I live alone. Living alone when you are not ill can be hard but when you are ill it can be stressful and very hard.Its hard to have the energy to cope with all the things you have to when your on your own, cooking, cleaning etc but its also stressful as you live in constant fear of being alone when you are ill.
About four months after I was diagnosed I started coughing one night and ended up finding it very hard to breath. In the end I had to call for an ambulance and they took me into hospital and after a night there I was alright but after when I came home I was so frightened.Every time I coughed I was scared that I would end up fighting for my breath once more.It really affected my confidence and for months it was hell as I lived in constant anxiety. That fear is not so bad now but its still there and never really goes away.
The government say that more people with long term conditions should be treated at home because people are better off there. That is alright if you are not alone but when your alone and feeling ill being on your own, living in your own home can be nothing short of a living hell.
I know that sooner or later there is going to come a time when I will become very ill and when I do I will fight tooth and nail not to remain in my own home and go into a hospice or a nursing home.I want to die in peace in a place I know people are on hand to help me not alone and afraid.
Wednesday, 30 June 2010
Tuesday, 29 June 2010
Hot Weather!
Image via WikipediaFor those of us with lung and heart problems its about as welcome as being bite on the bum by a bee! Sooner it ends the better!!!
Pulmonary Hypertension.
Pulmonary Hypertension is a rare disease. Here in the UK only about four thousand people have the illness.Because its so rare often it can go undiagnosed and also sufferers often get the wrong treatment or end up being given the wrong advice about PH
Most people who have PH are treated at one of the eight specialist PH centres in the country but some are treated at local hospitals in between visits to the PH centres or if there condition is stable. It is when people are treated at local hospitals that problems can arise.I have read cases of people nearly dying because they have been given the wrong drugs because the doctor didn`t realise that the drug could affect the PH, others having there condition mistook for ordinary hypertension in the blood and even someone being told that the condition is caused by being overweight.
I think more resources need to be put into the PH centres so they can deal with more patients and also there needs to be an extensive education programme in the NHS about PH. If this is not done more people will die needlessly and PH sufferers will not get the treatment they deserve.
Most people who have PH are treated at one of the eight specialist PH centres in the country but some are treated at local hospitals in between visits to the PH centres or if there condition is stable. It is when people are treated at local hospitals that problems can arise.I have read cases of people nearly dying because they have been given the wrong drugs because the doctor didn`t realise that the drug could affect the PH, others having there condition mistook for ordinary hypertension in the blood and even someone being told that the condition is caused by being overweight.
I think more resources need to be put into the PH centres so they can deal with more patients and also there needs to be an extensive education programme in the NHS about PH. If this is not done more people will die needlessly and PH sufferers will not get the treatment they deserve.
Monday, 28 June 2010
Food to Help Gain Energy!
Foods that will help anyone with a long term health problem.
COPD Foods Pictures Slideshow: Energy-Boosting Foods for Chronic Obstructive Pulmonary Disease
COPD Foods Pictures Slideshow: Energy-Boosting Foods for Chronic Obstructive Pulmonary Disease
COPD.
Image via WikipediaI believe we must do much more to make the air we breath cleaner and healthier. We need to cut back on car use, invest in public transport, make more of our town centres car free, punish companies that pollute, invest in better cleaner ways of producing energy and powering our cars.
We are clearly not doing enough at present. In London they have exceeded there pollution limit for the year in just six months which is outrageous.We need to do more for our children`s sake, for the generations to come so they can breath fresh clean air and do not end up struggling to breath like many of us do now.
Sunday, 27 June 2010
Aids!
When I was diagnosed with Pulmonary Hypertension I had to have a test for Aids as sometimes it can be caused by that. I told the doctors there was no way I had that but they insisted and I didn`t mind as far as I am concerned there is nothing to be ashamed in it as aids is just another illness to me.
It amused me when the lady came round to the ward to give me a series of blood tests as she took a number of samples and then whispered to me this is the special one.As far as I was concerned it was just the same as all the rest but I suppose with some there is still a stigma about Aids which I think is sad.
People with illness deserve support and understanding I think regardless of what they have or for what reason. We are all equal in life and in death and the way I look at it we are all equal in a doctors surgery or a hospital waiting room as well.
It amused me when the lady came round to the ward to give me a series of blood tests as she took a number of samples and then whispered to me this is the special one.As far as I was concerned it was just the same as all the rest but I suppose with some there is still a stigma about Aids which I think is sad.
