Living with PH changes how you conserve your energy, spend your time

I feel like at one point, particularly, I can remember being in my 20s and going through college and, like, that 18 to 22 time frame where you just put so much pressure on yourself to just constantly do what everybody else is doing, including going out, having drinks with friends, going out to eat, going to parties, staying up late.

And I quickly realized that my body wasn’t able to do those things the same way that everybody else was.

I feel like at first it definitely would leave me feeling very defeated, especially because I’m like, “why is everybody else my age able to do these things?” And I just felt like I wasn’t able to keep up socially with people.

So I feel like my concept of what a social life actually looks like and means has had to change drastically over the years.

I feel like I try to pack my days with things to do to feel as quote-unquote normal as I possibly can, and that includes going to work when I can, running errands, also taking care of my health, and going to doctor’s appointments or procedures.

But it’s very important, I feel like, when you think about adapting and trying to preserve that social life to save your energy when you can. And a really big thing is rest. Even when you feel like you don’t have to rest.

That’s like something that I’m currently learning to take those, like, days for yourself and those days for me to just kind of recharge and get a little bit of that stamina back so that I’m able to plan better, I’m able to look ahead and say, “OK, I have this thing coming up at the end of the week. What can I do to save my energy? What can I do to take care of myself leading up to these days, so that I’m not so burnt out that I can’t enjoy the thing that I really want to do.”

So something that I know my husband Phil is really good at is recognizing when I need to slow down, and also incorporating date nights where it’s more of just like an average, just like night, spent together.

So like, what does a date night look like when you have a rare disease or an illness where we get takeout and we just watch Gordon Ramsay shows on a Friday? Well, we’ll rewatch “Next Level Chef” or “Master Chef” or “Hell’s Kitchen.”

And that’s our night. Like that’s our night together. That’s our Friday night.

I feel like having the right partner is so important in that because they can support you in just keeping it simple and reminding you that they don’t need something extravagant to fall for you, or to be in love with you. They just enjoy the time that they’re spending with you.

Having people in my life who remind me to slow down when I can’t see that I need to slow down myself is crucial. And also trusting that those people have your best interest in mind.

And sometimes, you know, I’ll give my husband a hard time because he’ll say, “You, you know, you already worked three full days this week. You don’t need to work another half day, you don’t need to work another day.”

And there I am, pushing back, saying, “No, I can do it. I can do it.”

But him expressing concern or recognizing, “Hey, you’ve already worked a little bit today and you had a rough week, or we have this thing coming up this weekend, so make sure you’re saving a little bit of energy for that thing,” knowing that it’s coming from a good place, and not just because somebody is trying to be difficult.

Giving yourself the same grace that you would give another person is so important.

And that’s how I’ve had to reframe a lot of my thinking lately.

Especially when I do get down about having to miss something or cancel plans last minute, I kind of have to get in my head and think, “OK, if this was one of my friends, even as a healthy person, right?”

If one of my friends that was healthy had to cancel plans last minute because they weren’t feeling well or they were sick, would I get mad at that person? Absolutely not.

I would offer my support. I would see how I could help them, and I feel like we need to give ourselves that same grace.