It’s Summer, Why Can't You Come Out and Play?
It’s here, my favorite time of year! The time of year that makes me miserable. Yes, that is quite a contradiction. In one or two of my articles, I have talked about the seasons and the effect they have on my breathing. The impact is multi-layered, though. Different seasons bring different aspects to light. I find I get more questions about why I can’t do what everyone else is doing in summer more so than any other time of year.
Misunderstanding my asthma
We talk about how people misunderstand what it means to have asthma. I think it becomes more obvious in summer. It is a time of year when we are outdoors, seeing more people, being more active. Some of the things people say make me want to rip our my hair with frustration. People tell me that I will feel better now that the weather is warmer. I hear about how I should open my windows and get fresh air in my house.
I live in a coastal community, but I can’t go to the beach very often in summer because of humidity and heat. Walking across hot sand is not ideal for someone with asthma and diminished lung capacity (I only have one healthy lung). So people assume that I don’t like the beach. Nothing could be further from the truth.
Some think they know better, know what I need. I have been told to stop my meds because they might be the problem. This was not a medical professional or a person with asthma experience. The hair wanted to voluntarily jump out of my head that day.
Things aren't always as they appear
Part of the problem is that I don’t look compromised. It is something that I am sure a lot of us with chronic illnesses deal with regularly. I don’t look like I have any problems--but, if you know what to look for, you see it immediately. My doctor recently told me during our appointment that if people just watch me breathe or listen carefully to how I talk, they can immediately see how hard I work to breathe.
For the most part though, who knows what to look for? Looking at me, you don’t see an inflamed, twitchy, floppy trachea, you don’t see inflammation in my small airways, you don’t see that there is only one functioning lung, or vocal cords that spasm regularly. You don’t see any of that, so you think there is nothing wrong and I should be able to do just about anything. You don’t know that when I walk up a flight of steps without having to take a break I feel like I just won a gold medal.
Keep your friends close
I try to stay focused on the people closest to me who try to understand my asthma and realize what aspects they misunderstand. I have people close to me that are supportive and concerned and even participate in my health journey. I am active within the limits of my asthma/lung issues. But, to most, I just look active. I walk regularly, some days not very far. Sometimes I am exhausted for days after I walk. But I know the importance of activity regardless of how hard it is or how tired I’ll be afterward.
One friend recently asked how I managed to stay as active as I do when it is so exhausting to breathe. I honestly feel I am able to do what I do BECAUSE I do what I do. If I gave in to the exhaustion, if I set my limits too low, if I didn’t continue to be diligent about remaining active, I’d lose ground so rapidly and then negatively impact my health even further.
Overcoming misunderstanding of my asthma
I decided that this summer when people tell me things they think they know about my asthma, or my health, or medications, instead of pulling my hair out of my head, I’ll take a breath. If it’s worth the breath, I’ll try to explain what they are misunderstanding about asthma. Some people will hear me. As with anything in life, educating ourselves in matters we don’t understand is always a step in the right direction.
Have you ever gotten "moon face" as a side effect of prednisone?