After Critical Care — Scope | Disability forum

After Critical Care

Ami2301 Community Co-Production Group Posts: 7,947 Disability Gamechanger

From 5th March 2018 til the first week in April I was in Critical Care. The day before I was admitted I didn't feel very well, ended up throwing up bile and falling asleep at noon. The next thing I know, I'm lying in a hospital bed, not paralysed but I just couldn't move anything at all. I didn't know why I was there. I couldn't understand why I wasn't allowed to drink or eat normal food. Turned out I was admitted because my mum had an instinct something was wrong and I'm glad she phoned 999 because I doubt I would be here today. My mum and my partner couldn't wake me up, they are still not sure if I had a fit but I was jerking about and shaking badly, my partner held me to stop me shaking. The paramedics couldn't get my blood pressure and they tried to get me to stand up but I just fell to the ground. I have no recognition of this. Once I was strong enough my mum and my partner told me what happened that night.

I came to realise I had a bad cough but still didn't know why I was in hospital. I was having constant X-rays on my chest, I had so many machines around me, ventilators, dialysis, IVs etc. Not knowing what was wrong with me scared the living daylights out of me. I genuinely thought I was going to die. My mum never told me she loves me, her actions speaks volumes otherwise. This is when i knew something really was wrong with me because she kept saying 'I love you' every 10 seconds. Honestly, and she knows this now, If I had died then I would have been happy and at peace knowing my mum told me she loved me. As much as I want to share my experience it still makes me cry when she told me.

Oxygen masks, breathing tube down my throat, Trachy fitted in my throat. Xrays showed that I had contracted Bilateral Pneumonia and my body was too weak to fight it. I had to be put in a induced coma to let my body rest because it had just had enough. I woke up on Mothers Day and most of my family were all gathered around me. The first two people I saw were 2 of my sisters and one of them only chooses when she wants to talk to me when it suits her, so my first thought was 'what the hell are you doing here' so by that I knew I was still sane.

2/3 days later I was transferred to Critical Care in Cambridge for genetic testing to find out why I had lost the ability to walk. My spinal cord had become inflamed, medical terms Transverse Myelitus. The next few weeks were the most longest and daunting days ever. Nurses and doctors constantly around me. I'm deaf so this made everything so much scarier because nobody could communicate with me.

Its now been 27 weeks since I was admitted and I've been in a specialist neurological rehabilation centre for the past 14 weeks to potentially walk again. I've suffered really badly of flashbacks from critical care and strange dreams that don't make any sense. The doctors said this is normal for people who have been in critical care. I feel so alone with all this and I've been wondering if there are any others out there who have been through the same or even know someone who has been through it.

Its been really hard writing this but I feel happy to share with the supportive community. Thank you for reading this, it means a lot.
Disability Gamechanger - 2019


  • thespiceman
    thespiceman Member Posts: 6,390 Disability Gamechanger
    Hello @Ami2301 Please can I say thank you for sharing your journey with the community.

    I know that must have been difficult and not easy to do.  Say how you are emotions and feeling. Being honest and open.

    I sincerely hope that you have inspired and give others the knowledge to cope with what you have been struggling with.

    Can identify that life is a precious thing and no matter who and how we are need to express and give others insights .  That we are all fragile and need to find the strength to move forward.

    No matter what the illness and issues are.

    I know that we as a community appreciate what you do for the well being and benefit of the forum.

    All I know I have found a friend. Who and no matter how hard the day is. Always have time for sharing.

    I can myself been through hospital and had many experiences.  As we have discussed many times. Yet it is trying to cope with strange surroundings, food, people and most of all . Not understanding what is happening to you.

    I once stayed in a teaching Hospital in London for a series of gruelling operations on my hands.

    Had a constant stream of junior Doctors wishing to use you for their own research.  Which was interesting . Having to explain to a group of people who and why you are disabled and having operations.

    Only ten years old at the time.

    Good to talk about it because it can in my opinion. Help with the long journey of recovery.  No matter how long that journey is and endured.

    Thank you

    Your friend


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,565 Disability Gamechanger
    Hi @Ami2301, thank you for sharing this with us all, you're an incredibly strong person! It sounds like you've been through such a difficult time, I am glad to hear that you had people around you during this time for support. I can completely understand why this would be hard to write, I hope it has helped somehow to get it all down on paper. You are so supportive on the community and I hope we are able to give that support back. Hope you are having a lovely day Ami :)

  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,947 Disability Gamechanger
    Thank you so much @thespiceman and @Chloe_Scope

    The community was on my mind at times during critical care. Hurt me so much that I couldn't contact you all. I was so excited to be back on here! I love this community so much and I really don't know what I would do without it. Thank you to each of you who have been part of this journey :)
    Disability Gamechanger - 2019