The Journey Begins

Thanks for joining me!

“The question is not how to get cured, but how to live.”

Joseph Conrad

They say write what you know. Draw on your own experience. Write what’s real to you, what’s emotional to you and what occupies your every waking thought. I can’t tell you how much I wish my knowledge was about architecture, or the favourite holiday haunts of the rich and famous. Unfortunately, the experience that I have to offer is contained within the ugly pitfalls, deep recesses and general shit storm of despair that precedes and accompanies chronic illness. In case you feel the need to examine my credentials for writing this, I was diagnosed with several chronic illnesses a number of years ago. And let me tell you, my life changed quicker than the fashions in Primark. A qualified teacher, I was busy climbing the ladder of educational success when my first autoimmune disease struck. Unwilling to adapt, change or slow down, I decided to ignore my diagnosis and battle on as I’d done before. I was the definition of insanity: doing the same thing over and over again and expecting a different result. Eventually, after three more diseases decided to join the illness bandwagon, I was forced to give up teaching and re-evaluate my life. I now work part time when I can at the local hospital and draw portraits in my spare time. I don’t think I’ve managed to ‘cope’ with my illnesses; I don’t think I ever will. But, for now, I think I’m on the road to adapting and accepting my limitations. So here’s my introduction: My name’s Lucy and I’m chronically hopeful 😊

This blog isn’t a self-help portal. It isn’t a gospel guide or a one-size-fits-all-cure-all. I have no breathtakingly wonderful epiphanies to impart into your eager ear. Now, it might sound like I’m deliberately poo-pooing my own work but hear me out. Assuming you’ve not been drawn to this blog because of the snazzy colours (beautiful aren’t they!) the chances are that your attraction to this work is because either you’re suffering (my condolences, that sucks) or because someone you know is suffering (equally worthy of condolences).

When I was first diagnosed, I spent hours scrolling through the internet, browsing through the bookshelves and endlessly searching on Amazon to find some literature to tell me how I was supposed to live with this life-changing shit-bomb that had been dropped on me from rather unforgiving heights. The help that the doctors had given me, tended, in my experience, to stop at the physical symptoms; the drugs and their side effects were covered in Chapter One of my chronic illness journey. Looking back, that was the easy bit. It was the gaping hole of uncertainty that followed that kicked me repeatedly, the ‘now what?’ portion of life after diagnosis. I typed in the names of my illnesses looking desperately for some advice on daily living. I found books on symptoms, I found books on diet, I found books on meditation and breathing and yoga and positive-poxy-thinking. The problem was that I knew my symptoms (hello! I live with them!) and I had already been given leaflets on yoga and breathing (they made excellent substitutes for toilet paper) but what was missing was the advice on day-to-day survival of the crap that comes with the diagnosis of a life-limiting condition. It was then that I realised that it doesn’t matter what label you are given, whether you see an endocrinologist, a rheumatologist or an oncologist. The struggles are the same. Sure, if you have Intercranial Hypertension you are going to need more Lumbar Punctures than someone with Lupus. If you have Fibromyalgia your pain management strategies might be different to someone that has Addison’s Disease. But, irrespective of what kind of condition you are diagnosed with, you will share the same difficulties and struggles with everyday life: how to deal with the lack of understanding from others, the troubles in explaining your limitations to your boss/spouse/mother/son/nosey carparking attendant, the adjustment from society’s ‘normal’ to YOUR ‘normal’. And thus, this blog was born.

I won’t tell you how to survive, at no point will I attempt to tell you how to cope or what you should or shouldn’t do (I’ve read books like that and they are only good for hitting the authors with or to use as an attractive doorstop.) I will attempt to help you navigate such mazes as coping with friends (or the lack of them), coping with work (or the lack of it) and finding your own sense of normal (as difficult as that might be) I learnt through trial and (extreme) error. But my hope is that, through this blog, you won’t have to. What I will do is offer the hints and tips that were given to me by friends, the internet and counsellors that I picked up along the way. Use this blog as you choose to: skip in and out of chapters, take the bits that are useful and discard the bits that aren’t. I’m not an expert on every chronic illness, but I’m starting to be an expert on my own. And that is the most powerful feeling that anyone can ever have. My last hope for you is that this blog IS useful to you, and doesn’t end up as a doorstop or, even worse, something to hit this author over the head with.

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