I have made it very apparent that i am a political person. i cannot 'divorce' myself from the external world of what is happening to the many individuals, families and friends who are sick, chronically ill, disabled and very vulnerable. I have had personal experience of the NHS, the hospitals, experts and equipment, as a crohns sufferer from the age of 14 . I have witnessed the 'abuse' and political ideological tussles of governments of all persuasions, when it comes to the experiences, values and results of the great institution the UK has known as The National Health Service.
I am confident that without the qualities and skills of so many medical heroes over my 36 years with crohns, I would not be around to have the ability to write this today. It is by no means perfect, it is impossible to attain perfection, we have human beings in a pressure scenario. Nevertheless, the vision of the NHS as one which is available to all from cradle to grave, via state national insurance and taxation, with the sheer will of the government for it to be a thriving evolving but invaluable life-source, remains to this day as relevant as those early days in 1948 when it was born in an age of post-war austerity.
I recall the creeping expansion of private out-sourcing of cleaning services, then additional services being tendered for contract, often to the lowest bidders, not always the bids which saw the greatest reward to patient. I have also witnessed a failure of government to promote and invest in the training of nursing staff, which has often left a dependence on overseas expertise and care. Even more outrageously,i have seen how the use of agency staff to allow wards to thrive and care for the suffering and vulnerable patients, suck vital resources from the health service, with agency staff warranting ridiculous levels of financial recompense.
Even more disgustingly, the managers, with direct authority from political masters, have been encouraged and allowed to close kitchens , make cooks and kitchen staff redundant. This, simultaneous with the use of ready meal transportation of meals, often barely edible, not designed specifically for the nutritional requirements for patients with special requirements. IBD patients have often experienced the inadequate provision of poor quality, weak nutritional meals. This, in my view, a 'criminal' ideology, leaving patients undernourished or even malnourished, at times when they need major dietary expertise and quality.
Why have these many things been undertaken? With the needs of the patients, staff and hospitals as paramount? No way, sadly the decisions have on many occasions been taken from short-sighted, financial and politically motivated objectives.
We have seen this situation become increasingly critical, hospitals being 'used' by government to sink or swim. Sadly, in my view, i feel that at this current time, NHS hospitals are being deliberately left to struggle, squeezed by their political visitors. The political visitors, who visit wards to emphasise how they 'love' the NHS, care so profoundly for its future, whilst actually undermining the entire foundation on which we all depend. A foundation showing increasing weakness and vulnerability as they are being drained of resources and prepared to be sold off to private groups, many of which have no expertise in the field of healthcare. Hedge-funds, building companies, entrepreneurs with interests in anything and everything and expertise in little!
We in the UK as IBD patients are dependent on the NHS for our lives, yes our lives. We know it suffers failings and managerial weaknesses. We know it occasionally fails people and the vulnerable suffer.
Irrespective of this, the knowledge that we have access to consultants, nurses and support, as a fundamental icon of our society, is something we can cherish and help secure and thrive as this century progresses.
The Prime Minister told us prior to the election is priority was N-H-S , well sorry Mr Cameron, but you misled us all. You continue to, the NHS is at its most vulnerable weakest point it has been at since its formation. This coalition government, with no mandate, are leading and facilitating the provision of NHS healthcare, into the arms of a private medical system. a system like all private companies which will have its shareholders central to its decsion making. Its aims will be for profits, either through such radical reductions in staff and treatments, the selection of 'sexy' more favourably positioned conditions to secure financial rewards, or the introduction of charging for nominal treatments intially, then extending to more complex and extended care and treatments.
Companies like UNUM, an American private medicare company is one of those hovering waiting for the day when they can move into a market to sell private health insurance to patients,with the silent, but obvious approval of this government.
Yes, we know how it feels to be vulnerable, sick, at our lowest point and staring into a spell of weakness, pain and suffering. This is how the NHS is at this precise time, it is being left hung out to fail in order that individuals and companies, with no concern for you or me, more interest in profit and loss and quarterly results, can be presented to the people as the saviours of a 'failed system', the NHS.
