Suddenly, I started to have shortness of breath again. I borrow my friends’ words to explain how it feels: “it feels like breathing through a thick wall” and “elephant trying to balance on one foot on my chest”.
When I talked with Dr TL on Wednesday, he noted my chest was tight. Then, something finally clicked in my head that I’m having asthma flare up. He asked if I had other symptoms. While I was answering, I also realised that those symptoms can be caused by asthma because of lack of oxygen in the system. Then, I realised that I can finally identify the symptom “tight chest”.
I’ve been taking controller and reliever medicine and didn’t notice shortness of breath for quite some time. I thought it was just temporary condition. Then, WHAM! It’s here again. I have no idea what triggered it. And what is different now.
So monitoring peak expiratory flow is added to our twice a week appointments.
Last year, when I tried spirometry with a nurse, it didn’t go well. The machine didn’t register anything because I was too weak, and the nurse was getting agitated by me not being able to produce the record. It made me feel almost panicked. I tried, tried and tried really hard. Then, I was told I didn’t have any lung capacity at all. Mind you, I did my best despite of feeling passing out and had to lie down with hyperventilation and dizziness after each attempt. I had to stay lying in the bed long after the test was finished while the nurse was busy organising her new office around me.
Dr TL showed me a plastic gadget to monitor my lung capacity. I cannot quite remember what he calls this little gadget, but I guess it is something like peak flow meter. I stand up. Take a full breath in, and then blow all air out in one strong breath. He encouraged me that I do better than last year. So I asked if the record was good. He hesitated and said that the reading wasn’t good, but I am better than last year. Then, we tried it after I take Ventoline, the asthma reliever medicine, and compare the record. The result is always little better after the Ventoline.
I asked a few questions. And I now know that asthma can make blood pressure higher and asthma can be seasonal.
He was very careful choosing words when explain relation between asthma and ME/CFS. He was not denying ME/CFS. At the same time, he needed to address the importance of asthma management. What I know is that there is no clear line between asthma and ME/CFS and we just need to treat symptoms.
The shortness of breath is much worse during the night. Somehow, I have been enlightened about my asthma. It probably because ME/CFS is less severe than last year, therefore I can notice it really bad when asthma flares up. When ME/CFS was very severe, the flare up of asthma wasn’t really noticeable because of the other symptoms I already had were bad.
I keep spacer and reliever medicine next to pillow so that I can reach them whenever necessary. At the moment, I need them almost every hour during the night. During the day, I still feel tightness of chest, but breathing is not so much struggle. And I’m also advised to use the reliever medicine just before I do my daily exercise at night. One thing I can tell is that it is wonderful that there is medicine and proven treatment for the symptom.
Dr TL told me again a story of one of his patients who had been diagnosed with CFS. He found that she had asthma and treated her. She was house bound for 10 years, and was very angry she wasted 10 years believing she had CFS. According to Dr TL, she is now having a normal life. Story like this makes me think deeper. There are lots of what if. And I’m envy that she only lost 10 years and has normal life now. Would I be the case, too? How long did she had asthma treatment before she started feeling better? How severe was she while she was house bound? Did she use wheelchair as well?
Dr TL’s voice brought me back to the reality. He said that was the reason why he tries everything. He is really open minded and takes each symptom seriously. He tests and observes condition by himself.
On Saturday, he kept reminding me how well I was doing.
He also explained why I cannot receive community home assist services, home physio therapy and so on. If I had treated for heart attack or stroke at hospital, they would organise allied health support at home for me. I’ve never treated at hospital and I strongly hope I don’t need hospital treatment. I’m guessing my neighbour friends asked him to refer to me the services. His news wasn’t surprise or disappointment at all, as I didn’t expect any help from government. I’m grateful that I receive Disability Support Pension so that I can survive and Centrelink is leaving me alone at the moment so that I have a little more chance to improve. And I’m even more grateful for my current GP who does everything in his capacity to make my life less hard. I’m not complaining how things are. And I’m not demanding anything. I’m happy that I have peace, freedom and my GP.
His primary job would be to keep me away from hospital or nursing home. Whenever I hear about going to nursing home while I’m still young, I hope I will get euthanasia. In a meantime, I’m improving. Therefore I don’t need to worry about it for now.
At the moment, I’m not making significant improvement, or deterioration. So there isn’t much to talk about. When he can, Dr TL continues explain things the way I can understand with humours and interesting stories. For example, relations between the kidney functions, water retention, salt retention in kidney, oedema, heat and female concern about shoes. He explains the complicated science as if he was telling me a story.
On Saturday, there was noise outside of his office. They were putting the new carpet and there were trades people talking loud and making noise. And my cognitive function wasn’t good enough to erase the noise from my brain so that I could concentrate…
We really don’t know what causes my condition. And there is no magic medicine to make me healthy and able body again. But I’m grateful that he treats me whatever it’s possible and cheers me up to stay positive.
I want to ask him how much more I would improve. Somehow I feel this is the question I should not ask. There is no answer to it. Nobody can tell about my future. Uncertainty in the future frustrates me… However, uncertainty is still better than guarantee for deterioration… We just try one thing at a time. If it works, we stick to it. If not, we will find something else. I guess it is a time for patience. Things are good because I’m showing some improvement.
