Building Walls: Managing Pain

Building Walls: Managing Pain

You are a builder. Sometimes, you are careful in your layout and design, carefully lining each detail up, making sure everything is strong and secure. Sometimes, you just slap everything together and hope for the best. But everyday, as soon as you wake up, you build. You build a wall inside your own head. You build a wall to hold it back. You build a wall because if the pain isn’t behind it, the rest of your brain can’t function in front of it.

Sometimes you are able to build the wall near the back of your head, with lots of room for you to think up front. Those are the mostly-good days and the mostly-good days are as good as the days get, for you. They are the smile-almost-reaches-your-eyes days. The go outside-even-though-it-hurts days. The days that are so much better than any other days that it’s important to remember them, especially because they only come once in a while, because forgetting them has gotten you locked up in hospitals that don’t allow you to have shoelaces or razor blades. You must enjoy every moment of the mostly-good days before they are gone, or before they are taken away.

Sometimes you have to build the wall in the middle of your head, because the pain and your ability to think and function are fighting for half of everything you are, evenly matched. Those are the mostly-bad-but-normal-for-you days. The smile-anyway-because-pain-is-contagious-and-you-don’t-want-to-ruin-everyone-else’s-day days. The fake-it-til-you-make-it days. The days that you’ve learned to live with, because it’s your life and life is not always sunshine and rainbows. On these days you try to remind yourself of the mostly-good days. It’s the possibility of the mostly-good day you need to remember, not the day itself, because hope is the essence of maintaining a purpose-filled life but longing and pining and whining will be the destruction of your carefully controlled reality. So you must remember it is possible but not wish for it to happen, because that is when the breaking happens.

Sometimes you are forced to build the wall in the front of your head, with barely any room for thinking or functioning, because the pain is demanding every tiny bit of space there is to dominate your body. Those are the bad days, the precursors to the worst days. The walking-on-eggshells days. The might-as-well-go-back-to-bed-now days. The days that, if they come back-to-back, make people forget you exist and even real friends ask where you’ve been because you haven’t left your house in you can’t remember how long and even picking up the phone is too much energy expended that could have been spent on something important, like finding food or crawling to the bathroom. You must not do anything, anything at all, that will knock the wall down and you spend every moment tense and in fear that it will fall down anyway. Cooking, working, cleaning, socializing…—the list of things that you can not worry about gets longer the longer you’re forced to maintain the wall. You are a slave to the wall. Keeping it standing is all you live for.

Sometimes, though, you can’t build the wall at all, or you do build it but a bad day knocks it down and you’re left trying to re-build in the middle of the day without the benefit of a full night’s sleep. You just can’t do it. It’s not for lack of effort. Your entire life is about that wall. But the wall can’t be built if there is nowhere TO build it. And the pain is in your whole head and your whole body too. There is no room for a wall, and no functioning to even be trying to save. Those are the worst days. Those are the might-as-well-cry-it-won’t-make-it-hurt-worse days. The disappear-into-your-hole-and-wish-someone-would-save-you days. The bang-your-head-against-the-wall days. The pity-party days. Those day are an eternity of unendurable, unending minutes that last an eternity that you somehow must get through, so you get through them the only way you can: second by second. You only allow yourself to focus on one second. Just make it through one second. That’s all you can ask of yourself. When you make it through, you allow yourself to bask in the victory before you focus on the next second. And once you get through that one, you focus on the next one. And the next, and the next. And eventually, after forever, you’ve gotten through a minute. And so you fight your way through your day, minute by minute, second by second.

Thankfully, most days are just mostly-bad days that make life hard, not worst days that make life impossible, so on the average day when you wake up you’re able to build your wall. First you evaluate your pain and if your hours of sleep helped you or hurt you. You ask yourself Where will the wall be today? Are there any remnants of yesterdays wall left over for you to build on or with? Did the defenseless hours of sleep leave you with higher pain and less ability to build, or refresh your energy and dampen your pain? Depending on the answers, you might roll over and go back to bed—building is going to require more energy than you have right now—or you might start your wake-up routine.

