Sunday, November 22, 2009
Wednesday, November 4, 2009
Busy Day
Yesterday was a busy day for me. Toby brought me a cup of coffee before he went to school, but on looking out of the window at the rain it was obvious that I was not going to get out that day. I rang Emma and she agreed to come and visit and she walked in the house just as I got to the bottom of the stairs.
We have both decided that CBT is not the thing for me. My fears are terrifyingly real unlike others who fear places or things that bring on their panic attacks. I am coming round to the realisation that it is my suffocation alarm that is triggering them and so she has decided that councelling might be better. I have low self esteem and depression and this might help. I am just grateful that I am not being abandoned. I will wait to hear from her.
An hour later Karen and Gemma arrived. We talked about the Lung Transplant proposal and what I have to do in order for this to happen and so Karen has upped my exercise routine. It went relatively well. I struggled with the ones where I had to stand but the others were fine. What I was determined to improve on was the walk and I was very pleased to actually do 4 mins at last after a few weeks of giving up after 2mins.
Had another nasty panic attack last night. I hate them, they render me incapable of anything including talking or thinking straight and seemed to go on all evening. My body felt battered and bruised by the time I lay down to sleep.
We have both decided that CBT is not the thing for me. My fears are terrifyingly real unlike others who fear places or things that bring on their panic attacks. I am coming round to the realisation that it is my suffocation alarm that is triggering them and so she has decided that councelling might be better. I have low self esteem and depression and this might help. I am just grateful that I am not being abandoned. I will wait to hear from her.
An hour later Karen and Gemma arrived. We talked about the Lung Transplant proposal and what I have to do in order for this to happen and so Karen has upped my exercise routine. It went relatively well. I struggled with the ones where I had to stand but the others were fine. What I was determined to improve on was the walk and I was very pleased to actually do 4 mins at last after a few weeks of giving up after 2mins.
Had another nasty panic attack last night. I hate them, they render me incapable of anything including talking or thinking straight and seemed to go on all evening. My body felt battered and bruised by the time I lay down to sleep.
Tuesday, November 3, 2009
The Suffocation Alarm
Our brains are designed to protect us and keep us alive. Deep in our brain is a region that constantly samples our blood to be sure that we are breathing well, and that we are breathing clean, "healthy" air. If it detects anything wrong with our breathing or the air around us, it can send out an alarm signal that something is wrong. This might feel like as sudden rush of anxiety, or even panic. This feeling is supposed to prod us to get up and get away from whatever dangerous situation has caused our breathing to set off our "suffocation alarm".
With COPD, you regularly have trouble breathing and your suffocation alarm can become "hyperactive". You might feel anxious and edgy. Even little changes, like strong odors or being hurried, can fire off a full suffocation alarm signal. This is the reason that patients with COPD frequently complain of increased episodes of panic and anxiety.
This response is common and does not mean that there is something wrong with you mentally or emotionally.
With help from your doctor, there are a number of things you can do to "reset" your suffocation alarm. These may include:
* Breathing Training
* Counseling
* Medications
Managing Worry
Fears and worrying are common problems for people with COPD. These can be caused by your "suffocation alarm" or result from all the changes that have occurred because of your COPD. Below is a list of some of the ways that "too much worrying" can show up. Print this page and check off those items on the list that you feel apply to your experience:
* I have trouble getting to sleep because I’m worrying.
* I can be sitting quietly and suddenly become short of breath.
* I almost always have a nagging worry about when I’m going to have an episode of difficult breathing.
* I seem to be getting more and more frightened to leave the house.
* I’d rather stay home so I can avoid being exposed to the "dangers" out there, e.g. people’s germs or excessive perfumes.
* I’m frightened of getting onto elevators, airplanes, or bridges and will go out of my way to avoid them.
* I walk around feeling as if something bad is going to happen.
If you are experiencing any of these symptoms or the following feelings, talk to someone on your treatment team and you'll get help.
It is also not uncommon for people with COPD who are depressed or feeling overwhelmed by the stress in their lives to want to "take a break" from being sick. At these times they may find themselves not paying enough attention to the illness, or on some level denying that they even have the health problem. They may notice some of the following (again, check off the ones that apply to you):
* I frequently overextend myself and pay for it with worse symptoms the next day or two.
* I try to use as little medication as possible, and as little oxygen as possible, even when my doctor wants me to use more.
* Sometimes I pretend I don’t have COPD, even in situations when I know it might be important to let others know.
* When I’m feeling "hassled" by my COPD, I drink more alcohol than I should because it lets me forget about the COPD.
What is "An Ideal Level of Worry"?
The fact is that there is an "ideal level of worry." At this ideal state, you understand that you have a chronic and challenging illness. You know there are things you can do that will help and hurt your experience with the illness. Over the long course of COPD you will likely go through periods of time when you worry "too much" and other times when perhaps you should give your illness more consideration. These fluctuations are absolutely normal. It is important to find the "just right" amount of worry that can help you keep your life and your illness more in balance.
This information has been approved by Rachel Norwood, MD (September 2006).
Note: This information is provided to you as an educational service of National Jewish Health. It is not meant to be a substitute for consulting with your own physician.
© Copyright 2008 National Jewish Health
With COPD, you regularly have trouble breathing and your suffocation alarm can become "hyperactive". You might feel anxious and edgy. Even little changes, like strong odors or being hurried, can fire off a full suffocation alarm signal. This is the reason that patients with COPD frequently complain of increased episodes of panic and anxiety.
This response is common and does not mean that there is something wrong with you mentally or emotionally.
