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Have you ever found yourself on a downward slide, reluctant to stick to your PH treatments or lifestyle adjustments?
Have you ever found yourself on a downward slide, reluctant to stick to your PH treatments or lifestyle adjustments? The overwhelming routines and constant appointments make life challenging. What inspired you to climb out of that slump and regain control over your health and well-being?
Over the years, I’ve talked to many individuals, both patients and caregivers, who have shared that they sometimes experience this slump. Some mention finding motivation in support groups or drawing strength from family and friends.
We want to hear from patients and caregivers about your journeys, challenges, and what ultimately helped you stay on track. Your stories can inspire and support others facing similar struggles.
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6 Replies
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Great topic @jen-cueva , I would imagine most have fallen into the slump of enough is enough. Jen, I have been there a number of times and each time I remind myself all these meds, appointments, labs, tests etc are keeping me ALIVE.<div>
When I am in that slump, I give myself a break and say no test, no labs, no appointments for … 2 weeks unless something urgent comes up. Usually I can make that happen. During the 2 week break I make sure I do something fun. Usually this works.
Thank you Jen for bringing this up. You always seem to find the button 🙄 to push ourselves and at the same time remind ourselves we are human.
Positive energy ✨️ Joy 😊 Laughter 😃 and always love ❤️,
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@carol-volckmann I agree, this is an important topic @jen-cueva has given us to think about. I say ‘us’ because as a caregiver, I’ve sometimes done what you have, cut back on appointments (within reason of course). Cullen also choses to do this sometimes. We will select appointments that can be postponed without concern…dentist, eye, blood work and check-ups as long as there aren’t problems needing immediate follow-up. The same goes for caring for my parents. When I start to feel like life has become consumed with medical appointments, then I make adjustments or risk caregiver burn-out!
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Hi @Colleen , you bring up an excellent point that our exceptional caregivers experience their own ups and downs while caring for their loved ones and managing appointments continuously. If our caregivers don’t take time off to decompress and prioritize self-care, they won’t be able to give their best to those they care for.
Colleen, you continue to be a devoted caregiver, especially now that Cullen is handling so much of his own care. You are, in turn, caring for both of your parents. Speaking of which, I want to share your column from this week. It truly moved me to tears, and you painted such a beautiful picture of your mom singing, even today.💜
Below is the heartwarming column Colleen published today. You will feel it warm your soul.https://pulmonaryhypertensionnews.com/columns/music-deserves-note-thanks/
pulmonaryhypertensionnews.com
Music deserves a note of thanks
This holiday, columnist Colleen Steele offers a note of thanks for the close relationship she has with music.
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@jen-cueva thank you for sharing my column. I know you have also written excellent columns about the influence of music on our lives. It’s one of the few things in this world that most people can relate to, one way or another.
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Hi @Colleen , that’s so true. Your column reminded me of the importance of music. Often, I listen to podcasts while working at home, which have always been music. Reading this piece reminded me how much I’ve missed listening to music while working, so guess what genre I will be listening to now? I’ll offer a hint- 🎄.
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Hey @carol-volckmann , thank you for your valuable feedback on this topic. I know recently you and your hubby, Dick, both took a two-week hiatus from medical stuff. Did you do anything fun then or rest and be together?
Like you, when I start feeling overwhelmed, I step back and try not to schedule too many medical appointments. However, when it seems like all we do is visit doctors, go for lab tests, and undergo various procedures, I carve out some time for myself. Whether spending a day at the beach or relaxing with a good book, I prioritize my “me time.” This helps me cope during the busier medical weeks and months.
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