The Faces of Guillain Barre 2017: Day 17- Hayley

Wednesday, May 17, 2017 0 Comments

On 26th April 2010 my life as I knew it changed forever. My whole life evolved around sports, I was about to embark on a trip of a life time to help underprivileged children in Uganda, Africa. I was going out there to teach football. Through coaching soccer I could have given the children the chance to excel and learn knew life experiences through playing football. I had to have the yellow fever vaccination to be able to enter the country. 

The next day I awoke with breathing difficulties and weakness in all four of my limbs. As the day progressed my symptoms were getting worse and my friend made me go to A&E with her (my parents were on holiday). I agreed to go having no idea of what was about to follow.

I had a battery of tests and the doctors thought I had swine flu. I remember having tubes coming from everywhere; the arterial line coming out of my neck was the most painful. The weakness had spread to the whole of my body from the neck down. I was suffering badly from pins and needles and my eyes were extremely sensitive to light. I wore sunglasses to help this. The neuro consultant was not happy with how I was progressing. My breathing deteriorated and I was admitted to the intensive care unit and put on a ventilator. My weakness soon turned into paralysis. I was completely paralysed from the neck down. I couldn’t move anything not even slightly. I remember at not being able to itch and itch and get my eye out of my eyes. I hated this and I was in so much pain. I had many more tests including MRI and CT scans, nerve conduction tests, many lumbar and blood tests everyday. I was then diagnosed with Guillain Barre Syndrome (GBS).

I don’t really remember much of the next few months. I was in and out of ICU barely making no improvement whatsoever. I was receiving physiotherapy for my body and chest. My mum would also give me reflexology. I was so scared, I didn’t know what was going on neither did anyone around me. I hated being in hospital. I was in a huge amount of pain. I dreaded the time of day when the nurses washed and hoisted me. Any movement and touch was so very painful. My nerve endings were on fire. Imagine you can only feel intense pain coming from all over your body but cant move a single thing.

I started to make slight improvements starting with my breathing. I eventually came out of HDU and ICU and onto a general ward. This was scary because whilst in HDU and ICU I was nursed 1:1 so if something went wrong the nurses and doctors were onto it quickly. But on a general ward your just kind of left. Not long after being on the general ward I was moved to a Neurological Rehabilitation Unit. I received vital support from the whole therapy and nursing team. This included physiotherapy, occupational therapy, speech and language therapy and neurological psychology. But, things went downhill and I was moved back to a general ward for more intense nursing care. This was a terrible time and I was stuck in a bed with no stimulation whatsoever. I remember crying uncontrollably. I just wanted to move. I wanted to be on the floor, this felt more normal than being lay in bed and sat in a wheelchair.

I then had the most horrendous news anybody could hear. My beautiful best friend had died. She, with her sister were both hit by a man on a motorbike. Sue died within the next few days. Thankfully Julia was ‘okay’ (as ok as you can be when you’ve just had your sister die). I couldn’t cry, I felt numb.

It was at this point in my recovery I saw all the cards letters and presents from my family and friends. Each card contributed to the increase in my shattered confidence. I was hit by a huge over whelming feeling of guilt. I was horribly aware of all the worry and pain I had caused my family and friends. I spent long periods of time by myself which just allowed my thoughts and feelings to take me prisoner.

The nurses had to do everything for me. Wash, dress, feed me and put me in those lovely pink nighties!! I had not been outside for months and months, the first time I went outside I was gripped by paranoia and I was scared. I did have a lovely time though, just being in the fresh air.

Over the next 2-3 years I was starting to recover some movement. I could now cheat in OT when learning how to brush my teeth. I would move my head forward instead of bringing my arm/hand to my mouth. The same when brushing my hair and using a fork. My physio used to get on my nerves, head up, back straight, boobs out, knees straight, ankle flat oh and stick your tongue in. I loved hydrotherapy though, it was the highlight of my week. On land I could barely weight bare, but in water I could walk freely. It felt amazing. 

My friends did some different funding raising including a 24 hour bike ride and the Manchester 10K run. In early 2014 I did a walkathon. Previously I had managed to do 7 steps, but on the day of the walkathon I was determined to do 10 steps, and I did J
I raised a lot of money for the GBS charity (GAIN).   

Whilst in rehab my parents told me that they had separated and were getting a divorce. I didn’t take this very well, I blamed myself.    

I had lots of support from people but on the inside I was really suffering. There was so much positivity coming from other people but inside me I felt empty and hopeless. I was suffering from depression and was on a downwards spiral. I had a psychiatrist come to see me and he wanted me admitted to his ward, so this is what happened. This was the lowest time of my life. Days turned into weeks, and I still felt so hopeless. I would spend all day in bed which is kind of ironic because when I wasn’t able to get myself in and out of bed all I wanted to do was not be in bed.

I had a lot of support from the GBS charity called GAIN and also the GAIN group on facebook which is full of individuals who have experienced or cared for people with GBS and other associated Inflammatory Neuropathies. These people just ‘got it’.

After a huge fight on her hands from my mum I finally got the funding to move back to rehab. Mum had had meetings with MPs, Treasures and many more people to get my funding sorted. If a person didn’t have someone to fight there corner for them it must be terrible. I am very lucky to have such fabulous family and friends who fight for me. I went to rehab in Wales for 2 years and on the 3/3/16 I finally got discharged and was able to move into my own house living completely independently after nearly 6 years of being in hospital.

I was so happy to help my nan celebrate her 80th birthday in New York. I have managed to play a little bit of hockey again for a couple of minutes at a time. I’ve tried trampolining but failed miserably. I now plan to take up archery, seems safer, well for me, don’t know about people around me. I go to the gym and have a personal trainer. I also go swimming and to pilates. I am doing the colour run in Manchester on the 1st July. I saw this advertised in my first year in hospital and I said to myself I have to do that when I can walk again.

I still have a lot of pain especially in my back which limits my ability to walk, I have to walk with crutches and I have permanent nerve damage and I am still on a lot of medication but hey I’ll take that seeing a few years ago I thought I would never walk again – and yes one doctor did say he thought it was very unlikely that I’d ever walk and live a independent life. My weight doubled whilst I was in hospital due to all the medications and the inability to move. But now a year after being out of hospital I have lost 4 ½ stone, which makes me very happy.

I have set backs both physically and mentally but with the support of my amazing family and friends I get through them, and will continue to do so.

After living with GBS for nearly 7 years my life is now heading in a completely different path. I can no longer do sports, but who knows maybe in the future I’ll be able to do it again. I currently volunteer at 2 children’s charities who support kids with learning and physical disabilities and I also volunteer at a special school. I absolutely love it and couldn’t think of a better way to spend my days. On my journey I have met some incredible people who know play a vital role in my life. I would not have met these people or be on my altered path in life if it wasn’t for GBS. So I am grateful to GBS for that. It has made me into the person I am today.   

I am going to spend the rest of this year volunteering and gaining as much experience as possible with hopefully starting paid work when my body is ready to. I am taking things slowly as I still tire very quickly.

I decided that on my GBS anniversary every year I am going to do one of the things on my bucket list. This year it is to use a pottery wheel to make something. But my main goal, within 5 years from now is to go on the Inka Trail in Peru with my mum. We made this a deal when I was in my early days in hospital.   

We go through these challenges we face to remind us of how strong we really are. I’ve learnt that life is so very short and that things can change in an instant. So you need to get out and do the things you want to do and live your life to the fullest NOW, and ENJOY it. We all have this strength inside of us that we don’t know we have until we have to use it.


Here is a link to a video Hayley put together recently.