Feel like my life as been stolen.

[Littlecook]

How many of you feel that your life as been stolen from you , its when you can't do the things you could before FND started I've got dizziness from the time I get up till be time and when doctors say you have had all the tests , and I asked how do I cope all she said was with difficulty.

I love being in the kitchen cooking but my wife watches me constantly because I'm so unstable on my feet , I can't even use knifes without being watched.

If only I could do the things I like doing and get some life back .

[Analogue45]

Hi yes. I feel exactly like that and sometimes I don’t try and be a little pausitive, I wish I could garden again I m on the floor in living room and can see the garden and it totally got to me , the I put a bit of bird food just outside window birds started to come , I started to look at the birds more now then the empty garden with so many plans incomplete,, now I have a bird feeding station “build it and they will come “ great quote from a great film do you know the film lol, now I have lots of birds and I now just look at the birds the garden just a backdrop , you say you can’t use knives , how about kitchen scissors there very handy and safer you could do the cutting of meat with them , with veg ect you can buy them handheld cutting gadgets the ones were you just put the veg in holder and Change the different types of blades and 100% safe you could do that sat down on your knee , and if too dizzy to stand buy a pan stirring, use a slow cooker you can get really good recipes even if you put all herbs in and spices in the slow cooker sat down you could get you wife to lift it to kitchen and she can turn it on , Or you could make some nice recipes in casserole dish you can do all the prep and ingredients and let your wife put in oven , it just a thought ,

But I get days exactly like yourself it’s so unpredictable, you can just feel fed up and you feel like you can’t cope , and other days where you can a get on with day and not feel as down I never have a good day it’s a bad day or really bad , but sometimes I can put up with it better the other days ,, Message me anytime I get back to you. When I can take care your friend simon. And do you know which film the quote from

[Littlecook in reply to Analogue45]

Hi Simon If ever you want to email me my email address is [e-mail].

I'm having a bad day today feels like everything getting to me , I tried doing a simple job outside in garden and went very dizzy, I come in and went to sleep .we love feeding the birds and seeing them come daily we seem to get more everyday so the seeds soon goes .

I just can't get used of not being able todo the things I could before, I have pip calling tomorrow Tuesday and a work capability assessment on Thursday if you have any tips would be great.

Take care chat soon .

Your friend

Kevin

[Analogue45 in reply to Littlecook]

Hi I hear you I just in 2 years have excepted things I used to try and do the gardening but it just made me worse just worn out fatigue totally drained ect, I stopped trying it wasn’t worth the terrible feeling the thing that made me happy now makes me ill I just excepted in time that’s how I got over the garden I’m not 100% ok with not being able to do it but now at least I don’t feel so depressed looking at it now , Everyone’s different some people are pausitive and do a little and look at it as a victory that’s fine but I used to be out there hour and hours not sit down always busy , so I couldn’t spend 5 mins out and think it’s a victory it would hurt and upset me , I think it’s how we are if you have a few things going on and u try to do things it’s a viscous cycle tomorrow is a different day and wake up with a different feeling, it's no help now when you feel in that head space but tomorrow you probably will be different just ride the wave today sea be calmer tomorrow,, simon

[eviedotty in reply to Littlecook]

Have you tried a walker that allows you to sit down and another tip I use is to use pots for planting and to work from a table. The walker can also be used as a trolley to carry pots back and forth. I started to order my plants from Amazon and the quality has been better than the local garden shops. If you cast your mind back you will find that there are a few things you do differently because the body ages and things change and basically there is nothing to be done about that you have to move with the times. The other positive thing about this is that old age won’t be such a shock because you will have practiced for it. I personally found watching the garden getting worse got me down a lot quicker than having to make adaptations to the way I worked. It’s also useful for your Pip because you can evidence what FND has done to your normal life and you can evidence a task once done in an hour now takes all day.

[Prosaic_One]

I’ve said many times my opportunities were stolen from me. I’ve been disabled for 16 years (was first misdiagnosed with MS) and before I was sick, I thought I’d become a mother. That’s been my most difficult loss to mourn. At the start, I’d just gone back to college to finish my degree & was a working musician, singer & songwriter. I was still in my 20s so the first thing to disappear from my life was all my friends. 20-somethings aren’t sensitive to real life changes like that. I’ve had to rely on my family, who have abused me since childhood. My mother took all my disability back pay because if I didn’t pay her, she threatened to either put me on the street (knowing I had no one else) or have me committed to a facility. I had to stay w/her for 4 years, where I’d blackout & hit my head only to wake up on the floor with her stepping over me, saying, “Stop with the dramatics! No one cares!” She called me worthless like it was a nickname.

My doctors never cared that I was losing abilities (walking, swallowing, speech) and just gave up trying to help. My pain management doctor told me I contributed nothing to society. I’m afraid of people today and haven’t left my apartment in about 2 years.

Before I got sick, I was trying to free myself from a lifetime of abuse. Getting sick meant I could no longer protect myself & had to lean on my abusers. I’ve had my life threatened many times by family & I’m pretty sure my mother tried to poison me. Without doctors who offer REAL treatment, I will die out here all alone. No one understands this illness & other people in my life are of the belief that because some disabled people can thrive independently, I should be able to as well. Therefore, they show no kindness and I get spoken to almost as if I’m a kind of pet, sub-human.

I just turned 44 & the most I can hope for is a quick death. No one has treated me like an actual human in so long I no longer feel like one.

[Sacsac2024]

I know how you feel. I just want to be normal again.