Let’s go back to the beginning

When life throws you lemons, you make lemonade right? And that’s exactly what I did, except I chose cakes.

I haven’t always been big into baking, the odd cake here and there, maybe some burnt biscuits and rock solid rolls along the way but over the past two years I’ve found a talent I never knew I had and it couldn’t have come at a better time.

For as long as I can remember, and that’s not always that long, horses have been my life. After school, early weekend mornings, throughout college and into my professional working life. I built my own business caring for other people’s horses and dogs and loved every second of it, my dreams really came true when I decided on a slight whim to buy my own four legged beast (Ashley), and a slightly smaller one to go with him (an accident prone, terribly opinionated, slightly snobby, Jack Russell called Roxy). I’d work 12 hour days, be riding my own at 8 in the evening even on the darkest Winter night and still couldn’t get enough, I really was living my dream.

Then things started to go wrong, In 2006, at the age of 16, I started suffering with back ache, not always constant but it was certainly getting worse. Multiple trips to my GP were useless, apparently ‘everyone gets back pain’ and ‘I’d grow out of it’. It continued to worsen so they tried huge amounts of various painkillers instead (I’m sure I have enough to start my own chemist) and a suggestion that perhaps I should get some help so I could learn to accept and mentally manage the pain. By 2009 I’d had enough and my parents kindly helped me see a private consultant who immediately ordered scans that were necessary and we later found out I had a stress fracture in my lower back which would need surgery to fix it! Not quite what I expected I’ll be honest. In 2010 I had the op, it was major surgery but me being me was sure they exaggerated when they said it would take me a year to recover. I just thought ‘yeah maybe other people but not me, I’ll be back to work in a month or so’ …. Nope they were right! I finally got there though, a bumpy road but it was all good, until the pain started creeping back. That’s when I realised perhaps the life i once led was no longer for me, it wasn’t just my back it was everywhere, my shoulders would ache, my legs would throb, I felt like every joint was seizing up from my head to my toes.

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Where it all really began!

That’s when I really started baking, my sister had made some really pretty cupcakes, they had pink buttercream, roses on the top and a whipped cream centre, they were for her friend and I just thought they were fabulous. Of course in true sibling style I had to make them, if she could I could! And I did, and then I made some more, and started getting clever with the decorations. A family friend asked if I could make a two tier Finding Nemo cake for his sons birthday, I’d never EVER made a big iced cake before but I agreed and by some miracle it turned out better than I could have hoped. The cakes grew and grew, my confidence too, and my worries about what my life was going to be without horses full time had melted away. I still have Ashley and Roxy and I do still do Some work with horses but I hope the baking business can grow so I can eventually cut the manual work right back.

So, from 2012 I’ve been having numerous steroid injections and facet joint denervations in my lower back to control the pain but it’s jolly persistent and always comes back for more sooner or later! Alongside all of this the other joint pains had been getting worse, my legs had always been disproportionately large compared to the rest of me but they were getting bigger (I no longer have ankles really – my legs just meet my feet), headaches were becoming a regular, feeling poorly after meals and the fatigue … the fatigue was like nothing I’d had to contend with before. But I soldiered on, occasionally I’d make a trip to the GP, deep down I knew I was wasting my time but I just hoped they’d finally give me the right thing to make me feel the way I used too. Instead it was more pointless prescriptions, I was told on numerous occasions I was depressed or suffering with anxiety, I was made to feel like I was going mad, as if these symptoms were in my head, given antidepressants and told to see a counsellor. Every time I’d raise my swollen legs I was told I was overweight (my top half is a size 10) and was advised to try eating less or excerise more.

Then my Osteopath opened a tunnel and there was a dim but definitely shiny light at the end of it! We’d always known I was quite hyper mobile in my joints but thought nothing more of it, well he did, I just thought I was a bit bendy but what did that matter. Then he told me about a condition called Ehlers-Danlos Syndrome, it’s a connective tissue disorder which pretty much accounted for every single symptom I was suffering with and more which I hadn’t even acknowledged as symptoms. Ok at this point it wasn’t definite but it still reduced me to tears, FINALLY someone had listened to me, they’d understood and they’d made it their business to help me find what was going on and maybe, just maybe we were onto something. Turns out we were, fast forward to June 2016 and I finally got my diagnosis, or 5 to be precise. Yup, all that imaginary stuff turned out to be true, I’ve got EDS type 3 (that’s the hypermobile one, apparently it may be playing a part in the back pain but I’ll know more when I see my consultant next week – fingers crossed) , POTS Syndrome (I’ll explain at a later date but this is the tyke who’s been giving me so many issues), autonomic dysfunction, lipodema (that’s the fat legs – turns out I don’t eat too much after all) and polycystic ovaries. Although that sounds kinda rubbish I feel sooo much better for knowing, I no longer question my sanity and I no longer get angry at myself when I’m having a tough day. I’m living each day as it comes, ok perhaps not as I originally intended but I’ve found a new path to follow and I’m loving it. After all, who doesn’t like cake!

 

For those who are wondering why I call myself ‘The Baking Zebra’ it is because EDS is seen as a rare condition and in the medical world they often refer to the ‘rare ones’ as zebras. EDS sufferers are using this zebra theory to raise awareness and make our invisible visible all over the world.

I want to share my baked creations with you, to raise awareness of these strange new things I’ve been diagnosed with and I hope to show others who may also feel like their life has been stopped in its tracks that life can still go on. Sure it’s tough, it won’t be as you planned but that doesn’t mean it can’t be just as awesome. You are who you are and your life is what you make of it so take those lemons and turn them into whatever it is your heart desires xx

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