Lifes Battle against AS continued; continued :-)

Ok, so I left you at the point we hadn’t moved. I’d admitted I was too ill to keep working, and coping with a two-hour single-way journey to work.

Well we did get into the house just over a week later on the agreement our furniture arrived in two lots one that day and one two days later. But we moved into a house that had been empty for 18 months and it had got damp and was damaged by rats. Yep, we didn’t notice until we moved in that the rats had moved in before us. The electric cut out every half hour, the dishwasher and cooker blew up – all because the electrics had got so damp. So for the last few months my husband has been tackling all of these things slowly. The person who moved out also left us a present of asbestos in the garden which I picked up and it broke in my hands, well, I didn’t know what it was until my husband yelled at me. “Don’t touch that!”

We basically have to rip down half the house which is an extension that was built really badly, so that is going to be fun next year, and I can’t stand muddle, but that isn’t where the story ends.

In May this year I flew over to America alone for the launch of my first book, at a Romance festival in Kansas City. I will freely admit I am a worrier, I overthink everything, but I would never bemoan my overthinking, because it’s my overthinking that gives me such a vivid imagination and it’s my vivid imagination, that has allowed me to get through the majority of my life. My vivid imagination is the tap that lets my steam off, when everything is too much, or my AS is too painful. Anyway, going to America alone – well I still very firmly have the day fixed in my head when I was travelling through London and my sacroiliac joints were in a flare up, and it literally, absolutely no exaggeration, took me 45 mins to walk from one platform to another at Kings Cross Station. So going to America alone…. And I’d never been before, and I am not very travelled at all.

Well I worried and I was terrified, but I couldn’t afford to take my husband, and my Mum offered to come but she’d have just driven me nuts because she doesn’t get how bad AS is. My parents are the people who instilled this need in me to never let anything beat me and keep striving to continue and never let anyone down, which is the worst thing for AS so she would have just driven bonkers spending a week with her when I was struggling… But I did cope, I shan’t bore you with the whole of that story, I went and it wasn’t easy getting my luggage through the airports, or having to dress up one night without anyone to help, but I did it, and I came back hardly able to walk, but I coped, and I was proud of myself. But basically I had exhausted my poor brain worrying about that for all the months after I’d ceased worrying about getting into our house, and people are now telling me how ill I look at work.

So I get back from America, book launched and think, right now I can focus on getting well again… But no… fate was not to be so kind. Two weeks after my book launch, my publisher advised they’d made a decision not to release any more books for a while and offered, me, like all their other authors, all their books back. Ahhhh… Fate! So I made the decision as I was releasing a series to pull the second book immediately, and then try to find a new publisher and hope they would then take over book 1. I faced the joy of rejection emails for two months… They make you feel so good about yourself, I really hated going back into that space, but at the same time as doing that I started working out what I needed to do to self-publish and continued progressing book 2 in case I didn’t get a new publisher.

In my day job in June, we had another load of work come in, and like most places they don’t employ someone new but squeeze the work onto those already there, so I took about half as much work again, and now have basically a 50 hour job to fit into the 37 hours I am paid to do.

But back to books, I’ll be honest this workload, of promoting the book that was still out, self-publishing, hunting for a new publisher and then doing a day job that I still have a 50 min drive in and out of, and one that takes at least 42 hours a week to do… was killing me.

Thank heavens then that when I borrowed some money to get to a conference in August to pitch to publishers, one of them loved my work, I shan’t go into the full story of that, but the editor actually bought a copy of Illicit Love, my debut novel, having seen all the reviews going up on Amazon and so when I offered it to her and all the following books she said, “Yes! To everything.”  And that editor, works for Harper Collins. OMG one of the big publishers.

The happy ending to the tale I have bored you with for two days then is that, I do now have a publisher, again, who are piling out the huge back log of books I have been writing during the last 20 years I’ve had AS at a rate of a book a month for quite a few months. Sadly though the recession has affected publishing too, and it doesn’t mean I get a nice fat advance and can hand my notice in, no, what I get is a percentage of every book I sell, and so far since May, I’ve made and amazing… £100… Can’t pack in the day job yet. But oh, that’s the dream still, to just have one job, walk the dog, write for five hours, go swimming at least three times a week, do all my physio every morning when I wake up. NOT have to force myself to drive for an hour into work in the early morning when I feel rubbish. And then in the evening just do blogging and Twitter and Facebook stuff… What a lovely dream… It’s a long way off being reality.

But if I am ever going to get my books noticed enough that I can actually make a living from them, and then start leading a life which is healthy, and which I can cope with without it making me ill. I know now I really need to commit all the energy I have left after my day job into talking about my books on-line, and generating discussions in the review networks. My first contemporary book also comes out in December which means I need to be doing the book networking in two environment, in the Historical novelists world as well as in a the New Adult networking groups. So, that’s why, I am no longer going to pressure myself to keep running my AS blog too. I’ve being feeling guilty as so many people were communication to me about how much they loved my posts here. But I’ve learned in the last 12 months, that I really need to prioritize things in my life otherwise I am just going to keel over, and I have to do the things that will help me get to a point I can give up work, step by step. I’ll get there, eventually. But this blog is a low priority for me. I have enjoyed sharing my story, most importantly because it’s helped others, and I still get people finding old posts and contacting me, and that’s lovely, but I shan’t be committing to put any more up, apart from one last one. I shan’t shut the blog down though, just leave it open so people can read old posts, and then if I have anything to say particularly that I think may be useful to others I’ll pop back in 😀

So tomorrow one last post – for now…

AS is my burden, writing is my escape.

And if you are looking for the best help to improve your Ankylosing Spondylitis then for me it was the AS course at the Hospital for Rheumatic Diseases in Bath, UK. This hospital is now threatened with closure, if you wish to sign the petition to keep this hospital open, please click here. It changed my life (You can attend as a private patient or on the NHS). And if you would like more information on AS take a look at National Ankylosing Spondylitis Society, NASS, website.

 

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About janelark

a writer of authentic, passionate and emotional love stories
This entry was posted in Ankylosing Spondylitis, Health and tagged , , , , , , , , , , , , , , , , , , , . Bookmark the permalink.

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