Thursday, 9 June 2011

My story: Hospital 2010, #1

It's hard to work out where to start describing the pretty drastic downturn my health took in 2010, particularly the latter part. But I'll try to give a general idea along the way, along with photos so you can see what's happening.

For the first few months in 2010, I was doing relatively well compared to the last few months of 2010. While I was still consistently and pretty badly affected by my stomach disagreeing with everything I did, I was able to get around it to an extent, and still go out to do some work on the better days. The most effective and functional pattern for the previous few years as far as eating went, was to eat very little during the day. Food was usually just a few bananas along with bottles of water to keep me going. Then when coming home at night I would eat a fair bit of food.

After a terrible year in 2006, where I was so sick I couldn't even justify a visit to a friend's house in 9 months, I had started pureeing very plain and basic food; namely turkey or chicken with steamed pumpkin, broccoli and carrots, all blended up together, nothing added apart from salt. As you may be able to imagine, those foods mixed together into liquid forum turns into a sloppy orangey-grey mush, which was particularly visually unappealing, but had the necessary protein and nutrients to keep my body going until the next night. Off the top of my head I can't think that I actually took a photo of it, but I may come across some later. 

Below is a photo of me at a pretty low point in September 2006, outside my doctor's surgery in Stirling, which is pretty cold in the winter, being in the Adelaide Hills. It's about an hour's drive there in heavy traffic, which is a very long time when you're feeling so sick every movement just makes you feel worse. While I don't look particularly healthy in this photo, even I can't really appreciate just how bad I was feeling at the time it was taken, and the total feeling of being trapped in my own body, with the physical symptoms of the sickness sucking away any enjoyment I might have in daily life. Looking back, I really don't know how I managed to force myself to eat while I was feeling so horrendously sick nonstop.

Photographer: Rohan Phillips 
Camera: Nikon D70s 
Lens: Nikkor 18-70mm f/3.5-4.5 
Exposure: 1/20 @ f/3.5, ISO 1600

Despite following a similar pattern to late 2007, 2008 and 2009 as far as activity and eating went, albeit being more busy with work and a social life, things were clearly starting to head downhill as March and April 2010 came around. I started being affected more and more by increasing levels of fatigue and nausea. I did have some better days here and there, but looking back there was an obvious downward spiral. I just didn't know quite how far things would go. 

For example, in early March I headed out for a couple of days to take photos of the Recovery School Truckworks Australia was conducting at the CFS training centre and Speedway City. 

Photographer: Rohan Phillips
Camera: Nikon D300
Lens: Nikkor 17-55mm f/2.8G IF-ED
Exposure: 1/500 @ f/6.3, ISO 200

 As awesome as it was jumping into trucks very far into the six-figure range cost wise (the Peterbilt above makes it to seven), and eating a reasonable amount of food the night before, I was kind of just hanging on physically, and was feeling too sick and fatigued to really enjoy the experience, which included very entertaining activities like shoving the old wreck above off a quarry pit edge for a recovery demonstration.  I didn't actually attempt to eat anything over the course of the day, despite walking around a lot to take photos. Just kept drinking water to keep my fluid levels up, and even that wasn't going particularly well.

In the second week of May I did three feature car shoots, while I was having a good few days energy and nausea wise. I was feeling a bit better, and thinking that if I could keep up a reasonable level of work like that, maybe I could actually start making a half-decent income. They were to be the last car magazine shoots for a very long time, and are still the last to date. Below is a wallpaper of a BMW I shot that week for Hot 4s magazine.

 Photographer: Rohan Phillips
Camera: Nikon D300
Lens: Nikkor 17-55mm f/2.8G IF-ED
Exposure: 1/80 @ f/4.0, ISO 200 

By the end of May I was at the level where I was pretty much starting to be confined to being at home resting most of the time. I did go out here and there, but those occasions were few and far between. And even that started to be too much heading into June. There was some unfortunate timing with me going so far downhill when I did, for the whole of June my parents were over in the US, having a 'second reception' of sorts for my older brother and sister-in-law who got married in early January, which is when this photo of my girlfriend Sally and I was taken.
 Photographer: Anna Tarasiuk
Camera: Nikon D90
Lens: Nikkor 17-55mm f/2.8G IF-ED
Exposure: 1/320 @ f/5.0, ISO 200

By the time October 2010 came around, I looked like this... 

The nausea and consequent fatigue just got worse and worse as time went on. I was eating a pretty marginal amounts of the above-mentioned turkey mush, and some puffed rice cereal. While having food one afternoon while Sally was over, I wasn't feeling too bad (or so I thought) so I had a few bites of the pear she was eating. Big mistake. It was ok for maybe 10 minutes, but then the lack of any digestion started to make its presence known. While I didn't vomit (I pretty much never do) the nausea was so bad I couldn't really move or even breathe properly for the next couple of hours until things settled down again. Obviously that was a pretty bad sign. And while the nausea and weakness had been pretty bad, I was able to just keep my head above water in regards to food and water intake.

 One evening Sally had gone off to a friend's house, while my younger brother and his girlfriend were out somewhere as well, leaving me alone in the house, albeit only briefly. Now ordinarily this would not have much of an effect really, if I was feeling even vaguely ok. But in the previous couple of days my food and water intake had decreased even further.

