Hello, and welcome to Chronically Creative, our first proper blog series! Releasing on alternating Sundays this series aims to inform and inspire, capturing the resilience and determination to create that Spoonie Village was founded on, while also reminding us that even small achievements can be remarkable when you have a chronic illness.
To celebrate the launch of our new site and store, this first entry has been written by Laura, founder of Chronic Warriors! Laura is a creative Spoonie who is also new to the world of juggling managing an online business and life as a Spoonie and so we felt she would be perfect to open this series! So, without further ado, I'll hand you over to Laura. We hope you enjoy her story and her insight, if you'd like to support her you can follow her on instagram and you can find her store here!
Hayley and Tom
Hey, I’m Laura, owner of Chronic Warriors. Alongside juggling a hectic, malfunctioning body with a vast variety of symptoms and surprises, last year I set up a small creative business on Etsy. Chronic Warriors is the shop I established to provide fellow sufferers of chronic illnesses with gifts & treats; ranging from awareness bracelets and Spoonie jewellery, to paintings and creations.
Let’s face it, doing anything whilst your body is fatigued and constantly screaming at you is no easy feat, but I’m so glad that I took the plunge and started a new venture. Running a shop whilst attempting to manage my illnesses (along with the interruption of the many hospital visits that accompany them) is unquestionably difficult and, like anything you do in chronic pain, takes a lot of inner strength and perseverance - especially when you’re trying to hand-stamp a bangle at the same time as battling brain fog and vertigo, whilst pushing through severe pain! Nevertheless, being able to be creatively productive at my own pace, in my own space, is just what I needed – and it has been so much more rewarding than I ever could have imagined.
I’m no stranger to living with chronic pain; having slipped a disc in my lower spine whilst horse riding aged 17; although, as you may well be too aware, many years of experience and familiarity with chronic pain doesn’t ever make it any less debilitating! The reality of my health has since spiralled into a medical encyclopaedia’s worth of data. I have an ever-growing list of diagnoses, including Ehlers Danlos Syndrome Type III, Shoulder Dysplasia, Chiari Malformation, Chronic Fatigue Syndrome & Degenerative Disc Disease - as well as a very recent, long-awaited POTS diagnosis!
Moreover, I also have agonising hip problems; labral tears (torn cartilage), femoral acetabular impingement (FAI) (extra bone on my femoral heads & hip sockets) and bone deformities in my hips and femurs (acetabular & femoral retroversion). To tackle some of this, I had two major orthopaedic operations at the end of 2015 to rotate my right pelvis and femur. Unfortunately, three years on I’m still trying to grow back my femur, before having more operations in the future.
As cliché as it sounds, I find focusing on what I can do rather than what I can’t has a profound effect on my mental health, but we all know that this way of thinking isn’t easy to come by when you live with chronic illness, and of course I have days when it feels impossible to get into this frame of mind.
Going into detail about all my conditions is a task and putting into words the effects my health has on me is not only daunting, but extremely difficult to convey, as I’m sure many of you relate to! I think we often fear coming across as negative when we speak about the true nature of our illnesses, although in reality we’re only being honest and realistic. It’s hard to accept a life of chronic illness and negotiating our way around our bodies can be tough…
Like so many others, I unfortunately spent many years being misdiagnosed and not taken seriously (with the ‘not being taken seriously’ part still seeming to be an occasional recurring theme). Being told something so excruciating is ‘all your head’ is so traumatic in itself and I’m still working on the effect that this has had on me. Understanding is so imperative when it comes to chronic illness, which I guess is why it means just so much to me to be able to create pieces for fellow chronic illness sufferers. Pieces that can express support, appreciation and awareness - without the need for any words.
As chronic pain, fatigue and lack of mobility (and all of the rest!) meant being unable to work (and facing the reality that many of my diagnoses are degenerative) I knew that starting up something I could do from home, in my own time, was the path for me. I’ve always loved being creative, from producing drum & bass music, experimenting with cooking and baking to painting and creating - so it made sense to put some of my creativity to good use.
Because of the nature of my conditions, being comfortable is a thing of the past as it’s almost impossible not to aggravate parts by being in any position, but I find sitting particularly excruciating and standing for periods of time hard work, so finding something I could do to accommodate my body was vital. I may have unconventional ways of getting things done; you’ll often find me painting on the floor, making orders and sending messages from my bed or sofa, or moving regularly from one or the other in attempt to escape the pain that being stationary causes (it never works!), but I’m so grateful to have a way of being productive - despite the pain.
My idea for starting up Chronic Warriors stemmed from receiving a handmade Spoonie necklace from my mum. The idea that one little gift could be so meaningful and show support & understanding led me to brainstorm ideas for my own shop for people in similar situations to myself. Being able to create pieces for people which capture the feeling I got from the necklace is what drives me. It all just seemed to fall into place that this is what I would do.
Pacing myself never seems to get any easier and is still something I’m learning to do. It’s like my brain is telling me what I want to do, but my body isn’t having any of it. Listening to your body is great advice, but not always easy to follow! Like many others, I push myself through ridiculous levels of pain and fatigue just to do the simplest of tasks that many healthy people could not fathom, and too often find myself beyond physical & mental exhaustion because I’ve overdone it.
Of course, there are days when getting orders made up and replying to messages etc. can be even more daunting and it’s learning to be okay with not doing everything right away and not beating myself up about it. It’s very easy to put a lot of pressure on ourselves to get things done, but in reality if you’re living with a chronic illness and functioning to any degree, it’s something to be proud of! Just getting out of bed, or getting through the day is an achievement.
Being housebound and living with chronic pain can be dauntingly lonely and isolating, even when you are around people. Before starting Chronic Warriors, I often found myself feeling very lost and not knowing what to do with myself, with a desire to keep busy but difficulty in physically doing so. Often being “how can I fill this time between this cup of tea and cake before the next cup of tea and cake”, but now I sometimes even forget about the next cup of tea and cake because I have something positive to focus on despite the pain and fog.
At the beginning I had no idea how my shop would be accepted and whether it would actually take off or not; but in all honesty it has been my lovely customers who have spurred me on and given me the motivation to keep going. I’ve only been running Chronic Warriors for a few months and in that time have received such lovely messages from customers expressing just how much their gifts mean to them. To be able to give even one person that is absolutely amazing and incredibly fulfilling and makes pushing through this horrendous pain and sending my spoons across the world, worthwhile.
It’s really nice to have that feeling of accomplishment and fulfilment back. There’s certainly a lot more to it than I initially thought; from taking photographs, listing items and writing descriptions, to making up orders, packaging, messaging customers, as well as posting on social media, and it does worry me that my brain fog will get the better of me and I might make silly mistakes such as sending the wrong order to the wrong person, but if I let my fears hold me back I wouldn’t achieve anything!
The Chronic Illness community on social media took me by surprise, it was amazing to come across so many spoonies all supporting and encouraging others that they’d never met; all connected by unfortunate circumstances, yet part of something so beautiful. I may be unlucky to live in this body of mine, but I am so incredibly lucky to be a small part of an amazing community of warriors, and I’m so proud of what I’ve accomplished in such a small space of time.
Once again, massive thanks to Laura for taking the spoons to put all of this together for us! If this post has inspired you to flex your own creative spoons, head on over to our forum where you'll find our very own creative corner for discussing your own personal projects and sharing your creations. Be sure to give Laura a follow and check out her store too, let her know what you think and make sure you tell her that Spoonie Village sent you!