Sunday, 7 December 2014

My Story: Part 3

I thought that once I had a diagnosis and went home then I'd get better, go back to work and everything would be fine, so I was quite surprised when things didn't work out that way. I was seeing my GP once or twice a week and the gastro Dr every month. But I wasn't getting better. I was sleeping for at least 16 hours a day and I was really weak. I couldn't stand up straight due to the pain in my stomach, I was in constant agony (on a scale of 1 to 10, with 10 being agony, I was around a 9), I couldn't concentrate and I couldn't do anything.

My world had shrunk and I was living in a world of pain. There were days when all I could see and feel was the pain, it consumed me. I couldn't lay on my right side because it was too painful (due to the scar tissue on my bowel), laying on my left side wasn't much better, laying on my stomach was out of the question and laying on my back was painful too. My world was all about pain and poo. After experiencing it twice I can tell you that drug free childbirth has nothing on Crohn's pain. 

I couldn't walk to the letter box, I couldn't drive, I couldn't read, couldn't sit up for more than 5 minutes and sometimes I couldn't even talk. I was helpless. Tiger had to do everything. He had to cook, clean etc. The only thing he didn't do was the washing, which I did, but he had to hang it out cause I couldn't. 

Amazingly enough I still didn't realise how sick I was so didn't ask for help. If she'd realised how sick I was, Mum would have come up to help, but I didn't realise so didn't tell her. Any of my family and Tigers family would have come to help if they'd realised how bad things were. I don't know why Tiger didn't tell any of them. If it ever happens again (which I'm determined it won't) they will all know that I need help and I'll know to tell them. But at the time I was too unwell to realise that I needed help.

My body was falling apart too. I was so thin I couldn't sit down without a cushion under me as my bum bones would dig into the chair, it was really uncomfortable. I couldn't lie on my side as my hip bones would rub together cause there was no fat to pad them. My skin was really dry, my hair was falling out and I couldn't remember anything. Not remembering things was extremely frustrating. I couldn't remember words for basic items. The most frustrated I felt was when I had the following conversation with Tiger. I was talking to him about the fridge and this is how the conversation went:
Me: You know, that big thing in the other room.
Tiger: What big thing?
Me: You know that big thing, it's big and it's in the room behind us and we open it and put stuff in it. (I couldn't remember what the kitchen was called, the word for white and what food was called, which just added to the confusion).
Tiger: You mean the washing machine?
Me: No, not the washing machine, the big thing in that other room, the room we make stuff in (couldn't remember the word for cook), it's huge and it's new, we just got it.
Tiger: Oh, you mean the fridge?
Me: Yes!

Not being able to properly look after myself was really difficult. I became quite creative with ways of looking after myself. My skin was really dry, but I couldn't stand up long enough to moisturise and moisturising lying down was difficult, so I started using body oil in the shower. I'd put oil all over myself, then pat myself dry. That solved the dry skin problem. I'd brush my teeth and brush my hair sitting down. I figured out that if I plaited my hair really tightly it'd stay like that for a few days, so I didn't have to do it every day. I'd sit down to get dressed. After I had a shower I'd sleep so that I had the energy to get dressed and get to the lounge room.

Through the whole illness I refused to stay in bed, cause that would have been like giving up. Only people who are really sick stay in bed all day and I didn't want to be one of those people. No matter how bad I felt I made sure that I had a shower and got dressed every day. It'd usually take me at least half the day to get showered, dressed and to the lounge room, but I always got there. 

Doing everyday things that used to seem normal became a huge chore. At first it took all my energy just to have a shower and get dressed. I'd have a shower, sit on the toilet to dry myself then sleep for a few hours. On bad days I didn't even dry myself before I went back to sleep. When I woke up I'd get dressed (sitting down) then rest for about half an hour. Next I'd do my hair and brush my teeth (whilst sitting on the toilet). After that I'd sleep for about an hour. Then I'd finally make my way to the lounge room where I'd spend the rest of the day sleeping.  

One great thing whilst I was sick was foxtel. I've never been much of a tv watcher, I usually read. But I didn't have the energy to read and my eyes were too sore, plus I couldn't concentrate. We'd got foxtel a few months earlier, I hadn't wanted it, but Tiger had, so we got it. It kept me sane whilst I was sick! For the first month I couldn't even use the computer, so I had no contact with the outside world other than phone calls and I was often too worn out to talk, it just took too much effort. Luckily my family and in laws were great about keeping in touch and were happy to talk without expecting a response. There were a few of my friends who made a real effort to keep in touch too, it meant a lot to me.

