I couldn’t live with Ehlers Danlos Syndrome and Cranio- Cervical Instability without:
1. My iPhone
My iPhone is my lifeline, I use it 24/7, literally have it strapped to my arm with a seizure detection App Siezalarm on it. This detects the movements when I’m fitting and calls my mum to alert her…. She then has to come quickly to put traction on my head to relocate the skull/neck joints, if she’s not alerted quick enough it’s too late and I require an emergency ambulance and trip to resus for IV lorazepam, Oxygen and sometimes Glucose and an airway fitted, until the seizure stops… These prolonged seizures cause lots of damage, including waking up with paralysis!
She provides ALL my care day & night, even in hospital….. & without her I’d have no one to pull my head and stop me fitting! Or to put all my complex braces on to move me, or shower me or give me medication and provide all my complex care needs!
3. Braces– particularly the Aspen vista This is the neck brace I’m now forced to wear 24/7 to stabilise my neck and reduce the massive number of seizures I was having each day! I also wear a leg brace 24/7 to keep my tibia in joint and if moving I have to also wear a knee brace, back brace, neck/thoracic brace, thumb/wrist braces & ankle & elbow brace if putting weight through my limbs to transfer.
4. Camel pack
My CamelPack is a bag I fill with Juice that has a tube with a bite valve on the end, it means I can drink lying flat, and access it whenever I need to without having to ask mum for help!
5. Sunglasses/ light dimmers/blackout curtains
Going outside or anywhere with bright lighting is painful for my eyes and head, so I wear sunglasses and use dimmer switches and blackout curtains in my bedroom
My stretcher was specially designed and built for me by wheelchair services and medical physics, I’m getting a new one now that has a tilt function and can be driven by my mum. Without this I couldn’t leave my bed at all! I even managed to attend my graduation ceremony on my stretcher!
My iPad is my means of access to my social media sites and fundraising platforms, as I’m unable to use a laptop or computer due to my neck! Without it I wouldn’t be able to run my website, write letters and emails to companies and individuals asking for help, or even make my fundraising videos!
8. My Niece Katiya
Katiya is nearly 4 & she’s my reason to keep fighting! She brings joy, happiness & lots of love & cuddles to my life EVERYTIME she comes to see me. She also loves to help me and does everything from helping when I’m fitting to emptying my catheter and rolling me over!
9. Best friends
Without my soul sister Shereen and best friend Josh I’d have given up into depression by now, they cheer me up and give me hope for life post surgery, as well as helping with fundraising.
My Oxygen tank is a new addition to my life, it helps immensely after a seizure with the dizziness and chronic cluster headaches.
11. Pain relief & Antisickness medications
I now have a palliative care consultant whom prescribes my medication for me, I use fentnyl losengers now which are absorbed via the mouth membranes- so bypass my tummy absorption issues & vomiting problems. Cranio Cervical instability causes many horrific symptoms, including vomiting and nausea. This is a BIG issue for me as when I’m sick, my neck subluxes causing another seizure and needing my head pulled!
Audiobooks are my way to relax, I’m unable to read due to CCI affecting my eyes ability to scan…. So I now listen to books on my Kindle- which reads aloud any standard ebook, without having to pay extortionate prices for a proper audiobook! Due to CCI I have constant Tinitus, which is very annoying & most audible when all is quiet, so during quiet times when I’m resting my eyes or sleeping, I always listen to an audio book to mask the Tinitus and give me something to focus on when I’m in a LOT of pain, to distract myself.
CCI causes dysautonomia- a condition where the body cannot control the automatic nervous system (the automatic functions that our body does without our conscious help), this causes problems with Blood pressure, heart rate, and temperature control (plus many others), So my fan is always on, enabling me to cool down when I’m hot, in pain and sweating buckets…. If you’re coming to spend time with me bring a jumper as everyone else says my room is freezing!
14. My dog Poppy
My dog poppy has been trained since we got her at 7weeks old. She now fetches all my braces for me, picks up anything I drop and places it in my hand, & detects my seizures and alerts my mum, then tries to lick and nuzzle into me to rouse me….. As well as providing lots of love and cuddles!
15. Supporters & followers
Without all my supporters and followers cheering me on and helping me by donations of items for auction, offering to help & lend equipment at the fundraising ball, donating wristbands & even producing my website, the fundraising would be impossible! My followers keep me motivated and active online by sharing posts, liking and commenting- this is a HUGE help to me and helps get my cause known and noticed!
Thank you to ALL of you!