Posted in Asthma, Doctors, ME/CFS, Thoughts
Suddenly, I started to have shortness of breath again. I borrow my friends’ words to explain how it feels: “it feels like breathing through a thick wall” and “elephant trying to balance on one foot on my chest”.
When I talked with Dr TL on Wednesday, he noted my chest was tight. Then, something finally clicked in my head that I’m having asthma flare up. He asked if I had other symptoms. While I was answering, I also realised that those symptoms can be caused by asthma because of lack of oxygen in the system. Then, I realised that I can finally identify the symptom “tight chest”.
I’ve been taking controller and reliever medicine and didn’t notice shortness of breath for quite some time. I thought it was just temporary condition. Then, WHAM! It’s here again. I have no idea what triggered it. And what is different now.
So monitoring peak expiratory flow is added to our twice a week appointments.
Last year, when I tried spirometry with a nurse, it didn’t go well. The machine didn’t register anything because I was too weak, and the nurse was getting agitated by me not being able to produce the record. It made me feel almost panicked. I tried, tried and tried really hard. Then, I was told I didn’t have any lung capacity at all. Mind you, I did my best despite of feeling passing out and had to lie down with hyperventilation and dizziness after each attempt. I had to stay lying in the bed long after the test was finished while the nurse was busy organising her new office around me.
Dr TL showed me a plastic gadget to monitor my lung capacity. I cannot quite remember what he calls this little gadget, but I guess it is something like peak flow meter. I stand up. Take a full breath in, and then blow all air out in one strong breath. He encouraged me that I do better than last year. So I asked if the record was good. He hesitated and said that the reading wasn’t good, but I am better than last year. Then, we tried it after I take Ventoline, the asthma reliever medicine, and compare the record. The result is always little better after the Ventoline.
I asked a few questions. And I now know that asthma can make blood pressure higher and asthma can be seasonal.
He was very careful choosing words when explain relation between asthma and ME/CFS. He was not denying ME/CFS. At the same time, he needed to address the importance of asthma management. What I know is that there is no clear line between asthma and ME/CFS and we just need to treat symptoms.
The shortness of breath is much worse during the night. Somehow, I have been enlightened about my asthma. It probably because ME/CFS is less severe than last year, therefore I can notice it really bad when asthma flares up. When ME/CFS was very severe, the flare up of asthma wasn’t really noticeable because of the other symptoms I already had were bad.
I keep spacer and reliever medicine next to pillow so that I can reach them whenever necessary. At the moment, I need them almost every hour during the night. During the day, I still feel tightness of chest, but breathing is not so much struggle. And I’m also advised to use the reliever medicine just before I do my daily exercise at night. One thing I can tell is that it is wonderful that there is medicine and proven treatment for the symptom.
Dr TL told me again a story of one of his patients who had been diagnosed with CFS. He found that she had asthma and treated her. She was house bound for 10 years, and was very angry she wasted 10 years believing she had CFS. According to Dr TL, she is now having a normal life. Story like this makes me think deeper. There are lots of what if. And I’m envy that she only lost 10 years and has normal life now. Would I be the case, too? How long did she had asthma treatment before she started feeling better? How severe was she while she was house bound? Did she use wheelchair as well?
Dr TL’s voice brought me back to the reality. He said that was the reason why he tries everything. He is really open minded and takes each symptom seriously. He tests and observes condition by himself.
On Saturday, he kept reminding me how well I was doing.
He also explained why I cannot receive community home assist services, home physio therapy and so on. If I had treated for heart attack or stroke at hospital, they would organise allied health support at home for me. I’ve never treated at hospital and I strongly hope I don’t need hospital treatment. I’m guessing my neighbour friends asked him to refer to me the services. His news wasn’t surprise or disappointment at all, as I didn’t expect any help from government. I’m grateful that I receive Disability Support Pension so that I can survive and Centrelink is leaving me alone at the moment so that I have a little more chance to improve. And I’m even more grateful for my current GP who does everything in his capacity to make my life less hard. I’m not complaining how things are. And I’m not demanding anything. I’m happy that I have peace, freedom and my GP.
His primary job would be to keep me away from hospital or nursing home. Whenever I hear about going to nursing home while I’m still young, I hope I will get euthanasia. In a meantime, I’m improving. Therefore I don’t need to worry about it for now.
At the moment, I’m not making significant improvement, or deterioration. So there isn’t much to talk about. When he can, Dr TL continues explain things the way I can understand with humours and interesting stories. For example, relations between the kidney functions, water retention, salt retention in kidney, oedema, heat and female concern about shoes. He explains the complicated science as if he was telling me a story.
On Saturday, there was noise outside of his office. They were putting the new carpet and there were trades people talking loud and making noise. And my cognitive function wasn’t good enough to erase the noise from my brain so that I could concentrate…
We really don’t know what causes my condition. And there is no magic medicine to make me healthy and able body again. But I’m grateful that he treats me whatever it’s possible and cheers me up to stay positive.
I want to ask him how much more I would improve. Somehow I feel this is the question I should not ask. There is no answer to it. Nobody can tell about my future. Uncertainty in the future frustrates me… However, uncertainty is still better than guarantee for deterioration… We just try one thing at a time. If it works, we stick to it. If not, we will find something else. I guess it is a time for patience. Things are good because I’m showing some improvement.
Posted in Asthma, Doctors, ME/CFS, Thoughts