All who know me are well aware that I have had crohns for years, love music and art, and I am a political animal. I would hope those who know me believe I am someone who believes in justice, support for the sick and vulnerable, and despise profit and share values above people and their lives.
I want to discuss an issue that I firmly believe is a factor in many of the lives touched by #IBD, the issue of mental health and stress factors.
Speaking personally, on top of my ill health, I have experienced peaks and troughs of moods, emotions and mind-set. I don't think I am alone.
It is easy for us all to say 'we are low' or 'down in the dumps', I have done it myself, and continue to use this terminology. In reality I know that deep down it is not simple 'feeling low', I believe my physical state has led to many crises which have involved degrees of Depression. I have 'looked at myself in the mirror', wondered how life will develop; held and still hold fears of a loneliness and a future alone with Crohns. I don't imagine I am unique.
Crohns and its symptoms, the diagnostic techniques, the manner of life and fear of living with the condition, all form the 'building blocks' constructing this wall of depression.
I had and still have low self esteem, struggle with it and probably always will.
I regularly get depressed at dealing with crohns on my own, with no one to allow to take the load, offer reassurance and love. It is a constant 'companion', I know this is wholly the wrong term, but think it apt!
In recent times, to add to the mental problems crohns has brought me, the fear of the future in a 'shrinking welfare state', with the threat of being without state benefit, income or security in anyway, has reared its head.
I don't mind admitting that i do fear the postal delivery.
I have much stress at the stigmatizing of all of us who are sick or disabled and getting state support, as scroungers, not genuine or 'swinging the lead'! This appears to be a campaign run by the government, aided and abetted by the media, and sadly, many people have indulged in the 'mob rule'.
I know that personally this is stressful and causing me depression.
So, having established my life as one with the illness and hidden mental illness, added to stress of many issues, I merely blog this on a personal level that I see this as being relevant in IBD.
As I usually state, this blog is a personal blog based on personal experience and fears.
The blog is not aimed at suggesting all sufferers will be the same, feel the same or have the same views. Indeed, if people who totally disagree with me reading this, are prepared to comment, i welcome that input.
I do also want to add that today's blog is not aimed at encouraging sympathy for me or making my situation typical. As I have said before, its my life and experience. I happen to think other IBD sufferers have problems with depression too.
As always, I welcome any feedback favourable or otherwise.
Thursday, 24 May 2012
Monday, 21 May 2012
Osteoporosis
Having crohns disease for most of my life has brought to me the knowledge that there is considerable need for medication to treat chronic conditions. Equally though, it has enlightened me to the fact that, despite medical supervision and experience, some additional conditions can come our way as crohns patients.
We are all aware of the effects and benefits of steroids, we also know of the complications and issues that emerge if things can go wrong. As with many of the medications we take.
I want to deal with one aspect of a secondary condition crohns or medications can help create.
I was unfortunate in the fact that i was young when diagnosed, this has led to a long time with malabsorption and intermittent steroids.
After all the problems with my gut, poor absorption and repeated anemia and mineral deficiencies, in 1993 i suddenly found out i had osteoporosis. I imagine it is an obvious consequence that Vitamin D and Calcium might become a deficiency, it seems logical now, unfortunately the prevention wasn't addressed, as a consequence i fractured a vertebrae .
I had been experiencing very odd symptoms, hands and face tingling, repeatedly feeling spasm type symptoms in my hands. I had no idea what was happening. Neither did my my GP who did bloods but thought it was symptoms of hyper ventilating.
Sadly, by the time the blood results were analysed I was on a ward in hospital lying flat on my back.
I can only say that the experience of turning over in my own bed and cracking a vertebrae is an 'interesting and very painful 'experience!
As soon as i was admitted a spinal x-ray showed the crack, and i was told to lie flat.
In addition to the spinal problem, i was advised i was having severe tetany which feels like lockjaw i am told. Not fun!
The medics decided they needed to get calcium into my veins pretty quickly, as it appeared to be almost non existent in my bloods!
It was an interesting and frightening time, one i wouldn't wish on any one.
