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.


About janelark

a writer of compelling, passionate and emotionally charged fiction
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