We of all people know the value of so many who have cared for us and treated us when we have been at our weakest state. We should know that the NHS is being underfunded, squeezed and exploited for political and financial gain. We will be among the first to experience the effects, but it is our children who will be the long term victims of this dishonest 'robbery'.
I apologise that this blog is so political, but as a chronic sufferer of IBD and other secondary conditions, i believe i have a duty not to ignore and delude myself that nothing is really happening. I have a responsibility to the nurses and doctors who have helped get me through so much, and continue to do so, to stand up for what is right and just. That is to stop the drip , drip drip, discrediting and undermining of the NHS, deliberately, and the desire to allow hospitals to fail and be stolen by private business.
This may sound like scaremongering and politically one-sided. Well, i admit my politics are socialist, i see the value of working and running an economy for the good of society and its people. The essence of the NHS is the accessibility of it to all in their moment of need and vulnerability. It is and had always been funded by the population paying contributions, which will mean they, their families and loved ones, can be treated with care and expertise. The benefit for all, a social service, yes, service, a phrase that is becoming increasingly undermined by political ideology at this time.
If you think my characterization of a creeping 'handing over' of NHS hospitals to private business is extreme and will not really happen, i have news for you, it is already happening. It will become increasingly prevalent if we don't object and oppose the 'theft' of our NHS.
The sad fact is the government has no authority to do anything as radical as this, in fact its mandate should be so weak and diluted by the effect of a coalition. It is a pity that the Liberal democrats have the chance to prevent this and the many attacks on the the state provision of services and welfare to the sick, unemployed and disabled. It does appear their role is to occupy the positions in government, enjoy the luxury and feeling of power, but fail to do little to restrict the extreme changes in the services and elements that have helped this country offer a secure welfare state for its people!
You may use the words 'deficit' and 'austerity' , i will respond with tax loopholes, tax havens, complex tax evasion 'won' by well paid accountants , under the current legal HMRC rules. Add to this, a reduction in the numbers of staff who work in HMRC, which makes the task of recovering 'lost' tax located in complex accounts or havens by 'cheating' individuals and companies, increasingly hard to fulfil and achieve!
John Ingamells
01/11/12
Thursday, 1 November 2012
Wednesday, 29 August 2012
Crohns, my Liver and this....
It struck me after blogging about my crohns and my surgery, that i have often referred to having a colostomy and problems with bleeding from it. Additionally, i have referred to my self image issues as a result of surgery.
I have read a number of fellow bloggers work, some are quite proud to show images of their scars and if it applies, their stomas.
I have toyed with the idea for some time as to whether to include an image in my blog, whether it was suitable or offensive. If people might object or whatever
I do want to add now this is not included for anything other than the time is right, it seems open and honest as part of a blog, and lastly, but by no means least, it is not designed in anyway for pity or to induce sympathy. I do not want any of you to feel that, i hope you don't. This blog is about me, my life with my illness, my fears and my thoughts.
I dont need anyone who hasn't lived this life to sympathise or have an opinion about my need to blog or indeed post the following images.
I post this because they are illustrations of my illness and as such warrant inclusion in this blog. They are included now, because it is a suitable time. A time on my terms and to usher in me blogging more, apologies, at least weekly, and because my health has now acquired added secondary complications.
i have discovered that rather than having a blocked bile duct, which i understood could be resolved endoscopically possible, i have cirrhosis of my liver. My consultant, as with most things Crohn's, cannot say whether this is due to the illness, the medication or a combination of both. When all's said and done, it isn't really that important either way, the liver, spleen and low platelets are all as a result of having crohn's from such a young age, for so long.
So i take pain relief to deal with the the liver, which at times can be 'difficult and very uncomfortable'. I am waiting for a dietician to advise on assisting with helping the liver as well as my crohn's, hoping a diet can be used that will not conflict with each others individual problems.
I have an endoscopy in a fortnight to check if anymore oesophagal vareces have formed. apparently this can be an element of the liver problem.
They also do not really know whether my blood clotting is the low platelets, poor vitamin k absorption, spleen, or the liver which is now an obvious 'candidate'.
My consultant is aiming to try and limit any more major scarring to the liver. Hence, the diet and the need not to be prescribed any medications which can cause 'strain' on the liver.
