Sunday, 21 December 2014

My Story: Part 5

In September 2007 I went back to work. When I was talking to the Dr about returning to work he told me I'd get really tired and I needed to ease back into things. The naturopath didn't want me to go back to work, he said I wasn't ready. I knew he was right, I wasn't physically ready, but I had to go back to work for my sanity. I needed to get out and see people. I was so alone and isolated at home, I needed to go back to work so that for a few hours a week I could socialise and feel normal. I needed to be around people instead of feeling alone and cut off from society all the time. I remember being so lonely one day that I requested an Avon catalogue, cause I figured when the Avon lady dropped off the catalogue it'd give me someone to talk to. I needed to be in the real world again.

The Dr said that he'd start me off doing 3 hours, 2 days per week. I thought this would be easy, boy was I wrong! Work arranged for me to have a parking bay underneath the building so that I could drive in. If it wasn't for the parking bay I wouldn't have been able to go back to work because I couldn't walk far enough to catch public transport and I couldn't have stood up on the train the whole way to work.


By the time I got dressed and ready for work I needed to have a sleep. How I managed not to have a car crash driving in to work I don't know. Thankfully most mornings I had my friend Mel with me so she kept us both alive. She also gave me directions, because even though I knew exactly where I was going, I'd regularly forget, so she'd have to tell me which lane to drive in etc. I shouldn't have been driving, because I was so tired I didn't pay attention. Several times I drove through red lights without even seeing them.


I was very fortunate with work, they'd created a job for me that I could do in my own time, and they were very understanding of my illness. I'd been open with them about my disease so they knew exactly what was going on, which probably made it easier. Plus, it only took one look at me to know how sick I was, I looked like the walking dead. For the first few weeks I didn't do any work at all, it took all my energy to get to work and once I was there I was too exhausted to work so I just sat at my desk, but I was really enjoying the company, it was great to get out and see people again. I found out that a few people I worked with had Crohn's disease, so it was great to be able to talk to them. Other people felt the need to share stories with me about their friends who had Crohn's. A lot of these were helpful and I was glad to hear them but some weren't.


On my first day back one of the girls told me that one of her friends had died from Crohn's disease. That was just what I needed to hear. Why people feel the need to share stories like that I don't know. It certainly wasn't helpful to me. I was scared enough as it was without people telling me stories like that. The same girl also said that she wished she could get Crohn's disease to lose weight. I told her I'd rather be fat and healthy than thin and sick. (It's worth noting that this girl was a tiny size 6!)


Going back to work was really difficult. I was so exhausted from working that I couldn't do anything else, so my world shrunk a little. I'd sleep most of the time that I wasn't working, but I hoped that it would only be temporary. The other thing that was difficult was that I'd changed. I wasn't the same person that I used to be and work didn't realise that, so they were treating me like they always had. My brain just didn't function properly, I could hardly think and I forgot everything, so what used to be easy for me I could no longer remember. They'd sit there and talk to me and after about 2 minutes I would have forgotten what we were talking about, so I'd just sit there with a blank look on my face. But I didn't want to tell them that cause I didn't want them to think that I was stupid and I didn't want it to affect my standing at work. So I took a lot of notes and asked for everything to be sent to me in writing, that way when I forgot I could read it later.


After about a month, I started to get used to work and it became a little easier. Slowly but surely I was making progress. Everyone at work wanted to know about Crohn's disease because most of them had never heard of it. So they asked lots of questions and I was happy to answer them. After a while though, I started to feel like I was defined by my disease. Everywhere I went people wanted to know how I was doing. I really appreciated that they cared but I was sick of talking about it. I wanted to talk about normal things, like normal people did, instead of focusing on my illness.


By November I was 60kgs, a weight that I was happy with and my Dr's and naturopath were happy too. I still had to be really careful what foods I ate, but I could eat a few more things and I was doing okay. I'd also managed to wean off the steroids, which was a huge milestone. I was working 9 hours per week and things were looking up.


I was so pleased when I got off the steroids, but being off them caused other problems. Weaning off them hadn't been much fun and once I was off them I discovered there were a lot more foods that I couldn't eat. Foods that I'd been able to eat whilst taking steroids, I couldn't eat any more. I couldn't have vegetables other than broccoli, potato and avocado. There wasn't any fruit that I could eat. Prior to getting ill my diet had mainly consisted of fruit and veggies, so this made life difficult and eating unappealing.


I could walk around the shopping centre for a little while, but I couldn't do the food shopping all in one go, it was too exhausting. When I got too tired 2 things would happen. If I was moderately tired, I'd get really bad stomach pains and have to go to the toilet immediately. If I was really tired, my whole body would just about shut down. I couldn't speak or hear and could only see directly in front of me. I'd be able to get myself to a chair, but then I wouldn't be able to move for a few hours. Thankfully this never happened to me when I was on my own. There were numerous occasions Tiger had to carry me to the car because I'd shut down and couldn't walk.


It was around this time that my gastro Dr decided to send me for a barium x-ray to see how much scar tissue I had. He didn't tell me a lot about the test and I didn't think to ask. So I went and booked myself in then trotted along there the next day. When I got there a nurse came out and asked me if I knew about the test and what they had to do? I said no and she told me that she'd never agree to have the test herself. Great. Then the Dr came along and told me that they rarely did the test because it's too invasive and there is a risk of perforation.


They explained that they put a tube up my nose, down the back of my throat and into my stomach, put the barium in through the tube then take x-rays. They said if I didn't want to do it that was fine. I figured that I'd give it a go and if I couldn't cope with it then we'd stop and they agreed to that. Thankfully the nurse and Dr were lovely. The test was awful. It took about 45 minutes and it's something that I'll never do again. The worst bit was when bile started coming out of the tube that was in my nose and running all over my face, it was so gross. Unfortunately, I went there on my own, so had to drive home, which I really wasn't capable of. Somehow I made it home without crashing.


The nurse rang me the next day to make sure I was okay, which I thought was really lovely of her. For the next week my nose was all swollen and bruised from the tube, so I told anyone who asked that Tiger had hit me. No-one who knew us believed me though, cause they all know that it would never happen. Walking around with him was funny, because he's 6 foot and 100kgs of muscle, I'm 5 foot 7 and at that time was really pale and frail looking. Plus, he's bald and looks rather scary. So people would look at me and my bruised nose, then look at him and assume that he'd beat me. They'd give me sympathetic looks and him nasty looks. He was mortified that people could think he'd hurt me, I thought it was funny.


In November the Dr started giving me B12 shots. I needed them because the Crohn's means I don't absorb all my nutrients. B12 is absorbed in the small bowel, where my Crohn's is. At first I didn't notice anything, but I did notice when it was time for the next one as I'd start getting really tired a few days before it was due. They started out every 2 weeks then went to monthly. After the first 2 shots I'd notice the difference straight away. I had a lot more energy and could stay awake after 9pm. Tiger even jokingly asked me one night if I'd taken speed cause I was still awake at 10pm.


By the end of the year I was working 12 hours per week and my Crohn's was under control. In January 2008 I was officially in remission.

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