So when I originally wrote this blog post, I started writing about my life before chronic illness. More specifically about dance, which wasn’t just a hobby, it was the love of my life. I had to stop when I got too poorly. I carried on even when I probably shouldn’t have, but at that point I didn’t know the damage I was causing to my body. I had to stop writing about my life before chronic illness because I couldn’t stop crying.
This is the thing with chronic illness, it can rob us of our joy and life – there is just so much grief and loss for the majority of us and it can take a long time to process. It isn’t only hard on us, but it can be hard on our families and friends too, seeing us suffering with no cure or end in sight. This is very much doom and gloom, but the grief doesn’t always feel this overbearing. I can’t speak on behalf of anyone else, but day to day I am relatively content. Now, let’s all take a breather and enjoy some of my hilarious dance content from over the years…
So back to it, when did my chronic illness start? There was a definite shift in my health back in March 2020 when I caught an awful infection that left me bedridden. I am pretty sure it was COVID and I say this because after the infection, I got COVID toes (yes, you read that right). My feet actually felt like they were on fire, but my biggest concern at the time was that I couldn’t wear my new sandals that summer. I think that tells you everything you need to know about how oblivious I was to the world back then.
For the next two years following the infection, I was stuck in a loop. I experienced extreme fatigue, but doctors kept advising I exercise more and so naturally I obliged. This would then lead to worsened fatigue and more symptoms showing up. It felt like I kept being pushed down. I would just get back up and start moving again, but before I could get any momentum I would be pushed back down. At first it was mild, but by 2022 I was operating predominantly from bed. I simply could not keep up with my life.
March 2022 I was diagnosed with M.E. and had this confirmed by a specialist in May 2022. It wasn’t easy to get a diagnosis; ironically it took a lot of energy on my part, but it was worth it. It was weird because I felt somewhat relieved that I wasn’t imagining an illness, but also devastated that there was no cure. If you would like to know a bit more about the illness itself, including symptoms, please check out my Instagram post.
In April 2022 I had to leave my life in York behind. I moved back home to my parents (a small seaside town in Yorkshire) for full-time care because I could no longer manage living alone. I had a long few months mostly bed bound in the dark, barely managing to brush my teeth. And yet I feel it is important to mention here how incredibly lucky I feel that I only suffered like that for a few months. Others spend years in bed, and worse.
So here I am now, August 2022, writing my own blog?! If you told me that a few months ago I would have laughed in your face. I am not well by any stretch of the imagination, but I have a little more capacity and a lot more knowledge. How did I get here? I started receiving professional help, I began pacing myself and I understand my body more and more each day. Most importantly, I eliminated dairy, eggs, soya, wheat, mushrooms and goji berries from my diet – all of which I am intolerant to. Turns out my body was using a LOT of energy to digest all of these foods… energy I can now use for much more exciting things. For any fellow intolerant spoonies (or friends of), please check out my allergen-friendly recipe section.
My plan now is to improve my pacing techniques and continue with the diet changes. I still make mistakes daily when it comes to pacing, but I am learning slowly. I will be using my extra energy to continue winging it at life as a now disabled 25-year-old, figuring out everything from chronic illness to intersectional feminism. Stick around as I share all my experiences and tips on the blog.
Thank you for reading!! Please do comment or message me on socials (links at bottom) with any suggestions, comments, or questions. Remember, sharing is caring – if you liked what you read please do share it on social media and with friends.
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