The good thing is i am not showing obvious yellowing as a consquence of the liver, which has to be a good thing.
It is a time when i will endeavour to focus on the best means, medically, surgically or through diet to deal with my new problems. I hope to enlarge on my progress or otherwise, via this blog.
This is my blog, all about me, my problems, and is in no way designed to influence or scare other sufferers into believing they might have similar things in store.
Crohn's is never that straightforward or simple. We have many variances in how IBD affects us all, the important thing is to be aware and vigilante for everything and share knowledge. That's my view anyway.
We are all different and very individual.
These images are mirror images, so my stoma is left side abdomen
Thanks
29/08/2012
Wednesday, 15 August 2012
From Out-Patients through A+E to surgical...
I haven't blogged for sometime, i've not felt i had anything new to say or offer a great deal of positivity. I haven't been experiencing major problems, though have been in limbo waiting for an mri scan and then a follow up consultant appointment.
So, I have remained invisible and quiet, not wishing to add to or complicate the minds of other sufferers or their families.
I finally saw my consultant on thursday, i am on pretty open and honest terms with her, shes cared for me for so long. Shes admitted that she does withhold some information or potential complications from me. The reasons being obvious.
The mri contradicted the earlier ultrasound. Rather than a dilated bile duct, the original problem i was advised about, i have cirrhosis of my liver. This cirrhosis is as a result of long term crohns, its complications and a lifetime of medications.
So having gone in assuming it was one thing, i am now told a further chronic complaint has developed as a result of my crohns. The consultation went on, my consultant telling me she feels she can manage the liver, will attempt to hold it in check, though all future drugs and diet will need to take the liver into account. She explained to me my blood clotting problems are obviously as a result of the low platelets, large spleen and low vitamin k levels, though the liver is now a factor.
My consultant tells me i need an endoscopy to check for any oesophagal vareces, which can develop as a result of the liver cirrhosis.
I am also referred back to the dietitian, both for the liver damage and my crohns disease.
On returning home, literally within an hour i have a big bleed from the stoma into my bag, not great! Because of the quantity i have to get paramedics to take me in, who do an excellent job in maintaining my vitals are good, getting a line in, and doing all the other things that are relevant.
I got straight into resus, where i was placed on heart monitoring, they are naturally thinking i may have internal bleeding, and spend sometime trying to ensure they will not overlook something that could cause an immediate crash! I'm afraid i'm getting pretty accustomed to these dashes to A+E and urgent intervention. The liver is now an additional aspect.
After close monitoring, regular probing of my abdomen by A+E doctors and then surgeons, they admit me to surgical, to closely monitor my state and be prepared for anything.
Fortunately, i am also given additional clotting aids to help , this seems to stem the stoma bleed.
Through the night my condition begins to improve, i begin to feel assured that this time i have avoided any internal bleeding.
In the morning the surgeons suggest 'burning' or cauterising around the stoma, or even another collection of sutures. As the day progresses, nil by mouth is removed i can eat and drink and no more bleeding occurs. As evening arrives, the surgeons do their rounds, having done all their daily list in theatre. The surgeon, a different one, looks closely at the site and feels assued the bleed is over for now. This being the case, and the realities of life regarding hospital beds, i am told i can go home. Only with the proviso that i will return if anything deteriorates, as if i would somehow not!
I cant say im totally happy with this. All of us know the protective mental and physical cotton wool the hospital and the medics offer us at times.
So into the evening i depart, off guard having prepared for a further night of close monitoring.
Its after getting home that the acceptance of another added chronic problem to the crohns begins to dawn on me. I was given a fair bit of information of possible elements that might happen from the liver damage, its a lot to take in and i like to think i am someone who has experienced many of the secondary problems crohns can bring.
I've got to admit, it is a little frightening, especially with my blood clotting, platelet and spleen problems. i suppose its inevitable that you go into a shell, thinking about the future and drifting into doubt and negativity. I have tried so hard to focus more on the positives as opposed to some of the unfortunate aspects of crohns. I take this as a personal blow really, though i do know there are many suffering much more than me, its easy to slip into that frame of mind!
When i started blogging i hoped to be able to accentuate how much can be achieved with crohns and a stoma, i do still think that is the case. I still think theres value in blogging and trying to be honest and open without making it sound like every person with crohns will develop major complications.
