AND DISEASE SETS IN:

AND DISEASE SETS IN:


It's difficult to decide where to start this story from but I've finally chosen to begin with my fathers illness. In 1990 my father was diagnosed with an incurable heart condition called Cardiomyopathy, in lay mans terms I'm led to believe this means that the medical fraternity doesn't really know what causes it, it's just Viral the doctors say. For 13 years I watched my father, the man I looked up to and somewhat idolised, become weaker and weaker, year by year. Over the years I watched his struggle with pain, medication, depression and finally obsessive compulsive disorder among a myriad of others ailments, every year it would seem and he probably was, admitted to hospital to stabilise his fluctuating blood levels, kidney function and so on and so on. In the 13th year he was admitted to hospital shortly after his 57th birthday where his condition became worse to a point where he was never going to return home and in the end, see out his final days in Royal Perth Hospital, at peace at last (28/07/01).

It probably wasn't at that point that I thought, FUCK!! that, I'm not ending up like him, it would of been much earlier, perhaps when I was 15 or something but it was at that point, full of emotions, hatred and questions that i decided I'm going to do something to MINIMISE my chances of ever being in that position. For as long as i can remember I've worked and worked damn hard especially after entering the mining industry in the year of 2000, a new millennium, a new start, where I worked varying rosters doing a minimum of 12 hours a day and more often than not, up to 18 for three to eight weeks straight with one week off in between. My family didn't have much money when i was in my teens so i guess I'd had some extra driving force behind me to work my ass off and work I did, but not only did I work hard, I played hard, real hard and enjoyed the excesses my increased income could provide. So after my dad passed away and I'd taken a ride on that great roller coaster ride called Grieving, I decided I should start slowing things down a bit and looking after myself. I cut down on the toxic excesses or stopped completely and started to excersize and in turn take things more seriously in my life rather than just live day by day. At the start I weighed around 91kg's but after a couple years I found out I'd worked my way down to 79kg's which i was suitably pleased with at the time. I was happy with life, at ease with the loss of my father, on a good wicket and generally enjoying myself.

It was some time after my fathers passing, still working my ass off but being a good boy when it came to substance abuse that I started to have problems with my skin. At first it was just a few outbreaks but gradually over the period of two to three months the rash became a great deal worse. Several doctors, several creams and potion lotions later there was little difference and work was starting to become difficult to get through and i was referred to a Dermatologist for treatment. Two Dermatologist's, countless blood tests and more drugs and I was still no better, and this was after a period of about one year from memory. At the time I'd never had skin problems, my skin was always so perfect but now I rarely had a day without some sort of pain from broken skin, rash or chafe and was becoming increasingly annoyed with the situation, especially when I was starting to have more time off work and eventually had to make plans to move back to Perth so I could cut my work hours down and look after myself a little better. I moved back to Perth and found things to stabilise a bit and was finally diagnosed with Psoriasis and accepted the fact that I was going to experience these outbreaks from time to time and learned what potion lotion my skin needed at what time to combat a serious outbreak but apart from that things got back to normal for a little while.

It was a few months later, i think, as times and dates seem to elude me but i started to notice myself having pains in the abdominal region, which for me was a very rare occurrence and decided to get checked out. I went to see the doctor and he basically decided to see how things go because we couldn't tell if it was part of the Psoriasis or not. A month had passed and still things didn't get better so the doctor said I should have it checked out which meant having a procedure no male or female likes to hear, a COLONOSCOPY. After the procedure was finished and I'd come through from the anesthetic I was seated down and told by the nurse that the Specialist was 99% sure i had an illness called Crohns Disease and I can remember at the time thinking oh yeah, no big drama, gimme some pills and I'm outta here. I had an appointment with the specialist the next day and was sat down yet again and explained in great detail what this disease was all about and I reckon my jaw just dropped, I couldn't believe it, an incurable disease that causes my intestine to become inflamed, this just couldn't be happening to me, not me, my Dad went through this sort of shit, not me, it's just not right.