Eventually, after a lengthy stay and treatment, the medics tested me for permanent spinal nerve damage. Fortunately the results showed no nerve damage, but i continue to require treatment to improve the bone density.
I suffer from the pain in my back from the fracture, and i imagine this will always be so.
Today's blog is intended to show some of the negative effects treatment and/or poor absorption can have for crohns patients. It is a suitable example of how we should all be aware of the need for regular blood tests and the effects of how our crohns creates problems as a result of malabsorption.
It is my experience, mine alone, is not typical, nor does it follow that all sufferers might develop osteoporosis.
This has been one of the secondary issues that having crohns has affected me. I have others, i am sure i am with many other crohnies in that.
We are all aware of the effects and benefits of steroids, we also know of the complications and issues that emerge if things can go wrong. As with many of the medications we take.
I want to deal with one aspect of a secondary condition crohns or medications can help create.
I was unfortunate in the fact that i was young when diagnosed, this has led to a long time with malabsorption and intermittent steroids.
After all the problems with my gut, poor absorption and repeated anemia and mineral deficiencies, in 1993 i suddenly found out i had osteoporosis. I imagine it is an obvious consequence that Vitamin D and Calcium might become a deficiency, it seems logical now, unfortunately the prevention wasn't addressed, as a consequence i fractured a vertebrae .
I had been experiencing very odd symptoms, hands and face tingling, repeatedly feeling spasm type symptoms in my hands. I had no idea what was happening. Neither did my my GP who did bloods but thought it was symptoms of hyper ventilating.
Sadly, by the time the blood results were analysed I was on a ward in hospital lying flat on my back.
I can only say that the experience of turning over in my own bed and cracking a vertebrae is an 'interesting and very painful 'experience!
As soon as i was admitted a spinal x-ray showed the crack, and i was told to lie flat.
In addition to the spinal problem, i was advised i was having severe tetany which feels like lockjaw i am told. Not fun!
The medics decided they needed to get calcium into my veins pretty quickly, as it appeared to be almost non existent in my bloods!
It was an interesting and frightening time, one i wouldn't wish on any one.
Eventually, after a lengthy stay and treatment, the medics tested me for permanent spinal nerve damage. Fortunately the results showed no nerve damage, but i continue to require treatment to improve the bone density.
I suffer from the pain in my back from the fracture, and i imagine this will always be so.
Today's blog is intended to show some of the negative effects treatment and/or poor absorption can have for crohns patients. It is a suitable example of how we should all be aware of the need for regular blood tests and the effects of how our crohns creates problems as a result of malabsorption.
It is my experience, mine alone, is not typical, nor does it follow that all sufferers might develop osteoporosis.
This has been one of the secondary issues that having crohns has affected me. I have others, i am sure i am with many other crohnies in that.
Saturday, 19 May 2012
World IBD Day 19 May 2012
Today is World IBD Day, to all touched in some way by any of the illnesses incorporated in Inflammatory Bowel Disease, an important day to highlight them.
It is a lifetime since I was diagnosed, I am not stupid enough to say progress has not been made in many aspects of these conditions. Of course it has. Drugs, treatments, aftercare and knowledge has advanced.
The elusive breakthrough of cure still remains. As long as this is needed for all of the illnesses, awareness must be the aim.
IBD is often a 'poor relation' and it needs all it can to highlight the devastating effects on bodies, minds and spirits of so many people, their families and friends.
If people read this blog and are not aware of some of the effects IBD has , many young people as sufferers, i would ask them to take time to investigate, google or simply ask via the many groups on Social Media and the web.
These conditions are chronic, painful and everlasting.
Families suffer with their loved ones, despairing of the illness, treament and surgery when needed.
I hope in my lifetime to see an eventual cure and ability to stop IBD in its tracks!
I live in hope not merely for myself, but for all sufferers, current and in the future.
I know what the condition can do to us all.
It is a lifetime since I was diagnosed, I am not stupid enough to say progress has not been made in many aspects of these conditions. Of course it has. Drugs, treatments, aftercare and knowledge has advanced.
The elusive breakthrough of cure still remains. As long as this is needed for all of the illnesses, awareness must be the aim.
IBD is often a 'poor relation' and it needs all it can to highlight the devastating effects on bodies, minds and spirits of so many people, their families and friends.
If people read this blog and are not aware of some of the effects IBD has , many young people as sufferers, i would ask them to take time to investigate, google or simply ask via the many groups on Social Media and the web.
These conditions are chronic, painful and everlasting.
Families suffer with their loved ones, despairing of the illness, treament and surgery when needed.
I hope in my lifetime to see an eventual cure and ability to stop IBD in its tracks!
I live in hope not merely for myself, but for all sufferers, current and in the future.
I know what the condition can do to us all.
Thursday, 17 May 2012
Crohns: Stoma
I just want to add that as with every blog up to now it is totally from my own experience, outlook, fear and life. I wouldn't want anyone to feel that their lives will be anything like mine, either in relation to the crohns or anything else. So, if they don't agree with anything I say, its just my view and experience.
I mentioned in the last blog 2 days ago of life and experiencing it to the full with medical assistance, through the period when all of us are young, positive, fearless and carefree. i never blogged yesterday, you can get too much of a good thing!!
So, as i stated in that blog, life was sweet until, it went sour again. It went sour in the sense that the 'drugs didn't work', severe symptoms and pain returned and investigations led to the surgeon walking up to me in my hospital bed with another consent form.
I looked at the consent form which as usual gave the surgeon the capacity to determine on how to proceed immediately he saw the damage of the gut. I signed, the nursing staff then got me prepared for surgery.
Surgery occurred, i recall waking up in the haze of recovery, back to the ward and then pain control administered. Recovering from surgery and the medication is again a personal thing. Many have problems with pain relief, some will arrive at a stage of reasonable alertness more rapidly.
All i can recall is that in what seemed a hazy drug assisted alertness I was told the surgeon had done his work. The surgeon's work was seeing my bowel was like tissue paper, diseased and in a very poor state. As a result I had a little friend stitched to my abdomen with a bag attached to it. This little friend was the outcome i had been concerned about, and here it was. I had a stoma, which is basically intestine which allows the gut to detour, take a short cut and deposit products into the bag.
So, after the initial aftermath, stoma nurse, booklets and a 'chat' with someone else with a stoma, recovery begin, a process of recuperation meant i also had to deal with the stoma.
I think i coped and cope well with the day to day requirements having a stoma requires. i had problems, leaks, mishaps and all the other things that come from the existence of a stoma and bag.
It was hard for me to get used to having a receptacle for body waste attached to me. Its odd when you have little or no control of its activities.
So, having dealt with the problems of practicalities and problems of them, the next thing is how are you seen in respect of relationships and generally by other people.
There's no rule to these things, no stock line about 'this is what you do to help, adapt and involve people in your relationships'.Well, there wasn't at the time anyway!
I can't really express the difficulties and mental somersaults i had with the stoma and relationships. I stressed about how i felt unfit, no pun intended, to be part of one, because mentally it felt hard to deal with who i was then. I was 25, but my attitude to myself had changed. It shouldn't have changed, but i am a flawed human with a flawed human brain. I stressed about everything to do with a relationship, the physical and practical problem of having a bag of stuff that shouldn't be there, and being intimate and close with someone. How they reacted, if they said the 'right things' to make me feel better, more 'alone' with myself. Whether I was good enough, in all definitions of that phrase.
Having the stoma then, at that time of my life, created mental and physical problems with relationships, that, in all honesty, to this day remain to some extent.
I have 'allowed' myself to reveal my physical disadvantage, in my mind or in reality, from the stoma. i don't really need to go into the raw details of life, and many other people have successfully lived life to the full, but for one reason or another it got in the way. It got in the way in respect of actual physical closeness, but importantly in my head.
Esteem is a shifting thing. we can present as in total control, full of life, ready to tackle everything. In reality, we could be on the edge, struggling, self doubt and despair a constant companion. I could be laughing on the outside and cracking up internally. The shield i have referred to would be used to present a content, happy demeanour while protecting me from the reality of how i was feeling.
Over time i suppose with experiences ensuring little change, for one reason or another, outwardly I portrayed a sense of acceptance and contentment.
I know that there are no physical obstacles to living a happy loving life with an understanding and sharing partner. I know this, so i don't need to have advice or suggestions of a course of living.
I also realise that the reason i have reached this point in my life on my own might not only be as a result of the stoma or indeed the Crohns, it could simply be me. I think my experiences tell me otherwise, because i was there though.
So, having Crohns at 24 led to me to having Crohns at 25 with a stoma. As i have explained, its my experience, and from my experience, this event made my position different and difficult. I know the stoma the bag and its 'contents' have been factors, because I was there.
Yet, as i have said many times, this is my experience, my life. Its how things have panned out for me, with so many variables, me , partners, events etc. I don't want anyone with a stoma to read this negatively as if this is a template for their future. Far from it, it is merely me trying to be as honest and open about how having a stoma affected me, it might even provide advice and comfort.
The comfort and advice being that i think as much goes on in the head trying to deal with new relationships or old ones for that matter, as the physicalities. It did for me, and as I say my life is the only one i can base my blog on.
As always, thankyou for taking the time to read this. It is a window of sorts, into my body and mind
I mentioned in the last blog 2 days ago of life and experiencing it to the full with medical assistance, through the period when all of us are young, positive, fearless and carefree. i never blogged yesterday, you can get too much of a good thing!!
So, as i stated in that blog, life was sweet until, it went sour again. It went sour in the sense that the 'drugs didn't work', severe symptoms and pain returned and investigations led to the surgeon walking up to me in my hospital bed with another consent form.
I looked at the consent form which as usual gave the surgeon the capacity to determine on how to proceed immediately he saw the damage of the gut. I signed, the nursing staff then got me prepared for surgery.
Surgery occurred, i recall waking up in the haze of recovery, back to the ward and then pain control administered. Recovering from surgery and the medication is again a personal thing. Many have problems with pain relief, some will arrive at a stage of reasonable alertness more rapidly.
All i can recall is that in what seemed a hazy drug assisted alertness I was told the surgeon had done his work. The surgeon's work was seeing my bowel was like tissue paper, diseased and in a very poor state. As a result I had a little friend stitched to my abdomen with a bag attached to it. This little friend was the outcome i had been concerned about, and here it was. I had a stoma, which is basically intestine which allows the gut to detour, take a short cut and deposit products into the bag.
So, after the initial aftermath, stoma nurse, booklets and a 'chat' with someone else with a stoma, recovery begin, a process of recuperation meant i also had to deal with the stoma.
I think i coped and cope well with the day to day requirements having a stoma requires. i had problems, leaks, mishaps and all the other things that come from the existence of a stoma and bag.
It was hard for me to get used to having a receptacle for body waste attached to me. Its odd when you have little or no control of its activities.
So, having dealt with the problems of practicalities and problems of them, the next thing is how are you seen in respect of relationships and generally by other people.
There's no rule to these things, no stock line about 'this is what you do to help, adapt and involve people in your relationships'.Well, there wasn't at the time anyway!
I can't really express the difficulties and mental somersaults i had with the stoma and relationships. I stressed about how i felt unfit, no pun intended, to be part of one, because mentally it felt hard to deal with who i was then. I was 25, but my attitude to myself had changed. It shouldn't have changed, but i am a flawed human with a flawed human brain. I stressed about everything to do with a relationship, the physical and practical problem of having a bag of stuff that shouldn't be there, and being intimate and close with someone. How they reacted, if they said the 'right things' to make me feel better, more 'alone' with myself. Whether I was good enough, in all definitions of that phrase.
Having the stoma then, at that time of my life, created mental and physical problems with relationships, that, in all honesty, to this day remain to some extent.
I have 'allowed' myself to reveal my physical disadvantage, in my mind or in reality, from the stoma. i don't really need to go into the raw details of life, and many other people have successfully lived life to the full, but for one reason or another it got in the way. It got in the way in respect of actual physical closeness, but importantly in my head.
Esteem is a shifting thing. we can present as in total control, full of life, ready to tackle everything. In reality, we could be on the edge, struggling, self doubt and despair a constant companion. I could be laughing on the outside and cracking up internally. The shield i have referred to would be used to present a content, happy demeanour while protecting me from the reality of how i was feeling.
Over time i suppose with experiences ensuring little change, for one reason or another, outwardly I portrayed a sense of acceptance and contentment.
I know that there are no physical obstacles to living a happy loving life with an understanding and sharing partner. I know this, so i don't need to have advice or suggestions of a course of living.
I also realise that the reason i have reached this point in my life on my own might not only be as a result of the stoma or indeed the Crohns, it could simply be me. I think my experiences tell me otherwise, because i was there though.
So, having Crohns at 24 led to me to having Crohns at 25 with a stoma. As i have explained, its my experience, and from my experience, this event made my position different and difficult. I know the stoma the bag and its 'contents' have been factors, because I was there.
Yet, as i have said many times, this is my experience, my life. Its how things have panned out for me, with so many variables, me , partners, events etc. I don't want anyone with a stoma to read this negatively as if this is a template for their future. Far from it, it is merely me trying to be as honest and open about how having a stoma affected me, it might even provide advice and comfort.
The comfort and advice being that i think as much goes on in the head trying to deal with new relationships or old ones for that matter, as the physicalities. It did for me, and as I say my life is the only one i can base my blog on.
As always, thankyou for taking the time to read this. It is a window of sorts, into my body and mind
Tuesday, 15 May 2012
Young, Free and Where's the Nearest Toilet?
Being young is a joy, I can just about recall it! That feeling that you can do anything, experience everything, burn the candle at both ends and not suffer in anyway! Young and optimistic, carefree and blase about what the future holds. Aware of the effects of having Crohns and the consquences in the event of a problem didn't matter. When you're young, you're fearless and think you can deal with anything. It won't happen anyway, when you're young!
It was a relief to me in my late teens, to think i'd avoided another surgery, another bullet heading my way had miraculously been deflected by steroids.
Why not enjoy and make the most of it?
So as you do, you live life to the full, i was going to participate in all the things and experiences my work friends and friends generally did.
Travel around the country in the forlorn hope that my football team might cheer us up on a trip back from Torquay or Brighton, or wherever we travelled to for our 90 minutes of footballing brilliance, which usually was far from brilliant and was miserable and dour. It wasn't always about the football, which is a good job really! It was the craic of a group of people, male and female , daft enough to commit ourselves to the Tigers rain or shine, usually rain. It was a pre match community enjoying a drink and being committed to a cause. Commited in those days could have several definitions!
A pre match pint and meal, a standard football pie in the ground.
Football was a small amount of 'enjoyment' but was very important as a focal point.
Much of the rest was exactly what young people got up to at that time in the late 70' through to the 80's.
This was all so far from being stuck in a hospital ward with a bedpan, drips and catheters. Being dependent on nursing staff for what seemed like every possible thing, dignity in tatters, handing yourself over to them!
Why not enjoy it? Why not make the most of travelling, living and sharing 'everything' with friends, thriving on freedom? Except it was never quite 'everything'
'Everything' didn't include never eating anything before travelling for fear of the crohns rearing its head and desperately needing to use the toilet, the embarrassment , abdominal cramp and anxiety!
'Everything didn't include consciously taking note of the location and quality of toilet facilities, before and during the football. This was only a diluted, censored version of 'everything'
'Everything' didn't include a number of things that sure as hell are not going to hell you or anyone else about!.
I could keep the rest to myself, unless somehow my embarrassment or discomfort became obvious.
So living life to the full meant exactly what it said on the tin. Not just in this area but generally, socialising , meeting people , all the other things that were and will remain private.
Yet, despite my desire to be carefree and blase, no matter what i was getting up to, Crohns was always with me, getting to me, reminding me I can't enjoy this totally, i must worry, get anxious about many things, a lot of things Crohns sufferers know only too well about.
Nevertheless, i was young, the candle still burnt away, and i often had to deal with some of the 'rough' bits with those warm, enjoyable 'smooth' bits that we all need, young and old.
I continued with certain medications, still managing to put the thought of a scalpel or surgeon to the back of my mind.
It was a great time despite all the negatives Crohns did to me, and there were quite a few. Life was sweet and full, i even allowed myself to treat Crohns as an irritating imposter.
I can always look back and say they were great enjoyable carefree times, with quite a few less enjoyable experiences mingled in.
Crohns won't take that time away from me, whetever it does now or in the future, it's mine. It's mine, will always be mine, no matter whether it was a period of carefree 'calm' before a 'storm'
It was a relief to me in my late teens, to think i'd avoided another surgery, another bullet heading my way had miraculously been deflected by steroids.
Why not enjoy and make the most of it?
So as you do, you live life to the full, i was going to participate in all the things and experiences my work friends and friends generally did.
Travel around the country in the forlorn hope that my football team might cheer us up on a trip back from Torquay or Brighton, or wherever we travelled to for our 90 minutes of footballing brilliance, which usually was far from brilliant and was miserable and dour. It wasn't always about the football, which is a good job really! It was the craic of a group of people, male and female , daft enough to commit ourselves to the Tigers rain or shine, usually rain. It was a pre match community enjoying a drink and being committed to a cause. Commited in those days could have several definitions!
A pre match pint and meal, a standard football pie in the ground.
Football was a small amount of 'enjoyment' but was very important as a focal point.
Much of the rest was exactly what young people got up to at that time in the late 70' through to the 80's.
This was all so far from being stuck in a hospital ward with a bedpan, drips and catheters. Being dependent on nursing staff for what seemed like every possible thing, dignity in tatters, handing yourself over to them!
Why not enjoy it? Why not make the most of travelling, living and sharing 'everything' with friends, thriving on freedom? Except it was never quite 'everything'
'Everything' didn't include never eating anything before travelling for fear of the crohns rearing its head and desperately needing to use the toilet, the embarrassment , abdominal cramp and anxiety!
'Everything didn't include consciously taking note of the location and quality of toilet facilities, before and during the football. This was only a diluted, censored version of 'everything'
'Everything' didn't include a number of things that sure as hell are not going to hell you or anyone else about!.
I could keep the rest to myself, unless somehow my embarrassment or discomfort became obvious.
So living life to the full meant exactly what it said on the tin. Not just in this area but generally, socialising , meeting people , all the other things that were and will remain private.
Yet, despite my desire to be carefree and blase, no matter what i was getting up to, Crohns was always with me, getting to me, reminding me I can't enjoy this totally, i must worry, get anxious about many things, a lot of things Crohns sufferers know only too well about.
Nevertheless, i was young, the candle still burnt away, and i often had to deal with some of the 'rough' bits with those warm, enjoyable 'smooth' bits that we all need, young and old.
I continued with certain medications, still managing to put the thought of a scalpel or surgeon to the back of my mind.
It was a great time despite all the negatives Crohns did to me, and there were quite a few. Life was sweet and full, i even allowed myself to treat Crohns as an irritating imposter.
I can always look back and say they were great enjoyable carefree times, with quite a few less enjoyable experiences mingled in.
Crohns won't take that time away from me, whetever it does now or in the future, it's mine. It's mine, will always be mine, no matter whether it was a period of carefree 'calm' before a 'storm'
Monday, 14 May 2012
Crohns- The Right Decisions at the Right times
In the first years of crohns, as with all conditions, it is often the role of the patient to take on the pain and suffering, deal with the tests, and endure any treatment whether medical or physical.
I was no different in 1976 through the first period. It wasn't an advantage to be young and naive, inexpectant of what was to occur. It was a naivety, for me, leaving me afraid and unaware of what was and is happening.
As this was so long back, I hope such experiences are few and far between. It would be wonderful to imagine that most young people who develop the symptoms and have to undergo tests, etc. are 'coached' through this difficult time by medical professions and trained staff in this field. Perhaps some feedback to this could confirm one way or another?
When you consider that at such a young age we are not even able to consent to surgery, which is actually consent to letting surgeons do what they need when they get in there!
I never really considered it, but that must have been such an enormous source of stress and anxiety for my parents.
