Flayed Flesh ,Carved soul ( thought s of my life)

[Analogue45]

Over 2 years have passed stripping everything that made me,

I could do 10k jog before 10 hour shift , what shall I do on my days off

Drawing painting, sculpting creating what shall I do redesign garden decking layed in hours ,manicured lawn , borders of colour a plenty , shall I climb the tree to prune or plant a tree ,

Drive to the country side a family picnic and exploring, nothing flash no big spender here ,content with what I had , a healthy family and roof over head , caravan holidays if we could afford it,

Picture a deck of cards each one had written a thing you did, enjoyed be able to do , ,

Learning to do gardening from 6 years with my uncle, diy I picked from dad and over time ,

Decorating, carpentry, cooking , driving , playing football, the list continues read write,,,

FND has stole my deck of cards and gave me back a much lighter deck ,

24 hour pain and discomfort, tremors, confusion. Memory loss, extreme fatigue the ability to only to drag feet aided by a walking stick , can’t drive, mood swings , , feeling totally isolated,

Not be a part of the world,

Every little thing I was that made me has been peeled off and carved out , I’m just a shell , living in my head ,

what’s left is a shit pack of cards everything been taken away , what are u left with ,

I was going to try write something poetic but this is the best I can do,

FND has absolutely Destroyed my life , cheated me out of existence being a part of the world, family ,

[Crystallmatters]

I think it is good you say as it is , it makes me feel better.

I looked in the mirror and realised it was not me anymore , I am a new person . It was not a good feeling , I am learning to build new blocks and a new me. I get it but give yourself some compassion, you are a strong person that can find a way . Good luck sorry you are feeling crap.

[Analogue45 in reply to Crystallmatters]

Thanks but I’m looking in to go to Belgium I can’t cope

[Lady4 in reply to Analogue45]

Is their a rehabilitation centre there too?

[Analogue45 in reply to Lady4]

no euthanasia legal

[Lady4 in reply to Analogue45]

Silly me, no way, stay with us.

What is the most dehabilitating FND symptom you are experiencing today?

[Crystallmatters in reply to Lady4]

Went into Leeds, walking through the city lights everywhere beautiful, enjoying myself them my foot does not pick up I ignore it except it, then my body starts to hurt , I have to say to Juliet sorry it hurts to much holding your hand, sad, carry on walking, suddenly, my hold legs gives way before I hit the pavement my body finds instant reaction to regain balance, this happens many times . I stop observe and except , tell my brain come on , this is all good. we find a wonderful coffee shop, sit I have bubble wine what the heck mix with medication, American pancake . Really lovely , recognise the situation my brains has a few loose wires. I am learning this new me is not so bad.

FND if I can embrace will be a lot better to get on with. Thanks Lady4 for being a great help like others and an inspiration, love to you all.

[Lady4 in reply to Crystallmatters]

Just as you realise your foot isn't going to behave itself, can you snap your fingers (external focus and sensory "sound"), walk a few steps backwards (scramble the signal) and then continue forward. Just a thought.

Before you know it you will be breaking into sing and dance with your daughter

But telling your brain alls good and its body is safe is positive. I always think by reinforcing this, by action, the brain will suddenly realise it can take a step back and you can have back control and thats what you did, had a little wobble, let it wave over you and continued to have a good day. A big win.

[Crystallmatters in reply to Lady4]

I Have no tried walking backwards, I do snap my fingers a lot and it make a big difference, I will walk backwards. Thanks x

[Shimmyaway in reply to Analogue45]

Don't give up experimenting for improvement. Have you tried figure of eights?

blog.therapro.com/brain-gym....

[Jillymo]

Never except the cards that have been dealt, always question the diagnosis. Has everything else been ruled out such as a B12 deficiency, Folate, Iron ect? I was gaslighted as having FND when I know more had it than I had a boil on my bum. Keep an open mind as to what is going on with you.

[Lady4]

Don't let FND defeat you, you can turn it around little by little, be kind to yourself, we are all here for you.

[Analogue45 in reply to Lady4]

I have been fighting my entire life chid abuse , drugs , alcohol acrophobia, ptsd I got through all of it now I’m left with everything that I could do to living on the floor can just about make church once a week , I had it with everything just a hollow person can’t do anything just can’t cope with it

[Lady4 in reply to Analogue45]

If you got through all of that, you can beat FND for sure. It proves how strong you are and you can do things, your just having a bad day, hugs xx

[tabey]

well written and so true

[IceOwl]

Hello👋 I’m sorry you are feeling like this 😔 Having so many of the things that make you feel ‘you’ taken away by illness is indeed brutal and hard to accept. I too have battled some of the things you mentioned and I know in the case of drugs and alcohol, surviving that fight was very much about one day at a time, sometimes one hour at a time - I have fallen back on this approach a few times to cope with FND symptoms (it’s even been down to one breath at a time !) but it’s working and I’m here. Sometimes it doesn’t feel like it but brighter days do come and remember you have evidence of this from surviving your many other challenges. If none of this is helpful then I hope you can at least take small comfort in knowing you are heard and supported here 😌 Sending strength and peace.

[Alwayspink60]

That is so true, I couldn’t describe my FND any better than that, also mine has been 2 years of suffering but only recently been diagnosed after constant tests

Thank you take care

[Analogue45]

thanks to all the nice reply’s and support, i know everyone has there own problems and challenges , just stuck in a pit of nothingness if that makes sense mood swings are getting worse , pausitive note my dog sleeps nxt to me on the floor

[Lady4]

You never did say:

What is the most dehabilitating FND symptom you are experiencing today?

With FND its one "win" at a time and slowly the pieces will come back together.

Your dog is clearly there for you, when things are feeling too much, give him an extra cuddle or three 😊

[Analogue45]

it’s mix between pain and fatigue yes I will give dog extra hug thanks