I’m substituting one of the bonus prompts for today’s NHBPM post: How do you take time for yourself? I’m spicing that up with a little bit of: How do you have fun?
Living with chronic pain is a 24/7 job. One of those crappy jobs that they make consider-yourself-lucky TV shows about.
There’s no going home at the end of the day. There are no weekends. There’s no time off for public holidays, or family events, not even for Christmas. There’s no understanding that this event won’t wait or be repeated when you’re feeling better. There’s no allowance for the effort that you’ve put into organisation, no reward for your hard work, no promotions.
Management of severe conditions like Complex Regional Pain Syndrome is something that can’t be shoved to the side for a few hours without repercussions. Functioning around CRPS symptoms is like the delicate dance of a rhythmic gymnast; balance can be difficult to maintain as you manoeuvre through the hoops of daily life. If you happen to drop the ball…well, it’s all over for you and that tournament is lost. Time to temporarily retire, resuscitate your resilience and prepare to return to the competition floor when your strength is rejuvenated.
Sheesh, Caf, chronic pain sounds so bleak and consuming, how do you ever have a good time at all?
Good times can come with a hefty cost for people living in chronic pain. Going out for a few hours can rapidly consume the energy that you’ve been saving up for a week and suck up the strength for the next week as well. Having fun is an important part of being a person and one that it’s not healthy to sacrifice completely.
Anybody who lives with chronic pain is familiar with the occasional need to exhaust ourselves to the point of painful consequence in order to participate in something that we love to do. Pacing is a wonderful pain management tool, however not everything can be done in parts, or over time, and having fun sometimes means throwing measured steps to the wind and preparing to manage the fallout later. That’s future Caf’s problem.
Of course, it’s important to employ all techniques that you can to try and lessen the pain of going out to have a good time. Different people will have different requirements in this department. For me, being prepared to party can include things like packing The Fonz (my wheelchair), napping during the day, extra Feldenkrais before and after, breathing deeply and letting go of any physical tension that I can find lurking in my body.
There’s also a bit of mental preparation if I’m going to be chatting to people, or in a crowded place. Everybody has energy and my heightened sensitivity means that sometimes I can feel far more of it than I’d like to. It’s kind of like when super heroes can read minds, but then they go crazy because they can hear everybody’s thoughts and they can’t ever turn it off… but less dramatic.
I can’t fight that energy off, but I can allow it to flow without getting annoyed at it and causing it to clog up my own aura…or whatever. Before I had realised that external energy was affecting me, I just put the ramifications I was feeling down to regular pain and fatigue, which didn’t give me any power in overcoming those symptoms. Being mindful of energy helps me to not be affected by it and that’s one of the neatest tricks that mindfulness knows how to play.
But what about ME time?
How do you differentiate between pain management (caring for oneself) and just relaxing (also, caring for oneself)?
How do you relax when you’re always reclining anyway?
How do you pamper yourself when you can hardly stand to have anything touching you?
How do you actually be lazy when everybody thinks that you’re just being lazy all the time?
It’s all a mental game. The only way for me to take a break from CRPS is to decide to take a break and line up all my little ducks so that I have the best chance to do so. When I want to mentally check out for a while, I have to get mindful about it.
It might sound corny, but the first thing I need to do is give myself permission to take a break. You, Caf, you have permission to rest, you are now allowed to relax.
Just like planning a vacation, it can be helpful to offer up this permission with a date and time. You have to do this and that now, Caf, but Sunday morning you don’t have to do anything and you are allowed to relax then.
Preparedness is reported to be a boy scout’s best friend and whilst I’m both a girl and extremely un-scout-like, preparedness seems to accept me as one of its buddies anyway. I can prepare to relax by pursuing active pain management techniques before I sit down. Do your Feldenkrais first, Caf, then the need to be doing it won’t be niggling at you while you get lost in the fabulous television world of Nashville.
The hardest thing about relaxing is the not-worrying part. You know that, Audy, even those of you who don’t suffer from chronic pain.
Sometimes it can help to write down the things that are currently bouncing about in my busy mind. This helps to solidify worries that will genuinely need attention later and also by bringing these thoughts to the front of my conscious mind so that if they pop up during relaxation time, then I can recognise them and remember that it’s alright to ignore that thought until later. That’s not a pressing concern, Caf, it’s been noted and you’ll deal with it at that time that you decided upon.
Once you get through all this permission giving and recognising of the need to take some time out, it can be hard to think of something fun that you can do within your physical capabilities. I count learning to recognise joy, beauty, and even fun where I’d not seen it before, amongst the bittersweet gifts that CRPS has given me.
Well, not a gift exactly, more like a drop you in the middle of the jungle and you survive if you do and sayonara if you don’t… forcible lesson, but a valuable one just the same.
I’ve learnt to have a greater appreciation for what I am physically feeling when I enjoy something.
Does it get adrenaline running? Focus on the physical sensation of that and you can immediately magnify it through the simple application of attention.
Does it make make me laugh? Really laugh, really appreciate that feeling.
Does it fill me with so much anticipation that I literally shake? Just enjoy that, just you keep on obsessively loving the thrilling tale of The Walking Dead, Caf. Don’t forget to breathe.
Television shows, or movies that I enjoy can be a wonderful way for me to take a break. It’s an easy way to take my mind to another world, to get lost in the colours, sounds and stories there. Also, watching them is unlikely to increase my pain levels. Books house a similar escape, albeit one that requires a little more concentration on my behalf. Reading blogs can require less effort, but still engage my mind for long enough that it gets a little break from its regular programming, or maybe even learns something new.
Crafty pursuits can be a saviour when I want to give my mind a rest, but can’t seem to stop the unwanted thoughts from circulating. Sewing, drawing or painting can absorb me completely within their colours, shapes and methodical application.
Everybody has their own things that they do that make them feel a little bit better for whatever reason. The most important part of ME time is figuring out what those things are for you, or recognising them when they aren’t necessarily the activities you’d been expecting. Who knew you had a talent for knitting? Who knew that you enjoyed singing? Who knew that nail polish could make you feel better?
I like to think that there is never a reason for me to stay down in the dumps. Holding onto this simple thought helps me to keep searching for ways back when I get lost in the land of not coping. It can take weeks for me to find a way back, or even months. It can also help me to snap back within minutes on some blessed occasions.
It’s too easy to give in to my feelings of depression and listen when they tell me that I can’t do anything fun anymore. Fighting for enjoyment is much more difficult than accepting an absence of it. Fighting is risky business and sometimes, I lose. It’s always worth it, however, because every time I win, this life with chronic pain gets a little bit lighter.
Thanks so much to everybody that has been supporting me in the NHBPM challenge! If you like what I am doing, please share these posts with the people that you share things with or click that little thumbs up. It’s CRPS Awareness Month, which is why I’m choosing to disclose a little more about my health on a daily basis. The more awareness that we can raise, the easier it will get for people who are navigating the choppy waters of chronic pain.
Love & Giggle Breaks,
This post written as a part of National Health Blog Post Month, run by WEGO health. Check out what people have been contributing via #NHBPM on Twitter, or joining the NHBPM Facebook Event.