At the age of 18 many teenagers lives are the same: school, friends, parties, clothes. Mine is a little bit different: hospital, rest, friends.
These are the main parts of my life. I have a rare genetic condition called Ehlers Danlos Syndrome (EDS), a condition called mass cell activation syndrome (MCAS), and a secondary condition called postural orthostatic tachycardia syndrome (POTS). These effect every part of my body, from joints to skin, to organs to bones causing constant pain, sickness, fatigue and organ problems to name a few.
I’m a wheelchair user and need my mums help with nearly any daily task. At the age of 15 life was normal, but after hurting my neck things went downhill. Energy turned to fatigue and sleep came during the day instead of at night. Pain took over every cell in my body and food became my number one enemy.
After years of fighting I finally got the correct diagnoses of EDS and POTS. Three years on I’m finally getting the correct treatment and another diagnoses of MCAS. My life stopped at the age of 15, but now I’m starting to find out how to start it again and positive kicking down the negative, activities becoming social and not just medical.
My time is spent watching a slightly scary amount of reality and drama on tv, baking calorific cakes for my family, or the cake club I attend monthly (the best thing ever invented, 20 or so women sat around eating and discussing cake for a whole evening). These days I’m going to an insane amount of concerts and driving my mum crazy by insisting on waiting at the back door till 2am to meet the band, catching up and drinking too much tea with my friends, and, unfortunately, attending constant hospital appointments.
Tinker is an assistant dog and a best friend
In these blog posts I will hopefully pass on advice regarding being ill and different aspects of life, share experiences and look at the lighter side of the dark, but mainly introduce you all to my new little doggie, Tinker, a collie cross whippet who’s meant to be a 2 year old, but acts more like a 2 month old. Tinker will be, over the next few years, trained as my assistant dog, helping me dress, pick things off the floor, open doors and be an emotional support dog. With the end ambition being her attending university with me. But at the moment she’s living up to her name, causing laughter, and being a menace every second that she’s not sprawled out on the floor in dream land.
Since getting Tinker from the dogs trust our lives have changed. Constant cuddles and guilty looks now define the days. Her little foxy tail can be seen running through rapeseed and tucked under her sleeping head. But most often the tip can be seen wagging in a pleading like manner whenever someone opens the fridge. The boss is me — most of the time. What I say goes when it comes to behaviour and training. Unfortunately, the extremely smart Tinker loves nothing more than to buddy up to my mum or brother when it comes to mischief. When the pain is too much or the fatigue turns to led in my muscles she’s an amazing snuggeler. Just the right size to cuddle without preventing the ability to breath. And there’s nothing like looking into her cheeky, glinting face to cheer up any rough day.