Planning and Preparing: A Social Life with COPD

In my last article, “Having A Social Life With COPD”, the focus was on things that can affect us, such as scented products. In this article, we will discuss the challenge we face just to get ready to go somewhere or even to have people in. The planning and preparations can be tiring before we even begin. Most of these things will be understood by a person in stages 2-4. Those in stage 1 and possibly stage 2 might not have experienced these yet.

A few days before my planned outing or company, sometimes I need to stop. We all possibly need to be sure that we aren’t doing anything that is going to trigger a reaction or an exacerbation. For some though, that isn’t an issue.

We all experience things differently. We are all unique in our own disease.

What works best for you?

Many people that I have talked with struggle just to shower and wash their hair. We often don’t think about those things. Physically it can be so tiring and such hard work. Breathing in that hot or warm steamy water can bring on a feeling of suffocating or even drowning. It’s so important to have your exhaust fan on. If you don’t have one of them, open your bathroom door or window before showering.
 A chair in the shower can really help so you can sit and wash, without fear of falling.

Now a bigger challenge: getting dressed and doing your hair. It helps to have someone that can help dry you off and get you dressed. It’s so important that you take your time.

At this point I’m about ready to climb back into bed, how about you? On tough days, this is a good time for me to use my inhaler and just remember to breathe. Are you familiar with pursed lip breathing? This is a breathing exercise can help you to regulate your breathing, to keep your airway open, to relax, to help you when you are anxious, and to eliminate carbon dioxide. Slowly, breathe in through the nose counting 1,2; breathe out through the mouth 3, 4, 5 or slowly smell the roses 1, 2 then blow out the candles 3, 4, 5. Do this whenever you feel a need. Practice often.

Are you ready for your outing? Be sure to think of things that you might need. Whenever I go anywhere I have a go-bag with my Pro-Air inhaler, Albuterol and nebulizer, extension cord, Sinus Rinse, wash cloth to wash face and eyes if needed, facial tissue, medications, epi pens, snack bar, cell phone and charger, and some cash. I always have my medical/medications list in my purse and bag, so they are easily found. I’m sure you can think of other things. My bag is always ready to go. I also carry a change of clothes. When I get updated meds or products, I replace them with the items already in my bag, so that I am always using the older items first. For overnights, it’s extra things because I’m taking my oxygen concentrator and c-pap as well. By planning for these things and having them ready,  I never have to worry about them. This is a big deal; without these things, I could be in trouble.

Why do we get so tired? Is this stressful for you? Does the thought of going someplace wear you out, even before you go? Does being in a group of people cause you to feel overwhelmed? Do your oxygen levels decrease? These things, quite a few COPDers go through. Somedays aren’t bad and somedays can be overwhelming.

Any time you travel, it’s important to stop every so often, to get out of the car and walk for a little while.

Your circulation is so important. I hope you have a bottle of water with you as well. It’s so easy to get dehydrated. Be sure to drink your water. Even if it causes an extra stop to use a restroom, it’s worth it. It’s also another excuse to get out and stretch. Make sure that you have an inhaler in your pocket or purse, you never know when you will need them. It seems that with all of the different temperatures and quality of air that we encounter, it can be a struggle with breathing, a response of coughing and even hoarseness. If things are scented and/or chemically enhanced, that might affect you also. Because of different temps, be sure to carry a sweater, regardless of current temp. Between the air conditioning and outside air, it’s easy to get a chill. If you don’t need it now, you might later.

Do you carry a hand sanitizer or soap that you can tolerate?

Be sure to wash your hands regardless. There is a 20 second rule. Put soap in your hands and wash them for a full 20 seconds. They ask your medical team to wash like this and it’s so much healthier for you to do it too. Some will use towelettes or something similar to wipe down shopping carts, tables in a restaurant, and other things.

Are you shopping or going to a restaurant?

If you have your handicapped sticker or placard for your vehicle, do you park in the handicapped parking space? Do you find that people make faces at you or even make snide comments? Remember, you have an invisible illness. Unless you are wearing oxygen, using a walker, or similar things, people usually don’t see you as needing a handicapped parking space. Try not to feel bad or even angry. You would be right with those feelings, but they will only affect your breathing.

Hopefully the more we talk about COPD and write about it, people will become more educated about COPD and more understanding.

You made it into the store. Usually they have a couple of riding carts, but you aren’t seeing any. You can ask at customer service if they have any available in another part of the store and the rep will likely shrug his/her shoulders. You grab a push cart to help steady you while you search for a cart and you see two carts, both are being used by older kids. You ask them if you could use one and they smile and drive off. You ask their parents. The parent looks you up and down, then walks away. You hear the comments “she needs to walk that fat off, not be so lazy and ride on a cart” or “There is nothing wrong with him, just look. I can’t believe people these days!” I know some people that have had to go home and come back later to use a cart. They never would have been able to walk through the store. Again, we need to educate people. Sadly though, some will never see unless they were experiencing something as well.

Are we there yet?

If you are visiting others, hopefully you can say your hello’s and take a few minutes to relax. It can be so nice to get out and to be around people! If you find that you struggle, can you lay down and rest? Drink a cool glass of water. Cool, not ice cold. Sometimes the ice cold can trigger bronchospasms. Enjoy your drink and take your time. If you need a snack, don’t hesitate to ask. Know where you should go to neb and do your medications, if you prefer to do these in privacy. I like to give my camera to one of my grandchildren and have them take pictures. One time at my mom’s, I announced that as people came, we would do selfies! Everyone had fun and the pictures will provide wonderful memories for all.

When it’s time to leave, take your time.

It would be nice when you get home to be able to rest and do any self-care you need to do. If you got groceries, hopefully someone is there to carry them in for you. If not, recruit one of the neighbor kids or even the adult next door.

Maybe you have company coming to your house. I find that people want to help, so designate chores!

Have them help with the snacks, meals and anything else. Then you sit back and enjoy. I hope it’s like that for you. My family has finally seen my struggles and I enjoy the spoiling. I know that some don’t have it like that and I am truly sorry. It was like that for me for some time. I learned to ask and to let them see the real me, instead of trying to cover up my need for an inhaler, even to go lay down. When they leave, there might be straightening up to do. Take your time.

Sadly, unless people experience COPD or other lung ailment, they probably won’t see it or even understand. Years ago, when I was a brand new EMT and working for an ambulance service, a lady was in a car accident. We had gotten her out of her car and on a backboard. She kept asking for her inhaler, that she “needed”. I found it and gave it to her. She was talking fine, wasn’t wheezing, and didn’t really seem short of breath, yet she “needed” it. I still couldn’t understand why. She wasn’t struggling. Some years later, I was diagnosed with exercise induced asthma and a couple of years later, with COPD. I “needed” my inhaler because I was struggling to breath. I was talking ok, I wasn’t wheezing, but I “knew” I was struggling. To this day I will never forget the lady who needed the inhaler and I’m grateful that when she asked I was able to find it and give it to her. You see, she had an invisible illness of COPD, she was struggling, but I couldn’t “see”.

She taught me that day to never go by sight alone, listen as well. After that day I realized the need to share and educate. That lady taught me that “having a social life with COPD” can be full of challenges and misunderstandings. We can have our plan A that all is going to be ok, yet we should have our plan B in case things don’t go as they should.