I'm certain that many sufferers will manage to avoid so much of the secondary conditions, i hope that's the case anyway.
When my crohns started the treatment was 'heavy handed' and the consequences weren't always considered. I'm sure many people starting out with the illness will be monitored closely and scanned and tested should complications develop. Its important for all of us with IBD to be aware that we need to be in control of our treatment and always ask the relevant questions and consider the long term secondary problems.
Ive had a weekend of moping and feeling sorry for myself., been able to have a mental consideration of what it all means for me and look on the gloomy side. It been oddly therapeutic, exploring the demons of doubt and despair. In the end I must accept that its another thing to deal with, like many others that seemed like the 'end of the world ' at the time. I know its not always going to be easy to deal with but i'll worry about that when it happens.
I blogged this after such a while not to get sympathy or attention, nor do i want others to think they have this in store. If there's one thing about this illness its the fact that everyones so different. I want anyone reading this to simply be informed and aware. I want them to be upbeat when they are feeling well, we have to make the most of better days and tolerate the bad ones.
I really do want people who are new to IBD to get as much information as they can and 'hound' the medics if necessary, with as many questions and concerns.
Treat the professionals with respect, but it's our body, we must call the shots!
I start my 52nd year on the planet next week, don't rush with the cards and gifts that wasn't a hint... I want that 52nd year to be a good one and intend to make the most of the better days and try not be a total pain on the bad ones! I will do my utmost to deal with blows and knock-backs as best as I am able, I' sure I won't always succeed.
At least i've got my excuses in first!
So, I have remained invisible and quiet, not wishing to add to or complicate the minds of other sufferers or their families.
I finally saw my consultant on thursday, i am on pretty open and honest terms with her, shes cared for me for so long. Shes admitted that she does withhold some information or potential complications from me. The reasons being obvious.
The mri contradicted the earlier ultrasound. Rather than a dilated bile duct, the original problem i was advised about, i have cirrhosis of my liver. This cirrhosis is as a result of long term crohns, its complications and a lifetime of medications.
So having gone in assuming it was one thing, i am now told a further chronic complaint has developed as a result of my crohns. The consultation went on, my consultant telling me she feels she can manage the liver, will attempt to hold it in check, though all future drugs and diet will need to take the liver into account. She explained to me my blood clotting problems are obviously as a result of the low platelets, large spleen and low vitamin k levels, though the liver is now a factor.
My consultant tells me i need an endoscopy to check for any oesophagal vareces, which can develop as a result of the liver cirrhosis.
I am also referred back to the dietitian, both for the liver damage and my crohns disease.
On returning home, literally within an hour i have a big bleed from the stoma into my bag, not great! Because of the quantity i have to get paramedics to take me in, who do an excellent job in maintaining my vitals are good, getting a line in, and doing all the other things that are relevant.
I got straight into resus, where i was placed on heart monitoring, they are naturally thinking i may have internal bleeding, and spend sometime trying to ensure they will not overlook something that could cause an immediate crash! I'm afraid i'm getting pretty accustomed to these dashes to A+E and urgent intervention. The liver is now an additional aspect.
After close monitoring, regular probing of my abdomen by A+E doctors and then surgeons, they admit me to surgical, to closely monitor my state and be prepared for anything.
Fortunately, i am also given additional clotting aids to help , this seems to stem the stoma bleed.
Through the night my condition begins to improve, i begin to feel assured that this time i have avoided any internal bleeding.
In the morning the surgeons suggest 'burning' or cauterising around the stoma, or even another collection of sutures. As the day progresses, nil by mouth is removed i can eat and drink and no more bleeding occurs. As evening arrives, the surgeons do their rounds, having done all their daily list in theatre. The surgeon, a different one, looks closely at the site and feels assued the bleed is over for now. This being the case, and the realities of life regarding hospital beds, i am told i can go home. Only with the proviso that i will return if anything deteriorates, as if i would somehow not!
I cant say im totally happy with this. All of us know the protective mental and physical cotton wool the hospital and the medics offer us at times.
So into the evening i depart, off guard having prepared for a further night of close monitoring.