After my surgery, the first one, bowel resection with added septicaemia and deep vein thrombosis thrown in for good measure, I then attempted to re-construct a life as a schoolboy preparing for O level exams, remember them?
All of the educational advisers suggested holding me back a year, in order to fulfil my potential and achieve the resuts i should warrant. Alas, i knew better and went ahead with exams, achieving grades of acceptability, rather than of note. My intention was to 'catch up' in the 6th form.
So, when out of the blue, a friend suggested a job working full time was available, i stupidly and short-sightedly went ahead, got interviewed, and all the plans changed.
If i would offer one piece of advice to anyone in a similar situation now, it's a lifetime is a long time, don't jump in not thinking long term, consider all options, consider the stress of work versus study and recuperation. If after consideration, the same conclusion is reached, that's cool.
Needless to say, taking on work, the daily slog and hidden pressure of the effects of crohns, meant a big flare up occurred. A flare up which didn't require surgery but what would now probably be seen as intensive high doses of intravenous steroid. This is a treatment i personally hold responsible for a number of secondary problems, osteoporosis etc.,
It is amazing how you see the world at such a young age and stuck in hospital. I recall feeling fortunate and elated the treatment was strong, made me feel better, and importantly meant no surgery just now. I knew i didn't want more at that time.
That's where stupidity, naivety and false optimism gets you!
In your teens you want to go out to 'play' do the things your friends are up to and enjoy the things they 'enjoy'. I am assuming the terms 'play' and 'enjoy' are delivering different images to things like playing on roundabouts and more innocent pastimes. At 17 going on 18 you know you have and can suffer, but what the hell! life is living!
So my early years with my acquaintance Crohns had me as low as i could get, up to a level which was significantly better than that but not the same as before, and out on the town enjoying what 18 year olds plus like to do!
Like most things in life, decisions can be taken which seem easy and correct at the time. Decisions that are taken in isolation, because we humans are not able to see into the future!
My future was that i needed significant surgery which resulted in a colostomy by the time i was 25. i intend to focus the effects of having a stoma in a later blog.
I was no different in 1976 through the first period. It wasn't an advantage to be young and naive, inexpectant of what was to occur. It was a naivety, for me, leaving me afraid and unaware of what was and is happening.
As this was so long back, I hope such experiences are few and far between. It would be wonderful to imagine that most young people who develop the symptoms and have to undergo tests, etc. are 'coached' through this difficult time by medical professions and trained staff in this field. Perhaps some feedback to this could confirm one way or another?
When you consider that at such a young age we are not even able to consent to surgery, which is actually consent to letting surgeons do what they need when they get in there!
I never really considered it, but that must have been such an enormous source of stress and anxiety for my parents.
After my surgery, the first one, bowel resection with added septicaemia and deep vein thrombosis thrown in for good measure, I then attempted to re-construct a life as a schoolboy preparing for O level exams, remember them?
All of the educational advisers suggested holding me back a year, in order to fulfil my potential and achieve the resuts i should warrant. Alas, i knew better and went ahead with exams, achieving grades of acceptability, rather than of note. My intention was to 'catch up' in the 6th form.
So, when out of the blue, a friend suggested a job working full time was available, i stupidly and short-sightedly went ahead, got interviewed, and all the plans changed.
If i would offer one piece of advice to anyone in a similar situation now, it's a lifetime is a long time, don't jump in not thinking long term, consider all options, consider the stress of work versus study and recuperation. If after consideration, the same conclusion is reached, that's cool.
Needless to say, taking on work, the daily slog and hidden pressure of the effects of crohns, meant a big flare up occurred. A flare up which didn't require surgery but what would now probably be seen as intensive high doses of intravenous steroid. This is a treatment i personally hold responsible for a number of secondary problems, osteoporosis etc.,
It is amazing how you see the world at such a young age and stuck in hospital. I recall feeling fortunate and elated the treatment was strong, made me feel better, and importantly meant no surgery just now. I knew i didn't want more at that time.
That's where stupidity, naivety and false optimism gets you!
In your teens you want to go out to 'play' do the things your friends are up to and enjoy the things they 'enjoy'. I am assuming the terms 'play' and 'enjoy' are delivering different images to things like playing on roundabouts and more innocent pastimes. At 17 going on 18 you know you have and can suffer, but what the hell! life is living!
