You Don't Look Sick

I want to thank a few of you members from our forums who reminded me of how this feels. I think we all have been through this, but it would be so beneficial for some of our friends, family, or coworkers to read about it.

A glimpse into a typical day

I have heard and read about other COPD and Alpha-1 patients over the years who have said that they had heard this from others before. I have never had anyone say it to me personally, but I have felt it from some.

If they could only walk in our shoes for a day, right? They wouldn’t even want to finish a day in our shoes.

What is a typical day in the life of someone with COPD? Remember that we are all in different stages of this disease, so everyone's day will look a little different.

My day starts with the bathroom first if I can make it there without a breathing treatment. Some days I can, and some, I can not.

On the good days that I have, I will get washed up and dressed for the day while I’m in the bathroom. On bad days, I just go out and do all of my meds first thing.

Daily medications and exercise routine

This includes two breathing treatments. Albuterol is the first to open up my airways, followed by Sodium Chloride Solution, which helps me bring up excess mucus that I have to keep infections out of my lungs.

I then take my first inhalation med Spiriva which is a long-term, once-a-day med to control symptoms of COPD by relaxing the airways and keeping them open. I then take Symbacort, which is an inhaled glucosteroid and long-acting beta-2 agonist taken two times a day that can treat both asthma and COPD by reducing the irritation and swelling of the airways.

I take other meds for RA and some vitamins, and that morning routine takes at least half an hour. When I am done with that, I try to loosen up my stiffness by feeding the dog and doing the daily housework that needs to be done.

On most days, I try to ride my exercise bike for 10 miles. On other days, I will do some arm exercises or ty chi. What I have left out during this time are all the times that I have to stop and catch my breath for a few minutes and try to get back to my daily routine.

Most of the time, we have no energy and don’t feel like doing most of this, but we know we must keep moving. If we don’t move it, we lose it!!

The challenges of being misunderstood

I normally do some follow-up work that day on my Alpha 1 support group or do some writing or moderating here at COPD.net. On other days I have my grandkids and enjoy my time with them. The rest of the day is usually spent making supper and TV time with my husband after he gets home from work.

My routine sounds easy when writing it and reading it back, but some without COPD might not understand just how tiring catching your breath all day is. This is just a typical day also, not a day where I have to get out and prepare to go anywhere.

That is like packing a diaper bag when your kids were babies. It is unpredictable what you would need in a particular outing. It’s exhausting!!

I remember before I got my oxygen, I had a handicapped parking sticker because of my COPD. I also have RA, but you can’t really see that until the crippling begins with that. Well, it has started but is hidden because of my clothes.

I got stared at often. There I was, 40 years old and parking in a handicapped parking place, and from the outside, I looked like I had nothing wrong with me.

The stares and glares I got. If looks could kill, I think I would be dead. One of the things that I was happy about when I was finally prescribed oxygen is that now, hopefully, everyone could see why I parked in the handicapped parking space.

The importance of raising awareness for invisible disabilities

They still look at me but then notice the oxygen and turn their head quickly like… I wasn’t giving you a dirty look for parking there. I eventually had a moment when a man at a ballpark walked in behind me, and I had just gotten out of my van that I had parked in a handicapped space. He said… “you can’t park there.”

I turned around with oxygen on my face, and the look on his face was priceless. He began to stutter and then said, “I’m so sorry, I didn’t know.” I told him that you never know what someone is going through; not all disabilities are visible.

I think maybe if everyone could see what our lungs looked like and know what our lung function was, they might be able to see that we really do look sick. We just hide it very well.

Do you have any questions or comments about this topic? Feel free to post in the comments below.