It’s a Little Like Halloween…

Halloween.

Remember when you were a kid and got a pillow case full of candy, pop, popcorn treats and other such goodies and you gorged on it for days because you had so much you thought you’d never run out.  Then, about 10 days later (if your parents didn’t ration your gorging) you start to realize that your pile is dwindling. What you once thought would never run out is looking a little thin.

Yea.  That’s a little like going to the clinic for me. Except instead of candy, it’s pain medication and instead of gorging on it, I think I’m super woman again. It’s the same game every month; I start with my new prescription and I have all this arsenal against my pain. I don’t have to sit down as much, or take breaks or say “no” to plans because I’m loaded up with pain fighting magic beans that make it possible for me to pretend I don’t need to rest.

But just like every month starts out so fantastic, every month ends with me on a short leash for a few days while I ration out what’s left so as not to be a day without at least a few beans. And every month I get annoyed because my super powered magic beans are gone, and I have to sit down. I have to use more ice packs. I have to say “no” to the things I want to do. I get so frustrated with my limitations that when my new prescription comes in I’m right back at being super woman again.

Stupid.

This time around my stack dwindled faster than it ever has, and I found myself in a rationed out hell for much more than the regular 3-5 days. In fact, it’s a bit more than a week and man, was I upset with myself when I realized the situation I was in. I kept telling myself “Just get through Fourth of July, then you’ll slow down.” “Just get through this BBQ, then you’ll slow down.” “Just get through this event, then you’ll slow down.”

Needless to say, I never slowed down. Not until I had to. I spent the first few days being really upset about the situation I put myself in. Annoyed that I had to sit out of things I like, frustrated that I had to rely on my kids and husband more for support. Feeling sure that if I just had a few more to use every month this wouldn’t happen to me.

And then I woke up.

I realized that it wouldn’t matter how many magic beans I got in a month if I didn’t remember how to slow down and take care of myself. You reach a point where no matter how much medication is running through your body it won’t calm the pain because it’s just too much for your body to handle. There is also a phenomenon called Hyperalgesia where the medications you use for pain actually make your pain worse.  Now, if that isn’t the dirtiest trick in the book I don’t know what is.

So, instead of being miserable about the limits I have these days, I am using the time to remind myself what I worked so hard to learn over the last four and a half years. Self-Care.

This is a hard concept for a lot of people, primarily women with spouses and families because we feel compelled to take care of everyone. Just as a man feels like it is his job to provide, it is our job to care for others; frequently putting ourselves last on the list of things to do.

When I first received my diagnosis and was dealing with the pain I rarely slowed down, rarely took the time to rest and relieve the pain until it was time for bed. I had adopted the motto that “Life doesn’t stop just because I am in pain.” I often found myself saying things like “It needs to be done” as a way to explain why I had no time for me. I felt extremely justified in this, and at the same time, I felt resentment for my partner for not understanding that I needed to take time for me. That he should step up and help more so I wouldn’t have to shoulder so many responsibilities.

Looking back I realize that if I wasn’t going to prioritize myself, why would he? If I wasn’t willing to say “No, I can’t do that right now, but you can do it if you’d like it done.” Why would he, or my kids for that matter, ever do it themselves? We’ve come a long way since then, and while I still believe that life is not going to stop just because I am in pain the concept of that idea has shifted.

Lisa Copen of the Rest Ministries said “At some point after diagnosis, in our cycle of grief, we stop looking for a cure and begin to advocate being ‘as well as possible’ –for as long as possible. It stops being about delaying life until we are cured, but enjoying the moment.”  This resonates deeply with me. I’m not ever going to be without pain, some days will be better than others, but it’s not ever going to 100% go away so I’ve got to find a way to enjoy my life. Not just survive it. When I was just plowing through everything because it needed to be done I was suffering daily. I was constantly in agonizing pain, distressed at the idea that I couldn’t find a way to make it better.

It’s still not better, but I’m no longer suffering. I’m living. When you’re in pain constantly it can consume you. It can take over everything you do and everything you say if you let it. For a while I thought that’s what I was doing when I started to rest, or if I declined an invitation to a party. They were all things I couldn’t do.  I wasn’t able. That my pain and fatigue was taking over. But, I’ve learned and am relearning through this time of limited magic beans, that I have a choice in this.

I can choose to plow through everything and reap the rewards of getting it all done, and suffer the consequences of pain no amount of ice, heat, rest and medication will touch. Or, I can choose to do the few things that are really important, to take that break, and delegate to other people the tasks that are too much for me.  It’s not that I physically can’t push the grocery cart, I can and sometimes do. But I do so with the full knowledge that the rest of my day is going to be full of swelling and pain. Measure that up next to shopping with a friend who pushes the cart in return for a coffee which allows me to enjoy a movie or dinner out that same night and it’s no contest. I ask the friend for help.

Did the pain I would experience later play a part in that decision? Sure, but did it control it? No. I still got to choose. Sure, I could just use those magic beans because they are so handy, but they inevitably run out and I’m left far more limited than I would have been if I had just asked for help.

I’m a bit disappointed in myself for forgetting all of this for a while there. I mean, I worked so hard to learn it and then just threw it to the side. But I don’t believe in coincidences, and I believe that God saw my struggle and gave me the opportunity to relearn these things.

It’s not perfect. It’s a work in progress and I will no doubt fall on my face again. But I’m committed to this lesson and every day I wake up feeling much less anxious about the limitations, and much more excited about the day. I’m journaling again, and taking the time to write for this blog. I’m reconnecting to meditation and reaping the amazing benefits of a good, solid ice pack.

I’m also finding that my family takes their cues from me. If I’m packing the schedule full so are they. But the more I request some down time, the more they follow suit. It’s nice to have a day once a week where we just decompress. You don’t need to be living with an illness or pain to deserve time off or to take that break with a book or a favorite TV Show. It’s good for the soul.

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