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When Dealing With PH Limitations, What Do You Do That Helps?
Living life with PH certainly can bring about some limitations. I think that through the years since my PH diagnosis, these limitations have been ever-changing.
Because of some physical symptoms that I am looking to find answers about, I am not allowed to drive at this time. This isn’t the first time in my 15 years as a PH patient that I have had limitations.
I try to remind myself of a lesson about pity that a late PHriend left with me. This helps me to refocus and move on. I wrote more about this in my recent column. Please give it a read, and let’s talk about it.
When frustrated with limitations because of PH, what do you do that helps you?
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4 Replies
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I’m sorry you aren’t able to drive right now. I went through a bit of that when I was first diagnosed with PH and the first med they put me on cause me to pass out. I guess it was a secret blessing because it unearthed the fact that (completely unrelated) I needed a pacemaker. So, it was only temporary, but not being able to drive myself places (during post-surgery periods, etc.) has always proved to be a bit depressing for me. It makes me feel kind of childlike and dependent. Of course, I AM dependent in some ways … but I don’t like that. I suppose none of us do. My biggest limitation due to PH, I think, is having a full-time job and managing my stress level and the physical demands of pushing myself to get up and go on days when my body is saying “nope, not today.” I’ve always known it, but truthfully, the pandemic has made it crystal clear. I have enjoyed the long stretch of being relatively healthy (no major medical catastrophes) since March 13 that I’ve had in several years. I do believe it’s all owed to the fact that I have not had to go in to work in all that time. I do a bit of work from home. But mainly I follow my body’s lead and pacing. I keep telling my husband that I may not return to work, because it’s so, so obvious what it was doing to me. Before, it was all theory, but now it’s proven fact. I don’t know how we’d handle the financial fallout, but I do know that I deserve to do what’s necessary for self-preservation. So I’m trying to figure out how to respect that going forward.
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@robin-webster it’s nice to hear from you! To work or not to work is not an easy decision to make. I think you are right though, you deserve to do what’s necessary for self-preservation. It is good news that you have had month’s of doing fairly well…may that continue!
@jenc I’m so sorry that you aren’t able to drive. That’s a hard one to accept I’m sure. Hopefully your doctors can get you back on the road to good health and back on the road literally.
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Hi @robin-webster, I am grateful that you popped in to revisit us. Yes, driving does make dependence even more difficult. Yep, no one likes being dependent, especially after having quite a bit of independence pre-PH.
As I mentioned, I have been through several rough patches when I was unable to drive. I keep reminding myself that this too will pass.
As far as your decisions on not going back to work , that must be an ongoing struggle for you. I do recall that you mentioned that just as this all had started. I think that you are right; you deserve and should do what is best for you and your overall health. The positive is that no “catastrophe” since March. That is a massive indication of how work taxes your body. Please keep us posted.
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Thanks, @colleensteele. That would be a great column title, BTW, when I am back on the road, hehe. I appreciate your kindness despite all going on in your life. You have such a caring heart.
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