Its after getting home that the acceptance of another added chronic problem to the crohns begins to dawn on me. I was given a fair bit of information of possible elements that might happen from the liver damage, its a lot to take in and i like to think i am someone who has experienced many of the secondary problems crohns can bring.
I've got to admit, it is a little frightening, especially with my blood clotting, platelet and spleen problems. i suppose its inevitable that you go into a shell, thinking about the future and drifting into doubt and negativity. I have tried so hard to focus more on the positives as opposed to some of the unfortunate aspects of crohns. I take this as a personal blow really, though i do know there are many suffering much more than me, its easy to slip into that frame of mind!
When i started blogging i hoped to be able to accentuate how much can be achieved with crohns and a stoma, i do still think that is the case. I still think theres value in blogging and trying to be honest and open without making it sound like every person with crohns will develop major complications.
I'm certain that many sufferers will manage to avoid so much of the secondary conditions, i hope that's the case anyway.
When my crohns started the treatment was 'heavy handed' and the consequences weren't always considered. I'm sure many people starting out with the illness will be monitored closely and scanned and tested should complications develop. Its important for all of us with IBD to be aware that we need to be in control of our treatment and always ask the relevant questions and consider the long term secondary problems.
Ive had a weekend of moping and feeling sorry for myself., been able to have a mental consideration of what it all means for me and look on the gloomy side. It been oddly therapeutic, exploring the demons of doubt and despair. In the end I must accept that its another thing to deal with, like many others that seemed like the 'end of the world ' at the time. I know its not always going to be easy to deal with but i'll worry about that when it happens.
I blogged this after such a while not to get sympathy or attention, nor do i want others to think they have this in store. If there's one thing about this illness its the fact that everyones so different. I want anyone reading this to simply be informed and aware. I want them to be upbeat when they are feeling well, we have to make the most of better days and tolerate the bad ones.
I really do want people who are new to IBD to get as much information as they can and 'hound' the medics if necessary, with as many questions and concerns.
Treat the professionals with respect, but it's our body, we must call the shots!
I start my 52nd year on the planet next week, don't rush with the cards and gifts that wasn't a hint... I want that 52nd year to be a good one and intend to make the most of the better days and try not be a total pain on the bad ones! I will do my utmost to deal with blows and knock-backs as best as I am able, I' sure I won't always succeed.
At least i've got my excuses in first!
Wednesday, 13 June 2012
It ain't all about guts!
I have not blogged for several days, due to several reasons, lack of inspiration and pain being two.Crohns can be a cruel,unending torment to the body and mind. It can be a tussle with external and internal issues,not directly the crohns or the pain connected to it.
It has been a source of frustration and bemusement for years that the treatment of crohns fails to include the whole body and mind.
I have tried in the past to impress on local health service providers the genuine need to treat chronic ill health, specifically IBD, with a view to the mind, spiritual requirements and relaxation.
I have taken advantage of massage, relaxation, hypnotherapy methods myself, and know how useful they are for allowing tension and pain to be dissipated and managed.
Additionally, i can see advantage in music and other artistic therapies to aid those in flare ups, preparation for surgery or in remission.
It is plainly obvious to myself, that crohns can be as much to do with focus of the mind, positivity and dealing with pain and anxiety.
I recognise the times we are living in and see there are only limited resources made accessible. I understand the real world means we must direct valuable assets to obvious positive treaments.
Nevertheless, it is an area overlooked by so many health providers and genuine valuable improvement can be attained to help deal with the effects of these conditions.
Life with chronic ill health is an up and down journey, the physical damage alone is debilitating and drains the body.
There appears to be little measurement of the extent of the damage to patients through the psychological effects which then add to ones meted out by IBD itself. I see real value in specific focusing of IBD in treating the mind, the pain management and stress.
It fascinates me to to discover whether any fellow patients in the UK or anywhere around the World have any experience of any additional treatments designed to improve the lives of IBD patients, and indeed their family members and loved ones.
I have always felt that any physical illness, acute or chronic, would gain through treating the person as a whole, not just the illness. I remain convinced that we and health providers would gain in the long term.
I hope this blog inspires those who read to offer feedback, even if they disagree with it.
