A friend of mine who lives with a very painful condition explained something important to me last week: when living in pain we have to be a little selfish with our time if we want to pursue our goals. As a successful florist who travels worldwide, my friend described how sometimes she chooses to watch her kids play, rather than playing with them; she skips out on helping with the dishes so she can rest; she doesn’t always clean the house, even when it desperately needs it. It’s not because she’s cruel or lazy, it’s because if she does it all she won’t have the energy to do the things that matter to her. She wouldn’t have anything left to give to herself. If she wasn’t a little selfish, she may not have become the passionate floral artist she is today.
I have been living with pain for about half as many years as my friend, so this idea hadn’t really come to the surface yet for me. I’m still coming to terms with the fact that I can’t do my to-do lists in their entirety or hop in on everyone’s plans when I’m on vacation. It’s been a long time coming and I’ve slowly been making this transition of using my time wisely. But along the way I’ve been putting myself down for it.
This week I’m staying near Lake Tahoe with my parents and fiance to do some wedding planning. Like most who live with chronic illness, my days are pretty scheduled back home, having set appointments every week. One reason for that is because it feels good to have some consistency and control since my body can be so unpredictable. Being on this vacation reminded me that even though I’m doing better, there are still many things I can’t do. Whether it’s being the one to say no to a spontaneous hike or stopping to rest on our walk down to the beach, I always feel like I’m letting everyone down.
A few days ago, Hayden and I went to check out a pretty tough trail with a view of the lake. We had no expectations for me pursuing the hike, but when we got there I was feeling pretty good so I decided to go for it. To our surprise, I made it all the way to the top. It felt amazing to accomplish something like that since I haven’t been able to hike for a long time. But on the way down, I realized I’d pushed myself far past my limits.
Over the next few days I paid the price and wasn’t able to do much at all, not even go out to dinner. Hayden and I have been on the hunt for a mountain ceremony spot, since hiking has always been something we love to do together. There are plenty of hikes in Tahoe, the challenge is finding one my post chronic illness body can handle. He thought that because I was able to do the hike, it would make for a great ceremony location. I agree with him, it is my dream ceremony spot. But I know that if I hike a tedious trail like that for our ceremony, I’ll be struggling for the rest of the evening. And who wants to spend their wedding night in pain? Again, I was letting down someone I love.
I felt so frustrated. Why do I have to make so many compromises on a daily basis? Why can’t I just do whatever I want like I used to, without having to think about if it’s going to ruin the hours ahead?
It is exhausting and emotionally difficult. Especially because most people will never understand.
We live with pain. Our lives cannot be the same as everyone else, but we have to do what we can to make it as normal as possible. Even if that means leaving the kitchen a mess just so you can grab a drink with a friend later, or deciding to turn back halfway during a hike – something I probably should have done.
Coming to terms with the fact that you can’t do it all is probably the most important part of living with chronic pain. It’s not giving up, its being at peace with your situation. Understanding the sacrifices we make on a daily basis and why we have to make them…well, it makes this life a little easier.