Living with Lyme Disease

Prior to my recent publication of Heidi Seek and other stories, some people who know me (or know of me as a writer/tutor), may have asked themselves...well, what exactly happened to A.F. McGuinness between 2011-2013? After all, he had been teaching creative writing at two universities in Canterbury...hadn't he? And he was working on a new novel...wasn't he? And then...just silence..

Perhaps I didn't want to be labelled, but this is the first time I've ever talked about my illness beyond the confines of close family and friends during the past three and a half years (the word "nightmare" cannot possibly do justice to the life I and my wife were forced to lead), but a recent tweet/ link to a story of a Lyme disease- sufferer Lyme story in Daily Mail  has convinced me to break my own silence, and talk about Lyme disease and how it can destroy lives. Stories like this make my blood boil.

The true story in the Daily Mail brought home - as if it needed bringing home -  the hell that I endured (and to a degree still endure), from initial signs of bacterial infection, to an acute neurological phase involving brain inflammation, during which I felt genuinely close to death; periods of hospitalisation; and later, learning to live with a chronic condition that may or may not be curable. All beginning with a little bite from a tick! If living with Lyme disease and its symptoms are not bad enough, many NHS patients are made a double victim by poor medical/ clinical diagnoses, and intransigence regarding treatment. This is well documented nationally and worldwide. I am not alone when I say that I am a survivor not because of NHS treatment, but rather despite it. If you want to know more about Lyme disease in general, and read some true stories, and find important information about how you can avoid the disease in the first place (with summer almost upon us, you really must find out how to protect yourself from ticks), please visit the Lyme Disease Action group here:Lyme Disease Action

Every Lyme patient has their own unique story to tell, but it is truly scandalous just how many times the same story recurs: signs of illness, misdiagnosis, confusion, delay in treatment or no treatment at all. The repercussions of late treatment or non-existent treatment, as I sadly know only too well, are potentially disastrous in the extreme. The likelihood for me (and for thousands of others in the same boat) is that I will have to tolerate or accommodate a life-long bacterial infection that follows a pattern of "relapsing-remitting" pain and fatigue. This is really why I was unable to write much from 2011-13; I was genuinely trying to stay alive. It was not until little green shoots of recovery showed themselves in late 2013/early 2014 (after appropriate antibiotic treatment) that Heidi Seek was finalised, and I am now cracking on with my second novel. I am well enough to do that.

My experiences during the past past three and a half years have been harrowing...so harrowing in fact that I am compelled to write about them. Of course, I first tried to write a "Lyme memoir", exploring every creative non-fiction avenue, but in the end the reality of events were so painful, and too close for comfort to complete. Rather than writing a memoir, I was digging my own grave with every page.

Which is why, in time, I have distanced myself from the nightmare, in the form of fiction. After all, fiction is what I write. This time, it will be semi-autobiographical. It can be no other way. The story has to be told through the eyes of another.

To anybody out there who suffers with Lyme disease, all I can say is hang on in there. You are not alone. You can feel better in time. Seek advice and appropriate treatment where and when you can. Visit Lyme Disease Action too. It is a mine of useful up-to-date information.

Good luck, and good health,

AFM