Feeling Fed Up and Unheard

Sorry for the long post not sure what i need advice or just get it off my chest.

Not sure where to start..

Only posted on here twice both to do with Work Capability being refused and trying to fight the decision.

My Work Capability update got citizens advice with getting a Tribunal Appeal so waiting for a date for that. Got a appointment on 7th April with benefit adviser from citizens advice on what happens next, had my Tribunal bundle by post on 4th April, after reading it i can see why they refused me, the person who done the assessment ( which was done over phone on 30th Oct '25) i don't think she actually listened to anything i said. I was only given 9 points for standing and sitting part and got no other points for anything else.

I told them on my form and during the assessment that i walk slow and need to take regular breaks when walking and climbing stairs etc.. due to pain in my spine, shaking of legs and feeling loss of balance (where i tend to lean to my right and feel like i'm falling). that i do online shopping but my son 22 and daughter 19 bring the shopping in and put it away, has i can answer the door but that is it, meals my children cook for me or i use my one cup kettle, toast or air fryer because i can press the button and then go rest and they switch themselves off. When i do go out I have a lift from a friend or my daughters friend and my daughter or friend is with me, If i need to get a bus/train on a very rare occasion my daughter is with me has i get anxiety, feel like everyone is staring at me because i am in pain and walk funny. The person put on the assessment report that i can cook my own meals on problem, i can do online shopping, bring it in and put it away with no help and that i have no problem catching a bus/train by myself to a place i have been before and even a place i have never been too.

Too top that off in Jan '26 my GP done Blood tests to see if there was a underlining health issue she didn't know about that was making my Spinal Epidural Lipomatosis/ Spine Stenosis ( still waiting to see which one it is). I was found to have low iron (normal for me), low Vitamin D and possible kidney/ liver problems. while being treated for the low Vitamin D and having a sickness bug which would stop for a day or two then return and having bloods every week, i was sent into hospital has my kidney blood work was showing possible kidney damage, I ended up in hospital for 15 days where i was treated for low iron, Urinary Retention and Hydronephrosis ( Kidney damage) which the doctors/ consultants think was due to my spine (urine retention can be a symptom off my spine condition worsening) where i could not empty my bladder so the urine was going back up around my kidneys which caused the damage. I had to have a Colonoscopy and Gastroscopy (i couldn't have has a started to panic)

I feel fed up because i have a urine catheter until June possibly longer depends how on if my kidneys blood work markers keep dropping ( which is a positive thing), If i have any problems with my catheter i have to attend A+E has the district nurse can't treat me has when i was catheterized in hospital the nurses or doctors couldn't do it so a uranology surgical consultant had to do it and he said he had problems catheterizing me, so i am having to explain the situation every time i order leg and night catheter bags which i change myself has i used to work as a care assistant in a nursing home before my children were born, they consultants have stopped all my medication including pain killers so i am having to buy paracetamol over the counter after checking with my GP ( I have a appointment on 10th April after nagging for a appointment to be seen in person). when i put a fitnote in saying Spinal Disease they accepted it on my U/C journal but when i had to go see my work coach in person she said i was found fit for work last year and she can't accept the fitnote. she said the word worsening needs to be on it which i ssaid the word worsening was on the one from Jan'26 and the journal said it was accepted you wanted to see it and said you wouldn't accept it as i had been found fit for work last year. i'm so fed up of it all with them.

My daughter is my full time carer and getting carers allowance for it, I feel shaky and breathless if i stand/walk for more than 2/3 mins, my mood is all over the place, i can just start crying for no reason out the blue, struggling to leave the house because i'm finding it really hard adjusting to have a catheter, my spinal condition worsening and having to rely on my daughter or friend if i leave the house or in the house.

I'm so used to being the one since my childhood of caring and looking after people but finding it hard adjusting to my new way of life and the limitations i now have. i'm can see the positive that my kidneys are very slowly getting better just haven't felt like this since i was still with my emotionally, mentally and phsyical absive now ex husband of 14 years. I got so strong and worked on myself for myself and children but the last year and half seems like i'm just going backwards.