“Pick yourself up, dust yourself off and start all over again!”
These are the words of a fairly old song. They have been resonating in my head all day long today.
I do wish emergency professionals would respect that you know what your chronic illness is and what it does when it goes out of control!
I am trying to pick myself up after being told, “I can’t hear anything in your lungs. Are you stressed? Asthma and panic attacks are very similar. Maybe it’s a panic attack!”
Was this nice-looking, young (compared to me) doctor trying to tell me this was all in my head? I really don’t need to hear that! It doesn’t actually help me one iota! I don’t care if he can’t hear wheezing (my major chronic illness is asthma). I have never ever wheezed! But my peak air flow drops low. I have a tight band pressing in on my lungs. I can’t get enough air. I feel dreadful. I feel exhausted. I look as pale as a ghost. I can’t talk properly. Isn’t that enough?
Who in their right mind will front up to the hospital’s emergency department on a Saturday evening? Well, it isn’t my choice of where I want to be on a Saturday night! Doesn’t the doctor understand that even deciding to go to the hospital is a big deal for me?
I read my asthma plan, I checked my oxygen levels and my peak flow. I tried to breathe deeply. I tried to be calm. All the literature says, “Go to emergency if your breathing isn’t improving.” It’s safer there than at home! So, that’s what I did.
I am 68 years old. I have had asthma for three years. None of my children have asthma. I have never been around anyone with asthma. It is fairly new territory for me and my husband.
I know my body’s signs of impending problems quite well now! I can feel it in my chest! I now know how quickly an asthma attack can escalate. It becomes extremely frightening very quickly. And yes, being unable to breathe does bring panic! The panic is an effect of the asthma, not the cause.
Last night, I had already had 40 puffs of my salbutamol reliever in one hour… That’s doing what my asthma plan says. And, I was already finishing a course of prednisone. It was getting harder and harder to breathe and I was starting to cough! I prevaricated for another 20 minutes and then decided to go to the hospital…a 15-to-20-minute drive away. I did consider calling an ambulance too.
After waiting 20 minutes in the waiting room, my breathing was starting to calm down having had another four puffs of salbutamol! So, I guess the crisis was starting to pass. There were no beds available and no chairs available so they couldn’t put me on a nebulizer. That’s why I went to the hospital – I knew a nebulizer would really help me. After 20 minutes they took me to the inner sanctum of emergency medicine. I got hooked up to monitors. No nebulizer.
After about four hours we came home. It cost $200 (Australian) to have an earnest conversation about how my oxygen saturation, pulse and blood pressure were staying fine so maybe I was just stressed and panicking, maybe I hadn’t had an asthma flare-up! The doctor said he could find no signs of asthma.
No, doctor, you are wrong! I do have asthma. Yes, it was an asthma attack! My lung specialist has never heard a wheeze either, but the spirometry tests show I have asthma! Yes, after three hours my breathing had stabilized. After a huge amount of salbutamol too… Enough to give me the shakes, keep me awake all night and give me a massive headache!
I have spent today very quietly. My head has been dwelling on what happened. I am constantly questioning myself. Today, my peak air flow has been below 300 all day… That means I need to be cautious regarding any activities I do. I have felt off all day and extremely tired too. My chest is still tight, I am still extremely short of breath.
But, the very earnest conversation has left me feeling really low. I feel I have to rebuild myself. I feel despondent and incapable.
It has shaken my ability to believe I can manage this illness. I feel I can’t trust myself. Mind you, this doctor was kind and reassuring about coming to the hospital. “It is the right thing to do when you can’t breathe.” But I left there thinking it must be “in my head.” This is not a nice way to feel.
I have had to work so hard to accept all the limitations asthma has brought into my life, emotional and physical. This has been quite a big setback for me. I must dust myself off and get going again. But how do you do this? The emergency doctor has immense power and authority and I am giving him more credence than I am giving my own body and my own experiences!
But, I am not very confident in my judgment now. I am not sure of how I will be able to make that decision to go to the hospital or not to go next time! Today I feel very reluctant to go back there when I am in trouble.
How do others deal with these sorts of setbacks? How do I regain some confidence in my judgment of my body?
We want to hear your story. Become a Mighty contributor here.
Thinkstock photo via tetmc.