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 catalog 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 center 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.