Today I’m making a long overdue return to my Creativity and Chronic Illness series with an interview of Sarah Alexander. Sarah is a self-described twenty-something beauty, lifestyle, and disability blogger. She, like so many of us, is a bookworm, a lipstick junkie, stationery addict and a fan of skulls. (Okay, so maybe when I say ‘many of us’ I really mean, ‘me’ – but same difference, right?) She’s from Liverpool originally but lives in Northamptonshire with her boyfriend where she writes for her blog Sarah in Wonderland, and Liability Magazine. I first ran into Sarah on Twitter through her project called #SpooniePost, which is an international project aimed at getting folks with chronic illness from around the world to send one another snail mail in order to be encouraging to one another and cheer each other up. (Who doesn’t love snail mail?) Sarah recently was able to crowdsource a power wheelchair she needed to help get around in less than a month which is both a huge personal win for her as well a sign that crowdfunding is going in the right direction.
Fox Emm: What chronic ailments (mental or physical) are you facing?
Sarah Alexander: Ehlers-Danlos Syndrome Type 3, Fibromyalgia, PoTS (Postural Tachycardia Syndrome), Endometriosis, Gastroparesis, Depression and Anxiety.
FE: How do they influence your life/activities day to day?
SA: I’m in chronic pain and have been since the age of 13, I’m 30 in January. I dislocate and/or subluxate daily, I pull muscles and ligaments really easily. I use an electric wheelchair to help me manage the pain as not a day goes by that I’m not in pain. I have to plan everything and am often canceling events/meetings last minute due to something to do with my health. My conditions make life difficult but I try to get by as best I can and use my skills to educate people about disability.
FE: What does a typical day look like for you?
SA: My days are quite boring really, the most excitement I have is when I go to an appointment, and trust me, they’re often and not fun. I usually spend an average day at home with my boyfriend who is my carer, I’ll watch some TV, do some stretches and physio, write a post for my blog, take some pictures, and call my mum and best friend. In between all that I’ll have four doses of medication to help with the pain, and I’d definitely have a dislocation or subluxation. They happen really easily, I can reach too far for my drink and my shoulder pop out, or be typing really quickly and pop a finger. I have to be extra vigilant with my stupid bendy body.
FE: What do you think is the largest issue you face as someone who tries to stay creative?
SA: My hands and shoulders are really badly affected by my condition, and I’m not someone that likes to use talking software. I can’t make my writing flow as well through speech, so when my hands are bad and I really want to write, it’s so frustrating.
When my hands first started acting up; I remember the day very clearly, I was 18, lying on my bed finishing a poem I was writing and all of a sudden the pain in my fingers and wrist became so intense I dropped the pen. I tried picking it up again but my hand simply wouldn’t work. As a writer, that was absolutely devastating for me. To this day I can only handwrite a couple of words and it kills me.
FE: How do you stay motivated?
SA: I stay motivated by being passionate. I love what I do and it’s not a chore to me. If it ever became something I resented I wouldn’t do it. Don’t get me wrong, I’ve had months when I’ve not written anything and felt so incredibly guilty but I’m always able to jump right back into it. I guess over the years I’ve realised I work better with a routine too, so I blog three times a week (Monday, Wednesday, Friday) and plan fiction, poetry and any other articles I have to write in between. Planning is definitely key for me in all aspects.
FE: What advice do you have for others in a similar place/position or with a similar condition?
SA: If you love something enough, you’ll find ways to adapt and succeed.
FE: How can folks without chronic illnesses help?
SA: It’d be nice to see people without chronic illness help us educate the masses; I’m very vocal on my blog and social media when it comes to disability issues and not a lot of my non-chronic readers take notice, so it would be good if more got involved.
FE: What prompted you to begin the #SpooniePost project?
SA: I started #SpooniePost because I began making a lot of spoonie friends on Twitter and wanted a way that we could cheer each other up in a different way. There’s nothing worse than being chronically ill, stuck in your house for days on end and only receiving bills through the post; through #SpooniePost, the members can connect with new spoonies and have something tangible that makes you smile.
FE: Where would you like to see the project go?
SA: I’m quite happy with how the project is going. This month (November) it’s been running for a year and we have over 70 members. I love seeing everyone’s tweets when they’ve received something lovely.
You can find Sarah Alexander on her website: www.sarahinwonderland.co.uk
You can also find her on an assortment of networks: