Risks?

I think I am losing my mind? On Friday 31st December my son will be arriving at Cape Town airport along with his girlfriend to come spend time with me for the holidays, so what's the big deal you ask? Well I have been looking forward to it for a long time and it is one of the main reasons why I worked my ass off on this tiling job. I needed to have money to pay Hilary back for my share of the airfare as well as have food and spending money. I saved R320 in notes and coins in a jar in my sock drawer, I also managed to keep R2000 from the tiling job after paying everyone and also had R1700 in the bank. Not bad I think, will be tight but I can do it. But! But! I still have to pay for my photos which I had developed and need to pay for the mountings. Which means I will have about R400 left and two days to sell enough photos to make up for the money I had just saved for the holiday. Why then did I spend it on my photos? Ha ha I don't know....which is why I think I am going nuts.........what the hell? I just had to get the photos done, just had to, If I did not I will not do it and once again put it off till I have money again which means going back to tiling or building something or slogging away on a construction site like I usually do dreaming of the chance to save enough for the photos...when I have enough something else will come up and I will do the sensible thing and get it sorted out and go back to working on a site to make more money to do the same thing over and over and over again. I never wanted to take a chance regarding my son's visit. I want it to be special and I don't want to have to worry about food etc but I can't sell out again. I have this chance this one chance to do something "I" believe in and can only prey and hope it works out. I did the maths.......I originally had eleven done....and sold five of those on my first presentation @ R380 each. Now I have increased my price to R450 because my cost went up slightly. So Now I have about R400 left in my pocket and 27 photos selling at @R450. In two days I have to sell enough to make the R3700 back which I spent and the rest will be for more stock so they can wait till the visit is over. Everything is possible I guess but if I sell nothing how will I get through the next two weeks or so with R400? Am I nuts or what? Oh well I just have to make this happen, I can be so irresponsible sometimes, or is it unreasonable? or selfish? shit I don't know any more, everything seems to have a grey area now.

Ok deep breaths......note to self "just have faith"

Disease

The past three weeks have been quite an emotional journey for me and so I decided to write about just that. This blog is about my experience associated with this disease, but also about me. Is it narcissistic to write about oneself? Not sure, personally I don't think so. I sometimes think that this disease has made me become, or should I say I allowed myself to become, more self absorbed. I worry about the "woe is me" mentality and also worry about the probability of the disease eventually defining who I am. My first question is this, How is this disease defined? is it a "terminal disease?" or is it a progressive degenerate disease with no known cure?" Will I die from this disease if not by accident and if so when and how long will it take? One might think that this could be a bit indulgent or perhaps too morbid, but how does one cope with day to day activities with the view of medium to long term plans. Sure I can be "in the moment" and enjoy the time that passes each day and even achieve some sense of self-fulfilment and happiness as I would without this disease. However, I surely can't just think about the day alone? surely part of my activity is to be part of creating a future and securing a tomorrow of sorts? This would be practical as well as responsible but, how does one do this without knowing the answers to my previous questions. Yes of course I must continue to contribute and be useful, but to what degree? Ok so here are some reactions I have heard from friends as well as strangers. I have been told that we are all going to die anyway so what's the difference? other than the fact that someone told me what will cause my death, most responded to say that they could be dead before me and so planning the future is something we do automatically no matter, no one can predict what will happen and when. I was also told that I moan too much? This was said to me because I work a full day of very physical work and at the end of the day I really battle with pains, so when was asked how my day was I had to say how I felt. I have also heard that I am a bit moody and not very social. Maybe I am just being too philosophical? but too my mind and considering that my life has changed quite drastically I would not be surprised if people saw me this way. I am not as social as I used to be, neither am I as jovial or spirited as I used to be. I do moan more than I ever have..."if one refers to it as moaning" all of these comments are quite true but not in context of what I am going through. I find myself very much alone, between groups of ignorant through to the hopefuls. I have been told that there will be a cure any day soon so I should not worry, I have been told that the disease is no longer a terminal disease and that with proper management patients have gone on to lead fairly normal healthy lives. I have been told many of the side effects I am going through are perhaps psychosomatic. So if I am unable to be 'hopeful' then I should try 'Ignorance' if I cant do this then it must be a psychological problem for which I can get help......everything at the end of it all is just a veil, not mine, but for anyone that is associated to me. It is easier to deal with daily topics and recognise behaviours in people that are more common and accepting than complicated issues which are full of questions and unknowns. I am a complex person, I do prefer to know 'more' rather than 'less'. I have had the same approach to things all my life and that is because it is what I know and understand, it is how "I" function. Any plans or challenges I am ever faced with are handled in exactly the same manner......I first gather as much information as I can, then I strategies and then put things to action, if the plan does not work I don't change the whole plan but simply parts of it. I will be happy with whatever outcome as long as I have done all of these things to the best of "my" ability. So? how can I plan anything if I don't have a clear idea of what I am dealing with? how can anyone move in any direction if there are simply no sign boards anywhere? I have lived my whole life, well as long as can remember, doing for others, it always gave me a great sense of purpose to serve and provide and to be available for others. Now that I am unable to do this I have found myself more alone than ever. The only way for me to participate in a normal social environment is to become what I am not....well again. I will never be well again.........I can deal with this but I feel it is too difficult for those around me to, and the only reason why I feel this to be true is because I don't have any obvious physical signs of my illness. In fact I still look very healthy and well. This is the paradox..........If the signs were obvious then there would be a natural common understanding and no need for complex mental arithmetic to figure out how to respond or behave. I can function like anyone else out there, I am actually very active but.......and here is a big BUT, I am not well, and this disease is getting the better of me, very slowly but still making it's presence felt. I am reminded of it everyday and I feel it everyday, every time I walk to my car and get inside and have to take a moment to catch my breath, every night I struggle to sleep and battle with pains, every morning when I cough and splutter like a fifty year old beetle starting up in cold weather. Once I get going I am ok for the day. So I have decided to not tell anyone any more about my disease, I have also decided to see a councillor and to somehow find a way to deal with the battle of the mind. I have also decided to do what is right for me and this part is going to be tough. It has taken me two years to find out that unless one has a significant other who will understand and help you through the process there is not going to be another who will champion for you and take up the cause. Perhaps it is just a natural way of separating the sick from those who can still contribute. A heard of buffalo only run a fast as the slowest of the heard when being chased by a predator...and this is because there is no need to do more than what is required. They don't panic, they stick together and they also know that the slowest of the heard will be sacrificed. This is completely natural and this action itself contributes to the herds survival. Perhaps all sickly people who do not have someone to care for them should be able to go to an island somewhere where we can all moan together ha ha. Hey I am joking......but I do need to stop worrying about what people think and just stay away or say nothing about it further. One thing is for sure though...I am not going to pretend to be well so that everyone else can become more comfortable with me .......they need to get over it I think.

