A Day in the Life with COPD
Hi, I am going to welcome you to my life for the day with the hope you will understand that you can still live a fairly normal life with COPD. First let me introduce myself to those of you who don't know anything about me: I'm the 69-year-old woman who lives alone, I have stage 4 COPD compounded by Asthma, CHF, hereditary panic disorder and a few other things. I am maxed out on meds, and at this time there is no new medication, current procedure that will have any effect on my condition. According to all the doctors, I shouldn't even be alive. But live I do and although it's at a much slower pace and there are a lot of things I can't do, I do what I can and don't let my COPD control my life. "I am master of my life". There are not as many pictures of me before and after the ones my step daughter Susan took as I'd like but, I have an old flip-open cell and I'm not use to taking selfies.
So let's get our day started.
Starting the day with medication
I wake up every morning between 7:30-8:30. Today when I look at the clock it's 7:55. The first thing I do when I wake up, before I even opened my eyes, I said " thank you God for seeing me through the night and blessing me with another day", then I go to the bathroom. Next thing on my agenda is morning medication which consists of 2 pills my CFH, (chronic heart failure), Omeprazole for my GERD, Bisacodyl for my Irritable Bowel Syndrome and vitamin D , Brovana and Budesonide in my nebulizer for my COPD which takes me about 30 minute and Spiriva. This morning I'm extremely tired since I didn't get to bed till three so I'll lay back for a few minutes and think about what I have to do today. Well seems a few minutes turned into a few hours because now when I look at the clock it's 10:30. Even though I got the extra rest I'm still tired, but my step daughter and grandson are coming over to take me out to lunch and do some shopping so I have to get up.
Morning meds and me taking nebulizer treatment.
Energy to get dressed
If I hadn't fallen back to sleep, and wasn't feeling so tired, I would have plenty of time to get washed, do my makeup and hair. Instead I barely have time to get dressed brush my teeth and comb my hair. You see getting dressed alone takes me at least 45 minutes. I have to rest in between each step I take when getting dressed. What is very normal for an average person something like taking off my nightgown, causes me to become SOB (short of breath), if I don't stop and catch my breath before I put my bra and shirt on, I will become so SOB not only will my breathing stats drop, my heart rate escalates to a dangerous point. So this is what I do: take off my nightgown, rest for five minutes, put on my bra, rest 10 minutes, put on my top rest for five minutes - the cycles of do something then rest goes on the whole entire time I'm getting dressed or do anything at all. It is part of having severe COPD, you get used to it. I've learned over the years that doing things slowly and resting in between gets the job done with the least amount of SOB and stress.
Since I am already feeling tired, (which also comes with having COPD, you have your good days and your bad days), today I wear no makeup, and I have just run a comb through my hair. On good days I would never go out without makeup or a wig, and that is the first thing my grandson says when he sees me. First he thinks I don't feel well enough to go and when I tell him I am going, he can't believe I'm going out without a wig and makeup on. I let him know having the energy to go out with him and his mom means more to me than what I look like. Besides I knew I was going to do this article and give you all a look into my life, and I wanted you to see the real me. The way I look in the pictures is the way I look in everyday life no makeup and straggly hair.
Now that Michael and Susan are here, time to switch from my home oxygen unit onto my portable. Michael just got his learning permit and asks if he can drive the van, (we always go out in my van because it is equipped for my needs). I tell him if his mother says okay, it's all right with me as long as he follows the rules of the road. Whenever I've gone out with Michael before I've driven. This time I can just sit back and rest while he drives. One other thing I did 15 minutes before I left the house, I took a Xanax. I always take a Xanax before I go out. No matter how low my oxygen get the Xanax keeps my nerves calm till I bring my oxygen level back up.
Restaurants and groceries
We drive to the restaurant and Michael did a really good job. He did have to back out of the parking spot twice and pull back in again but, he finally got it right. When I go into restaurants I always walk (instead of using my scooter), when we get inside I asked the hostess for the table closest to where I'm standing at that particular moment. By the time I walked into the restaurant I'm so SOB, I never have a problem with them accommodating me. Once we're seated I order a drink then I use my oximeter to check my oxygen level, it's at 86, I start pursed- lip breathing to bring it back up to where it should be, which for me is 95/96 at rest. 10 minutes later I'm back to where I should be, lunch ordered and enjoying a drink. Michael loves going out to lunch with me, I let him order anything he wants no restrictions (except he's not old enough to drink alcohol). Lunch is very enjoyable and relaxed, we spend about an hour and a half having lunch and visiting before we head to shopping.
Checking my oxygen level, the rest are of Susan, Michael and I enjoying lunch. In the one where I'm pointing to my arm, I'm explaining to Michael why my arm is all bruised.