It has been a source of frustration and bemusement for years that the treatment of crohns fails to include the whole body and mind.
I have tried in the past to impress on local health service providers the genuine need to treat chronic ill health, specifically IBD, with a view to the mind, spiritual requirements and relaxation.
I have taken advantage of massage, relaxation, hypnotherapy methods myself, and know how useful they are for allowing tension and pain to be dissipated and managed.
Additionally, i can see advantage in music and other artistic therapies to aid those in flare ups, preparation for surgery or in remission.
It is plainly obvious to myself, that crohns can be as much to do with focus of the mind, positivity and dealing with pain and anxiety.
I recognise the times we are living in and see there are only limited resources made accessible. I understand the real world means we must direct valuable assets to obvious positive treaments.
Nevertheless, it is an area overlooked by so many health providers and genuine valuable improvement can be attained to help deal with the effects of these conditions.
Life with chronic ill health is an up and down journey, the physical damage alone is debilitating and drains the body.
There appears to be little measurement of the extent of the damage to patients through the psychological effects which then add to ones meted out by IBD itself. I see real value in specific focusing of IBD in treating the mind, the pain management and stress.
It fascinates me to to discover whether any fellow patients in the UK or anywhere around the World have any experience of any additional treatments designed to improve the lives of IBD patients, and indeed their family members and loved ones.
I have always felt that any physical illness, acute or chronic, would gain through treating the person as a whole, not just the illness. I remain convinced that we and health providers would gain in the long term.
I hope this blog inspires those who read to offer feedback, even if they disagree with it.
Tuesday, 5 June 2012
Crohns- Predictably Unpredictable
I see many of us who have crohns, or ibd generally as individuals all sharing a common condition. Yet this common condition lacks a commonality in its damage, effects and reactions to medical or surgical treatments. You may say 'this is stating the obvious' and in many ways its true.
However, i know through having crohns for the time i have, that we do appear to have so many varied experiences and obstacles as a consequence, that it is significant to me.Indeed some sufferers have numerous surgeries, others hardly any, even none! Some experience very successful responses to treatments giving respite from flare up and remission. Others struggle,desperately to locate a successful medical resolution, suffering the pain and turmoil before a breakthrough is discovered.
Many of others will pick up additional complications as a result of the treament or illness. Some will manage fewer or little.
Having established IBD and specificially crohns are inconsistent in many ways, it is equally as obvious to say the personal responses to and handling of these inconsistencies can vary so much. It is obvious to say the degrees in fragility of our bodies and minds, has a major role in our life with our illness.
This would also mean environment and surroundings play a role in the way we deal effectively with illness.
Essentially what i am saying is, I am imagine, one of the reasons why it has taken such a long time and counting, to find an adequate substantive reason for why we develop the conditions. The natural partner to that puzzle is the discovery in how to prevent and cure the conditions.
I think we see progress in research and investment, don't we all wish for it to be speedier and more successful?
I. like many others are optimist that a genetic breakthrough will be discovered soon. I don't imagine to see the benefits greatly to my own situation, but am hopeful that future generations, family members children, etc will be the real winners.
It is easy to be negative with this condition, i am one of the worst i imagine! I often allow mood and emotion to cloud judgement, but i know it and that's something i suppose.
I look at IBD and still see children being diagnosed, youngsters having so much pain and suffering at present and in the future, and it is them and the future generations that I am more hopeful about.
I see hope in the dedication of the Medical experts across the globe, the many Support Groups and the Researchers, and i see an optimistic outcome for IBD in the future.
However, i know through having crohns for the time i have, that we do appear to have so many varied experiences and obstacles as a consequence, that it is significant to me.Indeed some sufferers have numerous surgeries, others hardly any, even none! Some experience very successful responses to treatments giving respite from flare up and remission. Others struggle,desperately to locate a successful medical resolution, suffering the pain and turmoil before a breakthrough is discovered.
Many of others will pick up additional complications as a result of the treament or illness. Some will manage fewer or little.
Having established IBD and specificially crohns are inconsistent in many ways, it is equally as obvious to say the personal responses to and handling of these inconsistencies can vary so much. It is obvious to say the degrees in fragility of our bodies and minds, has a major role in our life with our illness.
