Six months ago I was bed bound, or at least couch bound. I could get up to take myself to the bathroom but only with an immense effort. I managed to brush my teeth nearly every night but my heart rate was so high afterwards that I had to do a meditation to settle it down. I started physical therapy within a week or all this beginning and have slowly been climbing my way back up to some kind of baseline since. But recovery has had some unique challenges that I don’t think most people would think about unless they’ve been through something with a long and drawn out recovery.
One thing I’ve noticed is that figuring out how much I can do on any given day is incredibly tricky. Partly it’s hard because I always want to do more than I can. But the bigger challenge is that how much I can do keeps changing. Let’s say my level of activity could be put on a 1-10 scale, with 1 being the lowest and 10 being the most active. When I was bed bound I was functioning at a 0.5. As I have slowly improved my activity levels have gone up, but progress never happens in a straight line. So now I’m functioning between 2 and 4 on any given day. It’s worlds better than 0.5 but still nowhere near to 10. And the difference between a 2 day and a 4 day is huge. On a good day I can literally do double the amount of things I can do on a bad day. The problem is, when I wake up in the morning, I have no idea if it’ll be a good day or a bad day.
And so the challenge of recovery is to try to figure out every day if I can do a 2 amount of stuff or more. There’s no way to find out without trying some things and then noticing how my body reacts. I can usually tell if it’s going to be a really horrible day (below 2) by making my breakfast and tea in the morning. If those things feel pretty hard I know I had better lay pretty low that day (pun intended). If breakfast is easy then I’ll usually try some other 5-10 minute activity later in the morning. Maybe I’ll empty the dishwasher, water my houseplants, or take a walk around my yard to see how my garden is doing. On a 2 day I will usually feel pretty worn out from that and need to rest an hour or two to recover. Then I know to only do small activities and to only do a couple of them spaced hours apart throughout the day. But if those smaller things feel fairly easy I know I have a little more juice that day.
The trouble is the world isn’t set up for someone who has no idea how they will feel day to day. I’m extremely lucky that I don’t have to work and that I have understanding friends, but some things still need to be scheduled ahead of time. How do you plan for this type of life? I never know when I make a doctor's appointment or when I make plans to see friends if I’ll feel up to it when the day comes. Often I will push through and do the things anyway and then just suffer afterwards, usually with several days around 1 on the activity scale. But that’s obviously not the ideal way to live life.
I’ve been thinking a lot about what the solution to this problem is. I haven’t thought of anything that really covers all of it but one thing is that flexibility in plans is super important. I have a bunch of friends who don’t mind last minute plans. If I’m having a good day I can text a group of friends and see if anyone wants to hang out. I find it best for last minute plans to cast a wide net, since often people are busy. But this method has worked often for me in the past. If I plan a meal I plan it not for a specific day but for a time of the week. For example I’ll plan to make soup over the weekend, or a pasta dish early in the week. As soon as I have a day that I feel up to it I make the food.
Another thing to keep in mind is to plan for inconsistency. What I mean by that is to plan for the fact that there will be bad days. Cooking extra food when I feel good enough to cook helps with this and makes it easier to eat healthy foods when I don’t have the energy to prepare a meal. I find showering to be particularly energy intensive so I bought some “shower wipes” like people use on hiking trips. That way if I really need to get clean and I just don’t have the energy to shower I can still get a bit cleaner. Another way I plan for this is to order things online and have them delivered to the house. If I’m feeling good I can bring them in and sort them out when they arrive, but if I’m not feeling good they can wait until my husband gets home. This of course doesn’t work with perishable food items, but it works well with almost everything else.
Another challenge with recovery is the mental burden of feeling like I “messed up” if I over do it one day by accident. I can’t tell you how often I get mad at myself for doing too much without realizing it. I’ve been practicing being kind to myself on these occasions but I absolutely still need more practice. The truth of it is that I could do everything right and I’d still over do it from time to time. With energy as low as mine is and with as many fluctuations in symptoms that I experience it is impossible for me to “do everything right” all the time. If I look at this objectively I can see that I actually have a pretty high success rate overall, but the times of struggle are always the ones that stick out. Successes often go unnoticed or at least unremarked upon.
The last strategy I use to try to pace myself is resting between activities. My basic set up is to do one thing, maybe a house chore or a garden task, and then rest until I feel about 95% better. Once I’m basically rested I can take on another thing, followed by another rest period. Some days I need to rest 10 minutes between things to fully recover, some days it's multiple hours. But I’ve found that generally when I rest fully in between things it allows me to assess more accurately how I’m feeling and avoid riding a wave of productivity until I crash.
There is a ton of uncertainty in living with chronic illness. I have to wake up every morning with no idea how I’m going to feel that day physically, or mentally. I have to be constantly assessing my energy levels from doing the types of things most people take for granted, like basic personal hygiene and preparing simple meals. All the while I have to slowly and smartly try to do more than I could before. If I don’t try to push the boundary a little bit then I will never get better. It’s a really tricky line to walk. If you are recovering from something I encourage you to be patient with yourself. This is really hard and I’m sure you are doing a really good job at pacing, even if you still over do it once in a while. You can do everything right and still end up in a flare.
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