When you are slowly coming to terms with being chronically ill, and slowly realizing that you are no longer able to do what you used to be able to do – like being front row at a Rob Zombie concert 🤘, or taking your dog to your favorite hiking spot – you go through a lot of emotions. Kind of like the 5 stages of grief:
- Denial – “This isn’t a limitation, and it’s definitely not permanent, I’m just not able to do this today but tomorrow I will be, so I’m going to keep saying yes to everything I get invited to.”
- Anger – “Ok I’m upset that I was too weak to go to the beach last week, and I’m frustrated that I was too nauseous to meet friends for brunch this week, and I’ve had to cancel a lot of plans recently, but nothing will keep me from next week’s music festival that I paid a ton of money for! YOU WON’T WIN SPIROCHETE!”
- Bargaining – “Alright, so I might be sick, but I can still do what I want, I’m just not pushing myself hard enough. It’s not the illness that’s limiting me, it’s my lack of will power! All I need to do is push through whatever pain I’m feeling and I’ll be able to do it ALL!”
- Depression – “Wow. This is getting really bad. I’m cooped up and lonely, but too sick to go out. My life is changing, and I feel completely out of control of my body. Every time I say “yes” to a friend’s invitation I end up cancelling last minute. Every time I think I can do something, I end up not being able to do it. I don’t know what else to do but cry.”
- Acceptance – “Here’s the reality: I’m sick. I’m losing some abilities. This is just where I’m at right now, so instead of trying to push against it and crumpling into a nauseated, painful, depressed, guilt-ridden rag doll, I need to figure out where my limitations are, and how to tell what I can do on any given day.”
I wish that this experience of coming to terms with your new limitations was a simple, 5-step, linear path, but like anything involving health and emotions – it’s a rollercoaster. And just when you’re starting to learn how to read your body’s current set of limitations, you start herxing or have new symptoms or side effects that kick you into an entirely NEW set of limitations, so it starts to feel impossible to predict how much energy you’re going to have for anything.
That’s when my mom’s friend, who’s a nurse for elderly and disabled patients, said her favorite motto for her patients is:
“Do 1/3 less than you think you can.”
It’s an easy rule to live by (when you aren’t bargaining your way out of it – which will still happen so don’t shame yourself for faltering now and again!) and can help keep you from pushing yourself over the limit when you’re still not quite sure where the limits are.
For me my most debilitating symptom is my back pain. I’m a part-time wheelchair user (I don’t need it everyday, but if I’m going to have to stand or walk for long I can’t go without it), and I was stuck in denial and bargaining against needing a wheelchair for a couple years. I wouldn’t accept that my back was getting this bad. I would keep pushing myself too far, keep forcing myself to stand longer at the nightclub, or just go to one more store at the mall, or walk just as fast as my friends are walking, and afterwards I would be stuck on the couch in pain for hours, or I would be so weak and out of breath I’d feel on the verge of fainting.
That’s not a good way to treat my body. Especially when it’s already dealing with so much. It’s also not a good way to treat my mind; not accepting my limits and feeling guilty that I should be doing more. It’s already a crazy mess in my mind, I don’t need to add more anguish to the mix.
I’m definitely not perfect with this. I still forget the motto sometimes. Like when I’ve gone through a particularly bad numbers of days of being too sick to leave the house, and then wake up feeling even just the tiniest better, and so desperate to just DO SOMETHING cuz I’ve been SO BORED! And then I see that there are dishes in the sink, and laundry to do, and groceries to buy, and walks I owe my dog, and that shop I want to go to, and the farmer’s market I’ve missed, and on and on and on. In those moments I have a hard time not planning a full day of activity because I just miss that feeling of doing things. But instead of being too hard on myself for not respecting my limitations that day, I try to practice self-compassion by remembering one of my favorite Al-anon slogans:
Progress not perfection.
You will forget or purposefully ignore the 1/3 less motto. You will push yourself too far, you will do it knowing it’ll cause you a lot of pain because you are just so frustrated, or so excited to do something. And it’s okay, because being a “perfect sick person” is impossible. All you can do is try to make a little progress; progress toward learning how your body feels when you’re about to approach a limit; progress toward flexing the “restriction muscle” to stop yourself from doing too much; progress toward being more gentle with yourself; and progress toward practicing SELF COMPASSION ❤︎ as you go through the ups and downs.
So nowadays, after two years of being disabled by Lyme, I just try to take out at least one thing from my mental list of things I want to do. So instead of saying to myself: “Okay Lisa! We’re feeling alright today, let’s mail those boxes at the UPS Store, pickup some Bubble Tea, and go grocery store shopping,” I’ll decide: “I don’t want to ruin this good day by pushing myself until I feel bad again, so I’ll go to the UPS store, get some bubble tea – yuuuuuummmm – and order my groceries online to be delivered instead. I’ll do 1/3 less than I think I can.” ❤︎