This would also mean environment and surroundings play a role in the way we deal effectively with illness.
Essentially what i am saying is, I am imagine, one of the reasons why it has taken such a long time and counting, to find an adequate substantive reason for why we develop the conditions. The natural partner to that puzzle is the discovery in how to prevent and cure the conditions.
I think we see progress in research and investment, don't we all wish for it to be speedier and more successful?
I. like many others are optimist that a genetic breakthrough will be discovered soon. I don't imagine to see the benefits greatly to my own situation, but am hopeful that future generations, family members children, etc will be the real winners.
It is easy to be negative with this condition, i am one of the worst i imagine! I often allow mood and emotion to cloud judgement, but i know it and that's something i suppose.
I look at IBD and still see children being diagnosed, youngsters having so much pain and suffering at present and in the future, and it is them and the future generations that I am more hopeful about.
I see hope in the dedication of the Medical experts across the globe, the many Support Groups and the Researchers, and i see an optimistic outcome for IBD in the future.
Friday, 1 June 2012
Crohns- Glass Half Full
I see Crohns as as much a struggle with the mind as the physical aspects resulting from the illness . I think it is apparent to anyone who has read this blog over the period i have written it.
I find that much like the illness can be unpredictable, so can my mood and outlook. I have never grasped how or what can cause my mood to change to a darker less positive one, but am aware of it , i can see the darkness.
It is and has been a struggle with a fluctuation of mood and even depression over the time. I cannot even definitely say it is wholly connected to my illness. I suppose it is inevitable that anyone with a long term condition will wrestle with depression.
What I want to say in this blog is that, despite a battle with illness and mood swings, I have come to the conclusion that the illness is not going to defeat me by allowing my outlook, even if it is low, to hold me in a limbo of self pity and inertia.
I have experienced many clear bright days when the sun can appear and overpower the full force of any storm or downpouring of rain. I have often understated the full effects of the glimpses of this light, lessening its ability to brighten my day and positivity.
Illness wears you down and diminshes your will and fire. Some days there are many bright rays offering me optimism and positivity, and i fail to grasp it or take advantage of these rays of light.
I do tend to allow things get on top of me , sometimes quickly and with a force. I have a tendency to keep in those problems and they worsen and become more significant then they warrant.
I am blogging today to try to encourage people to embrace the dark thoughts and downs, become open and more free in sharing feelings. I have realised over time , yes i am slow on the uptake, that living with crohns can provide so many good times, experiences and relationships. I think i have been unwilling or unable to take advantage of those happier times, which can help give crohns a greater control and power than i want it to.
I am personally determined to let these bright rays dominate my outlook and future. I have no intention in the present and future of letting crohns or depression make decisions for me.
Add to this i am also determined to view the realities of my illness not to swallow me up and become the major element in my character.
I realise that everyone struggles with all the effects of this illness, and some days are always going to be better than others. I have lived so long with the illness, than 'normal' John no longer exists.
Nevertheless, it doesn't mean that i am defeated or will compromise. i have done this, it doesn't help, i want to run the illness when possible, not the other way round.
The bottom line to everything about this illness is to have someone to share this load and to be able to 'hold your hand' through it. you have to also be strong enough to admit you need your 'hand to be held'.
I find that much like the illness can be unpredictable, so can my mood and outlook. I have never grasped how or what can cause my mood to change to a darker less positive one, but am aware of it , i can see the darkness.
It is and has been a struggle with a fluctuation of mood and even depression over the time. I cannot even definitely say it is wholly connected to my illness. I suppose it is inevitable that anyone with a long term condition will wrestle with depression.
What I want to say in this blog is that, despite a battle with illness and mood swings, I have come to the conclusion that the illness is not going to defeat me by allowing my outlook, even if it is low, to hold me in a limbo of self pity and inertia.
I have experienced many clear bright days when the sun can appear and overpower the full force of any storm or downpouring of rain. I have often understated the full effects of the glimpses of this light, lessening its ability to brighten my day and positivity.
Illness wears you down and diminshes your will and fire. Some days there are many bright rays offering me optimism and positivity, and i fail to grasp it or take advantage of these rays of light.
