I was fast asleep in the wee hours. I went to take a breath and could not. I tried again, only to be met with a sound that I will describe as a squeaky toy. I bolted upright and tried again, pretty much in a full panic.
By some miracle, air entered my lungs. I was in the middle of breathing and not breathing.
I would like to say that it was my first episode. But I had four of these episodes in one night a little over a month ago. That night sticks in my mind because I was afraid to go back to sleep after the second time. I was in the middle of resting and being too afraid to rest.
I don’t have asthma, but my symptoms are very similar to those of an asthma attack. It’s no secret that lupus attacked my lungs. I cough constantly, and some days I have difficulty breathing. Now there are moments when air evades me almost completely.
It is interesting the way our bodies are connected. The day after I have one of these episodes, my entire body is in pain. I struggle to walk and move my extremities. Trying to get a good breath can take a significant toll on your body, which amazes me.
When I woke up, I lay in bed and realized that I am living my life in the middle of things I mistakenly thought I controlled. I can take my medications, but they do not prevent new symptoms from developing. They do not stop the pain. They do not stop the things that happen in the middle of an illness when you are battling your body.
I often have my worst coughing fits in the middle of a conversation or a good laugh. Dizzy spells and headaches accompany the fits. Sometimes the force of my coughs causes major stomach contractions that make me vomit. Again, my life is in the middle. I’m caught between wondering whether I should eat or not. Should I give my body the incentive to expel my meals?
We take a lot for granted when we are considered healthy. We think we are in control, but we have never been, and we never will be — at least, not in the way we want to.
In other columns, I have discussed the stages of grief. I am realizing that, while many people may not be grieving, they are stuck in denial. I can recognize that I have done a lot today, but I have no clue how my level of activity will affect me later. I am in the middle, stuck in a place where I have to deal with whatever comes. You have no control over the outcome when you are in that place, which is hard to accept.
When you’re in the middle of not being able to breathe, your life flashes before your eyes. I managed to get air in my lungs, but what if I had failed? That question prompted some deep thoughts and pushed me to review who has access to my passwords, my bank account information, and my emergency contact information. I live abroad, so when I woke up, I asked friends if they were willing to contact my family if something happens that I can’t recover from and take care of things until my relatives arrive.
I am in the middle of a battle that I take for granted at times. On the good days, I think I’m making progress. Then a setback occurs, and I realize that I am in the middle of the good and the bad.
I’m working on accepting where I am (that’s a stage of grief, too), and I think I’m getting there. This life in the middle is more difficult than I’d like to admit, but once I realize that we are all in the middle, it becomes easier to cope.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.
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