By this time I'd been off work for nearly 2 months and they were starting to ask when I'd be back. I didn't know, so went to my Dr. In the past he'd been very conservative with giving me medical certificates, he'd usually only give me a med cert for a few days but this time when I asked him for a med cert for work he gave me one for 7 weeks. It was then that I started to realise that I was very sick. I got a shock when I realised that I wasn't just going to get better and go back to normal, but I think I was still in denial about the whole thing. I'd never considered that I might get sick and stay sick, I'd always thought that you got sick, went to hospital and got better. I'd thought that even if I had something serious, like cancer, it would only be temporary, cause I'd get rid of the cancer and be okay. So getting used to the idea of having a permanent, debilitating illness was difficult and depressing. It made me really question me future. Being sick had never been part of my plans and I didn't know how I'd cope with it. What sort of future was I going to have if I stayed so sick? I knew that I couldn't live like this, it had to change, I had to get better.

I'd been out of hospital for a few months and I wasn't making any progress. I had put on 2kg's, so was 54kg's. I had no clothes that fit me (they were all too big), I was in constant pain, I couldn't do anything and had to be in a wheel chair when I went out because I didn't have the energy to walk. After I had a shower I'd sleep for 2 hours to get my energy back, that's how sick I was. I started to get worried and it sunk in that I was extremely sick. I was getting worse not better and I wondered if I'd ever recover.

I was really struggling with food because I had no appetite and I couldn't eat most foods as they made me sick and caused a lot of pain. Plus, preparing food took energy and effort and I didn't have much of either of those things. I couldn't eat any fruit, meat, gluten, dairy or vegetables, other than potato's and avocado's, so my diet consisted of puree'd apple, potato, rice, avocado, gluten free asian soup and a little bit of chicken every now and again. If I ate anything that didn't agree with me I'd be in pain (agony) for the rest of the day.

After a while I managed to be able to sit up for about 10 minutes at a time so started researching Crohn's disease. I read everything that I could get my hands on and educated myself to the best of my ability. It was good to know that there were other people out there with the same problem because I hadn't been able to speak to anyone else with the condition so felt very alone. I also started emailing my friends which helped a lot with the loneliness and isolation. The internet was my lifeline to the world.

I was so, so scared but I didn't tell anyone. I could feel myself slowly dying, I knew my body was shutting down. I was wasting away and I couldn't do anything about it. I knew I needed to do something but I didn't have the energy to help myself. I've never felt so alone, helpless and scared in my life. 

Living the way I had been just wasn't an option. I didn't know how I was going to do it, but I knew that I had to get better. I couldn't face the next 30 years of my life like this. Suicide wasn't an option, so I had to get better. I've never told anyone this: I seriously considered suicide. It wasn't just a fleeting thought, I thought about it for weeks. I thought about how I'd do it, where I'd do it etc. I thought about it in minute details. I considered the pro's and cons but in the end I realised that I couldn't do it. I couldn't do it to my family and to Tiger and more importantly I couldn't do it to myself. That meant the only option was to fight with everything I had. And that's exactly what I did. 

I had an amazing naturopath, but unfortunately he was a 2 hour drive away. I knew that if I could get down to see him, he'd know what to do. My Mum made me an appointment, picked me up and drove me down to see him. It took me a week to recover from the trip, but it was worth it. What he had to tell me wasn't good. I was 54kg's, I had 1% fat around my organs (this is really bad), I had the body of a 14 year old (which isn't good when you're 34). Before he could treat my Crohn's disease he needed to build me up so that my body was healthier and able to fight the disease.

He treated me with acupuncture and gave me lots of medication to take. He told me to stay with the gluten free diet, fish oils and the other medication the gastro Dr had prescribed for me. He gave me strict instructions not to stop taking any of my prescribed medication without giving him at least 2 months warning and for one of them 6 months warning.

Despite him telling me how sick I was, he also gave me hope, he was confident that he could get me healthy. Finally I started to think that maybe I'd get through this.

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