So my early years with my acquaintance Crohns had me as low as i could get, up to a level which was significantly better than that but not the same as before, and out on the town enjoying what 18 year olds plus like to do!
Like most things in life, decisions can be taken which seem easy and correct at the time. Decisions that are taken in isolation, because we humans are not able to see into the future!
My future was that i needed significant surgery which resulted in a colostomy by the time i was 25. i intend to focus the effects of having a stoma in a later blog.
Sunday, 13 May 2012
We Care We Share
today's blog is so late its almost tomorow's !
It has become very apparent to me through time and experience, that despite the many cruel, violent, indiscriminate and pointless acts that occur in this world, as well as sadistic illnesses, there exist so many good compassionate and fair people.
We are living in age when it is becoming conveniently fashionable to use the sick and disabled as targets to discriminate and victimise.
Sadly, some fall for this and show they are lacking in the basic qualities that make us caring humans.
Yet in recent times i have come to the conclusion that there is a massive quantity of people who care so much for strangers, friends or acquaintances.This applies to Crohns sufferers as carers and recipients of care and compassion, as it does in all other areas.
With Crohns i see an abundance of people willing to share from and share with others to help life a little more tolerable. I have been offered fantastic help and compassion from fellow crohnies as well as from people who do not have the illness. I am sure many other sufferers have experienced the same.
As life progresses, and it seems more likely that the State is hoping to place more on the comfort and care of sufferers of illnesses, to family, friends and charity, the humanity i have witnessed gives me some hope.
Nevertheless, i continue to fight to maintain the care of the vulnerable, sick and disabled is fundamental as part of a civilised, caring society.
I believe in the spirit of people to show their caring qualities inspite of their own suffering. I witness it daily in what might be small, insignificant acts that might help much more significantly than they realise.
Crohns, as of today, remains incurable and chronic. It seems unlikely this will change drastically in the foreseeable future. It means the dependence on others will remain a big part in living with the illness.
I for one see some hope that compassion exists in abundance.
Sadly, in my humble opinion, the compassion, care and empathy i talk about, does not exist in our political rulers. They hide behind fake excuses to attack us and drive us into the dirt!
Hopefully, the many who care, the masses who share, will win. We will then have a land fit to call civilised and a 'society'.
It has become very apparent to me through time and experience, that despite the many cruel, violent, indiscriminate and pointless acts that occur in this world, as well as sadistic illnesses, there exist so many good compassionate and fair people.
We are living in age when it is becoming conveniently fashionable to use the sick and disabled as targets to discriminate and victimise.
Sadly, some fall for this and show they are lacking in the basic qualities that make us caring humans.
Yet in recent times i have come to the conclusion that there is a massive quantity of people who care so much for strangers, friends or acquaintances.This applies to Crohns sufferers as carers and recipients of care and compassion, as it does in all other areas.
With Crohns i see an abundance of people willing to share from and share with others to help life a little more tolerable. I have been offered fantastic help and compassion from fellow crohnies as well as from people who do not have the illness. I am sure many other sufferers have experienced the same.
As life progresses, and it seems more likely that the State is hoping to place more on the comfort and care of sufferers of illnesses, to family, friends and charity, the humanity i have witnessed gives me some hope.
Nevertheless, i continue to fight to maintain the care of the vulnerable, sick and disabled is fundamental as part of a civilised, caring society.
I believe in the spirit of people to show their caring qualities inspite of their own suffering. I witness it daily in what might be small, insignificant acts that might help much more significantly than they realise.
Crohns, as of today, remains incurable and chronic. It seems unlikely this will change drastically in the foreseeable future. It means the dependence on others will remain a big part in living with the illness.
I for one see some hope that compassion exists in abundance.
Sadly, in my humble opinion, the compassion, care and empathy i talk about, does not exist in our political rulers. They hide behind fake excuses to attack us and drive us into the dirt!
Hopefully, the many who care, the masses who share, will win. We will then have a land fit to call civilised and a 'society'.
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