Sunday, 14 December 2014

My Story: Part 4

13 days after I'd seen my naturopath I started to feel better. I went out to lunch with a friend and sat there for an hour without getting too tired, sick or sore and having to go home. The next morning I woke up feeling 50% better than I had the day before, which was a huge difference. I also did the first semi solid poo that I'd done in 2 months (this is a huge thing for Crohn's patients!)

I started to have real hope that I'd actually get better. I'd been feeling pretty down, wondering what my life was going to be like and how I was going to get rid of this horrible disease, cause there was no way I could live the rest of my life like that. I knew I had to get better, no matter what it took. But I just didn't have the energy that was needed to fight the illness. After seeing the naturopath, I had hope and it was the first glimmer of hope that I'd had for months.

 

I was so, so scared. I didn't know how to cope with being ill, I felt isolated, alone and really frightened. I couldn't talk to anyone about it either, so it just bubbled away inside me. I couldn't talk to Tiger cause he was too wrapped up in himself to be able to hear me, plus, he was really worried about me, so I didn't want to worry him further. I felt like he blamed me for getting sick and used my illness against me, so I didn't want to give him any more ammunition. I couldn't talk to my family or friends because I didn't want them to be any more worried about me than they already were. So I dealt with it on my own for a long time, until I found the IBD Support Australia forum. Finally I had a place where I could ask questions and talk about my fears.

Through the whole experience I really wanted a friend that I could talk to without them making it about them. I wanted someone that I could tell how terrible I was feeling and for them to say "it's okay, tomorrow will be better", or "that sucks, you poor thing". If you ever get the chance to be that person for someone, do it. Don't tell them you are worried or make it about you, tell them that it sucks and they are allowed to be scared/upset/angry. Tell them you are there if they want someone to talk to. They'll be forever grateful.

I often get told that I'm strong/brave/tough to have dealt with being sick but I wasn't. I had no choice. I wasn't strong, I was more scared than I've ever been in my life.

I was feeling really weak and scared. Prior to getting sick I'd felt strong and capable, I did martial arts and was confident that I could look after myself. But when I got sick that feeling went away, I felt weak and vulnerable. I knew that I had no hope of defending myself and didn't like being alone. I hated Tiger going out because I was scared to be alone. This was a new feeling for me and I didn't know how to deal with it. I suppose some people feel like that all the time, but I'd never experienced it. I'd always been strong and independent so to be weak and dependent was an awful feeling. I didn't like it at all.
 

I also felt totally disconnected from my body. I'd been feeling this way since I was in hospital. They did so many tests and stuck so many needles in me, I felt like my body didn't belong to me, it was just there, but it wasn't a part of me anymore. And it wasn't my body, because my body is strong, fit and healthy, not weak and sick. I figured out that over the 6 days I was in hospital I was having at least 5 needles a day. Luckily I don't have a fear of needles. It didn't look like my body either. My body had muscles and flesh, but the body I looked down at was skin and bones, it looked horrible. I felt like my body had betrayed me. I'd done everything right, so why was it behaving this way? What had I done to cause this? What could I have done to stop it happening? It just didn't make sense.
 

Under the care of the naturopath, my GP and gastro Dr, I slowly started to get better. By September I'd put on 3kgs and was 57kgs. I was able to eat foods that I hadn't been able to eat for a while, I had a bit more energy and my pain was decreasing. I was also weaning off the steroids, which was a huge step.
I was spending more time awake and only sleeping for about 14 hours a day, which was nice. I also started wearing make-up again (this was huge, I hadn't worn make-up for months). I had to sit down while I was putting it on cause I couldn't stand up very long, but at least I felt like I was looking a little better.

 

My illness was putting a huge strain on our relationship. I needed company, but I couldn't go out for very long and since I had nothing to talk about (other than poo), I didn't have much to say. People would come to visit but they didn't stay long. Most of them didn't understand how ill I was because I didn't look too bad and I'd been sick for so long. Tiger was going out socialising and I was spending all my time at home. I hated it. I needed him for company but he didn't want to 'stop his life' for me. So he'd go out and leave me alone. I really resented him for not being more understanding. He did stay at home a lot and I knew it wasn't reasonable for me to expect him to stay home with me all the time, he was going out several times a week (to exercise) and I was lonely. He'd work all day then he'd go out to the gym or martial arts then sometimes he'd go out on the weekends.

Often Tiger was the only person I saw and spoke to all day. He'd get home from work really tired and I'd want to talk and want companionship, whereas he just wanted space and time to unwind. There was a lot of resentment between us. We lost touch with a lot of our wider group of friends cause we were never able to go out. They'd invite us out and we couldn't make it, or we'd go for a little while and then have to leave. They tried to understand, but I don't think anyone truly can unless they've been through it. Some of Tigers friends thought that I had him under the thumb, cause I'd say to him that we needed to go soon, so he'd start getting ready and then I'd say to him "we have to go now" and we'd leave straight away. If only they knew that when I said that it either meant that I was in unbearable pain or about to poo myself (or both).


Tiger was really good at knowing how I was feeling by the look on my face, so sometimes I'd just look at him and we'd leave straight away. They thought I was being a bitch, but I was only saying something when I couldn't cope any more cause I was in too much pain. Tiger understood, but his friends didn't. Tiger also knew what going out did to me, he saw that it took me 4 days to get over going out for a few hours. It was difficult, but we survived. And I was making progress.

I could drive for about 15 minutes and sit up for around 3 hours. It was really nice to be able to go out and sit up. They sound like little things, but to me they were huge.


Then I went back to work.

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