But every day, rain or shine, you are a builder or a wall inside your head. The wall is meant to keep the pain at bay, and it does a better job of it some days than others. There is no end in sight so you just keep building, every day building, quietly hoping that some day it might end, but never allowing that hope to overcome you. So you build, and build, and build.

Showering and Bathing as a Spoonie

Showering and Bathing as a Spoonie

Let’s talk about something personal, ok? Showers and baths. We all know how exhausting they are for a Spoonie, but how can we work them for our benefit?

When I shower, I do it as quickly as possible. I use 2-in-1 shampoo/conditioner because I don’t have the energy or time to sit in the shower waiting for conditioner to sit in my hair, and the arm motions of rubbing it in and washing it out are extremely tiring. Fortunately my hair is one of my better features and I don’t require expensive shampoo or conditioner to make it look good.

For my face and body I use a Norwex body cloth. It is this awesome microfiber cloth that has antibacterial properties in it. It helps me not get breakouts or get sick from a bacteria-infested washcloth or loofa in the shower. I used to have huge problems with breakouts before I started using it, but now my skin is clear! It’s nice to have one quick cloth to clean, and then I’m done. 

When I take baths, I do it because my body is so achy that I need heat all over my body. When I bathe I use epsom salts. I don’t just put a few sprinkles of them in, I use a full cup of them, and that makes a huge difference all by itself. I also add my essential oils. There is a huge list of oils that you can use for baths for different reasons (to calm anxiety, to relax, to ease pain). When I bathe I use 2 drops of Rosemary oil, 2 drops of Wintergreen oil, 1 drop of Peppermint oil, 1 drop of Panaway oil, and 1 drop of Copaiba oil. These five oils are my go-to pain relieving oils and they smell AMAZING together. I soak for at least 20 minutes. 

I’ve switched to microfiber towels that are antibacterial as well. Not only do my towels smell fresher, my body–where breakouts used to form–is clearing up. Those old dingy, bacteria infested towels are gone! It contributes to my overall health, which, as a Spoonie, is so important.

Do you have any tricks that you’ve come up with to get through showering and bathing more quickly or more painlessly? Comment and let me know!

Yoga

So, I tried yoga today for the first time! Yes, for the first time! The reasons I haven’t tried yoga before are mostly due to fear that it’d hurt more than it’d help, but it was actually fun! I should have tried years ago! It goes onto a list of things that I should have tried years before I did, but put off for various reasons (stubbornness, fear, laziness, being the top 3). Here’s the beginning of my list:

  • Nutella (seriously, that stuff is amazing)
  • Essential Oils (you can read about how much I love them here)
  • Yoga
  • Game of Thrones (how did I not watch/read it earlier than this year!?)
  • Experiencing God (it’s a Bible Study, it’s awesome)

But anyway, back to the yoga. Some of those moves should have different names, in my opinion. “beached whale”  and “stuck, please help” comes to mind—at least in my case, but I can’t be the only one. Please, tell me I’m not the only one. The girl in the instruction video is so smooth and balanced and I’m in my living room wiggling and wavering and barely staying vertical while she just flows from one move to the other. It’s ridiculous how bad I am at it, but I have only just started, so I think it will take some time to get better. And to get in better shape.

Dating

It’s Valentine’s Day and once again I am single. That’s ok with me, though. I just got out of a relationship and I don’t really want to be in a relationship right now.

But.

Dating is hard for Spoonies. Really hard. Meeting people is hard for anyone, but for spoonies it’s exceptionally hard because we leave the house so seldom. Then there is the dating itself, which is exhausting. That is all assuming you can find a person who doesn’t think that you’re a lazy, unattractive freak. I mean, we all know how hard it is to shower on a daily basis. Putting on makeup is a monumental task at times. Then there is the actual “out” part of going out. I barely go out as it is. Having to go out to dinner or lunch and sit straight and pretend I’m fine while using my brain to make lively conversation? That’s asking a lot.

But dating isn’t impossible for Spoonies. It might feel like it at times, but it’s actually pretty possible. With the right attitude and the right partner, anything is possible. So today, as you feel sad and alone, just remember, things are not hopeless. I’m rooting for you.