My name is Josh, a 22-year-old from Nottingham, England. In November 2017, I was diagnosed with Guillain-Barre Syndrome.
One evening, I started to feel weak and fatigued all over my body after finishing work. At first, I assumed it was a cold/flu so left it for a few days. A few days later I felt a lot weaker, sickness and struggled to walk. My legs felt extremely heavy and had tingling sensations in my toes and fingers. It was almost like my legs were filled with concrete and I was carrying this extra weight with me. Soon after this I told my GP how I was feeling and the verdict was that I have a viral infection. I went home to rest but as the days went by, my symptoms worsened and developed. On the second visit, he referred me for some blood tests but it wasn’t until I was unable to walk at all when I was finally admitted to hospital. I had to be carried by my parents into the back of a car to get to A&E.
When I was first assessed at the hospital, I was told I had Glandular Fever and the struggle to walk was due to dehydration. At this stage I was given the option to go back home and rest but I knew my body just wasn’t right and requested to be observed overnight. Sure enough, once I was looked at further the next day, it turned out I did have Glandular Fever but the dehydration was actually GBS that was triggered by the fever itself.
It was 18th November that I got my diagnosis but to ensure it was accurate I went for a Lumbar Puncture Procedure. As someone who hates needles, this wasn’t easy. In fact, to make matters worse, the doctor performed three unsuccessful attempts before I was taken to theatre for a specialist to collect the fluid from my spine. Whilst we awaited these results and I recovered from a tiring and painful procedure I was put onto the treatment for GBS to be safe. I was told it was important to treat GBS early to stand a chance of a successful recovery. I was put onto Intravenous Immunoglobulin (IVIG). This is a treatment made from donated blood that contains healthy antibodies. These are given to help stop the harmful antibodies (those sent by the immune system) damaging the nerve cells further. I was informed such treatment usually takes 4-6 weeks to kick-in. In addition, I also undertook a nerve conduction test which monitors the signal strength of the nerves. This came back as ‘severely damaged’.
As the days in hospital went by my condition deteriorated. At its peak, I was unable to move my legs and arms. I wasn’t able to sit, stand or walk. I couldn’t chew, talk or do basic human things without help from family and nurses. My whole body ached and mentally it started to eat away at me. It was all very new to me and I knew very little of the syndrome. I was scared about just how much worse things could get. As a young active sports fan, I lost my dignity, privacy and independence. Numb and pain 24 hours, seven days a week, every day was a challenge.
Standing for the first time
Thankfully the only part of my body it didn’t affect was my chest which meant I avoided ventilation. As a result, once the Glandular Fever symptoms started to improve I was able to begin my road to recovery. Two weeks after being admitted to hospital I was transferred to the rehabilitation unit where I learnt how to do all the things I lost due to GBS. From sitting to eating and from talking to walking. I spent a total of four weeks at this unit before I was deemed fit enough to go home. This meant I recovered so quickly, I was only in hospital for little over one and half months in total. For an additional four weeks, I received physio therapy at home and was given daily exercises and plans to perform.
Between January and April 2018, I focused on getting my strength and balance back. Pushing myself each week, taking each day as it comes and setting myself personal goals. As I write this in April itself, I have just celebrated my 22nd birthday. I am at the stage where I can drive my car once more, back to work, eating normally, standing, walking and running. I have started to train in football again and all of this has gradually come back whilst setting those personal weekly goals.
Despite feeling such a long and difficult battle, I feel I have won. I have been told that I have made one of the fastest recoveries from GBS Nottingham has ever seen and I am proud to say that.
Progress
I realised during my recovery I could get so much from my experience other than negativity. I wanted to create awareness on GBS and offer support to those fighting it. I wouldn’t describe myself as an inspiration but by making such a quick recovery, I felt I had a story to tell that proves you don’t have to take years or even months to fight back. I started running a Facebook page soon after I came out of hospital. ‘GBS Fighters UK’ (https://www.facebook.com/GBSFIGHTERSUK/) aims to offer advice, support and information on the syndrome through my own experiences and knowledge. It has its own brand and allows people to either directly message the page or email the delegated address asking any questions they desire about the illness.
I was also fortunate to get the attention of local media and my story featured in the paper (https://www.nottinghampost.com/news/nottingham-news/university-graduate-learn-walk-again-1219284)) and on TV (Notts TV) that has helped spread the word on GBS- what it is and how to look out for it.
Furthermore, to help show appreciation for the care I received in hospital, I teamed up with my old student radio station to run a 24-hour cycling challenge. We smashed our initial fundraising targets and reached over £1,500 in total. This money will go to the unit the treated me and will contribute to a new garden where patients similar to me can go and relax in the future. A JustGiving page was set-up (https://www.justgiving.com/fundraising/wingingitforjosh) where my story was shared and where anyone could donate to such a great cause.
To round-off a spree of positivity, I have signed up as a member of the UK charity GAIN (http://www.gaincharity.org.uk/) who bring people like myself to together who offer support and encouragement to future fighters. I have done all of this simply because people shouldn’t be diagnosed with an illness they know nothing about. It made it tougher believing I was never going to walk again and that was purely down to the fact I didn’t have the knowledge needed to comprehend what I was going through. I also wanted to turn around and say for every negative aspect of my battle with GBS, I want there to be a positive. I will remember the work I have done so far since my recovery and I can always say that I went through GBS to make these positive changes in my life.
It goes to show that GBS can knock you but it doesn’t have to defeat you. It took a fair few weeks and it was extremely emotional but I got there. Whilst I continue to take Gabapentin on a slow reduction for pain relief and I may still have weakness in my legs, I am now ME once more. I am looking forward to pursuing my dream career in sports/broadcast journalism and GBS is not going to hold me back.
Other than my GBS dedicated Facebook page, I often upload my personal updates on my social media:
Email: joshuawing@hotmail.co.uk
Instagram: @wingdiddy
Twitter: @wing_josh
