Jacob Willis – My GBS story

Two years on from the worst period in my life, these dark days when I was wondering what was the point of living whilst locked in an immobile body, I will be running in Surrey half marathon on March 9th to raise funds for GAIN.

As I’ve been press-ganged to write up my story, I raided my mum’s diary for the time I was ill and have used this to refresh my memory and write my story.

25th December 2011

I woke up on Christmas morning, looking forward to the day ahead like every year, but with one slight change. I started to feel pins and needles in my hands and feet but I took no notice of this and carried on as normal, having completely no idea of to what was to come! The next day, Boxing Day, was when I started to feel the effects; I struggled to lift a jar of custard!

27th December

The pins and needles had spread to my calves. I felt weak and found it hard work to even walk. My Mum was worried, so she phoned the NHS Direct who sent out an ambulance, only for them to advise us not to go to A&E as it might just be a virus. However the next day (28th December), I was worse as it spread to my knees and I was wobbling all over the place and my legs gave away several times. My mum rang for an ambulance and I was taken straight to A&E where I had blood tests but was told that I only had a virus and was sent home.

29th December

My mum and I were still not happy so she took me to my GP where she immediately diagnosed GBS. Blood tests and a lumber puncture confirmed the diagnosis and I was immediately admitted into the Medical High Dependency Unit (MHDU) and started a course of IVIg treatment.
My GBS started to spread, reaching my legs, arms, wrists, shoulders and neck in just 3 days. I found it difficult to swallow, so I had a feeding tube inserted. I still remember the tube being inserted like it was yesterday; as it made me retch. I also had a catheter inserted, which was very uncomfortable and took some getting used to! I continued to get worse over the next few days.

2nd January 2012

The bottom part of my right lung collapsed and I developed breathing difficulties so I was admitted to the Intensive Care Unit (ICU) and put on an oxygen mask. I was receiving continual physiotherapy to exercise my legs, arms and breathing. In the ICU I had tubes put on me what felt like everywhere! On my shoulder, wrists, heart monitor on my chest as can be seen in the photograph above.

The GBS spread to my face, giving me a botox-like look! This caused problems as I am deaf as well as all my family; hence we rely on lip reading and sign language. The fact I wasn’t able to move my mouth or hands left me very frustrated, unable to hold a conversation. To make matters worse, I was struggling to have a good night’s sleep as I was unable top move to a more comfortable position, stuck to only one place all night long. I started to feel depressed.

Over the next few days I made some very minimal improvements, being able to move my left arm a bit more, but I was in a lot of pain and I had to be given some morphine. I still had to rely on my family to scratch wherever I was itching.

7th January

I went outside for the first time since being admitted into hospital thanks to a specialised wheelchair which was able to support my body. I had never appreciated the fresh air so much before! I couldn’t stay out too long as I found sitting down on the chair far too tiring! Despite going outside for the first time for a while, I felt worse mentally, as I was missing out on my team’s football match, the first match they had since I had been admitted to hospital. However my team mates were thinking of me and sent me a photo of them holding my shirt which helped me a great deal.
The next day, which was about a week after being put on a feeding tube, I had a craving for Coca Cola, like never before!! Whenever someone spoke about food or drink I couldn’t listen, it was torture.

9th January

I started to feel pain around my ankle, a sign of improvement, and was even able to eat some yoghurt. As I was improving it was decided to move me to a word for stroke patients as it was thought that this would enable me to receive more attention physiotherapy-wise. I had all the wires, tubes and feeding tube taken out. However the nursing care in this specific ward was terrible.

14th January

Unfortunately I soon started to deteriorate; my GBS started to spread yet again and I started to lose the regained mobility in my hands and legs. Due to my deterioration, a bed was found for me back in the MHDU where the care was much better.

15th January

I continued to deteriorate; my swallowing got worse so I had to have a feeding tube inserted again. My mobility was now at its worst; I was paralysed from the neck downwards with a botox like face. It was then decided to give me a second course of IVIg treatment.

18th January

My worst day. I was very, very low. I started to believe my paralysis would become permanent.

