I writing for some feedback on a subject that I think most of you have dealt with or are still dealing with, and that is, coming to terms with being made jobless due to FND.
My wife lost her Hospital job over 3 years ago and is still finding it hard because she's always been in work and being so young at 34, the age when they had to let her go on medical grounds, it still hits her hard.
How do you manage the feelings and frustrations when you know you have the energy to work but your body is reacting against it?
She's trying the Volunteering role soon within the Cancer helping office MacMillan, in which she knows all the staff and will be doing little light jobs to help them.
I'm coming with her but will be waiting outside in the Cafeteria on standby because I know how to help calm her should anything happen to her whilst there.
They've got to do a risk assessment on her obviously and I'm in the process of completing her Occupational Health report.
I know how much she wants to work again because I can see her restlessness and I would be very appreciative if there's anybody out there that has gone through all the emotions of FND in trying to get back to work.
Have you managed to stay in work?
Has this helped or aggravated your FND?
Has the focus of work made you not think of your symptoms and has your FND resided?
I'm always encouraging her to be focused and have told her that one day this FND will go and not return but at the same time, I will feel guilty if I know this Voluntarily role will make her FND flare up worse.
All replies greatly appreciated as always.
My deepest thanks and GODS speed to you all out there with all our love.
Tony & Kim xx 😊 😊
Written by
LEEJUNFAN
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Weldone! I wasn't working when I had my flare up then diagnosis... but I couldn't work due to kids issues!! Now I do Avon as on my bad days I can stay in bed and rest. On my good days I post books through doors and collect orders!! I deliver one or 2 days when my order comes from Avon ! Keeps me meeting people makes me feel I'm doing something !! I'd say take it slow as when you feel good you are like "yippeee I feel normal let's climb Mount Everest !" But we all know we pay for it later in one way or another! So slow and steady wins the race 😍
I am a secondary school teacher and was diagnosed FND 5 years ago. The first 2 years was the hardest due to constant seizures and tremors I had to give up teaching.
I felt terrible not only I lost my own independence but my whole world has changed to deal with this illness everyday. However, my husband was quite glad that we finally could take some time off work to relax and enjoy life a bit in Europe.
Now I am back to work part time 2-3 days a week and able to manage this disorder much better. I guess having FND is a big shock initially and does take a while to find a better way to manage FND between work and health. And you need to keep to the right balance otherwise your body will rebel and shake / seize more after a days work.
So my advice is if your body is still not ready , don't push yourself too hard unless you have to. Take your time, sit back, relax and enjoy your life a bit. I remember when I told my friend at the time that I had to give up my job due to FND. She said take it as you are having an annual leave. Imagine if we all need to work for the rest of of our lives. One or two years off should be alright , is it?
I've haven't yet been diagnosed with fnd but it's looking like that's that I have.
I lost my job and independence through this. I do feel her frustration of losing her job so young. I think taking each day as it comes & will a voluntary roll the is less pressure on you if you have a flare up & can't work.
Hello...I too am a teacher (although primary) I've been off since last July but pending a meeting with occupational health I'm hoping to return in April - very slowly and am part time anyway. I think I'd come to terms with the fact that I may not do it again but fortunately I am doing better than I was and feel it's worse a try. I have some serious rules in place in order to keep myself in a good place. I will let you know how I get on. I hope the volunteering goes well for Kim
I was retired at 41 from a 20 year career in local government on grounds of ME - my FND diagnosis was added later to explain my walking problems which are not typical of ME/CFS as doctors currently present it.
I have found that the best kinds of voluntary work are those which involve occasional, rather than regular, attendance: so I sit on 3 different Boards of charities/community groups, each of which meets sbout every 6 weeks. So I usually have a morning every couple of weeks or so, but if for some reason I am not well enough to go I only miss one meeting. I also did some admin work for my vicar which was good as I got to pick the time each week and if I was ill it wasn't an issue.
I thought about working in a charity shop but couldn't deal with the thought that if I rang in to say I couldn't be there they would have to find someone else last-minute. In some roles you are more easily dispensable than others.
I am also on a part time study course and we have a day of lectures every 2-3 weeks in termtime (I find I can't always stay the whole day but everything is kept on the Virtual Learning Environment website so it is easy to catch up on what I have missed). That gives me a sense of purpose too, but again, if I am not in, it doesn't affect anyone else's plans. I'd highly recommend a course of study too.
Hi I also stopped working at 40 and had been very physically active in work and outside. That has been the hardest adjustment for me. I'm also a researcher so having brain fog is a double whammy. Iv found its about doing it small. I did some volunteer work just a few hours a week but it was good to get out and be doing something. Iv found its about balance too so maybe start with less hours and If you want to increase donit slowly so you know your capabilities. I finished one job and ended up in bed for a week after. It's more than frustrating. Good luck
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