What It Means to Care for Myself
Sometimes when I awake in the morning, I’m afraid of what the day may bring. Then, when I retire for the evening, I’ll take my tablet with me to bed to read or listen to jazz. But just when I’m ready to call it a night, a feeling of anxiousness will wash over me as I think about my day or what to expect from tomorrow. After a while, I’ll talk myself into feeling calmer and eventually drift off for the night.
I think I have these feelings because I realize that each day isn’t promised.
The first spontaneous pneumothorax I had awoke me from my sleep one night. I couldn’t breathe. The more deep breaths I tried to take, the more out of breath I felt. A family member called an ambulance.
After I was hospitalized and had a few X-rays, the doctors told me that my right lung had collapsed. At first, I didn’t know what could’ve caused it, but after thinking about it, I figured it was pulmonary sarcoidosis.
Then, nine months later, my left lung collapsed. I immediately knew what was happening because I will never forget that feeling. Here we go again, I thought.
The days turned into weeks, then months, and it’s now been a few years since my pneumothoraces. Since then, I’ve gone through several hospital stays, three rounds of pulmonary rehab, and what felt like a lifetime of testing. I’ve so far accomplished the goal of keeping me here.
Sometimes I start feeling a bit cavalier about my experiences, especially if I’m feeling like my old self. That’s when I’ll tell myself to slow down. My inner voice of caution and reason helps to keeps me out of trouble.
That same inner voice also encourages me to take care of myself. I’ll ask myself: Do I want to be my own caregiver or caretaker? There is a slight difference between the two: A caregiver is someone who provides others with care and support, while a caretaker is in charge of caring for a person, place, or thing. By all accounts, I wear both hats.
Although I need help from time to time, I like to consider myself my primary caregiver because my inner voice offers me support as I attend to most of my needs. I also consider myself my primary caretaker because my biggest priority is taking care of myself. I encourage myself while caring for my body, which helps me to feel independent. And isn’t that what we all want?
Battling sarcoidosis can leave us feeling frustrated, weak, and defeated. When I start to feel this way, I pause and think about everything I’ve been through, how much I’ve gained, and how much further I have to go. I also see how much of my old self still exists, and that’s encouraging.
One thing I know is that I won’t get any better by sitting around doing nothing. Sometimes I have to make myself do things that I know will help me. It’s easy to sit in front of the television, like I did when I was hospitalized, but I have no excuse for that now. The pandemic makes it especially easy (though sometimes necessary) to stay indoors and out of sight, but going outdoors when I can to take a short walk doesn’t cost me anything, and it helps me a great deal.
When I’m at my most defeated and vulnerable, I think about one of my favorite Bible verses: “Greater is He who is in you than He who is in the world” (1 John 4:4).
We all have the ability to be the best versions of ourselves, so it’s important that we try.
Note: Sarcoidosis 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 Sarcoidosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sarcoidosis.
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Comments
wendy a schleyer
What an amazing story im posting this one.
Charlton Harris
Thank you for reading, Wendy.
Please feel free to share the article in hopes it may help others who have to deal with this condition.
Peace & Blessings to you!
-C-
Mark Burton
I can relate to the back and forth, some days I'm positive but other days my limitations frustrate me. I probably spend too much time alone. Removing my dog 🐕 may be the best and worst thing of all. He kept me company but I knew I was depriving him of his full potential. I'm grateful he's living with another Ridgeback and I get to see him run and crash just like they like to do on their IG page. I have sarcoidosis of the liver and as a result I have end stage cirrhosis. For someone who never smoked or drank alcohol it feels like a cruel trick. Then I have days when I accept my limitations and simply do what I can and feel grateful that I've never been sick or hospitalized before now. Overall, it's been a really good life.
Charlton Harris
Thanks for reading, Mark!
Like you, I had our family dog, Brownie who I considered my therapy dog. He was a little rescue dog that we wanted to share our family with, and he made more of a difference on us than we did on him I'm sure. He passed in 2020 and I haven't been the same since. But with life, everything comes with conditions and limitations. This condition tries to stretch the limits of our acceptance, our patience and our health but we have to remain in control of the ship. It's easy to say "don't let it get you down!", but unless you live it, there's nothing that you can compare it to.
Keep living, my friend. Remember, each day is a blessing and a chance for you to be better. Keep moving, keep living and enjoy the adventure!
Peace!
-C-
Donna Craighead
Thank you Carlton,
I have systemic pulmonary sarcoidosis and have not allowed it to stop me from living! A positive attitude is so important. I’ve survived 2 spontaneous pneumothorax, multiple eye surgeries, joint pains, abdominal surgery, etc. I eat well, exercise, travel and continue to live. I’m writing my journey with the hope to help someone else. You are a breathe of fresh air, I usually here people complaining about what they can’t do and I always say: we’ll find something you can do!!!!
I’m a Philly native too. Just moved back to PA after 35 years, wow what an adjustment it has been.
All the best
Charlton Harris
Donna,
THANK YOU SO MUCH FOR READING AND THE COMPLIMENT! Like you, I had both of my lungs collapse within 9 months of each, and it has been a journey getting back to some sense of normalcy. Every day I'm THANKFUL for all I can do and appreciative of things I did, and I don't let the things I can't do anymore stand in my way of living. Now I have to work on giving up the vices. Having had the lung collapses and multiple hospital stays, I think I can overcome the things I need to. Remember, it takes 2 to complain-those that complain, and the one they complain to. I try not to be either!
Continued Blessings and Peace to you. Please keep reading and commenting!
-C-
Roy Carter
Thank you, Charleton, for sharing your story. So many similarities. Like you, my constant reminder that the Lord God is with me, even in this, has truly carried me many days since I began this Sarcoidosis journey some 37 years ago. Continue to be blessed...and blessing!
RC
Charlton Harris
Thanks for reading and the blessings, Roy.
This is a condition that keeps me praying which helps me to deal with the challenges.
A good sense of humor helps too!
Keep praying for strength and patience with yourself and you'll be cool.
Continued blessings and prayers to you!🙏🏽🙏🏽
-C-