The story of Josh
Guillain-Barre Syndrome (GBS) is a rare neuro illness that affects one in every 100,000 people in the UK. It is so rare very little research has been conducted on the syndrome. GBS occurs usually after another illness/infection to the body and the immune system simply gets confused. It sends antibodies to attack healthy nerve cells in your peripheral nervous system which leads to weakness, numbness, and tingling by damaging the path between the nerves and the brain. It can eventually cause paralysis and potentially ventilation in intensive care because it can cause severe muscle weakness. There are few treatments for GBS but the most common is 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. Such treatment usually takes 4-6 weeks to kick-in. It’s a confusing illness but I know from experience how exactly it can affect you.
One evening, I started to feel weak and fatigued all over my body after finishing at 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 weak, heavy and had pins & needles developing in my toes/hands. I rapidly got concerned so 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. Upon a second visit, he referred me for some blood tests but it wasn’t it until I couldn’t walk at all before I was taken 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. I was given the option to go home or be monitored for 24 hours. It wasn’t a decision taken lightly as staying over-night in hospital would be difficult for any 21-year-old. I just knew there was something more to it than dehydration though and I knew my body just wasn’t right. I decided to stay but little did I know just how huge that choice was. Within the following 24 hours, I was assessed and it turned out I did have Glandular but it was actually GBS too, which was triggered by the fever itself.
I was immediately put on the IVIG (as early treatment is crucial) but a Lumbar Puncture procedure was performed to confirm the diagnosis. It is an injection to collect cerebrospinal fluid from the spine canal and causes a lot of pain in the process. They do this because it is extremely likely there are abnormalities and differences found in this fluid if that person does have GBS. I was unfortunate to have to do that four times and go into theatre for it. That is unusual for someone of my weight/body tone and especially for someone like me who has a phobia of needles.
As time went by I was eventually told it was GBS I was suffering from. 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 the help from family and nuses. At one point, I was having ice cream for breakfast, lunch and dinner as it was the only thing soft enough I could eat. My whole body ached and mentally it started to eat away at me. As someone who played football, recently graduated and was actively seeking a successful career, this was a huge blow. I lost my dignity, privacy and started to hate my body. I felt like I was being punished and thought of what I could have done wrong to deserve this and blamed my body for the condition. Sleepless nights and surrounded by other sick patients- my brain struggled to cope. I was paralysed and I was unsure when I would ever recover.
Other than the odd minor trip to A&E, I haven’t been in hospital before my experience with GBS. Not only was I trying to get used to a new and unnerving environment, I was trying to understand a condition I had never heard of before. I was constantly emotional throughout my fight. As I started to get better and my recovery began, I saw a photo of me prior to GBS. I felt I was no longer that person and it hurt me to say it. When I looked in the mirror, I saw a fragile, pale, frail ill person in a wheelchair. I wasn’t Josh anymore.
Despite the struggle, thankfully the only part of my body it didn’t affect was my chest which meant I avoided ventilation. This meant I could begin the road to recovery a whole lot sooner than others. Once you are clear of the other illness (in my case Glandular Fever) you start building strength in physio. My physios worked on my muscles to help guide me to sit-up, stand and eventually walk again. I had Occupational Therapists, speech and language therapists and a physiologist to help both physically and mentally.
I was in hospital for two weeks before I was transferred to a rehabilitation unit once I was medically fit enough to receive physio. From sitting-up, standing and walking…I wouldn’t be able to do any of of that ow without their support and determination at this unit. Just over four weeks later I was discharged and saw the outpatients team who continued to build my strength and think about getting back to work.
One of the most difficult aspects of GBS is that no one can give you a time-frame to recover. This is because everyone recovers at their own rate. Your previous health, age and how quick you get on the treatment can impact the recovery speed but it can take weeks, months or years. I had all these aspects on my side and I am grateful to say I took six and half weeks from my first day in hospital to the last in rehab. Outpatients saw me for four weeks after discharge. My decision to stay that first night was crucial here and things could be so different if IÂ didn’t.
I am proud to say that I managed to win against GBS. It was tough, emotional and had a huge impact on my family. Nevertheless, I worked hard and never gave up. It can take people months to recover but I was in hospital for a matter of weeks. As I write this, it has been three months since I was admitted to hospital. Now, I have returned to work, meeting friends, walking and even jogging. I even have realistic plans to return to the sport I love- football- in the coming weeks. I was told I have made the fastest recovery from GBS Nottingham’s hospital/rehab unit has EVER seen.Â
I want to turn my experience into a positive and have already started to raise awareness on GBS on social media. Helping other fighters and raising money to help the rehab unit that helped me. I have shared my story here to prove, you may have or suffered a rare disease…it doesn’t mean it can take over your life. In fact, you can fight back and not ever story ends negatively.
As I look back, even now it is strange and difficult to comprehend what has happened. I ask myself how did I ever get through certain parts of the journey? Having four Lumbar Punctures, many medications/injections, the unnerving night routines, that lack of dignity and of course the pain and emotion. Somehow, I got through nearly two months away from home but I am now recovering at an unbelievable speed. There are various online groups and pages that have took the acronym for Guillain-Barre Syndrome and made it stand for something else- ‘Get Better Slowly’. I have proven that it can be a matter of weeks to overcome such a traumatic and potentially life-threatening illness and by no means taking it slow along the way. Some people call me a survivor because of this, but in my mind, this highlights the horrifying power GBS could have. I simply believe I am a fighter.
Above all, not only do I think and act like Josh Wing but my whole body is once more a part of me. I am Josh Wing, who fought GBS… and won. Anyone else can too.
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