The audacity to think that anyone could ever really understand how to cope with CRPS! The only thing that is for certain is that this disease a different experience for everyone who has it. Our common ground, however, is that we have to keep coping. We have to get better at it. So we may as well talk about it.
It will take time for you to develop your coping strategies and skills. Keep looking. It will surely accumulate over your lifetime, and although I am only in my thirties I can safely assume that decades from now I will still learn new ways to cope.
For now, here are some things I have learned while trying to cope.
1. Never underestimate a phone call
Okay, we spoonies talk all the time about how we are the *only* ones who get it. That is true to a large extent, but we can still talk to our loved ones. Calling my sister has saved my ass so many times. I acknowledge that I am lucky to have a good support system to do this with, and not everyone has that. But whoever your people are, I guarantee that they will be happy to hear from you if you reach out when you feel hopeless. You don’t even have to talk about the pain. You can just talk together.
2. Find things to do from the bed or couch.
Having hobbies you can do laying down (ahem, blogging) will help immensely. There was a significant amount of time between when I was newly disabled but I still hadn’t found any new hobbies that I became really depressed, if anything just out of boredom. I distinctly remember the day I wrote in my journal;
“It is time to get some fucking hobbies to do while I lay down, because THIS IS MY LIFE NOW”
I actually, consciously, started brainstorming and googling what I could do. I remember being quite self conscious about it at first, until I realized it was actually a critical move to help myself through a hard time. I tried many of the ideas and within a couple months, I had some new hobbies. I started crocheting and loved it. I started branching out to different genres and devoured books, and kept track of it all on Goodreads. I started keeping a journal and writing more. I started making playlists and listening to podcasts. I took classes. I found the Chronicloaf 24/7 TV channel.
I did this with little hope that I would enjoy my life as much as I had pre-chronic pain, but against the odds I put up for myself – I started to have a great time. I was enjoying life more and more. It took some very therapy-esque conscious effort and then getting out of my comfort zone, but it worked. And now these things are very much a part of my identity and I don’t even really remember what it was like before.
3. Don’t let your ego stop you from doing “adult colouring” or something else that the previous, “healthy” you probably wouldn’t have done.
It actually helps. Colouring actually helps. I thought it was ridiculous at first; a waste of my time. If I am sitting in bed all day – why not do something productive? Doesn’t this just contribute to the whole stereotype that we are lazy for resting so much? And other things my internal ableism says?
No, we don’t have to be constantly productive, and no, we are not lazy. That’s not how the chronic pain life actually works. You can be productive and still have several hours in a day where you need to rest. What will you do then? Finding something to fill in the time and make your hands busy goes a long way.
Focusing intently won’t replace any medications or therapy, but it is yet another “tool” in your “chronic pain toolbox” to use alongside all that other stuff. Your brain can only focus on so many things at once. If you can find something you are into and it helps you to forget about the pain a little bit here and there, I would call that a successful tool.
4. Let go of the people that don’t accommodate you.
We all lose friends to illness. It sucks. People will tell you this over and over, that it is their bad and it is not on you, but somehow you still feel like it was something you “did wrong”. There are people that stayed my friend for the first year or so and then petered out. Stopped reaching out. Stopped answering calls. I understand why it was hard for them to change with me as I got sick. Accommodating me as a friend meant they needed to change their efforts and come to my house more. I couldn’t go to their place as much, we couldn’t go out too late, I would ask them for rides to the hospital, and I was a different person talking about medical treatments a lot simply because it took up most of my time.
But these changes wouldn’t mean that I would stop caring for them as I did before, when I was healthy.
Eventually I decided to let these few friends go and stop making it a big issue. We had just drifted apart, and although there was a bitter taste because I knew it was mostly due to my becoming sick, I decided to stop caring. It felt great.
Our time is somewhat limited. I don’t know about you, but I can manage a couple social outings a week. maybe one. I only have so much energy for it anyway, so why not spend it with the people I love and who love me?
I know, I know, we have all rested so damn much already. This is the most annoying coping strategy on the list. I don’t have to tell you this. On one hand, you can flare no matter what you do or how much you rest. On the other hand, rest can be preventative and might lessen the inevitable flare.
It is still an important thing to keep on top of. For example, I’m in a new place with energy levels lately. My latest treatment is mostly working, after the recovery days, so I need less rest in general. I don’t know what to physically do with my body all the time, now that I am not in bed all day and night. I feel more rested from less actual rest time. So after a few trial an error weeks of overdoing it, I decided to implement a routine. Get up and do whatever I need to do first thing every day, then as soon as that fatigue hits – and I mean as soon as it hits – actually stop moving my body and rest. It is one of those efforts that seem natural and instinctive in theory, but in reality is quite the opposite.
Just two more dishes to wash? Leave it. Rest. Need to make another phone call? Stop. Rest. (Yes this is infuriating but trust me, it is better to deal with these minor inconveniences than to deal with worse flare up. And as a bonus, you will become a master at patience.)
Fatigue can hit no matter where you are and what you are doing. If it hits while I’m stuck somewhere out in the world, I Macgyver the rest time the best way I can. This mostly involves a lot of putting the car seat all the way back and being 30 minutes late to things. Sometimes, it is getting out of my wheelchair and onto another chair to put my legs up on my own wheelchair, throw on my headphones, and blissfully ignore passers-by.
These five ways to cope just scratch the surface of what coping entails and what it feels like in the moment. There will be tears – many, many tears – but eventually, one day, you will get there.
…jk. There isn’t really a “there” to get to. It is more like a “check in with yourself every day and try not to overdo it too much” type situation. But you know what I mean.