Can being kind to ourselves improve our health-related quality of life?

[DeLois Tweedy]

Jen, I guess I’m not as self-compassionate as I should be. But I am learning to be. I’m more the type of person that likes to do for myself, that hates asking for help from others, that is always afraid of what people will think, etc, etc.

But since dealing with all the symptoms of PH and heart disease, I’ve learning to not worry so much abt what others think, and to follow what my body is telling me at any certain time. This is helping me be kind to myself and in turn makes for a better day, thus a better quality of life.

[jen-cueva]

Hi @deetweedy, you’re definitely not alone in wanting to ask for help. I worked in nursing before my PH diagnosis. This meant I was a caregiver and “the caregiver” for many of my extended family.

Since my PH and coexisting illnesses, I’ve tried to work on this. Like you, I remind myself not to concern myself with what others think. We have to do what is best for our bodies.

Saying no and setting boundaries is one way we show self-compassion. I wrote a column in the past about setting boundaries. Feel free to read it and let me know your thoughts.

Jen’s column- setting boundaries

Enjoy your weekend.

[DeLois Tweedy]

Jen, so well written and you put into words what I often think and feel. My biggest hurdle was when I would need to sit and rest at times, and had remarks like “all you do is sit” or insuating I was lazy. I even had a family member to ask what was wrong and I said I was short of breath; the reply to me was “that’s all I hear, you’re always short of breath.” I have finally learned to not feel bad about needing a rest break and to ignore hurtful comments like that. And yes, I have stopped feeling lazy when I have days that I am so fatigued. My biggest aggravation is when people think I’m using my health issues as an excuse – i.e. drama.

[jen-cueva]

Hi @deetweedy, I’m so sorry you have experienced such hurtful comments from friends and family. It’s frustrating for us who are trying so hard to push ourselves, yet they can’t see or believe we are sick.

I’m grateful you have learned your boundaries and do what’s best for your body. Unfortunately, using health issues as an excuse for drama happens to many of us. I’ve experienced that through the years; sadly, it’s usually extended, family. I can only think they do these things because they don’t want to accept that we are sick, which is their denial. But it only hurts us.

Big hugs to you, my PHriend. I’m so grateful this column resonated with you. Hugs and cheers to a joyful new week!

[Carol Volckmann]

Inspiring topic Jen I think all of us needs to focus on. So well written from the heart and your soul.

Practicing self compassion – sounds simple but it is not. And you reminded us how incredibly important it is – thank you so much. I now have my homework cut out for me to start on.

Self compassion is slso so important for our caregivers to practice. I need to share this with my husband, Dick who holds so much inside and tries to always keep strong “do it all” attitude for me.

Thank you Jen!!! 😊 ❤️

[jen-cueva]

Hi @cdvol3gmail-com, yeah, self-compassion is not easy. It sounds like it should be, but we have to work at it.

I’m grateful that you found the column helpful. I hope that Dick benefits from reading it, too. You’re right; our caregivers try to stay strong and keep everything inside. They want to do it for us!

Thanks for your thoughts on this piece. Patients and caregivers alike need to work on being more kind to themselves. I hope you take some reminders as you practice being kinder to yourself today!

Hugs to you and Dick, both coming from San Diego.

[Md. Abul Kalam Azad]

My son 20 years old is suffering from Idiopathic Pulmonary Hypertension for last 8 years. His health condition is very crucial. Presently he is facing astrological problem. He can not eat more rather very little. He is losing his weight. can some one give some suggestion regarding this issues.

[jen-cueva]

Hi @azad, I’m sorry your son is facing such difficult challenges. Eating is important as our bodies need adequate nutrition to keep going. Have you talked to his healthcare team about this? What were their suggestions?

When did his physician see him last?

Can you buy Ensure or some protein meal replacement drinks? You can add some ice cream to a blender and make a shake. Most can drink that as long as they can such it through a straw.

When he is creating, those foods should be of high nutritional value. I eat smaller meals, like a toddler, throughout the day. Smoothies and shakes help when I need more nutrients.

Please know we are here to support you. But also would love to hear what his medical team recommends. Take care of yourself, too.