Looking back..it’s the 14th October 2012, and it’s a normal, uneventful start to another day at Sixth Form.
I feel very allergy-like today..the pollen count must be high because my throat feels tight and I’ve got a rash all over my body.
I’m starting to feel really unwell to the point I can’t concentrate. My throat and tongue are swollen and itchy and my breathing really difficult. The room starts spinning and I know I need to get to the medical room, so I ask if my friend can walk me there in case I faint on the way, but luckily it’s not far from the Law class I’m in.
When I get there, I tell the staff what’s wrong and they phone an ambulance. It’s all a bit of a blur; all I remember is trying to stay awake whilst the words ‘allergies’, ‘anaphylaxis’, ‘adrenaline’, and ‘epipen’ are thrown around the room. My parents arrive in what seems like seconds, but they just keep telling me to stay awake.
I next remember being in an ambulance with blue lights flashing and sirens blaring. The paramedics kept reassuring me that I’d be okay and - after a few injections - I did start to come around a bit. I later found out that it was adrenaline (Epipens) that they were giving me, along with a concoction of steroids and antihistamines.
I was so swollen, my tongue didn’t even fit in my mouth so I was looked after in ITU. It seemed like overnight I’d developed hundreds of unexpected, changing, developing allergies - some life threatening - and I had no clue what I was safe with and what would kill me via contact.
We all thought (and hoped) that it was a one off, but little did I know that this admission would be the first of hundreds. That episode was the start of many that made me a ‘medical mystery’, and that day was the start of the hardest, most emotional, toughest, confusing, frustrating, painful years of my life..
Today is the 14th October 2020 and I’ve spent the day in Portsmouth with Sam for a few hours.
When I get home, I’ll return to my bed; the place I spend most of my time because I’m unable to rest elsewhere at home.
My bedroom is prepped with a horizontal hoist which transfers me from my wheelchair to my bed, (and vice versa), which help with the multiple dislocations I have each day (with which a faint or seizure tends to follow!).
I also have a hospital-style bed which also helps with the positioning of my joints (especially relieving pressure where and when I need to), and prevents pressure and moisture sores on my skin.
I have 2 wardrobes packed to the very brim with medical equipment, a trolley with emergency equipment, 2 boxes & cupboards with meds, an IV pole for my feeding pump (and any drips I need), a suction machine for critical times in case my tracheostomy blocks, and that’s just a start!
For now though, when I’m out, I’m in a wheelchair that’s reclined at just less than 180 degrees (i.e. laid horizontally) to try and stop me fainting or in case of a seizure. My muscles are too weak at the moment even if I could walk, however.
I’m with my carer who came on shift at 8; crossing over with the carer who worked from 8 last night, to relieve the carer from yesterday, and so on and so forth - my ‘24 hour care’ means there’s never a time when a carer isn’t with me.
I’m wearing a mask over my nose and mouth (like the rest of the population), but it’s hard to cover my tracheostomy as well without compromising my breathing. I have my face mask exemption to hand though.
I’m fed straight into my Jejunum - the start of my small intestine (so the ready made feed formula bypasses my paralysed stomach). I have my feed for 20 hours per day and likewise my carers top up 60mls of water every hour to keep me hydration and keep my electrolytes as normal as possible, so my PoTS (faints) is as well as can be.
A urinary catheter drains my dysfunctional bladder at the moment whilst I wait for a Urostomy and for my bladder to be removed. It’s a big decision to make, an even bigger operation, but overall will hopefully give me a better quality of life.
When it comes to illnesses & injuries, ‘anniversaries’ and memorable dates are a strange thing that everyone deals with differently; some celebrating, and some mourning - in a way - for life beforehand.
Despite the complete U-turn that my life has taken, I’m so grateful and class myself as one of the ‘lucky ones’. 8 years today I became unwell, and for the past 8 years I have had family stick by my side, fight for my care, co-ordinate my carers, and helped me enjoy life no matter what and have the equipment in place that I need to live a ‘normal’ life. I’m so grateful for all of the support around me; from my family, carers, and friends, medical professionals, online support groups and charities, and also more recently from Sam. If it weren’t for being ill, we never would have met in the first place.
Don’t get me wrong, it’s been more than tough and there have been times where I honestly didn’t believe I’d cope. There’s been times where I’ve lost all my strength, all of my willpower, and been completely on my knees, but I’ve got through it all so far despite a VERY challenging 8 years, so I know I can cope with the next 80!