Deer in the headlights

That's exactly how I have been feeling recently, I looked into the light and suddenly found myself frozen in my path not knowing where I was going or at what I was supposed to be doing? It's not fear or insecurity but, rather just an emptiness, like slowly slipping into into an abyss, a void or black hole. Every effort I make seems to lose it's structure and start slowly melting like butter on a hot day. I had plans, concrete ones, and then they were shattered, and so I made new plans, based mostly on faith and a belief in the possibility that I might just get a break. These plans began to seem more and more unrealistic and so I regrouped and began to assemble the bits and pieces of what I had left and, like a Lego set created the simplest of ideas that covered everything I could possibly handle. This has also turned into the most fragile of hopes I could imagine. What to do next? I could just stand here and stare into the light and wait for the shot I guess? I know though that I must move but, where? in what direction? what am I running into? Running into things that don't agree is something I would love to avoid for a while. When I arrived in Cape Town I felt so privileged and honoured to be living here. It is the beauty and easy access to everything. There seems to be a wealth of opportunity to explore and ideal for a person in my situation. Art and photography are the interests and activities I want to explore and enjoy more than anything else. I Have taken so many picture and studied and researched so many ways to improve my quality. I had 11 photos developed recently and had them mounted with boarders placed around them so they are prepared for framing. When they were ready I picked them up from the framers and had them in my car with me. I happened to meet with someone I knew and decided to show them. The person bought five of the eleven outright. It covered my cost and made a little profit and still have 6 left to sell. So why can't I just do this full time. Why cant I do what I love to do? Surely doing something one loves to do with passion and talent can survive off it? NO, here I am working 12 hours a day, 6 to 7 days a week on my knees on a construction site, breathing in the dusty chalky air, with echoing loud voices bouncing off the walls interrupted by the piercing, ripping din of grinders, drills and an assortment of power tools. Don't get me wrong please, I sometimes stand back and look at my work and feel a real sense of accomplishment. However, once I have managed to claw my way through the day on pain meds and sheer tenacity, I get home only to have to suffer a night of sleepless restless pain and anguish. It sounds dramatic, but I cannot explain otherwise what this is doing to me. My body aches from my feet to my knuckles in my fingers. I want to get a surgical knife and remove the demon that lives in a little corner of my gut. The nausea is just not enough to be relieved by a good vomiting release, only present enough to feel like you are drifting in a dingy on a gentle swaying swell. I leopard crawl though my bedding the entire night as if I have an enemy standing within meters of the killing zone, sweating and struggling to breath. At 5am I get up and have to first sit on my bed with my feet on the floor, to gather myself and then slowly check if everything will slot into the right position, and then the violent coughing, dry hacking, heaving coughing that makes my eyes and veins in my neck want to explode, white lights jump and spin in my crumpled vision until the lungs have released there precious content. The dark green thick mucus which is obviously from and infection deep within the lungs is almost a relief, because until it is rejected the coughing goes on. Move around a bit, get loose, take a few deep breaths, eat a little, just enough to take my medication but not so that the nausea and stomach will react to. Two Myprodols and off we go. A few more pain tablets through the day to get through the day and once home begin the agonising experience all over again, maybe I won't sweat as much tonight? maybe a shouldn't eat, then I wont feel so nauseas? Perhaps if I get into bed early and just read I will simply nod off and wake up at sunrise? Perhaps? Had to go to hospital today to have a Gastroscopy done. This is a method of inserting a camera down the oesophagus to inspect the inside of the stomach. Not pleasant at all, but does not last long. The result, Gastric reflux disease (G.E.R.D) and Gastritis. Just something more to have to deal with, but hey you would never know if you met me. I will do everything possible to keep it all to myself, I will put on my best tough guy attitude, I don't want you to think that this is going to be a problem, I will do your job for you and try not to let you down. If I just closed my eyes for a while to let my eyes adjust to the dark, perhaps when I open them again I will be able to see the way? but can I afford to take the chance and stand still and be calm for a bit or is there something sinister waiting behind the light?

Ignorance

ignorance is where someone or something is uninformed. This should not be confused with being unintelligent, as one's level of intelligence and level of education or general awareness are not the same. The word "Ignorant" is an adjective describing a person in the state of being unaware. ...

I know this can be quite a touchy topic but, please bare with me. The picture I use as my profile on facebook is a painting I did in the middle of the year, and the theme I chose was"ignorance" You know the old cliché about ostriges with their heads in the sand? They don't actually do that you know, it just looks like it from a distance when they stick their heads in the dugout of there nest to sort the eggs or something like that. It is something we all do, sometimes consciously and sometimes subconsciously, but we all are guilty. I bet there have been times when you answered by saying "oh really? I never knew! when what you really meant was that you did know and it just was not important enough for you to have to deal with and so you called on ignorance to cover your ass. A cop pulls you over for speeding and you say "really? I did not see the sign.........I am not familiar with the area" or some rubbish you quickly had to make up so you did not have to be held accountable...I can go on but, you get the drift. The worst kind of ignorance is the type which you Know but "choose" not to address it"

I have met so many people who have had to go through some terrible trauma in their lives while they were perhaps quite young and it left them scarred to the point that it effects the way they function in the world as adults. Not dealing with the trauma and allowing it to control ones life so negatively is a form of ignorance...if you bury your head in the sand then it will no longer exist, but wait! your ass is exposed and everyone can see it except you. I realised later in my life that my issues were negatively effecting my daily functioning especially with members of society, I felt insecure and vulnerable too often for it to be considered normal. When I had my children I realised that I had to change the existing behaviour and so I went to counceling......oh the other reason why I went was because it was strongly suggested I go..ha ha, I dare not mention from where that wonderful advice came from. It was one of the best things I ever did, I still had to wade through a number of very strange councelors to find the right one but when I did, it took no time at all to see the light. I had to stop pretending that I did not have a problem, stop being so ignorant and deal with whatever I had to to become something better. I choose to know as much as possible now, google helps me a lot with that. If I can't answer I go look it up. Before I get into an argument, I check my facts. What I am trying to say is that it is so much better to deal with things as they occure than to simply ignore them. If one ignores the issue it just hangs around, what's worse is that our immaginations get hold of them and then..oh boy..wait till you hear the end of that version? When one confronts the issue it is never as tragic as one was led to believe, the air seems lighter and clearer and letting go is easy. My Illness shocked me in many ways. I ignored things in my past and buried my head in the sand while my ass was sticking right out there. I put myself at risk and ended up have to pay the dearest price for it. Yes I blame ignorance, ignorance about smoking, about what we eat, about work and worst of all stress. Yes, to my mind stress is the number one killer. We slog through days, ignoring our children, our spouses, our pets......we plot a singular path and travel it everyday till the rut we created is so deep we can't even see out of it any more. We say things like "when I get that then it will be better" when this or that happens then things will change" but what if it does not? did one not realise that ones life is happening right now and yet our sights or vision is set on long distance that everything in the current is out of focus.

Life is terribly fragile and when I sit and look out at all the beauty and chat with my children about their plans then I want to really live a little longer......I feel a desperate need to try and find a way to live as long as I possibly can and then the reality shows the errors of my ignorance. I could expound on this topic but hope you will really start trying to live and recognise where you are right now and be present for yourself and all those that surround you with love. Oh by the very way...My beautiful daughter had her second baby today....a boy this time......I think her husband is going to be well stoked because he is a big boy and maybe just maybe will play for the sharks when he is bigger.

Ok good I am going to try and sleep now...something that does not come that naturally any more because of the cortosone. Take care of yourselves.

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.