I do tend to allow things get on top of me , sometimes quickly and with a force. I have a tendency to keep in those problems and they worsen and become more significant then they warrant.
I am blogging today to try to encourage people to embrace the dark thoughts and downs, become open and more free in sharing feelings. I have realised over time , yes i am slow on the uptake, that living with crohns can provide so many good times, experiences and relationships. I think i have been unwilling or unable to take advantage of those happier times, which can help give crohns a greater control and power than i want it to.
I am personally determined to let these bright rays dominate my outlook and future. I have no intention in the present and future of letting crohns or depression make decisions for me.
Add to this i am also determined to view the realities of my illness not to swallow me up and become the major element in my character.
I realise that everyone struggles with all the effects of this illness, and some days are always going to be better than others. I have lived so long with the illness, than 'normal' John no longer exists.
Nevertheless, it doesn't mean that i am defeated or will compromise. i have done this, it doesn't help, i want to run the illness when possible, not the other way round.
The bottom line to everything about this illness is to have someone to share this load and to be able to 'hold your hand' through it. you have to also be strong enough to admit you need your 'hand to be held'.
Monday, 28 May 2012
"I Dont Want to Feel a Burden"
A few days since my last addition, for several reasons.
I think its about time I had something to offer, so here we go. This bearing in mind, the weather here in the UK is rather untypically hot and sticky, so I apologise in advance for any distracted focus.
The thing about enduring any illness, Chronic, especially, is that you have to come terms with having poor days when you feel something akin to wanting to curl up and hide.
At times, it is difficult to get the stamina to do anything. These periods can be intermittent or relentlessly consecutive, depending on whether Crohns is actually in a flare or if additional secondary Chronic conditions are present.
So, whether you are content or in the position to be able to receive it, you do need help and care at times. You are dependent on others for so many things from the mundane to the more involved.
This is not to say its a situation of being helpless and at the will of others. Nor is it an excuse to opt-out.
I'd like to see it as being a partnership rather than total dependence, more of a sharing of the good and bad and a relationship in caring.
It is sometimes a fact that through our own suffering and pain, we neglect to consider the stress and struggles carers go through. It is an easy thing to do, and yes, at times, i have done this. I don't think, speaking personally, it is driven by selfishness, its simply being in pain and suffering and lacking thought.
The reverse of this is the tendency to feel you are capable of dealing with things, shunning any offer of help or assistance, often leading to people suffering in silence. Not wanting to be a burden or through a sort of pride. I have also done this in the past.
I would say the one thing about this or any illness is to be honest with your loved ones or carers. Let them know if you feel capable or incapable of certain things. The " i dont want to be a burden" will always be there, but communication will mean it is watered down.
I think its about time I had something to offer, so here we go. This bearing in mind, the weather here in the UK is rather untypically hot and sticky, so I apologise in advance for any distracted focus.
The thing about enduring any illness, Chronic, especially, is that you have to come terms with having poor days when you feel something akin to wanting to curl up and hide.
At times, it is difficult to get the stamina to do anything. These periods can be intermittent or relentlessly consecutive, depending on whether Crohns is actually in a flare or if additional secondary Chronic conditions are present.
So, whether you are content or in the position to be able to receive it, you do need help and care at times. You are dependent on others for so many things from the mundane to the more involved.
This is not to say its a situation of being helpless and at the will of others. Nor is it an excuse to opt-out.
I'd like to see it as being a partnership rather than total dependence, more of a sharing of the good and bad and a relationship in caring.
It is sometimes a fact that through our own suffering and pain, we neglect to consider the stress and struggles carers go through. It is an easy thing to do, and yes, at times, i have done this. I don't think, speaking personally, it is driven by selfishness, its simply being in pain and suffering and lacking thought.
The reverse of this is the tendency to feel you are capable of dealing with things, shunning any offer of help or assistance, often leading to people suffering in silence. Not wanting to be a burden or through a sort of pride. I have also done this in the past.
I would say the one thing about this or any illness is to be honest with your loved ones or carers. Let them know if you feel capable or incapable of certain things. The " i dont want to be a burden" will always be there, but communication will mean it is watered down.
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