Despite IPF, We Should Find Joy in the Small Things

Charlene Marshall avatar

by Charlene Marshall |

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ice cream and joy

younger than 30
When I sit down to write these columns, I often reflect on something that has been difficult throughout my journey with idiopathic pulmonary fibrosis (IPF). I usually focus on something that has changed as a result of my disease — something I have lost, or something that has become difficult that I may have taken for granted. Sometimes I attribute these columns to difficult side effects resulting from medications, or from the disease progression. Other times, I am writing about the plethora of feelings I have been experiencing since my diagnosis.

It probably seems rare that I have something good to write about and sometimes, I feel that way as well, which is why I have chosen to dedicate this column to a wonderful evening that I had earlier this week.

It was not a day without pain and discomfort, and it was not a day without an appointment, and it certainly wasn’t a day that I was without my supplemental oxygen. These are things that would typically make for a wonderful day for me. However, my wonderful evening happened rather sporadically with a friend, and it did not involve elaborate plans. Instead, our evening was focused on quality time spent together doing two simple things; enjoying a salt therapy treatment, and getting ice cream. That’s probably pretty standard for most people, but it is something I long for in midst of so much chaos as I live with a rapidly progressing lung disease. I felt so content participating in this evening with a close friend. It reminded me that despite my diagnosis, I can find and appreciate the joy that comes from the smaller things in life.

I’ve been able to connect with other IPF patients as a result of writing this column, and we often speak about the things we have in common. When we share our struggles, one of the first things I like to ask other IPF patients is: What brings you joy in your day-to-day life?  Their answers always fascinate me because they are so varied. Believe me, I am often quick to forget that joy can be found in each day, even if it is something very small.

The friend who shared ice cream and the salt therapy experience with me often reminds me that I can find a reason to be joyful, laugh or smile every day. I am guilty of letting IPF take over, and forget about the things that can make us feel content despite our disease. That being said, I thought I would put a challenge out there for those reading this column. If you feel compelled, please leave a comment and share something that anyone can participate in that has brought you joy in the past few days, week, month or year. Perhaps we all can learn from one another, and in some way, experience the joy you felt by hearing your story. Stories are such powerful tools! Let me start by sharing the joyful experience that inspired this column.

When I felt as if I was getting a cold earlier this week, I spoke with a member of medical team about some non-medication options that might help me get rid of the cold and feel better quickly. (I prefer not to take additional medications if I don’t have to). She made some great suggestions, and I asked about a salt therapy treatment at a spa, which entails sitting in a salt room where Himalayan salt is infused into the air. Lights are dimmed, chairs are extended back, blankets are given and soft music guides you into a state of relaxation. Once I was permitted to try this, I called the salt therapy room to ask if they had space that evening and they did. So, a friend and I enjoyed an hour of salt therapy with complimentary coupons I had received from my first visit.

Although the goal is to be relaxed and quiet, we just chatted about different things. Trust me, trying to get me to be quiet is a task in itself! After that, we decided to go for frozen yogurt and enjoyed a cool bowl of lots of unhealthy treats that was very satisfying. (It’s okay once in awhile, right?)

We stayed and talked about everything for more than two hours. Some things we talked about were hard and brought tears. Some were happy tears, others were out of frustration and sadness. As I sat with my oxygen tank beside me, I remember thinking, it doesn’t matter that I am tethered to my tank right now, because even if I wasn’t, this is exactly what I would want to be doing.

It then dawned on me that despite a life-threatening illness, joy can be found as a result of the smallest and normal experiences.

Who would have thought that getting ice-cream and talking with a friend could leave me feeling so content?

***

Note: Pulmonary Fibrosis News 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 Pulmonary Fibrosis News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Comments

A.J. avatar

A.J.

What a delightful and inspirational article!Thanks for sharing it with sufferers and their caregivers.
What brings my husband and I great delight are our dogs. I do believe he would have given up his IPF fight if it hadn't been for them.They constantly keep vigil on him and their antics make him smile. As a caregiver whose heart breaks every time I see him struggle or in pain, they help me, too!

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Rhoda Engelbrecht avatar

Rhoda Engelbrecht

Those little things can mean so much. At this stage of life 82 years of it had a lot of practice. Even if you allow yourself to roll with the proverbial punches. Get a little disgusted at times, hey! I deserve those episodes. Using the power of imagination also helps. I have the salt lamp in my bedroom, if I think it helps, it will. When I had to sell my home in the mountains, which I loved, had an aroma of cedarwood vanilla oil, all commented on the lovely smell. I now have the same aroma in my bedroom. I'm blessed to live with my children, blessed that they will have me, really don't know how much longer they will be able to stand me, or sit. All in all, guess I can live as long as I can. Thankful for the ability to still think and converse on the Internet, let your fingers do the talking. Those little things get to be quite large, as time does fly. This is today, tomorrow? I've got plenty of time!

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Lorraine Martel avatar

Lorraine Martel

I enjoyed reading your message. I am very fortunate that I have lots of support in my journey with IPF. I was diagnosed in June 2015 and put on oxygen in March 2016. Even though I am on oxygen 24/7 I still enjoy all that life has to offer. I am so grateful that I live in a time where I can enjoy life because of the oxygen. It is not always easy but my attitude is that nothing is easy so all we need to do is adjust to our current circumstance. I still go out to eat, go shopping and enjoy every day. I do get tired easily but that's okay. On the days that I don't go out, I take naps! Good thoughts go out to all who are going thru this journey. Stay hopeful and positive.

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Judi Zoboli avatar

Judi Zoboli

I've been having more trouble these days with my oxygen level dropping to 79 or so just moving from room to room. My joy is in walking to my slider and watching the birds in my yard. I keep my camera next to the door so I can take pictures of the activity in the yard.

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Judy McConnell avatar

Judy McConnell

I derive pleasure each day from watching my dogs "smile" as they run outside in my beautiful, restful garden. Their ears flop up and down as they run, chasing after chipmunks! They start digging a hole as they're looking for the chipmunks. My younger Airedale will have her nose (and head) submerged in a hole, and her butt will be in the air with her tail wagging! Although thoughts of IPF enter my mind (coughing,schlepping my o2 around the yard, up and down the stairs, etc.), I try to take pleasure from nature, my family, and, of course, my pets.

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Isabel Mickle avatar

Isabel Mickle

These days there are a few things that bring me pleasure. Some days it's when my grandchildren come over. Their ages range from 12 to 1. It's hard for me to get around, but just them playing Uno with them, the littler one running his matchbox trucks up and down my leg mts or playing peekaboo with the baby.
I've had IPF for about 13 years and it is getting much worse. So I take it one day at a time. Simple things make me smile like the beautiful lilies of various colors that we planted last year and the different birds which come to the feeders. From hummingbirds, bright red cardinals to the feisty blue jays these are the simple things that help brighten my day.
Thank you for letting me share them with you

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Mrs. M C avatar

Mrs. M C

Thank you for your column. I live in Australia and have only been diagnosed for 3 months. Many of the things mentioned make me happy but this week I am elated as I just heard an old friend who lives in another state and I have not seen for over 30 years is flying over to see me in one month as her response to my diagnosis. Isn't great to have such wonderful friends!

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Linda Babe avatar

Linda Babe

Recently diagnosed with ILD. Not sure how I got it but I think it was from Radiation. due to breast cancer. The first time I saw the pulmonologist he told me I needed oxygen 24 / 7. A very hard adjustment to make but the oxygen does help. Luckily, for now, I enjoy reading and I am usually content doing that. My little joys are playing Rummytile with my friends and attending a weekly in/house movie. I intend to find more.

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