We're going to the Dollar Tree, they have a selection of frozen food I like to get that can be cooked in a microwave or toaster oven and are packaged with one person in mind. However the Dollar Tree doesn't have the shopping scooters, and when I asked Michael to get mine out of the van, we find out the battery's dead. That means I'm going to have to walk around the store, that's going to make our shopping trip twice as long. Because just like with the dressing, it's go down an aisle stop and rest, reaching or getting something off the shelf stop and rest. When you have COPD as severe as mine, compounded by my CHF, every little thing you do make you SOB. When it's just Michael and I he stays with me the whole time getting things off the shelves and out of the freezers. Today since I'm pushing the cart I do it myself and Susan is nearby if I need any help. The reason you don't see Susan is because she is the one taking these pictures. While in the Dollar tree, Michael walks over to Kmart because he wants to get a Halloween costume for a school function. And as you can see from the pictures, I make out on my own just fine. I know my oxygen level is low, but I don't check my stat in the store. The full impact of my breathing and walking around the store will not hit me till I get into my van and sit down. After we finished shopping and I go out to the van and get seated I take out my oximeter to check my stats, as the picture shows my oxygen level is at 73. It's at times like these I'm thankful I took the Xanax before I left the house. When I go shopping alone, or when I have to drive, it takes me at least 15 minutes once I get in the van before I catch my breath enough to drive. Today I can just concentrate on bring my stats back up and let Michael drive us home.
Shopping and checking my stats after getting in van.
Stairs and scooters
Once I get back to the house, the hardest part of this whole day's outing takes place. It is walking from my van up the steps into my apartment. The are only three steps I have to walk up, but I know walking up those steps are not only going to make me extremely SOB, but, send my heart into overdrive. I have to walk up one step at a time, putting both feet on one step before I can take the next. I also use the rail to help pull me up from one step to the next. Susan goes ahead of me and unlock and opens the door. When I go out alone I never lock my door, because by the time I get to the top landing I wouldn't have the strength to unlock it. Once I get inside I collapse on the chair, (which is three steps from my front door). I have to calm my heart down before I even get out my oximeter to check my stats. The picture of me with my eyes closed and head up, that's me praying to God for His help in getting my heart under control so I don't go into cardiac arrest. The reality of COPD is very few people actually die from it. Most die of related diseases such as chronic heart failure. My praying brings me peace so I can get out my oximeter, check my oxygen stats, and I start pursed-lip breathing to bring up my oxygen level and my heart rate down. While working on my breathing and heart stats, Susan and Michael put away all my groceries. They know that the best thing to do is leave me alone till I catch my breath, so I can go to the bathroom, come out catch my breath again and start talking.
See how short the steps are, but when I get in the house I'm very SOB and my heart is pounding. So I say my prayer and with God's help get my heart and breathing under control.
After about 20 minutes I'm back to normal again and Susan and I can have a visit while Michael puts the doors back on my bathroom cabinet that he took off and helped me paint a few days earlier. He has a hard time getting the knobs back on so he brings the door to me with the toolbox and I have to show him what to do.
After he gets done with the doors, he comes out wearing the Halloween costume he bought. He want me to see what he got with the money I "lent", lol, him. He's a big yellow banana, I get a big hug and I love you grandma, thanks grandma, he know I don't ever make him pay me back.
Helping Michael with door, and a hug from the banana. Sitting in my favorite position relaxing.
It about six o'clock when Susan and Michael leave, so for the next hour and a half I do absolutely nothing but sit in my chair and relax and thank God for the good day I had. At 7:30 I go into my bedroom, take my nightly medication which consist of my two nebulizer medications and 81 mg aspirin. At eight o'clock I heat up a cheeseburger in the microwave, grab a glass of milk and a pudding cup for dinner. Then I watch the TV till about 10pm. I then go back to my bedroom and get on the computer and check my e-mail, get caught up on all the happenings on Facebook, do any writing like this article, and for relaxation play a few games. When I get tired I had only three steps to my bed then begins the routine of taking off my clothes and putting on my nightgown. The last thing I do before getting into bed is go to the bathroom.
When situated in bed I put my oxygen line into my non-invasive ventilating machine, (Bi-PAP), put on my mask, and say my nightly prayers. Today I say a special thank you to God that I didn't have any panic attacks. Most of the time I do not fall asleep right away so I turn on my TV till I feel myself start to dose off, at which time I click the remote control button shutting off the TV, and my day ends.
I don't always go out with other people, I often go out alone but the routine is basically the same. The one thing I forgot to mention was I always wear Depends when I go out, in case I lose control of my bladder. If I'm by myself and I have to go to the bank, or drugstore I make sure they have a window so I don't have to get out of my car. When I go to a grocery store I only go to ones I know I can get a ride-around Scooter. If I go to a store and they have no handicapped parking spots available I don't shop there that day. Not only will the walk be too far but, if all the handicapped parking spots are taken, they normally have no shopping scooters available. The only stores I will walk around are ones that are fairly small and not crowded. When I shop alone & have to bring in a lot of groceries, I have the store pack all the cold food in the orange canvas bag I’m carrying in one of the pictures. The rest of the groceries I leave in my van and either a neighbor helps me carry them in or Susan, Philip, or one of my grandsons come over and do it for me.
I have given you a pretty accurate view of what my days out are like, and even though I get short of breath, heart palpitations, and have to do everything at a snail's pace and get lots of rest in between and a little help, I pretty much do what everybody else does. So don't let having COPD causes you fear, stress, or anxiety where it stops you from living as normal a life as possible. My next article will be about day in my life at home. Breathe deep and easy.
Editor’s Note: We are extremely saddened to say that on March 2, 2018, Mary Ultes passed away. Mary was an engaged advocate for the COPD community who strived to help people live fulfilling lives. She is deeply missed.
Have you ever had to educate a doctor?