Day 1

Hi again, no I am not going to do day 1, day 2 etc. I just thought that this was really my first day and just thought it would be an appropriate heading...I digress, sorry. I wanted to share my day with you and try explain how things work for me since my diagnosis or change of life. since I was young....oh still am actually....no really young I mean, like the pimple stage young, I had an interest in designing and I once thought I was going to study interior design. This did not happen but I was always pretty good with my hands so I learned I few skills along the way such as carpentry, cabinet making, building and so on. When I had my business I would work with my staff and so over the years have managed to teach myself just about all aspects of building and design. I tell you this because it is leading to something, I tend to expound quite a bit so indulge me please.

Any-hoo, When I was diagnosed it became quite obvious that I was no longer going to be able to continue with the business, so I shut it down and had to move onto other things. What I did for a living was one thing, what I "was" was completely different, I was always going to be an Artist (a painter) but life got in the way and I got side-tracked. I did however continue to paint over the years and also took up photography. So when it felt like my life had a huge hole in it, with what felt like all my hopes draining away, I decided to start being what I am. I packed my car (there is more to this story) and left for Cape Town, not really sure what the hell I was actually going to do, none the less it was interesting and for a change took my mind off my disease. It was tough at first but, friends loaned me a few Rands and I bought some canvases and just started. It was going ok at first and then it dawned on me that I still needed to eat...and one has to pay for it first, so needed a plan "B" only to supplement my art and photography.

To cut a very long and boring story short, I now do odd jobs, because, as I mentioned...I can do stuff..very cool. I do a bit of carpentry, painting, building (not much of that) and just recently, tiling. That brings us all the way back to today. I started a job for a client in Kommetjie. It is a beautiful, large home being renovated, with a grand second story patio overlooking the ocean. It looks directly onto Hout bay and the mountains. It is a lot of tiling and I am working on my own for now, so it is tough going. What I earn through the tiling I use to develop my photo's and then take them to a framer to have them mounted and a boarder placed around so they are ready for framing. I would like to frame them but no cash for that yet. So this is what I do, but for the purposes of the blog I also want to tell you what I actually go through. This is not intended to be a moan session or a chance to get some "ah shame's" it is merely to outline the difficulties I or others have in there daily lives with this disease. I am still fortunate because I am not on oxygen yet, but most are and this is even tougher to deal with.

I have never had difficulty with hard work so it comes naturally to me to be quite physical and spend the day on my knees or up on a ladder, however, things really change when one does not have the lung capacity one used to. The only way I can explain to you how it actually feels is for you to imagine that you are lying on your back on a floor and someone is sitting on your chest. The air seems to escape and as it does it leaves the chest closed, as if being squeezed. When you try to take a breath the weight of the person sitting on you is just to heavy to allow as much air back into the lungs, so you feel pressure build up in your neck and your eyes feel like they are bulging. It's a kind of compression in a way. When I start to work I am fine but, as time goes on I get this feeling I just described, and it stays with me the rest of the day. For some reason everything aches more now. My back hurts like hell and my feet hurt like mad,my joints get stiffer and I constantly have to stretch. I don't know exactly what causes this and I have asked the Doctor's about it but they always stare at me as if I am just making it up. I don't know if you know much about cortisone but it is terrible stuff, cheaper than disprin but, you need a script. It has so many side effects that it takes your mind off your disease almost immediately, perhaps that is why it is commonly used. So all the aches and pains and stresses could be from the disease and from the drugs. I try to work at a pace that is best suited for me and take rests as often as I can. Today I took a flask of coffee, two sandwiches with cucumber cheese and Mayo and a bottle of lime and water which, I make in one of those plastic "pump" bottles. I took a break and sat on the edge of the concrete patio which had just been cast about a week ago, with my legs dangling over the edge I could look out at the ocean with it's emerald green waters. I looked down onto the dirt road just below me and watched a little dog walking around as if no one in the world was present. It just sniffed the ground and busied himself with something that looked more like he was looking for clues to a murder. He wondered onto a patch of grass, stopped, took a dump and then carried on his business of trying to solve the murder. I thought to myself how wonderful it must be to just exist as if there were no cares in the world. I really wanted to be him for a bit, just chilling, checking the ground for clues, taking a dump and just carrying on. Our lives are so complex and we make things so much harder,we exist but don't really live, plodding through time, trying to get things done and perhaps when it is done then we can do nice stuff, but until then we have to do this "stuff' first. When does the "stuff"end? when do we get a chance to just live and do some things we love to do without feeling guilty. Our lives are so fragile, but we choose to ignore this and constantly live in the hope that someday I will be able to enjoy it.

I am very tired now and my feet and calves are aching like hell again so going o leave you with that thought.

all my love

It's a start

Well it's a start. I am still trying to navigate around the site and feeling rather doff....I will figure it out eventually. I started this because I wanted to do something constructive and I felt this might be just the thing. I can be quite curious at times and since my diagnosis I have been more curious about "why?" "when?" and "what next?" perhaps all my searching and digging and scratching will be of good use to some one in a similar position? Perhaps my experience is no different to the next? I am sure though that whatever happens next will be unpredictable and interesting either way.

In 2008 I was diagnosed with a lung disease called Usual Interstitial Pneumonia, it is one of many Interstitial lung diseases, but is the one with the most morbid outcome. There is currently no known cure or treatment other than a lung transplant Ya Right?? Lung transplants can cost up to R1 mil without complications, the results are not great high rejection factors, skills and facilities are, as far as I know not great in this country. So I find myself surrounded by a raging fire storm armed with a dripping facecloth.

One thing I did realise though...it takes a Doctor less than a minute to give you the news and more than two years later I still can,t figure out what to do with it. I don't mean to have a go at the medical profession.....but I will, just a tad. It seems one of the subjects Doctors do not cover in their many years of study is some bedside manner and at least the ability to give it to you straight and point one in the right direction, after that it will be my problem I know but at least I will some direction down which passage to go. Almost all the information I have today comes from the Internet...no really...I shit you not. I happened to find a fantastic online forum called "Huff n Puff" naturally an American site. It was through this site that I could share and ask a ton of questions relating to my issues and without fail within a couple of hours I would have a caring and sincere response from patients or caregivers explaining exactly what to expect and what I was experiencing. So I am hoping I can do the same, but I have to carry on with my enquiries and this is the reason for the blog. I have questions and some answers and I want to share them and get some feedback, so if anyone is up to it please indulge me and share with me your insight and knowledge. Just one thing please...bring your sense of humour with.

This is my first entry and I will be looking for answers to and sharing topics such as, death and dying. When I was diagnosed the first thing I wanted to do was to really start living and not just exist, it's strange how I never gave that a thought.

I look forward to your company.