18/3/18 - I am currently selling raffle tickets for the Easter Fundraiser' (information on how to purchase tickets can be found here).


3/3/18 - I am currently going through the process of redesigning this blog so that 'Bravery Bottles' is separate from my personal blog; where I post about my illnesses and life updates..this means that sometimes, my blog may be closed from time-to-time, but I’m always available to be contacted at

Monday, 5 February 2018

The parts of Chronic Illness that leaves invisible scars

Part of the process of setting up 'Bravery Bottles' has involved looking back over the past few years, and even further, to write about my childhood and the plans I had for the future; "I had plans to finish school, get the A level results I needed, graduate from Uni, and ultimately, become a Lawyer", I found myself writing. "Life seemed to have different ideas though, and it was aged 16 that I became ill." It was this sentence that stopped me in my tracks, and made me realise something that I hadn't realised before now..
Although I say that I ‘became’ ill aged 16, looking back, I was showing symptoms from a much earlier age; just not to the extent of anything out of the ordinary, and my various injuries and ailments over the years were just dismissed, as anyone would, as ‘normal’ (albeit clumsy) childhood ailments. It was at age 16 that I suffered my first, life threatening allergic reaction, and my health has been on a downward spiral since then, but whenever I talk to anyone about my illnesses, I tend to automatically tell them how I suddenly became unwell, aged 16. Looking back though, this isn't strictly true.

I've displayed symptoms of this illness all of my life, its just the ailments that tend to present first, are ones that often (and quite rightly) get dismissed as 'normal'; injuries and illnesses that aren't uncommon as a child. This got me thinking, not only of the physical effects that chronic illness has had on my body, but of the mental and emotional impacts; the 'invisible' scars that have been left, that even I hadn't noticed.
For as long as I can remember, I have always been a very ‘academic’ person; career-driven and motivated by exam success, school was never a chore for me - especially as I transitioned from my small, well-known, friendly primary school, to the all-girls Grammar School I’d always hoped I’d be accepted into. As my studies expanded and opportunities widened over the years, so did my future job prospects, and after exploring the options of teaching to translating, I eventually had my mind set on becoming a lawyer; a goal that kept me motivated, interested, and focused all the way through my GCSEs and into the start of sixth form.
It was at this point though, barely 2 months into my A Level studies, that life seemed to have different plans set out for me than the ones I’d developed and set out to achieve. I’d just turned 16; a time where academically I’d gained a place at sixth form to study the subjects I’d so carefully picked, when socially I’d found myself in a friendship circle that was only expanding, and at a time where developmentally, I was moving out of childhood and into adulthood, that I was struck down by a deterioration in an illness that I'd had since birth, but for some reason, had only become problematic when I reached 16. To make it harder, at the time, the illness was a complete mystery, and remained so for a further 4 years. 
Even harder though than the illness itself, was dealing with the effects of the illness. Physically, my body being pumped full of life-saving drugs on a regular basis; with no one having any idea of how gain any control over my symptoms; let alone stop them. Seeing my appearance changing by the day because of hard-hitting drugs - steroids that caused rapid weight gain, chemotherapy drugs that caused dramatic hair loss, and anti-rejection transplant drugs that wiped out any trace of immune system I had left, all with very little to no improvement in my overall health. 
Mentally, being forced to adapt to a life where I spent more time in hospital than at home, where the life-threatening nature of my symptoms meant frequent and necessary admissions to Intensive Care - a place where people of all ages were comatose and being kept alive by machine upon machine, seeing people of all ages take their last breath, couples arranging last minute marriages - the groom from his bed before his imminent death, both successful and unsuccessful attempts at CPR by a ‘Crash team’ of anaesthetists, overhearing conversations about newly diagnosed terminal illnesses that no one wants to hear, let alone be put in the position of discussing, and witnessing families being ripped apart by heartbreak and grief at the loss of their loved ones - all such mentally scarring and hard-to-process situations that no one should ever have to experience at any age, let alone at the tender age of 16 - the age when I first found myself experiencing these situations.

And finally, the emotional impact that it had; perhaps the hardest part of all and the part that has left the most scars. Just reaching the age of being given more independence, more freedom, and the chance to gain more life experience, snatched from you in front of your eyes. The feeling of being ‘left behind’, as you see the friends you’ve grown up with, transition from childhood into adulthood, from school to college/sixth form and university; graduating and venturing out in the world. Going from living with their parents to becoming parents, just at a time that my life was interrupted; my plans stopped in their tracks by a mystery illness, which converted my blossoming career as a high-flying lawyer, to a long-term hospital patient, the only expertise I have being in my own illness.
Now, aged 21, I have deteriorated to the point of needing round the clock care. I will achieve all that I want to; and I will eventually graduate with my law degree - however long it takes. But I've come round to the fact that good health, quality of life, and spending time with those who are important to you, are what matters in life. In terms of my illness, I do have better and worse times; classing the ‘better days’ as the ones where I’m able to leave my bed and get around in my wheelchair. A lot of the time though, I am bed-bound, which was the reason for extending my blog and starting ‘Bravery Bottles’ - to give me a hobby, distraction, and to meet and bond with like-minded people, all suffering from chronic illness like me, and its been one of the best decisions I've made. 
I can only hope that its a project that continues to develop and grow over time, because the more people that can benefit from it, the betterđź’ś