Using your time wisely with chronic pain

A friend of mine who lives with a very painful condition pointed out something important to me the other day: 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 often times she chooses to watch her kids play, rather than playing with them; she skips out on helping with the dishes so she can take a nap; 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 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 beating myself up for it – putting myself down, saying ugly things to myself and feeling worthless.

This week I’m staying near Lake Tahoe with my parents and fiance to do some wedding planning.  My life back home is very predictable and I keep to a pretty regular schedule so 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 on our drive home 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 trail with a view of the lake.  When we got there, I was feeling pretty good so I decided to go for the hike.  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.

The next few days, I paid the price and wasn’t able to do much at all, not even go out to dinner.  On top of that, Hayden thought that because I did 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 that mountain 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 a normal person, without having to think about if it’s going to ruin the hours ahead?

Honestly, it’s exhausting and it’s a tough life that us spoonies lead.  Especially because most people will never understand.  Many family and friends will look at the photo I posted on social media at the top of the mountain and say, “She feels well enough to hike but can’t work a full-time job?”  But that’s OK.  They can think what they want, because they’ve never lived a day in my shoes. And thank god for that.

What I’m trying to get at here is this: If you haven’t come to peace with the fact that you can’t make everyone happy, you need to start.  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.

I just started working from home part-time so I have to be a little more selfish than usual lately.  Although my endometriosis is better since excision surgery and that’s what I choose to focus on, I still live with chronic bladder pain from IC, a hip condition, and umbilical pain from surgical adhesions that literally brings me to my knees sometimes.  I know that in order to get my work done well, I have to say no and let people down.  And I’m okay with that, because working has brought a little bit of normal back in to my life and I deserve that if anything.

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.




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