People with illness deserve support and understanding I think regardless of what they have or for what reason. We are all equal in life and in death and the way I look at it we are all equal in a doctors surgery or a hospital waiting room as well.
Saturday, 26 June 2010
Regrets!
Anyone with all of the health problems I have would be mad to say they don`t regret being ill but although I regret the illness I don`t regret the experience of having these challenges I have been given.
I think it as made me a better person. I now realise what is important and what is not in life. It has made me far more caring and given me a strong empathy to all those who are suffering in the world and its also mad me more tolerant and understanding of people.
People often say what is the reason for us being here.I think we are here to become better people and I think you can really do that if you know pain as much as you know joy.
My body may be weaker now than it was but I thank god that my soul and my character is better and stronger than it has ever been.
I think it as made me a better person. I now realise what is important and what is not in life. It has made me far more caring and given me a strong empathy to all those who are suffering in the world and its also mad me more tolerant and understanding of people.
People often say what is the reason for us being here.I think we are here to become better people and I think you can really do that if you know pain as much as you know joy.
My body may be weaker now than it was but I thank god that my soul and my character is better and stronger than it has ever been.
Friday, 25 June 2010
Organ Donation.
One of the first things I was told by my consultant when I was first diagnosed with pulmonary Hypertension was that eventually I may need a heart and lung transplant. This was a shock I can tell you. Never really thought much about organ donation before I was diagnosed. Its not something must people do as its something that is a part of other peoples lives not your own.
I have read many stories in the last couple of years of people having there lives transformed by organ donation. Young people sometimes in there twenties at the start of there lives looking forward to nothing but illness and disability have there lives transformed by the generousity of others.
Organ donation gives hope to people and makes something out of the tragedy of death.The last act a persons life can be there most lasting and generous.
I have read many stories in the last couple of years of people having there lives transformed by organ donation. Young people sometimes in there twenties at the start of there lives looking forward to nothing but illness and disability have there lives transformed by the generousity of others.
Organ donation gives hope to people and makes something out of the tragedy of death.The last act a persons life can be there most lasting and generous.
Thursday, 24 June 2010
Becoming Disabled!
When I become ill I become disabled as I can now not walk far and every day tasks are either hard or impossible. I am on oxygen for most of the day and my life is built around inhalers, drugs and visits to the hospital or doctors.
This is a dramatic lifestyle change and how do you cope with it.Firstly you should never be ashamed or afraid to say that you are disabled.This is what you are and none of us should be ashamed of what we are. Secondly you should not feel guilt about not doing things if you don`t feel good or you simply cannot manage it.You have to realise that now is the time to put yourself and your health first as if you don`t those around you who you love and who you have always put first will not have you around for much longer.
This is a dramatic lifestyle change and how do you cope with it.Firstly you should never be ashamed or afraid to say that you are disabled.This is what you are and none of us should be ashamed of what we are. Secondly you should not feel guilt about not doing things if you don`t feel good or you simply cannot manage it.You have to realise that now is the time to put yourself and your health first as if you don`t those around you who you love and who you have always put first will not have you around for much longer.
Tuesday, 22 June 2010
Pulmonary Hypertension and Other things!
Most people with PH have other illnesses as well. I have COPD which is empathysema and other lung problems as well as sleep apeona and heart failure. Most PH sufferers have heart failure on the right side of the heart.
It can make life complicated as what is good for one problem can make the other worse. Your suppose to drink a lot for instance when you have COPD but having heart failure you are meant to limit what you drink because it gives you problems with retaining fluid.
Its complicated but can be interesting because you need to know about your illnesses and understand them so you can help yourself and manage your condition so you do tend to learn a lot about medicine and drugs and different treatments. Life sure is complicated with PH but never dull.
It can make life complicated as what is good for one problem can make the other worse. Your suppose to drink a lot for instance when you have COPD but having heart failure you are meant to limit what you drink because it gives you problems with retaining fluid.
Its complicated but can be interesting because you need to know about your illnesses and understand them so you can help yourself and manage your condition so you do tend to learn a lot about medicine and drugs and different treatments. Life sure is complicated with PH but never dull.
Monday, 21 June 2010
Pulmonary Hypertension.
One of the worst aspects of living with PH is the tiredness. Well I say tiredness it really is sheer bloody exhaustion. Today is not a good day and all I really want to do is go back to bed and sleep but you can`t let yourself get like that as its just giving in and giving up. You have to fight and try to overcome it but it is hard. Very hard.
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