The power of the internet for AS Networks

Well I thought seeing as this is going to be my last post now for the foreseeable future, it should be about what other resources are out there for anyone looking for someone to talk to about their AS, and this is something I have only discovered since I started blogging.

I said in a post ages ago that one of the most significant things in my AS journey was when I met other people with AS on my first course in the hospital in Bath. The only people who really get how hard it is to live with AS are other people who have AS, and I felt so normal among them, as everyone did odd neck stretches, and couldn’t get up from chairs without grabbing hold of something to the help…

But anyway when I started blogging, I searched AS and Ankylosing Spondylitis on Twitter and then followed anyone else who said they had it and got into a network of several people who speak regularly about their experience. So here’s the main people on twitter that I know.

Matt Lemon @tvi675 – shares what others are writhing about AS via twitter

Gillian Eames @Gillianeames – just seems to have boundless energy to support others with AS even though I know she has her own problems. She had been networking with two of the last people on my AS course and persuaded them to go to Bath hospital

Then there’s Cookie who is developing the Face of AS website and connecting with hundreds of people @FacesOfAS

I am also so grateful for Joyce Lameire @JLameire who has been a fabulous support of my blog, and told me about Cookie and the Faces of AS. Joyce also runs a blog called Anky Spon What

And NASS are on twitter @NASSexercise and @NASSdirector

Plus loads more, take a sneak peek at Matt Lemon’s Tweet history then you’ll see everyone out there who is talking about AS.

It was only after going into hospital in Bath last December though that I discovered just how much of a positive impact online networking can have for people with AS, having met the two people who Gillian had introduced to the hospital. They told me about the Facebook groups. There are two I am connected into, but there are probably more. Although I don’t talk on them, I am too busy, but when I was reading a new post on the Faces of AS webpage someone was talking about meeting another person with AS for the first time. He’d met this friend in an online forum and then the other guy had flown over to America to meet face to face after a couple of years, and it was something really empowering for the man involved to have someone to talk about his AS it had changed his life.

So here’s the Facebook groups I know of;

Living with Ankylosing Spondylitis  https://www.facebook.com/groups/6856176878/

Ankylosing Spondylitis https://www.facebook.com/groups/2246013961/

If you are looking for someone to talk to about what’s going on for you, someone who will really understand, then I’d connect into these places, they are so valuable.

But for me, for now, I am going to sign off this blog and leave it to rest. Thank you to everyone who has contacted me over the months I have been posting, I have really appreciated the feedback, and I am glad my story has helped others too. It’s kind of sad to stop… Wiping a tear away :’) But this is now one thing off the weight bearing down on my fatigue exhausted brain…

Thank you all.

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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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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Lifes Battle against AS continued

Ah, how many weeks is it since I posted? Loads… Sorry… I was going to do two posts a different way around but I think I need to admit to myself now I don’t have the time to keep this blog going, so I am going to do my last proper post today, and then post my final one on networking as I think that would be the best way to leave it open, I will pop back on to here if there are any developments with my AS I think it would be valuable sharing though, but that will probably be rare.

So here’s why… Here is what has happened to me in the last twelve months which has been a hellish journey. Although I keep reminding myself I have been through far worse, which you’ll know if you’ve read my blog from the beginning. And some of you may have been through far worse. Lots of people will have. But when you’re wrapped up in something, knowing that things could be far worse, doesn’t make what you’re going through any easier. I always say to others, it’s okay to be fed up about what’s happening to you, you can give yourself permission to be upset, it’s not failure, it is just letting off some of the pressure of it.

Everything was swimming along wonderfully until December 2012, when we were waiting for the house we bought to all go through, which kept getting put off and put off, while we were holding off tenants who were in a chain, and wanted to rent our house, but then in the end we had to push for an agreed date because considering we were moving into an empty house, it had taken four months to agree the purchase. So we booked a date the week after Christmas.

I then went into hospital for the Ankylosing Spondyilits course again in Bath, as I’d got so stiff again from spending too much time working and writing and not exercising.

