Today marks 9 years since contracting viral meningitis. I was 14 years old.
Almost a decade later, I still mourn for what I lost that day, but it’s also an opportunity to reflect on how far I’ve come in that time.
You can watch my latest vlog about it here.
If there had been a vaccination for the strain of meningitis I contracted in 2011, chances are I would never have developed chronic fatigue syndrome. Luckily for you, I fell ill and then decided to whinge about it, calling it entertainment.
Vaccinations are a contentious topic in the court of public opinion all thanks to a scientist who wanted some extra pocket money. The scientific community are very familiar with publication bias; papers that show no correlation or have a null hypothesis are far less likely to be published. After all, medical journals are still a commercial enterprise and need to make money, and no one wants to buy a book where nothing happens. So the scientist forged some data to give the false conclusion that the MMR vaccine resulted in autism, and the world reacted with its usual level-headed reasoning abilities. Even if this were the case, measles, mumps, or rubella have deadly consequences, whereas autism is at least manageable with the right support despite its difficulty.
However, there is a debate surrounding vaccinations that is much closer to home for me, and that is the association between CFS and vaccinations. Vaccinations make people who already have CFS feel horrendous, which I can confirm from personal experience. I get a flu jab every year, and for the next 48 hours or so I will feel like Jupiter’s gravity is emanating from my chest and I also have an elephant sat on me. However, developing the actual flu would be significantly worse, leaving me incapacitated for several weeks at best, or at worst, dead. Therefore I consider the flu jab worth it.
The real question is whether CFS can be triggered following a vaccination. Having scoured the internet the vast majority of scientific evidence that I can access suggests that there is no correlation between the two, and given that CFS is often triggered by a severe viral infection, vaccinations may even offer some protection against CFS. However, there are also abundant case reports of people developing CFS out of the blue, and it has been noted that in these cases, a vaccination has usually been given a short time before.
Given that we know so little about CFS, it’s causes, and it’s biochemistry, there is no definitive way for researchers to establish a connection between vaccinations and CFS. For all we know there could be undiscovered associations with air pollution, food poisoning, or physical injuries. Vaccinations are constantly in the media and the forefront of our minds, making them the first conclusion that is all too easy to jump to. I remain extremely sceptical, however, as having studied the biochemistry of vaccinations as part of my degree, I simply cannot align inoculations and diseases like CFS.
It is also worth mentioning at this point that CFS, while a brutal disease that can even prove fatal, places far less immediate danger on the patient than meningitis, measles, mumps, rubella, poliomyelitis, and even influenza. Sometimes in life we have to balance the risks, and take the lesser of two evils. Take the shot.
Initially, the Graded Exercise Therapy worked well, but as time progressed it became apparent that something had gone awry. I was being pressured to increase the exercise level too quickly, and the star jumps began to cause intense jarring pains along my spine. My muscles began to ache more than they had before the therapy and my fatigue increased seemingly exponentially. Upon returning to the physiotherapist, I was advised to stop the exercises, and was also informed that I would probably need to start using a wheelchair when I left the house. Even after stopping the exercises, the pain, fatigue, and dizziness continued to worsen, until the state in which I currently live today was reached, and I could no longer walk outside. Being too weak to push my own wheelchair, and unable to afford a powered one, I had to rely on my parents every time I left the house and had no independence.
It took three months of arguing with my school before I was permitted to use my wheelchair in there, making me more and more ill during this time. I was also denied an assistant to push my wheelchair around school and relied on the support of my peers, including those who had previously bullied me, to help me obtain an education. Fortunately after another few months, the school realised their mistake, and when I started my A-levels I was given the support I needed.
I saved up for over a year, and eventually managed to by a second-hand powered wheelchair for over £1,000. It was in this wheelchair that I completed my A-levels, and I gained the necessary independence I needed to attend university. Unfortunately, this wheelchair had air-filled tires, and with the inevitability of death and taxes, I eventually suffered a puncture. My poor wheelchair was unusable and too expensive to repair, so I ended up with a new one, this time a brand new one with solid tires.
Even after so many years of medics poking and prodding me, and modifying my medication to treat my symptoms, only one thing serves to alleviate the pain temporarily; hydrotherapy. I regularly visit the local swimming pool, where I perform gentle stretches and exercises, and even swim a little. The water removes the pressure from my joints, and for a few hours after exiting in the pool, I am reminded of what life felt like prior to the meningitis. For the remainder of my time I am disabled and pain-stricken, and while this is inevitably disheartening, there is still an element of hope in my life.
Medical research continues to improve the understanding and treatment of CFS, and without using a wheelchair, I would never have met my two best friends. One is disabled herself which naturally brought us together, and the other got run over (by accident) when he tried to get between me and pizza. Similarly, I would not have met Jarred, my beloved partner-in-crime, who I only met after choosing to remain in university accommodation due to its high standard of accessibility. It is even plausible that I would not have attended university, as the meningitis made me realise how precious life is, motivating me to make the most of it by getting an education. Of course, this blog would not exist were it not for a virus finding my brain tasty.
Disability is not the life sentence I thought it would be, and has enriched and improved my time more than I could ever have imagined, so that I live a full and happy life on wheels.
At the time, I didn’t take in the implications of what was happening. I simply swallowed the ibuprofen and drifted back into a semi-comatose state, broken only by the cold tip of a thermometer being pressed into my armpit. My temperature had decreased and I did not require hospitalisation. However, meningitis being an infection of the protective layers surrounding the brain, medical attention was advisable, but home visits from GPs were not available and I was unable to make the short journey to the surgery.
Without a doctor’s note my school did not believe that I had been as ill as I claimed, and I was forced to sit an exam just one week after contracting the illness, and pushed to return to lessons in under two weeks including sports and dance classes. After much arguing with the school I was eventually permitted to cut my workload down to the essentials, and dropped dance and sports altogether, but the damage had already been done.
After 6 months I still felt exhausted with minimal exertion, my muscles constantly ached, I was permanently nauseous, and my head felt like The Borrower’s had invaded my skull. I decided it was time to seek help and went to see a doctor. After reporting all my symptoms and undergoing a small physical examination, I agreed to have blood samples taken, which all came back negative. It was suspected that I had Chronic Fatigue Syndrome (CFS), previously known as Myalgic Encephalomyelitis (ME).
I was referred to the paediatric out-patients clinic at a local hospital to confirm this suggestion. Following a more thorough investigation, the diagnosis was confirmed, and I was prescribed pain killers and other medicines to treat my symptoms, and was referred to the physiotherapist.
The physiotherapist was a short, plump woman who was genuinely friendly and reassuring, and over the course of an hour she questioned me about my symptoms, their severity, and which regions of the body were most effected. She also assessed what exercises I was capable of performing, and decided to place me on a course called Graded Exercise Therapy. Every day I was required to do a set number of step-ups and star jumps, and to walk a particular distance, and each week the number of step-ups and star jumps, and the distance I had to walk was increased. It was designed to help me build up my energy and strength gradually, restoring me to the best state of health possible since the meningitis. Since there was, and still is, no cure for CFS, this was my best hope of recovery.