20th to 29th January

The fact I was now being looked after well meant I started to recover more quickly than before. My family arranged for my friends to visit me, even though I didn’t want any visitors. When my first visitor arrived to my surprise, it gave me a massive boost, I realised I needed people around me to support me. I started to cheer up, and had a better attitude towards my recovery. I was able to try to eat and drink once again which was another real booster.
My mobility was starting to improve again. My left hand was improving faster than my right hand, ironically due to using the TV remote control.

One of my friends, Molly, decided to raise money for the GBS support group by doing a 10k run. This really touched me as she is not sporty at all. I could see I was getting better, this meant my sense of humour returned with a vengeance, and I took joy in winding up my parents and sisters, who visited me every single day.

30th January

I was moved to Neuro-Rehabilitation unit at Woking Community Hospital as they felt I was now out of the “danger” zone and needed a lot of physiotherapy. I spent the next 3 months at this Unit slowly getting better.

4th February

I had my first wheelchair outing with my uncle and his family where I had pizza and a milkshake which I enjoyed immensely. I continued to have sessions of physiotherapy and Occupational Therapy.

19th February

The nurses felt I had recovered enough to be able to go out for the whole day with my dad to watch my football team play. It was strange being wheeled around a place where I would normally be walking and running.

February to March

Progress was very slow but sure. I was able to finally walk, on a zimmer frame, something I never thought I would be excited about. One of the exercises I had was try to walk sideways , but every time I took a “sideways step” my legs kept going forward automatically, us GBS sufferer have to learn almost everything again. There should be “My First…” Book for GBS sufferers!

5th April

I had my 15 minutes of fame, where I was filmed by the BBC, for See Hear, a programme for the deaf, to talk about my progress and recovery. While they were filming, I managed to achieve a major milestone, where I walked unaided for the first time since falling ill with GBS. It was great to have it on tape. Having said this I made the discovery that I could walk unaided the night before due to a stumble, as I then had to lift my crutches and walk forward faster to regain my balance.

15th April

The day before my birthday my group of friends surprised me and turned up with the greatest present, a Manchester United shirt signed by Wayne Rooney. I even got a personal letter from Sir Alex Ferguson along with an autograph from Javier Hernandez.

23rd April

After 4 long months, I was finally discharged still on crutches. I started attending the local gym to keep my recovery on track so I could get back to my old self.

20th May

I went along to cheer on my friend Molly who was running in Bristol 10k run to raising money for GBS. Molly wrote about her run in the Summer 2012 – Issue 16 of the “In the Know” magazine. I will always appreciate the support she gave me throughout my illness.

July 2012

Being at home really sped up my recovery as I was able to start training with my team mates once again, in time for pre-season and was able to start the football season, although I was weaker and slower than before.

September 2012

I went back to college to resume my studies as I was on an Accountancy course when I was taken ill. I also went to Dover to cheer my Uncle Matthew Johnston swim the English Channel to raise funds for the GBS Support Group, another thing that I will always appreciate. Matthew wrote about his swim in the Winter 2012 – Issue 18 of the “In the Know” magazine.

July 2013

Fast forward to July 2013, 1 year later, I had achieved my AAT qualifications, won the British Deaf Cup (in May) with Fulham Deaf, scoring twice in our 5-0 victory over St Johns in the final. The cherry on top was being selected for the Great Britain Deaf football squad for the first time. We played two matches against France in Paris (in June).
In the summer of July 2013 I went travelling around Europe with Molly which strengthened my legs. Walking every days for hours, with heavy backpacks for miles was something that I thought wouldn’t be possible one year back.
I came out the other side of my GBS nightmare stronger with massive help from parents and two sisters who were there every single day, supporting and loving me. My friends, who travelled from all over the country, visited me regularly. I believe I would not have recovered as quickly as I did without them putting me in a good frame of mind.
Now I am back to my “old self” if not better! I would like to show my support for the GBS support group, along with Molly and my sister Tamara, by raising money. We will be running in the Surrey Half Marathon this coming March 9th.

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