A DIARY OF A ZEBRA
This is a very common thing for people like myself to hear throughout the experience of our chronic illnesses. So many of us go misdiagnosed and misunderstood that the term ‘zebra’ has been coined by the medical/illness community and those with rare illnesses. I myself am one of those with a rare and often misdiagnosed condition that affects many people in their day to day lives.
And if that isn’t a depressing way to start a home page of a blog then this is off to a good start! Stick around there will be much more from here on out. As some people who first saw this page they will see that it has had a bit of a makeover… for better or for worse? Who can tell. But I am a perfectionist so this likely won’t be the last time the page is rewritten and changed around. It’s a good thing nobody really follows it or I’d be in trouble with the ‘millions of fans’ like some blogs have. I’m not an expert when it comes to designing web pages and I saw somewhere that WordPress will make it’s user cry at least once whilst using it…. I’m already at my 6th cry so we’re off to a flying start!
WHO THE HELL IS THIS?
Keep it simple, relevant and to the point. This is what I was told to do when it comes to the various ‘how to blog’ pages. What should be made known is that I know nothing about how to do these sorts of things and I certainly don’t have the mental focus to actually following someone else’s ‘top ten tips for the perfect blog’. So if that doesn’t tell you all about me then I don’t know what else to say.
My name is Jessica, but most people call my Jess. I graduated from the University of Wales, Trinity Saint David with a BA (Hons) in Acting. Naturally this means I do not actually work as an actor, despite that being my goal in life. Instead I keep the theatre as a hobby until it starts paying the bills, because apparently you need money to be a functioning human being in life? Whoever decided that money makes the world go round is an ass and I shall stand by that statement.
Most other fun facts about myself can be discovered along the bumpy journey that will be this disaster of a blog.
WHY DO I HAVE A BLOG?
In truth there are probably many a better blog than this one out there for people to turn to. At the end of the day this is mostly something for myself to voice my inner most thoughts and publish them for the whole world to see. BUT if I just so happen to inspire to help people who are like myself in any way then it will have been worth it.
Sometimes people need an escape and reading about the disasters and thoughts of a complete stranger online can sometimes be a good escape. So you’re welcome. My life is a roller coaster, strap in and hold on…
WHY AM I A ZEBRA?
Two years ago I was diagnosed with a little known condition called Ehlers-Danlos Syndrome. Specifically I have the hypermobility type, where my joints have a mind of their own and don’t do what normal humans do and stay in place or function properly. Along with limbs popping in and out of place all the time, I also suffer with chronic pain, chronic fatigue and a whole host of other symptoms. The condition has so little research actually done into it that this is not something that can ever be cured, only managed.
It has taken a long time for me to come to accept that my life will never be ‘normal’ again. There are certain things in life that I physically can no longer do, no matter how stubborn I am. There are also things I need to make sure I do in order to continue functioning as a human being and keep some semblance of life, such as improving my fitness and mental health, no matter how hard it might be. The purpose of the blog is to note down this, no doubt, painful and long journey (Barf! I hate that word) into becoming a healthier and hopefully happier person. I’ll be chronically my good days, my bad days and everything in between. I’ll be reviewing some of the best and worst items that have helped, or not helped, me when it comes to my condition and how I adapt and change to make sure I can still have the life I want.
But if one thing is certain, I will not let this beat me. A saying that I frequently quote to myself and will usually sign off each post with is from a film called ‘The Best Exotic Marigold Hotel’ (if it’s from anywhere else then please tell me)… it’s a mantra that I try to live by and give myself some hope during the dark and painful times.
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WHAT CAN I DO TO SUPPORT YOU?
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