At first I was OK with the whole thing and was started on some medication and sent off for blood tests to get things going but was progressively getting worse week by week. It was after my first month on meds I noticed things were still getting worse and nothing was happening. I was still in pain every day and was beginning to lose weight, fast. By about the second or third month and with monthly visits to the specialist and monthly blood tests I was still getting worse, much worse. The abdominal pain was excruciating, constant diarrhoea, dizzy spells, memory loss, my eyesight was affected, i had no appetite, no energy and within a short time that whirlwind called depression had started to kick in. My specialist appointments were moved to weekly including the blood tests and I was trying my hardest to stay positive but I'm sorry, that just wasn't going to cut it and i found myself starting to slip further into that nasty self absorbing world of self pity called Depression. I didn't think things could get any worse until i woke one morning to find my foot had swollen and i couldn't walk due to arthritis apparently, being yet another symptom of the disease. That was the last straw, not being able to walk, FUCK that.

At this time my medications were up to 15 - 20 tablets a day, I couldn't walk, every move I made just sent a searing pain through my body and having severe arthritis I soon understood the pain the elderly go through with this condition but that didn't change my self pity though, I just understood. My weight had dropped from 79kg's down to 65kg's within a couple of months which further depressed me although I found a reason for everything to depress me at that point and I just couldn't comprehend what was happening to me, one year I'm this guy that can work hard, party hard, be a man's man, so active I just couldn't handle to sit still for a minute and the next year I'm this pathetic lifeless human( so I thought) being that I couldn't even finish a six hour day at work. Things just weren't getting any better, I was still in pain, still having constant diarrhoea, headaches, arthritis in the knees, elbows and ankles; severe back pain and shoulder pain, constant ear infections, eyesight issues, dizzy spells, memory loss, loss of coordination, fistulas had started to occur and severe infection had started to well and truly set in. I was like one of those old men you see trying to hobble about, taking one step at a time worth about 200mm in distance, the simple job of getting in and out of my car was just too painful. I tried so hard to continue working although I was just more of a nuisance than anything else but I had to try and keep busy to prove I could do it. I got to a point a couple of times where I realised I just shouldn't be driving a car, I'd lost my nerve, but I kept saying " this just couldn't be", I can drive anything from trucks, bobcats, tractors, motor bikes, you name it I've probably driven it but now I was even scared to drive my car.


The depression hit hard and although I'd dealt with some form of depression in earlier times it certainly wasn't anything like this and I know I had support from friends and family but unfortunately they just couldn't help, they couldn't possibly understand what I was going through. I got sick of hearing " How are you feeling?", "How's your health?" and I know they were trying their hardest but it just wasn't enough. My brain was still going a million miles an hour, as it usually does, but my body just couldn't do a thing, you see, when your stomach isn't working properly everything else just tends to follow and I started to feel like a Goldfish trapped in the same bowl day in, day out and I just resigned myself to my house and began to shut everything else out. Somehow I still managed to make it to work but I was useless and apart from that I just stayed in my house letting that world of self pity evolve. I was allowing myself to be consumed by this disease and just couldn't stand the pain anymore, just one day i cried, one day without pain, this has just gone on too long. I began to hit walls or something hard to take away the pain but surprise surprise that didn't seem to be helping, I'd lost my appetite and couldn't be bothered eating anyway since the pain was so bad when I had to pass my bowels, which didn't help my situation either. I'd had to give up alcohol because my stomach just couldn't handle it and the meds couldn't be used with alcohol either, so this didn't do my mental state any good, not that I felt I needed alcohol but it certainly was a big part of my social scene. I started to smoke Green flat out again and just spent everyday in a constant high, further withdrawing myself from society and although up until that point I'd refused to use pain killers and felt I was stronger than that and didn't need them, I soon found myself using them and using them at one hell of a rate. Without going into it, I had an endless and ultimately free supply of some pretty good pain killers containing that wonderful ingredient called Codeine and before long I found myself using a fairly toxic dose and had to resort to crushing them up to filter out the codeine so I could use more of it, oooohh what a sweet addiction, a free drug and completely legal.

