I had two lightbulb moments this week. Both made me sad, but also gave a deeper understanding of the experiences of living with CRPS/RSD, so I felt it was worthy to share. I may feel better after writing it out and feeling like someone can understand me (whether anyone can or not).
Lightbulb No. 1 – I’m not lazy; it’s the pain.
I feel lazy. Really lazy. And as any of my friends who know me well or even moderately well will tell you, I’m anything but lazy! My closest friend, when I told her I felt lazy, responded emphastically with “You? LAZY? SO NOT!” (I mean, Sheesh! Doesn’t going to the gym for an hour a day 4-5 days a week to get a good workout prove I’m not lazy?)
I feel unmotivated to do much; some days I feel like I just can’t get my butt up and moving. Take today as an example. I’m not depressed, my gut is “ok-ish” and I don’t totally feel like I’m going to pass out today (somewhere in-between). My legs are hurting pretty badly, however. But it’s a far cry from one of my really BAD days; I could be in a lot more pain than I am at present. I’m trying to be grateful.
It seems I should be motivated!! On the inside, the person I feel that I am underneath all the pain and health issues, I believe I really am a motivated person. I have many goals and dreams, and I take action to move towards accomplishing those even when those actions are small (insert come cliche about something big being made out of lots of little small pieces). And yet I’m stuck in my wheelchair asking myself, “Why can’t I get by butt moving?!” and looking at the small pile of dishes to be washed saying, “Come on; it can’t be THAT hard!”
The lightbulb moment came when I realized that even all of these “little tasks” – the dishes, the laundry, cooking, scrubbing the toilet, you name it – cause pain in my legs (and often my back too). EVERYTHING makes me hurt. Yes, I push through it daily and I keep going as best I know how, but it still hurts.
A few years ago, I associated food directly with pain. My gut was such a mess that I couldn’t even smell food without being nauseated nearly to the point of throwing up. FOOD = PAIN. Sometimes my friends would literally have to watch me eat (I’d push the food around my plate for over an hour, gagging as I tried to get it down, tears in my eyes) to make sure I really was eating…because when they weren’t there, I wasn’t. Eating was its own form of torture, and I am not exaggerating. I’d cry about eating every day. Liquid, solid, it made no difference – I was going to hurt even worse after I ate, period. It’s no wonder I felt unmotivated to eat!!
Now, however, I’m able to eat most days without such terrible consequences and I generally ENJOY EATING (I NEVER though I would say that!) because I no longer directly associate foods that are safe on my diet (SCD) and which don’t make me sick with the pain I’ve had before. Therefore, those foods are enjoyable and make me feel somewhat better after I eat them – at least they give me strength. I am very motivated not to eat foods that I know make me sick and give me pain.
The situation with motivation and doing things myself is the same. Whereas before I specifically associated foods and drinks with pain, I now associate ALL these activities of daily living with PAIN. DOING ALMOST ANYTHING PHYSICAL = PAIN. Period. Even things that would be so helpful for me to enjoy, such as cooking (since I must cook everything from scratch on my diet), are intensely painful and therefore I’d rather avoid them; I still hate my kitchen, but it’s no longer because I’m afraid of the food there and the gut pain it represents – I’m afraid of the leg and back pain it represents. It’s tough when you associate everything good with pain because it robs you of the freedom of living. Emotionally, I feel like it is wrecking my life – I know that sounds overdramatic (you try my body on for 10+ years!), yet that’s how it feels.
I didn’t usually feel lazy for the fact that, a few years ago, I couldn’t eat. In my mind, it’s lazy people who eat too much generally speaking (at least in the USA). I did sometimes feel guilty for having a hard time getting the food in. I used to remember Proverbs 19:24 which says “The sluggard buries his hand in the dish and will not even bring it back to his mouth,” but realized my interpretation of that verse was likely not what was intended by Solomon. I told a friend, “It’s not exactly that I don’t want to eat; I’m literally starving! I’m sooo hungry! I feel like passing out! And yet I just can’t handle any more pain and I’d still prefer to starve than to have increased pain which I can avoid by not eating.” I’d wrapped my brain around the FOOD = PAIN = FOOD equation, and because I understood it more clearly, I was able to reduce how often I kicked myself mentally and focus on the goal.
I also can now look back and see that my negative food/pain associations were mostly corrected. I do still struggle at times, when I’m having increased visceral hypersensitivity etc. Yet it gives me hope to look back and say, “Okay, I had some really messed up ideas about food…what I considered a full meal wasn’t enough to feed a mouse for a night. But now I can eat healthy portions, enjoy the taste of my food (another huge accomplishment), enjoy the act of eating and the smell of good and safe foods. Look how far I’ve come!”
I want to generalize this hope to my current situation. If we can get the pain under better control, it may be that I will have a more positive outlook on activity and more motivation for these physical activities that previously caused so much pain and exhaustion.
Today I was wondering why I can go to the gym and bust my butt for an hour each day, but when I’m home I cannot do the dishes! Doesn’t sound logical, does it? I kept kicking myself over this incongruity, and then today I figured out the answer. 🙂 It’s because at the gym I don’t do many weight bearing exercises through my legs; I focus more on cardio and range of motion. That recumbent stationary bicycle is my go-to, and while I am putting force into the pedals, I’m not standing and I’m not putting all my weight into my legs, so I have less pain pedaling for 30-40 minutes than I do standing for 20 minutes (which causes the blood to pool and my legs to swell and turn blue). I do better moving than I do with standing still, and almost all of the tasks I find most painful at home require standing relatively still (cooking, laundry…). You might tell me to do these things in my wheelchair, but my counters (though supposedly handicap height) still come up to my armpits and doing any of that from a sitting position makes me dizzy and gives me wicked back pain. Alternate? I do that too – so that I can have both wicked back pain, wicked leg pain, and be dizzy from it all, yay! I was an occupational therapy assistant in my previous life – I’m good at adapting, it was my job…but there’s only so far this can take you, and I’ve hit the end of what I can do to make this situation any better without further medical intervention or revelations from God regarding natural means of managing all of this.
I came to the conclusion that it’s not even that I’m truly unmotivated. I am motivated, I want to do these things for MYSELF and be as independent as possible so others don’t have to help me. I want to care for my home. And I sure do put in a hearty effort in spite of the pain every day. It’s the pain that’s making this so difficult.
Then I feel angry because I’m allowing the pain to control me. I feel like pain shouldn’t be controlling my decisions – In Christ I should be strong enough to push through the ultimate pain. Then I’m reminded of saints from whom I’ve received such comfort – Joni Eareckson Tada, Elaine Kinney (a personal friend), Charles Spurgeon, and others – who endured such pain and they were not able to break free from their wheelchairs, to go traveling all over the globe anytime they wanted to share the Gospel, to do their housework. So there’s some way in which the limits imposed by pain must be respected.
And perhaps if I can actually find that balance and termine where these limits should be respected for what they are, I can find peace in resting instead of constantly fighting to DO MORE CONSTANTLY for myself. Maybe it’s then that I can lay down in bed at night and stop wondering if I’m lazy. Maybe then I could stop feeling like I have to prove myself over and over. And maybe then, even if the pain doesn’t stop or decrease, I will find that my thoughts about all of this will become more balanced like they eventually did with the food = pain scenario.
If you have suggestions regarding how to think about this more clearly, I’d love to hear them (unless it’s a pat phrase response – I’ll still try to be gracious if I get passed a few of those bones, but I can’t say I’ll enjoy it… at least I can be honest here).