With help from your doctor, there are a number of things you can do to "reset" your suffocation alarm. These may include:
* Breathing Training
* Counseling
* Medications
Managing Worry
Fears and worrying are common problems for people with COPD. These can be caused by your "suffocation alarm" or result from all the changes that have occurred because of your COPD. Below is a list of some of the ways that "too much worrying" can show up. Print this page and check off those items on the list that you feel apply to your experience:
* I have trouble getting to sleep because I’m worrying.
* I can be sitting quietly and suddenly become short of breath.
* I almost always have a nagging worry about when I’m going to have an episode of difficult breathing.
* I seem to be getting more and more frightened to leave the house.
* I’d rather stay home so I can avoid being exposed to the "dangers" out there, e.g. people’s germs or excessive perfumes.
* I’m frightened of getting onto elevators, airplanes, or bridges and will go out of my way to avoid them.
* I walk around feeling as if something bad is going to happen.
If you are experiencing any of these symptoms or the following feelings, talk to someone on your treatment team and you'll get help.
It is also not uncommon for people with COPD who are depressed or feeling overwhelmed by the stress in their lives to want to "take a break" from being sick. At these times they may find themselves not paying enough attention to the illness, or on some level denying that they even have the health problem. They may notice some of the following (again, check off the ones that apply to you):
* I frequently overextend myself and pay for it with worse symptoms the next day or two.
* I try to use as little medication as possible, and as little oxygen as possible, even when my doctor wants me to use more.
* Sometimes I pretend I don’t have COPD, even in situations when I know it might be important to let others know.
* When I’m feeling "hassled" by my COPD, I drink more alcohol than I should because it lets me forget about the COPD.
What is "An Ideal Level of Worry"?
The fact is that there is an "ideal level of worry." At this ideal state, you understand that you have a chronic and challenging illness. You know there are things you can do that will help and hurt your experience with the illness. Over the long course of COPD you will likely go through periods of time when you worry "too much" and other times when perhaps you should give your illness more consideration. These fluctuations are absolutely normal. It is important to find the "just right" amount of worry that can help you keep your life and your illness more in balance.
This information has been approved by Rachel Norwood, MD (September 2006).
Note: This information is provided to you as an educational service of National Jewish Health. It is not meant to be a substitute for consulting with your own physician.
© Copyright 2008 National Jewish Health
Monday, November 2, 2009
Smoke Free
Woke this morning to a man in my bedroom. He was delivering my oxygen. I cannot fault these people they are life savers literally. He swopped my candulla from the portable one I had used last night when my big tank ran out, to the new one he had humped up my stairs, and then left as quietly as he had come. I fell back to sleep only to be woken again by my sister ringing to chat about the news I had received last week regarding my possible surgery. She was full of encouragement and happy for me. Thus my day began about 11.30 a.m.
My wonderful husband had left a tray of different foods for me to graze on throughout the day. I find it difficult to prepare meals and also cannot eat huge amounts at a time, so when I read this... http://www.2ndwind.org/transplantation/nutrition/eating.html it explained it very well how to cope and maybe make me stronger to face what lies ahead.
I've been occupying my afternoon reading websites where real people have written about their own experiences preparing and having surgery. It is helping me have a better idea at what I have to face, but boy have I got a lot of questions for my COPD healthcare team. Here is one persons story. http://www.copd-international.com/Library/Patient_story-continues.htm
I've noticed my anxiety attacks are getting more frequent despite the recent news. I'm not sure what is setting them off. The last few evenings they have been happening just before I lie down to sleep when I have no anxiety about moving and being out of breath. It would be nice to get to the bottom of this, they are horrible and very disabling. I am going for my 3rd appointment with Emma at the Health Centre tomorrow morning regarding this problem. Lets hope the weather is kind and I could do with getting out and having some fresh air, it has been 5 days since I did that.
As the title of this post suggests this is my first day.
My wonderful husband had left a tray of different foods for me to graze on throughout the day. I find it difficult to prepare meals and also cannot eat huge amounts at a time, so when I read this... http://www.2ndwind.org/transplantation/nutrition/eating.html it explained it very well how to cope and maybe make me stronger to face what lies ahead.
I've been occupying my afternoon reading websites where real people have written about their own experiences preparing and having surgery. It is helping me have a better idea at what I have to face, but boy have I got a lot of questions for my COPD healthcare team. Here is one persons story. http://www.copd-international.com/Library/Patient_story-continues.htm
I've noticed my anxiety attacks are getting more frequent despite the recent news. I'm not sure what is setting them off. The last few evenings they have been happening just before I lie down to sleep when I have no anxiety about moving and being out of breath. It would be nice to get to the bottom of this, they are horrible and very disabling. I am going for my 3rd appointment with Emma at the Health Centre tomorrow morning regarding this problem. Lets hope the weather is kind and I could do with getting out and having some fresh air, it has been 5 days since I did that.
As the title of this post suggests this is my first day.
Sunday, November 1, 2009
Hope
I have been living with this disease for so long now that I have been giving up all hope of living much longer.
This past week I was given a glimmer of hope back. It is like winning the lottery. In fact it is better than winning the lottery as you cannot put a price on life.
I have been told that there is a chance of a Lung Transplant. It is subject to a lot of tests and me being smoke free for at least 6mths.
I want this soooooooo much, so this is the start of my battle to achieve this. If I lose then I lose my life so here goes, fingers crossed.
I will be posting my day to day hopes, fears, achievements and setbacks and everything in between.
This past week I was given a glimmer of hope back. It is like winning the lottery. In fact it is better than winning the lottery as you cannot put a price on life.
I have been told that there is a chance of a Lung Transplant. It is subject to a lot of tests and me being smoke free for at least 6mths.
I want this soooooooo much, so this is the start of my battle to achieve this. If I lose then I lose my life so here goes, fingers crossed.
I will be posting my day to day hopes, fears, achievements and setbacks and everything in between.
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