July 11, 2018 at 11:00 am #12740
Are there days when having pulmonary hypertension just feels like too much to handle?
Last week, I had numerous breakdowns thinking about how frustrated I was with this illness. I was tired, worn out, physically and emotionally done. On these days I give up control and allow my “frustration voice” to become loud in my mind. When this happens, I don’t use my oxygen as I should and fail to take medications. I give up control when I go out more times than I know I should and wonder why I feel so awful the next day. This is my “screw it all” side that gives me a false sense of control.
When I was done with the crying, anger, and frustration, I was able to think more clearly. This was when my “fighting voice” came through. The fighting side of me knows exactly what I must do to take care of myself. When it feels impossible to keep pushing forward, I have to remind myself of the things that I still have control over.
Feeling a sense of control over my life allows me to think more clearly and motivates me to pull myself back up after an emotional breakdown. The greatest type of control that I have over my conditions is the choice to take care of myself, even on my hardest days. My “fighting voice” tells me to use my oxygen as I should, take all medications at the appropriate times, slow down when I need to and find ways to feel happiness.
Even though there are days when the “frustration voice” is louder than others, it is important for me to slow down so I can tap into my “fighting” side.
Do you have days when you feel as though you are having trouble remaining in control? Do you notice a “frustration voice” ? What does your frustration voice try to convince you? Do you have a “fighting voice” that helps you gain back a sense of control?
July 12, 2018 at 10:26 pm #12794VKParticipant
My two voices are “keep living!” (fighting voice) and… well… I’m not going to detail the other voice but hint – it involves the opposite of living.
I can only listen to the fighting voice for obvious reasons. The fighting voice tells me that I have a partner and on top of that, two parents with me as their only child. It tells me that I beat the odds by surviving with the capacity of less than one normal lung for this long without needing transplant or even supplemental oxygen, and that I’m months from finishing a punishing doctorate degree.
Given the options and the nature of the frustration voice, I can’t afford to listen to the latter.
July 13, 2018 at 5:43 am #12811
Keep listening to that fighting voice! It seems like you have so much to look forward to and good reminders that this life is worth living. 🙂
Also, I am working through my phone and accidentally deleted your other comment that mentioned your gf and the 95 degree weather! If you remember what you wrote i can add it again if you post it! I’m so sorry about doing that! The phone screen is different than the computer and i easily hit the wrong butttons !
July 12, 2018 at 11:35 pm #12795Kathleen ShefferParticipant
Oh, yes! I’ve had more than my fair share of “why me?” moments. This disease is exhausting, isolating, and totally unfair. A wise friend taught me that gratitude is the antidote to grief. Your frustration voice is grief. Grieving the life you had, the life you could be living if it weren’t for the disease. We experience small losses every day when we say no to a friend or stop what we’re doing to take medicine.
Gratitude flips that voice, that narrative, on its head. We can hate this disease, and we can also be grateful that we’ve grown because of it. That we have met amazing people through the community. That we’ve developed a greater capacity for empathy.
Though comparison often hurts us, it can help to look to people whose situation we perceive to be worse than our own. Everyone’s fighting their own battles. Recognizing that can give us perspective. I can’t type “every day is a gift” without hating myself, but it’s true. Think about all you would miss if you didn’t wake up tomorrow. This exercise is easy for those of us who have had near-death experiences. We know many people who have lost their battles. Maybe this is more a result of having donated organs than it is having lost so many friends to PH and CHD, but I try to live every day with some amount of gratitude that I get to live it, because I know some don’t have that privilege.
July 13, 2018 at 5:46 am #12812
Thank you so much for these words. You truly are inspiring with everything you say and you help put things in perspective. I couldn’t agree more with the gratitude you are talking about. It’s truly a gift to be alive and one that I certainly never take for granted. 🙂
July 17, 2018 at 9:30 am #12831Randolph ReynoldsParticipant
Every one of these comments are right on the mark. The fact that when I started using a pump it so depressed me that my frustration voice (give up) was winning the battles. This morning I have to get my fighting voice back in motion. These cycles are continually running with the back drop of having to continue many of the activities that I did before. There is part of me that just feels exhausted. If I can see any improvement I am encouraged but when PAH and the side effects of the medication are a constant back drop it is difficult.
Thanks for sharing. It seems that this helps.
July 17, 2018 at 5:31 pm #12840Randolph ReynoldsParticipant
Post Script: Changed out the medication, upping the amount this morning. The with inogen in hand went out to play in the world. Becoming discouraged as I came home that I still get shortness in breathing without portable concentrator. I am in the fighting mood but it really is hard (sometimes scary).
July 18, 2018 at 4:07 pm #12858KRISTINEParticipant
For me I stay short of breath even when on oxygen. Maybe not as bad as without oxygen, but my understanding is the oxygen will raise the oxy. level in the blood which slows down the right side of the heart. By using the finger pulse ox thingy I can see an immediate change from no oxygen to breathing oxy. I also don’t have as much pounding chest “pain”or uncomfortableness.
July 18, 2018 at 4:25 pm #12859KRISTINEParticipant
I guess my fighting voice has remained the victor thus far. But as soon as the fighting voice takes a break the frustration “I’m tired of this shit” voice takes over. Sometimes with no explanation I can get winded walking a few feet, but yet 50 other times I walk that same short distance with no shortness of breath. That is just a generic example out so many times that the frustration voice can be in the lead.
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