Sometimes, we end up getting drawn into conversations online that deserve more than fleeting visibility. A few days ago, I found myself on /r/ChronicPain in a now-deleted thread that started as a rant from another spoonie who was vehemently disgusted with some of her fellow spoonies who aren’t adequately taking care of themselves, in her opinion. Since we all tend to judge other people by their choices, I could understand where she was coming from, but she wanted to know how she might learn to have more compassion, and there were a few of us who decided to help her with that. She deleted her post after thanking us for giving her our perspectives, which I can also understand, because the post made her opinions sound really ugly. Among other things, she was infuriated by one person who stopped following the gluten-free diet that had provided some pain relief to her, and she was up in arms about “lazy” people whose conditions would benefit from light exercise, yet they refused to exercise.
One of the commenters who beat me to replying made a statement that really resonated with me:
“Perhaps they are doing what is best for them emotionally even if it is not ideal physically.”
I quoted this phrase and composed my reply in specific relation to it. It’s all about triage, and I think it’s something we all should understand about everyone else, not just those who are chronically ill. We’ve all got or own “stuff,” and we have to deal with it in order of priority. Sure, it may seem like people have their priorities screwed up, but sometimes, it actually makes sense if you only knew the whole picture.
This is what I said:
This is an important factor. My pain is only my most recently developed problem. It’s hard to judge how the rest of it cropped up chronologically because I was clearly symptomatic before I got any diagnosis or treatment.
I started seeing my psychiatrist for anxiety and depression in May 2008. I’d recognized my chronic fatigue syndrome the previous November, but it’s fair to say I’m still not receiving adequate treatment for it. At least my psychiatrist was able to prescribe me an antidepressant that also provided the first refreshing sleep I’d had in years. It was May 7, 2013 when the pain started. I remember the date specifically because it was my mom’s birthday and I’d attended a networking event for women in business the previous day. It was both my joints and my muscles, and I relied on a cane and Bengay for months before my new rheumatologist threw up his hands, unable to find a better course of treatment for me. The abdominal pain first sent me to the ER in January 2014.
Exercise would probably help my IBS (for lack of a better diagnosis) and keep my joints and muscles from getting as sore from lack of use, but I’m simply too fatigued and weak for anything remotely considered exercise by healthy people. After 7 minutes of sorting laundry (I used my Fitbit to time it) my heart rate is close to cardio levels, and I’m so exhausted that I can’t move on to the next step, putting the clothes in the washing machine. I’ve tried doing it one after the other, but I’ve literally collapsed twice in my attempts. Laundry is the one chore I’m responsible for in the house, and I hate that I can’t keep up, because my husband does literally all of the other housework.
Eating right? I’ve made some significant changes to maintain a high fiber diet and to avoid synthetic folic acid, which is added to all white flour in the US. (Genetic mutation.) But there are foods I simply can’t eat due to taste or texture. Did I mention that I have Asperger’s Syndrome? There are foods I know I shouldn’t eat because they aren’t good for me (most bread products at any restaurant) but I can’t avoid completely because I get really depressed when I deprive myself of the foods I enjoy. I’m trying to eat fewer calories than I burn each day, but it’s not always possible. When my CFS flares up badly, I may only burn 1400 calories because I’m mostly bedridden, but I realized that restricting my intake during a flare makes it last longer and cranks up the intensity of the crushing fatigue. But being bedridden while eating more food can be bad for both my pain and my IBS.
I have to use triage to treat my various conditions. And if that means I’m going to eat a giant piece of chocolate cake to help cope with my depression, well, that’s just how it’s gotta be.