So I am in hospital trying to keep pushing the house move forward now we had agreed a date. Then while I was in hospital my brother-in-law passed away, in his late forties, we had seen him in the summer and he hadn’t known he was ill then, but he had advanced cancer. So imagine the pressure, and as anyone with AS knows, pressure is not good on AS. I think it is the only time I have been in hospital and not started feeling tons better. I did get my movement back though, and I have managed to set myself a more consistent exercise regime since coming out. But my fatigue… What was really unusual for that course was that out of the six of us, three boys, three girls, five of us suffered really badly with fatigue, it’s normally a much lower ratio than that, but in the afternoons we were all sluggish and loads of us dropped out various days, and loads of us felt rubbish in the mornings.

We did have fun though, as always, despite all that, and I admit, I was writing my first contemporary story when I was in there and a few conversational pieces may have slipped into the book 😉 only those who heard the conversations will ever know…

Anyway though, while I was in hospital it became apparent that the person selling us an empty house was playing mean, because we have no official access into our house, they had to pay for an insurance policy to cover if someone refused us access or we couldn’t get a mortgage, and the reason for the delay in purchase was because the seller did not want to pay for it, and was doing all he could to find a way around it and get out of it. By the time that we convinced him via our solicitor we weren’t going to be fobbed off or conned, it was the week before Christmas (sorry this is all my personal story and no earth shattering knowledge about AS, but I just want people to know why I need to wind down this blog).

Of course the outcome of the above, was, we weren’t moving the week after Christmas, but we had people moving into our house. Ughh, me being the sort of person I am I stupidly felt I couldn’t let them down, as they were afraid, as they were selling a house and moving to a rented property, that their chain was going to collapse. I couldn’t be mean to them, so we agreed to still move – stupid error.

So when I came out of hospital, and should have been getting over it and setting up an exercise routine and looking at applying everything they’d encourage me to do, instead, I am straight into packing, and I am moving out of a house with nowhere to go.

We went up to my brother-in-law’s funeral, and had a much restrained Christmas at home, then moved out, and all our stuff went into storage, and we moved into my parent’s spare room, the only place we had to move to. But my parent’s lived two hours away from where I was working. OMG with advanced AS driving for two hours in and two hours out of work. And it was one of my busiest times in my day job. I was meeting with directors the whole month of January, so I had to go in.

The day that really cracked me, I had a meeting at work finishing at 3pm, and a meeting the other side of London at 9 the next day. Work had agreed that I could stay in a hotel, but I hadn’t had chance to pick up my rail tickets, when I went to the ticket machine at work at 3.30 it had run out of card, so I ended up leaving work with no ticket balling my eyes out as I drove the two hours home, knowing I had fifteen minutes to grab my stuff from my parents house, and then my husband was driving me to the small station in the Cotswolds where my parents lived, which I wasn’t even sure had a ticket office. My parents and my husband were speaking to me as I hurried to get changed when I got in, and I couldn’t talk back I was in a full on panic attack, because it was way too much. When I got to the other end, the taxi cab company had their 24hour clock wrong and had come to collect me 2 hours early and phoned my mobile and had a major go at me down the phone and refused to collect me from the station unless I paid twice. Then when I opened my case, where I had packed it hurriedly my shampoo had squeezed out all over my suit. (I can’t use hotel shampoos as I am allergic). And I needed to wear a suit as I was interviewing job candidates all day. Arghhh (I know, it would make great comedy – didn’t feel like it at the time though). My daughter then rang and poured out her troubles at Uni, which were nothing to do with me, but you can’t help worry for your kids when they are worrying.

Well I did do the interviews the next day, having washed shampoo out of my suit… I thank God the day after that I was working at home at least, but still had phone calls with directors.

I kept going  from then just hanging on in there but feeling like death longing for the day we were going to move which had finally been agreed. (as you’ll know if you’ve followed this blog I don’t give in easily) Then Thank God, the day came. But Oh no, remember the day last January when we had inches and inches of snow. Yep, that was the day we were moving, but it was not only disturbed by that, the night before, when my husband had collected my daughter from Uni, they’d had a puncture, and we have one of those stupid cars with no spare tyre. So they got towed back to my parents’ house at midnight, and so when we set off through the snow at 8am, we were in my husband’s little old banger for running into work. We had been driving for an hour when we got the first call from the removal van, the team they’d had come from somewhere to help us, had got to the depot and they were loading.

