Astra Zenica, May 2021

About 2 weeks after my vaccine, I started to experience pain.  I had never had a pain like this before – it was like a hot poker being twisted into my lower back.  Over the course of the next week it steadily got worse.  I never for one second thought it could be related to the vaccine. Prior to my vaccine I was fit and healthy 42 year old  with no underlying health conditions of any kind; I worked in the roofing and cladding industry which is a physically demanding job.

After about a week of struggling with the pain my family said I should visit my GP.  Under normal circumstances I would wait until my head’s literally hanging off before I’d even consider seeing a doctor but I went.  On the day of my appointment d I noticed my left eye brow wasn’t working.  I still didn’t think it was vaccine related at this point. After giving him a description of the previous week and informing him my left eye brow wasn’t working he examined me and asked me to raise both my eyebrows, which I couldn’t.  He immediately turned his back to me and called an ambulance and as he was unable to get one immediately he turned to me and asked if I could get to hospital as soon as possible.  He gave me a letter which he said was a recommendation for an immediate brain scan as I had what looked like a bilateral facial paralysis and it was very serious and that the doctors at crosshouse hospital were expecting me,

I made my way to hospital and after waiting 6/7 hours I was taken to a room and was examined by two different doctors and eventually sent home that day with 6 valium.  Both doctos I saw told me they had no idea what was wrong but if my condition got worse I was to go back to A&E.  No brain scan was given.  Two  days later the pain in my back was incredibly painful and my face was completely paralysed I couldn’t talk or eat. Both my eyes were completely pinned wide open; I couldn’t blink or close my eyes at all. At this point I was scared to death and thought whatever was wrong was going to kill me,

I returned to hospital and was immediately admitted and was told I had what looked like a brain tumor.  I waited what felt it like an eternity for a CT scan. While I was waiting I rung my family and friends to basically say goodbye because I didn’t think I was going to survive. I was scared to death and still didn’t think it was vaccine related. I eventually got a CT scan then a nurse took me into a room and said the CT scan did not detect a tumor but there was unusual activity in the front of my brain, however they had no idea what it could mean. She then told me I was being admitted to the acute stroke unit and that even though they did not think it was a stroke that it was the best department as they thought what I had was neurological in nature.  The neurologist examined me and asked me about the weeks leading up to the symptoms starting.  When I told him I had received my vaccine there weeks earlier he said he thought he knew what I had but the only way to determine if his suspicions were correct was they had to – in his words – test me for every condition known to man.  I then heard the words vaccine induced Guillan barre syndrome for the first time. .

The next week in that ward was harrowing while they tested me for everything.  I was awake for 6 days while they discounted one condition at a time. To cut a long story short – after days of tests and literally no sleep and being told it would be several days before they could get me to the MRI, I honestly didn’t think I could survive without sleep.  I told the neurologist I was leaving as I felt I had to escape the hospital or I wasn’t going to live to even get to my next MRI.  They could not give me sleeping tablets because then the results of the MRI would be affected.  I left against the advice of the doctors, but had an appointment 4 days later for an MRI. 

I was told not to come out and cause a panic by telling people that I had a possible vaccine injury because it was important people got vaccinated. He told me that GBS presenting with bilateral facial paralysis was extremely rare; that the chances were 10 in 38 million to have a reaction to the vaccine like mine.  The upshot is that the MRI showed I had acute inflammatory demyelinating poly neuropathy/ Guillan barre syndrome that it was a suspected vaccine injury and that I wouldn’t receive any treatment as it is self-correcting and the treatment was too risky.  The condition disfigured me for close to a year.  I am still symptomatic writing this more than a year and half on.  I get nerve pain in the back of my head, regular head aches and numb patches across my face. I get crippling anxiety and depression and I’ve been on amitriptyline and propanol since I got out of hospital and have developed a tremor. I’m not as sure footed and my coordination is not the same and for someone who works at height and operates heavy machinery that is a big problem.  It’s been life changing.

I applied for benefits I was put on limited capacity for work/ universal credit but was turned down for pip.  The pip assessor stated she had never heard of my condition but read an article where a person with GBS who was fully paralysed with locked in syndrome made a full recovery inside a year so rejected my claim. Out of absolute disgust I didn’t appeal I was determined to get better and not have to beg for benefits. I regret that decision as I’m still symptomatic and unable to work. So now I’ve just been trying to pick up the pieces of my life and if it wasn’t for the support of groups like VIBUK and Scottish vaccine support group who are made up of other vaccine injured people I don’t know where I’d be.  I’ve had no assistance of any kind from any PIP benefits, the SNP or the UK government.  We, the injured, deserve better.