I already had a pre-scheduled doctor's appointment in Stirling on the afternoon of July 15th, and pretty quickly after seeing me, suggested I go into hospital in Stirling to get a saline drip, as by this point I was quite dehydrated and had a very weak and rapid pulse. I was feeling so bad that I was freaking out pretty badly about what to do, and I wasn't certain of the situation with my health insurance, as the small hospital in Stirling was a private one. I hated the idea of having to return to a hospital environment, so we decided to straight away get Dr. Bode to put in an IV to get a couple of litres of fluids into me, which I desperately needed. 

After spending some time lying down and getting my hydration levels up from critical, I started to feel a little bit better. But with me still being at a very low point (or so I thought at the time), he suggested I come back the next morning for another couple of litres of fluids, along with some vitamins and minerals to try and help things along.

despite the two IV infusions of vitamins and fluids from my GP on the afternoon of the 15th and morning of the 16th, everything came to a head the next night, Saturday July 17th, 2010.

Photographer: Rohan Phillips
Camera: Canon Powershot A480
Exposure: 1/100 @f/3.0, ISO 80

While lying down on the lounge in the family room, watching Foxtel and trying to distract myself from how terrible I was feeling with TV, the physical symptoms reached the point where I could no longer manage to keep up enough of a water intake. And after being very sick for almost 10 years, I'm sadly very much used to swallowing food and drinks when I really do not feel like it, and to be unable to even take in water, things have to get pretty catastrophic. 

While I had been trying to stay positive throughout the past few weeks, a overwhelming sense of dread and fear began to take hold, as I started to realise that the situation had gotten to a point where I was no longer in control and able to take care of myself. The feelings of sheer terror were exacerbated by the fact that it was dark, and I was all alone in the house, with my parents thousands of kilometres away in America, and Sally didn't have her phone on her for a while at her friend's place. 

In desperation I rang a few other friends and people from church to see if they knew where she was or could help me, I really wasn't capable of thinking straight while so malnourished, dehydrated and scared. Fortunately I got through to one of my friends, Prach, who quickly came over to see what he could do. It was decided fairly quickly I really needed to get to the hospital for rehydration at a minimum, despite 4 litres of fluids administered intravenously at the doctors' in the previous 24 hours. 

I took this photo of a Mercedes ML350 while walking back to the car from the doctor's office in Stirling. It would turn out to be the last non-hospital related photo I would be taking for quite some time. 
Photographer: Rohan Phillips
Camera: Canon Powershot A480
Exposure: 1/60 @f/3.0, ISO 125

 I also got through to Sally soon after Prach came over, in reality she was probably only gone for an hour or so, but it my state it felt like a very long time. She also rushed back home to decide what to do. Dr. Bode had suggested admitting me to hospital the day before, but after really bad experiences in 2006 I really wanted to avoid going back to one. I didn't have a choice. While I felt a bit relieved once there were people back near me again, so I wasn't totally helpless and on my own there was still the terrifying reality of what my body was doing. It's hard to describe the extra hopelessness and awfulness that feeling like that all the time does to your mindset. 

For those of you not affected by gastroparesis or similar chronic illnesses, (you may not appreciate how lucky you are to have a functional body) think back to your last stomach virus or bad flu, or the the time you thought the milk smelled funny but you drank it anyway. As bad as you will feel acutely with a bout of mild/moderate food poisoning or the stomach flu, you do have that inner dialogue and awareness that it will pass in a day or two after some time spent alternating between sitting on and kneeling in front of a toilet bowl. 

Or like having a terrible hangover, where just turning over in bed makes your stomach turn, and the slightest smell, sound or sight puts you over the edge. I've never been able to drink alcohol so I don't know what an actual hangover is like, so I'm just going by stories from friends. It sounds like a picnic compared to my situation anyway.

Which is a tremendous difference to knowing that if you do start feeling better, it will happen very slowly, potentially over the course of a month or a year, or maybe not at all. And in a very concerning comparison to my hospital admissions in 2006, this time I was on several different medications to try and keep my symptoms in check somewhat, as opposed to just a couple of multivitamins. And with an illness like mine, what I was having was almost all of what the best medications there are to treat it, as well as eating a significantly better diet than I was in 2006. Between those two things, there really was very little room for what could be changed for the better this time around. 

After some more desperate ringing around to several doctors to see if I could organise a home visit for some IV fluids, during which time my younger brother Todd and his girlfriend Mel came back home, it was decided it was time for me to head off to hospital. I was just too far gone for a doctor to be able to do much at that point.

With all the bad memories from 2006, I hated the idea of being forced back into that kind of environment, especially while feeling so awful. Todd got some of my stuff together into a backpack, including medical information and other bits and pieces I might need. I slowly walked outside to Prach's Chaser with Sally, Prach and his girlfriend (now fiance) Frances, ready to drive off to an emergency room. I desperately just wanted to feel a little better so I could stay home.

But it wasn't up to me. I had to go. Little did I know this was only the beginning of a truly horrific second half of 2010. There was so much worse to come...

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