You have to understand as we were driving, I was on the phone also trying to sort out how to get the puncture fixed on my car… (I know more great comedy, if only I was a comedy writer).

Then about 15 mins later, when we’d got to about 2o mins away from our new home, we got the call from the removers who said, we aren’t coming, we’re turning around. We had come from the same place as them, they could have made it, slowly, but they could have, they just wanted a day off.

So our hearts sank, mine particularly as I was the one with the huge long drive to work. Well, I just couldn’t keep doing it. I rang my boss and said what had happened, and admitted I can’t carry on, I’m taking some time off sick, until we can move. We carried on and drove up to the new house, picked up the key and went into to an empty place we couldn’t stay at, we sat there for a couple of hours had a cup of tea, and then turned around and went back to the one double room we were sharing at my parents’ house, and my daughter slept on the sofa. We were told it would be over a week later that the movers could do it. Ahhh. Even my husband just went to bed for hours at my parents cause he’d had enough – and he doesn’t have an illness, or get easily wound up.

Gosh, this post is getting too long, so maybe there will be three final posts, I’ll write it now so it happens but it’ll come up tomorrow… The story doesn’t end here.

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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Life’s battle against AS

I’m now moving into the last twelve months of my own AS story, and, well, what a twelve months. As I said a couple of posts ago my prescription for anti- TNF opened broad new horizon’s for me and so I got another job, which I started in the beginning of June 2012. Which was fabulous and exciting, but also included a journey to work of more than one hour, which is not good for an AS person, so I really needed to keep some reins on myself and not overdo it. Which is much easier said than done when you are working as most employers these days expect blood out of stone and the work was pressuring me to constantly overdo it.

The next thing that happened to me in the last 12 months was something very amazing, which I’ve spoken about before, in that after so many years of writing fiction as a) just plain escapism from pain and life and b) to hopefully give up work and be able to work at home, and not pressure my poor old body into getting into work and obeying the 9-5/7/8/9 rules, was I got offered a publishing contract in August 2012. Amazing. Excitement. Excitement 😀

But the two things above meant I was spending more and more time sitting, and less and less time moving. The worst thing for AS, of course. So where I had been exercising daily, I ended up exercising weekly, or fortnightly, or not at all. When I went to see the consultant in the autumn, the results were fairly obvious. I had got stiffer. I’d lost a ton (a little exaggeration) of movement again. I’ll be honest I was worried that a couple of the vertebrae in spin had actually sealed because the movement in my back was so much less. So the consultant recommended another course of physiotherapy in hospital, and my husband and I recommended a change of life style. We both decided it would be best if we moved house and cut my travelling down.

But he still worked in the town we lived close to and he starts work at seven am, so we couldn’t move far. He said – bless him – no you’re the priority let’s just make life easier for you so you’re well. But it would have been cruel to make him drive the hour back when he started work at seven. So we put our house on the market, and did all the things people say you should do, making it look all pretty, and started hunting for houses midway between the town he works in and the city I work in.

Ten weeks later in the poor house market, we hadn’t had any bites on our house, and it has taken years for us to sell houses before, but I couldn’t keep up with the travelling, it had really started taking its toll. Week in week out. So we went to see a financial adviser. One of my friends had rented her house out and then rented another house so she could move. So we went to explore options. Well, we were lucky, we had another option. Our mortgage was nearly paid off which gave us enough equity in our house to buy somewhere else and then rent the old house out. Of course that did mean taking the risk of then having a massive mortgage again. But choices, choices, healthier life verse a bit of risk. :/

We found a much smaller house which would be easier to keep with my AS as well, and went for it. We applied for a mortgage on the new house and our old house, and split the equity from the old house between the two. The things you do for AS. What that’s taught me is I am not a risk taker. The mental anguish and fear I’ve gone through over making that decision. We have still not sold our old house and someone is renting it, but I would so rather be rid of it, even though it’s making a profit, I just hate having a massive mortgage weighing over me, because you just never know what might happen next…. And of course all this anxiety was making my muscles tense up and my AS worse, and me stiffer, so I lost even more movement…

This 12 months of my life will be continued…

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.