My mental state was just so low even I couldn't believe it but truthfully I really didn't care, I'd end up crying myself to sleep because of the pain or self pity and my brain just couldn't come up with any positives to life whatsoever, a grown man crying, how pathetic I thought. So many thoughts were just flying through my head, round and round they just kept coming back and no matter how much I tried to get away from them they just couldn't escape my head. Looking back now I just can't believe what went through my head, I'd lie there thinking my life is so fucked up, what good am i now, I'll be lonely for the rest of my life as no one wants something thats broken, how do I explain to someone that i have this illness without them feeling sorry for me? I didn't want to be felt sorry for, I wanted to be normal, I'll never experience the possibility of marriage I thought, I'll never experience bringing up children, I'll never be able to start that business venture that I'd wanted to, I'll be on a pension or a benefit and soon and have to sell my house, I'll never, I'll never I'll never was all I could come up with. At around the same time my first ever dog, Zibby, who was eleven months old at the time and I'd spent so many hours training and adored so much came down with a condition that gave me no choice but to have her put down. This crushed me and I still can't look at a photo of her without tears and I just remember thinking, fuck hey, what next, followed by that inevitable question when faced with such fucked up times, WHY?, Why fucking well me? Why?, Why?, Why?, What the fuck have I done wrong? I'm a good person for fuck's sake, I've never cheated on anyone or with anyone, never hurt anyone, never ripped anyone off, I always paid my overdue video fees, hell I even had a couple of charities i used to subscribe to and I just couldn't take anymore. My body had now gone as low as it could go without hospitalisation I suspect and my mind was quite simply focused on ending my life, I'd weighed it all up, I had no dependants, I didn't owe anyone anything, my meds weren't working although I was visiting my specialist every week, so what was the point of staying on this earth, i wasn't looking for a reason to stay thats for sure.


I'm not sure exactly when I decided to give it another go but i can just remember sitting there contemplating suicide and knowing that people would miss me but I knew in time they'd get over it. I remember closing my eyes and seeing my mum's face so vividly just staring straight at me and thought holy fuck I can't do this to her, she's been through so much, she first lost her husband, then her father and now possibly me, it would just destroy her and for the first time I realised what impact my life would have on someone if I'd end it or decided not to try and get better. I immediately went round to mum's and although I didn't tell her everything, I told her as much as she needed to know and finally just broke down and asked for help, I just needed so much help and she knew anyway, as mothers do. I promised myself I'd give all my remaining energy to get better or at least try to.

We started by going back to basics and modifying my diet and having her cook my meals and regulate my meds, as I'd pretty much stopped taking them at that point. I gave up Codeine which was one of the hardest things and one of the things I didn't tell mum about for certain reasons. Things were still pretty fucked at that point and it did take a lot of convincing to keep going with it but very slowly over the period of a few months I started to get better, very slowly. I decided to trial my meds to see if one or more were making me sick and found one did upset more than it was helping me. Week by week I slowly started to come round, my appetite started to return, my arthritis started to subside. I fought against mum for a while to go on anti-depressants as I always thought I could beat it by myself but eventually gave in and started to take them, hmm i thought, another fucking pill, yuk. I found a web site that had a forum attached just for people with Crohns and what a defining moment it was. Oh my god I thought, I'm not the only one, there are others just like me and to top it off there are some even worse off than myself, for some reason I just felt this great weight lifted my shoulders. What a moron I've been, there are others that are simply hospitalised almost constantly and to make me feel worse I started to talk to people at the age of 16 who had it just as bad if not worse than I did. My heart just sunk, these poor people haven't done half the things I've done in life, some can't even make it to uni or even afford uni because of such expensive medication bills. I felt like such a dick head, what an eye opener, Why didn't i think to find this before?

As months went on I slowly got better and better, I found a new lease on life, a new perspective and now know I can handle anything thrown at me and I'm not scared anymore. Life still isn't back to what it used to be for me but i don't dwell on the bad days, just the good and I have a way to go before I'm into remission which could take a year, 2 ,3 who knows but I can't complain as I'm back to work, play sport and pretty much do everything I want to do. I've found nowadays I just move the goal posts a little closer to where I stand and perhaps a little wider so I know I can complete the goals I set for myself. Everything happens for a reason in this life and I'm happy with whatever is thrown at me and who knows how my disease will go in the future as it's a life long condition but I'm just happy to enjoy the simple things in life, I don't get stressed anymore or depressed for that matter and I only look for the positives in life. I'm just glad to be back to my cheeky, happy self and enjoy every moment I'm on this planet. I didn't write this story to pretend I can write or try to get things off my chest, as I've dealt with everything that has happened in the past but simply thought that maybe someone out there who has just been diagnosed with Crohns Disease might read this and understand that if you hang in there long enough it'll all be OK.