as yet, however I have been off work now since Nov 11.Tried to go back on reduced hrs in April, but found it too much. My job is a nursery nurse working in a very busy Day Nursery looking after 2yrs olds over 25.5 hrs.
Totally found it impossible to do any of my duties, and even when I went back in April just picking up toys off the floor I nearly fell over. My employer asked my GP to see if they could make reasonable adjustments. My GP said it was not like they could change a chair I sit on!!! We dont even have adult chairs, bean bags or rugs!!!
I dont think I will be working in a nursery any more, so I will have to look at something else, but I dont know what!!!
Hello Alison, I think these could well be typical ms symptoms, they are not what I suffer from but I’m sure others can comment more on that. Tbh, I dont think your neurologist would have given you a diagnosis if he hadn’t been sure, I’m sure they do get things wrong now and again, nothing is infallible and everyone makes mistakes but being forced into diagnosing something just for the sake of it doesn’t sound like the typical thing a dr would do. As for work, I never considered giving up because of my ms but nearly didn’t go back after maternity leave , however I did go back part time and I have to say that it is one of the best decisions I ever made, so I can see lots of sense in what you are saying about staying in work, especially since you say your work are supportive, mine are too. You say you struggle with the work load, is it possible to move to an “easier” area of nursing, I’m not sure “easier” is the right choice of word because probably there are not any easy areas of nursing but by easier I mean, an area where it is easier for you to cope with managing your work and ms, perhaps where there aren’t shifts, if that is what you struggle with. Why not have a word with your boss, one thing I will say, is don’t be afraid to express what you struggle with, tell them and they will help you work something out, especially since you say they are being supportive. Cheryl:-)
Hi Jan, your situation sounds more complex because of what you do and I can’t really think of a solution to keep you doing what you do. Are there other jobs in the nursery that don’t involve working in the nursery, I.e. is there an admin department where you could move to, I know it’s not what you do but it might help you stay in work. Cheryl:-)
They is no other jobs at all in the day nursery, to be honest I dont think some of my work collegues would help either. I work with alot of young girls, and they can be very critical .
We have all said people who dont suffer from MS dont understand. Last night I didnt go to sleep till 3am this was because my R leg was doing its own thing!!! Twitching, aching and so painful.
Hi, you sound just like me, on the advice of mt GP I wont be doing night shifts for the forseeable future, I have been off since diagnosis in mid June. Can I ask if you are on any treatment?
There are a lot of us nurses with MS on this forum, and I for one have found great help and shared understanding from them and the non-nurses too who can relate to us with their own individual work/life balance experiences and attempts!
I’ve been off work this time since May and was previously off at the end of 2011 with a big relapse and am due to start Copaxone later this month.
Youve got to look after yourself and put your health first which will mean some adjustments and modifications in the workplace in order to keep at work, Occy Health can help with that.
Talk to your boss, Occ health and HR. We discussed me going for more office based nursing (I already work in out patients but its a huge department and running around all day left me unable to speak by the time I got home). One of the things that came up is that if a vacancy comes up that is more suited to your health condition then you will automatically get it. I’ve had MS forever (well it feels like it, buts its more than 10 years), I’m just working up to going back (can’t reduce my hours anymore) but continuing with term time contract so I ger regular breaks throughout the year, and reducing the procedures that I do, and doing more of an assessing role that I can do sat on my bum.
I think it’s natural to feel the way you are, I questioned my neurologist about his decision a few times which he said was quite common. I do have MS and went through a rollercoaster of emotions which is the norm apparently.
I too have an awful memory and get dizzy. I really understand how hard it can be especially when you have a heavy work load. You need to figure out what works best for you. I have to write down everything otherwise I forget it almost instantly and I’ve learned to recognise what brings on my dizzy spells; tiredness, stress, not eating even if I’m not hungry. It may be that you need to change your job slightly to ease the feeling of being overwhelmed.
I don’t think you are whinging you are just trying to deal with the rollercoaster of MS. It’s easy to feel like a fraud as everything you are feeling is hidden from the outside world and often people forget that you have symptoms. I read a book called Climbing Higher by Montel Williams which really helped me to relate to someone else and understand how someone else came to terms with their symptoms.
Kx
I tend to get a foggy head if I’m tired, a little snooze really helps although I know this isn’t always easy to do. I get burning sensations in parts of my legs sporadically which I mentioned to my neuro who said it may be an old lesion.
I think it’s natural to feel the way you are, I questioned my neurologist about his decision a few times which he said was quite common. I do have MS and went through a rollercoaster of emotions which is the norm apparently.
I too have an awful memory and get dizzy. I really understand how hard it can be especially when you have a heavy work load. You need to figure out what works best for you. I have to write down everything otherwise I forget it almost instantly and I’ve learned to recognise what brings on my dizzy spells; tiredness, stress, not eating even if I’m not hungry. It may be that you need to change your job slightly to ease the feeling of being overwhelmed.
I don’t think you are whinging you are just trying to deal with the rollercoaster of MS. It’s easy to feel like a fraud as everything you are feeling is hidden from the outside world and often people forget that you have symptoms. I read a book called Climbing Higher by Montel Williams which really helped me to relate to someone else and understand how someone else came to terms with their symptoms.
Kx
I tend to get a foggy head if I’m tired, a little snooze really helps although I know this isn’t always easy to do. I get burning sensations in parts of my legs sporadically which I mentioned to my neuro who said it may be an old lesion.
Hi Allison, hope you are well, have you been in touch with Occ Health yet? I am just going to call my ward manager and see whats happening with the risk assesment that has to be done before I go back.
As an NHS Worker (Paediatric Nurse and Medical Devices Nurse Practitioner) it can be difficult. Have kept in close contact with both my line manager (both working areas) and ‘Health and Welbeing’ (Occupational Health). On Copaxone injections with RRMS diagnosed. Fortunately my job away from the actual ward work means lots of meetings and training, so (as at the moment) when I have a relapse there is enough other parts of my job to vastly reduce the running round aspects of nursing . Though still have to get round the vast site but can allow for extra time. This means not having to go off sick, but as others say, tired by the end of the day!
If possible try to do set hours as I find although tired getting into work for 6.45 am, it means finishing at 3pm (Mon-Fri) and for those meetings I have a good excuse for yawning and looking tired!
When I was at your stage, As well as the physical smptoms, I started to find it difficult to concentrate and was beginning to feel the effects of ‘brain fog’ and forgetfullness plus what I later came to understand as MS fatigue and of course those psychological effects of feeling overwhelmed by my responsibilities.
Alison, I started to make the odd little slip up and then more important mistakes and worst of all at times I wasn’t even aware of what I had done which caused me to become confused and self doubting. I tell you this because my actions didn’t involve life or death. You owe a professional duty of care to your patientsI You don’t need me to tell you that.
You are doing the correct thing by reducing your hours etc. Do whatever you can now to set yourself up for the future, that might mean re-training for another role within the NHS. Better that, than struggling on until you do something you regret and then being forced out with nothing but your own shame. I know many people who have turned this very same corner only to discover a new much better way.
Oh my goodness, I paint a bleak picture don’t I, I’m sorry for that. This is a worst case scenario, I’m sure you will have had similar thoughts. The likelihood is that everything will work out for the best, you are only 32 you lucky thing, I almost wish I could be you.