Captured LoveOh P.S. My novella, Captured Love, telling the story of a subsidiary character from Illicit Love is now available on amazon.com/amazon.co.uk and is FREE today only now!

If you want to find out more go to my books page or my website www.janelark.co.uk  like me on Facebook or follow me on twitter @janelark

 

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Ankylosing Spondylitis and diet

Oh heavens I am going to touch a subject I think is a bit untouchable today, I am going to discuss diet – the impact of what we eat on AS.

I do follow a couple of the AS Facebook groups and other blogs and Twitter accounts and so many people have something to say on food. What you should eat and what you shouldn’t eat, and I am now probably going to upset all the people selling me the perfect diet that’s going to cure me. It’s so prolific, it feels a little on a par with the religious cure…

I spent two-three years getting a bit fanatical about diet. Mainly the last period before I got diagnosed and went on to medication.

I’d gone through a stage where I’d just left my eating to my body’s own motivation and basically for months I lived on sugar filled quick fixes to fight the fatigue. I’m sorry to say I do still rely on sugar a little to get me through a day at work, at lunch time I will frequently pick up a snickers not because I fancy it but just because I know it’ll give me enough energy to keep going through the afternoon, when I’ve a hit a point I feel tired and faint. But at the point I went into hospital for the first time, when my fatigue was really bad, I’d got to a stage point where I was trying not to live on a constant diet of sugar, but doing things like eating porridge for breakfast, and eating all the super foods. I got addicted to red berries instead of sugar.

What was funny was the man on the course who had the fatigue as badly as I did, had also developed the same sort of diet. Neither of us had studied anything about diet before we attended the course but while we were on it, the conversation did turn to what we ate.  People who had been diagnosed for a long time started sharing their views and journeys with food, and how this had impacted on them. That was when I discovered Carol Sinclair’s book on a low starch diet for IBS which said it also worked for AS. Yes I went out and bought the book. But hang on a mo, don’t rush off and do the same.

Carol talks about taking an Iodine testing bottle to test all your food for starch, and how eating no starch at all really helped her. Okay so minus the Iodine bottle, I did try it full on, and yes I think it did make my symptoms better… But I can’t never eat bread or cheese and biscuits, or… I like food, and besides that I’m sorry all dieticians who claim diet can fix all ills, it wasn’t a cure. My medication has been the cure.

The things I know I can’t eat are, yes, bread, does upset me, so I eat it in moderation very rarely and wash it through with something acid, orange juice usually (yes, I know dieticians that’s meant to be bad for rheumatic disease too, I had a blinking cab driver tell me that – but I like orange juice and it reduces my IBS pain). Raw onions they are bad for me, I should avoid them but sometimes I don’t. I do eat potatoes but again in moderation, I eat very little pasta, again I’ll eat it sometimes. I avoid bananas they seem to upset me, and I can’t have caffeine that seems to really disturb my fatigue and it is a little like taking a stimulant. But I figure you have to enjoy life, so you can’t avoid everything. I know the number of times I walk into shops, garages and café’s and just stand there thinking okay I don’t want pasta or bread or potatoes today… What the hell other food do you have that I can eat, and want to eat??  Quite often then I return the sugar quick fix – a chocolate bar, really not healthy.

But after my personal journey with AS and diet, I’ll be honest dieticians, sorry I stopped listening to you and just started working things out for myself, so please don’t guilt trip me, my life is hard enough without having to make it really hard to work out what to eat.

But do please feel free to comment and contradict me, I know some people are really dedicated to working through the diet thing, and I’m not saying don’t try it or keep at it if it works for you, only that it really didn’t work for me…

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.

Captured LoveOh P.S. My novella, Captured Love, telling the story of a subsidiary character from Illicit Love is now available on amazon.com/amazon.co.uk and is going to be FREE from 1st-5th September.

If you want to find out more go to my books page or my website www.janelark.co.uk  like me on Facebook or follow me on twitter @janelark

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