The topic of disability has been on my mind quite a bit this month and not just because several people I know have written about it in various online outlets. It’s been, in my parlance, not a great health month. This is different than a normal health month or a bad health month. It’s something in between. It speaks to both the unexpected nature of chronic health problems and the difficulty in managing the myriad expressions of those problems and negotiating the impact that those expressions have on the rest of my life.
Without going into exhausting and tedious detail, I have a grab-bag assortment of health problems are not all that unusual and some of which are co-morbid. I have chronic pain due to an advanced case of degenerative disc disorder in my cervical vertebrae; my neck x-rays show my bones curving the wrong way though it’s not terribly noticeable under normal circumstances (I tend to walk with my head and neck forward which is a habit borne of bad postures and anxiety as much as structural problems and is a habit I’m working on correcting for my self-esteem as well as my muscle tone). I also have persistent pain in my right knee due to a bad fall I took as a junior in college. I stumbled on a bit of uneven sidewalk and toppled sideways. Nothing was broken but nothing was normal after that, either. That’s why I walk with a cane sometimes.
I’ve also got some metabolic/endocrine problems that are all more or less crammed into the medical catch-all bin labeled PCOS/syndrome X/metabolic disorder/sorta kinda type 2 diabetes. (This bin is imprecisely labeled in my personal case; other people have much more clearly defined diagnoses.) After several years of not having the medication I need to control this, I’m finally back on it for the time being (it’s the $500 stuff that nearly went bad when my fridge quit – it’s back working, yay!!). That could change in a few months. This knotted mess of disorders might not seem quite as disabling as, say, chronic pain is but in its own way, it can be. (There’s also some unclearly defined mental illness that is its own knotted mess of debilitating symptoms but perhaps that’s a post for another day.)
I rather fliply commented the other day that rest is not a choice I have. I’m kind of forced into it – and this weekend I was.
A sugar crash is a frightening and debilitating experience. No matter how many of them I’ve experienced, there’s always an element of fear because I know that if I don’t fix this problem right away, everything will get much worse. They happen very fast and there’s not always much warning. Just suddenly I’m cold and dizzy and my head feels tight. I start to feel weak and disembodied; my muscles don’t want to reach or hold or grasp or clench. Pretty soon I start to tremble uncontrollably; this gets worse until it gets better. The spaced out feeling intensifies, as does the cold, tingling feeling.
A quick dose of sugar will begin to fix things but it can take up to 20 or 30 minutes before my system starts to feel recovered. Ideally this sugar should be followed with some protein or complex carbs for a slow release of nutrients.
Even though my system feels recovered I’m entirely exhausted by the occurrence. On Friday I was so worn out I couldn’t sit up. Lying in bed felt like too much work. It took something like 40 minutes just to get up the strength to go to the bathroom or get a drink of water and then I’d be back in bed for another 40+ minutes. This happened in the late morning. The rest of my day was spent more or less in bed. It didn’t matter that I had 2 jobs that needed my attention that day. Nothing was going to happen.
This is not unusual. This is generally how it is. Even if I eat all the right things at exactly the right time, some unknown factor pushes my system the wrong way and everything comes crashing down.
Rest can feel like its own kind of tyranny because once the reserves of the body and mind are exhausted, the biological mechanism itself refuses to do any more. It’s not laziness. It’s not lack of motivation. It’s not a de-incentivizing of active productivity. It’s a biological fact, the same as thirst or a bleeding cut. You can’t *not* pay attention to it after a certain point. There might be a certain wiggle room with regards to precisely how and when that fact is attended to, but it always must be. Else it will halt everything and you’ll be forced to deal with it.
As a result of this particular sugar crash I spent most of the weekend in bed. Spending a day in bed after such an event isn’t unusual but still feeling the effects 36+ hours afterward is. And like so many other disabling conditions and resource-intensive health concerns, spending several days taking care of this concern has caused the rest of my routine to get shuffled down the priority list. My apartment is not as clean as I like it to be on a Monday. Most of my dishes are in the sink. The kitchen is full of this weekend’s recycling. My meals for the next few days haven’t been cooked or prepped.
Rest is a reality whether I want it to be or not. Unfortunately, even a weekend of rest isn’t going to return me to some predictable level of high energy and ability. I might have to cope with other health issues (like a migraine that tagged itself into the game a couple times over the weekend) or I might have to toss out the priority list again for a work-related deadline that requires what energy I’ve collected.
My life is a cycle of rest and recovery. In this, I’m not different than anyone else. What is perhaps different is the disabling nature of sugar crashes and the all-consuming quality of the rest that is forced to follow. The frequency of these occurrences and their unpredictable nature also makes them rather debilitating This cycle curtails what I get to do with my time and it limits my options in many different ways.
I spent all weekend working on this post not just because I wanted to add some of my own words to the larger conversation happening about disability and the way it impacts our daily choices. I also wanted to explain why I’ve been away from the blog lately. I’ve been resting and when I recover, I have other more pressing priorities that require my energy and attention. I miss being here though, so you can feel confident that I’ll be back sooner or later.