My morning ritual is… when I wake up, a carer (I have a team of carers, each working a 48-hour shift) brings me a coffee, then I’ll lie in bed for half an hour, catching up on news stories. I’ve got spinal muscular atrophy type 2 (SMA2) – I was born with it, but was diagnosed at 18 months old. It is a muscle-wasting condition that means I’m incredibly weak. I can’t bear weight at all, so can’t stand, walk or even sit unaided. I have 24/7 care. When I get up, I’ll have a protein smoothie, then a drug called Risdiplam, which stops me getting weaker. Until two years ago there was no treatment for SMA, but since starting the medication last November I’ve got way more stamina. Before, I struggled to drive my own wheelchair and feed myself and was physically exhausted after two to four hours of make-up application. But no longer. It’s made me excited for life after lockdown!
My bedtime routine is… bed at 9pm. I’m a night-time skincare fanatic – I cleanse with a sonic face brush and Fenty Skin Total Cleans’r Remove-It-All Cleanser. Once I’ve brushed my teeth, I’ll apply Eucerin Hyaluron-Filler Vitamin C Booster, Fenty Skin Flash Nap Instant Revival Eye Gel-Cream and Fenty Skin Instant Reset Overnight Recovery Gel-Cream. I watch YouTube videos in bed and catch up on beauty tutorials by people such as Holly Boon and Robert Welsh. And I love reading a good crime thriller on my Kindle. I’ve just finished Playing Nice by JP Delaney. I was gripped from beginning to end!
I always tell my loved ones to… not over-analyse things and to go with your gut. I’ve had an amazing track history of employing carers. If I mesh with them in the smallest aspect, I’ll get a twinkle in my eye and think, ‘This is the right person for me.’
My favourite mantra is… ‘People will stare, make it worth their while’. In a wheelchair, so I’m hardly inconspicuous. For years, I ‘dulled’ myself down to blend into the background, because I didn’t want to stand out any more than I did. I was a watered-down version of who I really was. I was interested in fashion but would wear boring, plain clothes. When I was studying criminology and psychology at university, I read this quote and it resonated. I started buying stripper heels, wearing ripped fishnet tights and PVC! The rest is history!
I love to cook… I can’t cook but my carers make whatever I ask them to, preferably tasty food that’s as healthy as possible. I love garlic, herbs and spice. I can’t exercise, either, so what I eat is really important. Being bigger than I am now would be impractical when being lugged around by carers.
My favourite way of relaxing is… applying make-up. I started doing my own make-up around seven years ago. It gives me creative freedom. And it’s when I feel my most free, because I’m literally lost in what I’m doing. I used to spend hours drawing, but over the years I’ve lost the use of my right hand, so I can’t even write my own name on a birthday card. To do my make-up, I have to prop my elbows on a table and support my dominant hand with the other. I then use my left hand to apply all my make-up. In this position, I can do my eyebrows, eyes and lips. My carers help with my skin make-up, as I don’t have the physical strength to do that part.
Exercise to me involves… I’m completely sedentary, due to being in a wheelchair. So, although I do exert myself doing things like applying make-up, I don’t elevate my heart rate or get a sweat on, hence being so careful about what I eat.
My biggest turn on is… feeling the sun on my skin, being around my friends, listening to some good music and having those first few drinks when you feel a happy buzz. Then I’m turned on for anything and everything!
The bad habit I’m glad I’ve kicked is… cola drinks. I used to have at least two cans a day. I’ve not bought it for years now and my skin is better.
I inject positivity into my life by… being very aware of the information I absorb on social media. I only follow accounts that make me feel good, inspire me and that I can relate to.
No.1 on my gratitude list is… my friends, family, carers and health. Over the past year I’ve only been out of the house six times. It paid off, because I’m still here – I’ve not had Coronavirus. I’m like a caged animal waiting to be released. Brace yourselves!