I'm just exciting and not living. - Functional Neurol...

Functional Neurological Disorder - FND Hope

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I'm just exciting and not living.

Littlecook profile image
13 Replies

The other day I was told by the hospice nurse that I'm just exciting and not living my life that is so true . Please excuse me for what I'm about to tell you all and please don't take me wrong.

I feel like my life is over if I'm not dizzy I'm breathless, I can't do the things I need to do its pulling me down , I think my anxiety may have a lot to do with it but the hospice nurses is going to talk to my GP doctor about changing my tablets.

I'm so tired and wish I could just go to sleep and not wake up , every day I think of my childhood days, if I close my eyes I can still see things that no young boy should see .

Don't worry I'm not thinking of taking my own life I'm just so fed up how I feel .

I go to a talking group in November its one to one hopefully that will help me .

Please don't judge me for what I've just said its taken me a long time to say this and to be brave, but I'm not to talk to my wife ..

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Littlecook profile image
Littlecook
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13 Replies
tabey profile image
tabey

trust me I’ve tried to take my own life 4 times and all it does is cause pain and I regret every second of it but I’d got so low I was not thinking in the correct manner

Find is awful and it affects so many people in different ways but if you can smile and laugh at something each day it’s a win

None of us know what’s in our futures but I understand how you must be feeling I only shared this so you know you really are not alone

Pm me if you need to

Take care we are all fighter's and we are strong

Lady4 profile image
Lady4 in reply totabey

I hope your in a better place Tabey xx

tabey profile image
tabey in reply toLady4

I am but it’s amazing how low doctors can push you they take a oaf to do no harm yet they cause harm with there words and actions

Lady4 profile image
Lady4 in reply totabey

I think some genuinely just don't see it and maybe if they are given more time to listen and treat people more holistically within an integrated care system, so many stories would be different.

tabey profile image
tabey in reply toLady4

You have a very good point of view there I agree there are good and bad apples in the tree but sadly when I comes to fnd they just do not wish to look outside the box at all I was told from a London hospital to come off all medication as this was causing a lot of my issues with Fnd then after going though the complaints process over over things that happened I got told to remain on all meds which is so contradicting and was brushed off labeled and case closed

Thank you for your kind words

Lady4 profile image
Lady4 in reply totabey

I would check the side effects on the meds. I know some help but others can cause more difficulties (I kind of see them like risk vs reward) and if there is something you spot, raise it with them again. It may just be one med and I would have thought all meds should be reviewed regularly.

GreenCottage profile image
GreenCottage

I know how you feel, a couple of months ago I was in that same place, I could not sleep just and hour here and there and in a lot of pain. There was little I could do, life felt empty.Like you I thought life was pointless in that state, and anxiety and stress made it worse.

My GP helped with a low dose prescription and now I can sleep and it's made a difference. Like you and many others I can not do the things I used to enjoy. The more I read about FND the more I realise that the doctors do not really understand it.

We have to work out what works for us, I am determined to improve. I've learned that for my symptoms what seems to help people is the old tricyclic anti depressants in low dose for pain, that's what I asked the GP for and it helped. Psychotherapy helps people like me so does breathe work and keeping as active as possible without getting too tired.

So that's my therapeutic approach for now. Some days I achieve very little some days I do better. It sounds like you have some good things that you are trying and you've identified some of the things in your past that may impact you. Finding the right sort of support for those events may help, there is growing evidence for practices like EFT and it's being used more and more in the NHS.

I wish you all the best, don't give up, stay calm accept the bad days and the good days and notice any positives.

Lady4 profile image
Lady4

Did you mean to say "exiting".

I was going to mention on previous post whether you have had your meds reviewed lately, so its good that they are doing that.

I think you put a lot of pressure on yourself and that probably has a knock on effect with your anxiety, which if heightened could cause some breathlessness.

Maybe, listen to your body, if it wants to rest, let it rest, even if for a cat nap in the afternoon, no harm in that.

Hopefully your one to one in a few weeks will help too.

Hugs xx

Littlecook profile image
Littlecook in reply toLady4

Yes sorry, I know what I'm trying to say but my spelling isn't that good ,my head is everywhere.

Lady4 profile image
Lady4 in reply toLittlecook

Understandable, you just need some little wins on your side.

Have you ever thought of doing a few relaxing floor exercises/stretches and incorporating some gentle breathing exercises into your daily routine., Maybe some fun ones like blowing through a straw or that one where you try and keep the little ball in the air.

eviedotty profile image
eviedotty

I have complex health issues and I find that if I listen to doctors it gets me down very quickly I feel like they write their reports more to suit themselves than us as patients. My recent neurologist wrote I have good days and bad days, I have never said those words and nor would I use that kind of language but from this report it was decided that a batch of tests could be done. Now these tests were done twenty years ago with lessons learned and fully engaged with an outcome of a very much improved lifestyle so I was astounded to read this. CBT teaches you to look at a task from the proverbial goal post and work backwards to cut it down to bite size pieces and the job or task is completed, achieved and celebrated and this is a baseline rule of thumb for me. I can’t do food shopping just now as I am still recovering from long Covid but I can do online food shopping and get it delivered with some treats for my grandchildren included. I struggled with cooking and for my birthday got an air fryer that looks like a mini oven that sits on top of the work unit in the kitchen and now a whole new world of food has opened up to me and I feel like I am in food heaven compared to before. My life has just taken another hit because I fell in my back garden and broke my leg so this is another adjustment but I am 65years old now and with or without my challenges I couldn’t do the things I did when I was in my 40s so I think of the happy memories from that time and I think of the challenges of that time that I over came and if I can do it once then I can do it again we live in a society were young and beautiful is valued but wisdom has a lot to offer as well

Crystallmatters profile image
Crystallmatters

I hope know one is here to judge , what I here you suffering , torcher , pain fatigue , no sleep , living a pressure would with FND who would not feel how you are .

Try to give your self , make a point 30seconds to breathe and reflect on the situation / recognise.

I wish you the best hope things improve a little . It can be like a rollercoaster.

Good luck xxx

Crystallmatters profile image
Crystallmatters in reply toCrystallmatters

Thank you , very kind xx

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