How do people survive mentally with FND.
I'm a year in. My marriage is falling apart. I get treated like a child.
People want me to sit in the same place all day so I don't get hurt and I'm so bored.
I was a full time nurse before this happened.
I have 2 small children that I want tk look after and run around and play with.
I can't take much more of this.
I'm so sorry to hear you're having such a tough time. I think in the early years the mental battle is as tough as the physical one. I benefited from doing CBT with a neurology specialist psychologist to help me adjust to my new circumstances. Your GP or neurologist should be able to refer you.
I'm intrigued to know who is telling you to sit still? I'm not a doctor, but from my experience staying completely still is not the best approach. If you don't use your body at all you are likely to lose more mobility in the long run. For me it's all about balance and pacing. I try not to push myself to the point that my body completely crashes, but I do little things and focus on the things that bring me joy or a feeling of achievement. In my opinion, you should absolutely definitely be spending time with your kids. Mine were my reason for going on when I was in your position. Even if you just sit and let them play around you, being with them will give you joy and strength.
As for partners, again I am very much not an expert, but from my experience communication was what saved us. We instinctively protect those we love from how hard things are for us. Don't do that, explain to him how you are feeling, physically and mentally, and let him do the same (even if it makes you feel guilty, which it shouldn't, but it probably will!). Mine was bloody terrified!! Once we understood where the other was coming from it became easier to support each other.
I really hope things improve for you. I am 10 years in now. Obviously it's not ideal, but I've accepted my situation and have made I life which I am contented with. I hope, with time, you can do the same.
Hugs x
Thank you for taking the time to reply.
It's my husband that wants me to sit down as he's so frightened I hurt myself when I fall when I have a sezuire.
Honesty and communication is our problem but I am trying so hard to work on this with him. The last thing I want to do is loose him.
The hospital is just a joke we don't get anywhere. I am trying to do as much research off my own back as possible to find out how I can help myself.
You seem to have a good support network around you?
I am lucky that my parents live locally, so they did the school run when the kids were younger, and my husband has been a rock (once we got through those early days or adjusting to our new situation).
It sounds like you're doing all the right things. I completely understand the fear of losing your partner - I felt that for years! The fact that he's trying to protect you shows he cares at least. The CBT to help me adapt with the neurology specialist psychologist was a game changer for me. It helped me get over the sadness, frustration and worthlessness I felt, and helped me refocus on what I could still do. It also helped me vocalise all that to others.
If your doctor is rubbish I would try finding a different one. It took me 3 neurologists to get a diagnosis and proper support. Soul destroying, but worth it. It is completely wrong that when we are at our most vunerable we should have to advocate for ourselves, but that seems to be the way it is. It is your right to see someone else if you're not getting the help you need.
At least you have found this group now. I read posts more often that I comment, but I just find it reassuring to know I'm not the only one x
Hello there,your email sounds really sad.
Perhaps if you explain to family and friend what FDN means then they will understand a bit more.
Probably the only reason you say that you are asked to sit in the same position etc every day is that your loved ones dont understand. Please try to explain FND to your husband/children then they may understand more.
It took a good 2 years for my husband to understand FND, but now he is so helpful and understands my moods and the silly things I still do after a lot of years.
Please dont let your marriage go, try to explain, once they understand life may be a little easier.
At first I got treated like a child too, and still do by my 28yr old son, but I know it is only cos he is worried, my husband is good at saying if i need help or not.
You can still engage with your children, run around with them as much as you can or cannot do, dont be told what you can or cannot do, JUST DO IT,none of us with FND know what the future holds, but you must do as much physically as you can, being a nurse, i know that you know all this, so just remember that we are all here to support you, if you call out for help then somebody will reply, much luv, take carexxx
Thank you so much.I am so very sad. The hard thing is we don't know the difference between the difference of an FND sezuire and my epilepsy sezuire.
I know I carry the weight of my husbands health anxiety.
I am trying to do as much research as I can because I am not really getting any support currently from the hospital.
I really do thank you for your reply. Talking to people who have an idea on what it is like is amazing.
X
I am no longer a fully functioning contributing adult so therefore am a child in that sense and that just plain sucks. Husband still expects me to cook and clean though and I do a poor job but at least he doesn’t have to do it. But he knows not to expect anything else from me and therefore my value has gone down. It hurts but it’s true. Wish I could work but I physically couldn’t handle more than an hour of work. Even sitting upright for more than a couple hours is a challenge I need to lay down. I’ve been stuck at home for almost three years now with this FND and I’m so bored and restless and can’t believe this is my life now. I have already overdosed on Netflix and book reading, can’t take no more. So I understand how you feel.
Have you had any neuropsychology treatment yet. I am on the waiting list.
Everyone treats me like a child but it's the fact people make decisions for me know and I hate that. I am still capable of making my own mind up.
Hello there, it is very difficult sometimes.I was having therapy. I found it very helpful
