“We are not sure if you will be able to walk again”

At the end of 2016 I started losing my hearing, March 2017 I lost my central vision. My health deteriorated rapidly and became wheelchair bound and housebound. Which led me to undergo various tests at the Neurology Hospital in London early this year.

The day after I came home, I woke up with a horrible burning feeling in my stomach, I began vomiting bile. Just before lunchtime I fell asleep. Little did I know, my life was about to change forever.

I woke up in hospital, machines around me, family around me. I had no idea what had happened. I remember having an NG tube, IVs in my neck. All I knew was that something really. bad had happened because when I spoke to my mum, I said “I love you” and she told me she loved me too. My mum has never told me she loved me before. Don’t get me wrong she is the most amazing mum in the world and her actions speak louder than words.

All I knew was that I was having trouble breathing and I couldn’t cough. This petrified me which understandably made me extremely anxious and agitated which wasn’t helping me, my STATS kept dropping. I thought I woke up the next day but I didn’t, I woke up 4 days later. I learnt that I had been in an induced coma to let my body rest because the more anxious I was, the weaker I was trying to fight with whatever was wrong with me.

It turned out that I had Bilateral Pneumonia and I was really ill. Nobody could say for certain if I would make it through or not. I really did think I was going to die. The next few nights I laid in bed, almost unable to move, praying that I would make it through to the next day, I prayed to all my family members and even pets who have passed away, to give me strength to get through this. I am not a Christian but I do believe there is a God. Also, I would think to myself that I would die happy knowing my mum told me that she loved me.

Early hours one morning, I was transferred to a different hospital. I woke up in a side room and my mum and sister came to see me. Throughout the evening, my STATS began dropping again so I was then moved to Critical Care. I lost count how many times I was in and out of sleep. Plus I kept transferring from ward to ward. There were so many nurses and doctors around me at one point, taking X-Rays on this portable machine (which I thought was quite cool!) then an oxygen mask was placed over me and after a while I was asleep.

To me, this part always makes me laugh, I woke up and everything was really hazy and I saw people flitting about. I thought to myself ‘I feel bloody fantastic!…clearly I wasn’t as I had a breathing tub, more IVs, more machines around me. I was hallucinating and was heavily sedated. When I was more aware of my surroundings, well to me anyway, i started waving at anybody who walked past and I didn’t know who the hell they were and wait for it…everybody remembers Pingu? I laid in bed shouting ‘NURP NURP’ every 10 seconds. My mum and my best friend couldn’t stop laughing 😂

A week or so later I had a tracheostomy and it freaked the **** out of me! Every time they had to change the valve I just laid there thinking ‘oh my god, oh my god there is a hole in my throat!!!! Obviously with any operations there are risks, so it was 50/50 whether I would be able to talk normally again. Ewan came to visit me and the nurses changed the valve to one that would enable me to speak. I turned to Ewan and said “I love you”   Ewan cried. He was so happy to hear me speak, even though my voice was really husky.

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I started having physiotherapy and reality hit me. I couldn’t sit up by myself. My balance was horrendous, I had to have 3/4 nurses around me to support me. I was dependent on a hoist and I wasn’t sure about how much of my mobility had been affected.

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I was transferred back to the hospital I was first admitted to a week or so later. Still in Critical Care because I was being weaned off the ventilator.  Started physiotherapy with a new team, they tried to get me to stand, but I couldn’t bear any weight in my legs and feet and was in excruciating pain. I had to learn to stand up again.  I thought to myself ‘Surely I can still walk?’ How wrong I was…

Ventilator-free and trachy-free I was moved to a ward for patients who have had strokes, only because I needed the same physiotherapy as they did. My first physiotherapy session didn’t go too well which scared me and left me worried about continuing physio. During the 8 weeks I did learn to stand again, with two physios in front of me, one each side of me and one behind me. Also with a standing aid which I can’t remembe4 the name of.

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There were a series of sessions that I kept breaking down in tears, I wanted to give up because it was all too much.  I spoke to my physiotherapist and said “Does anyone actually know why I can’t walk or why this has all happened? “ At th time, my only way of people communicating with me was by writing on a whiteboard.  She wrote “Your spinal cord became inflamed”

I looked at her in horror. All I have ever had is my tonsils and rib muscles inflamed. But my spinal cord?!?! So everybody was unsure if I would ever walk again. Devastated was an understatement. Ewan and I were going to get married at some point and not knowing if I would be able to walk down the aisle broke my heart.

I was on that ward for 8 weeks, got to know some amazing people and made memories which I will cherish forever.  I wanted to do them proud in my last physio session and with lots of support, I took 6 big steps! As I sat down, I burst into tears and so did 2 of the physiotherapists. Happy tears!

The next day was emotional, as I was leaving the ward, some nurses (who were free at the time) and the physio team stood in a line in the corridor to say goodbye and give me a hug. I was really going to miss these guys, I couldn’t stop crying. Paramedics came to take me and leaving the hospital, as we drove away, I looked back at the building and thought ‘I really didn’t think I would leave this place alive’, I whispered ‘Thank you’.

Check out Rehab Antics for the next part of my journey!

9 thoughts on ““We are not sure if you will be able to walk again”

  1. This is a really amazing breath holding story. I myself have a debilitating, degenerative, really rare neurological disorder that leaves me mostly bedbound since 2015, and I could really identify with a lot of the emotions that you express in this post. I’ve been in those in-and-out-of-consciousness-in-the-ICU-for days-and-nights-on end funks, they are really weird indescribable experiences. For me it always feels like I’m falling or spinning through black and then I’m not sure where I am or I keep changing places where I am and I’m not able to differentiate between dream and reality.

    Its also really hard to face facts when you get sick and realize your sicker then you were before and now your life is different. I could identify with those emotions too. You have a really strong powerful writing voice and writing presence and I can tell you’re a fighter. Us chronic illness warriors have to be.

    Liked by 1 person

    1. Wow, Becca! Your comment left me in tears, thank you so much!

      It was the most frightening experience of my life, as I am sure it was yours too.

      If ever, night or day, you would like to talk, please don’t hesitate to get in contact, my inbox is always open.

      Stay strong ❤

      Like

      1. See, thank you Ami! That’s so sweet of you!! Us chronic illness warriors have to ban together, it’s much better than fighting alone!

        If you’d like you could check out my blog at http://www.chronicallyalive.net. My blog is kind of like a memoir telling the story of my descent into my rare, degenerative, life threatening, and life limiting neurological disorder called small fiber autonomic polyneuropathy, and my brain tumor. It talks about the search for a diagnosis, the accusations, the misdiagnosis, the denial, the eventual slam dunk diagnoses, the surgeries and treatments and living life chronically Alive.

        I write the blog for myself and also to reach out to other people in similar situations to hopefully make them feel validated, understood, and less alone. I also wrote it for the general public to show them what life is like with a chronic illness to hopefully spread awareness.

        Liked by 1 person

      2. I have been reading a few of your posts…I am so sorry for everything that you went through when you were younger. I understand slightly as I was admitted to a centre for children with mental health illnesses. Becca, my email is on my contacts page if you would like to talk. Night or day, always remember that x

        Like

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