The following is the basic script from a self-care talk I am giving in my Fistula Support Group. I thought it would be useful to share here as well. I have collected the information below over the years from my work as a community health advocate, and from living with chronic pain and an autoimmune disease for the past 7 years.
Let’s begin with The Spoon Theory because it is a useful way to explain to your friends and family what you are dealing with. The Spoon Theory is a metaphor for people living with chronic pain, chronic illness, and disabilities. The notion is that we begin each day with a certain number of spoons. Each activity we engage in takes up a certain number of spoons. For example, getting out of bed and taking a shower might use up 2 of your spoons. Going out to run errands might take up 3 of your spoons. Going to work for a full 8 hours might take up 10 of your spoons. Your spoons represent your energy, your life force, what energy you have available. Those of us living with fistulas or any chronic illness have less energy to work with, and seemingly small, everyday tasks can take up a lot of that energy. Most people get up, take a shower, make breakfast, and don’t think twice about it. I, however, have to think about my day ahead, and think about whether I will have enough spoons to take that shower, make that breakfast, AND do whatever else I wanted or planned to do that day. When you only have 12 spoons to work with in a day, you have to prioritize much more often. If you’re going to socialize, have a night out with your friends, you might need to plan to have a rest day the next day, or at least half a day of recuperating. Sometimes, inevitably, we will use more spoons than we have, and end up with a spoon deficit. When this happens, our bodies let us know, and force us to rest. Having to manage spoons doesn’t mean you can’t have a life, it just means that in order to thrive, we have to put our health first. That might mean slowing down, or doing LESS, but it doesn’t mean you can’t have fun and do fulfilling things with your life.
- Ask for help when you need it. It isn’t a sign of weakness. It’s easy to fall into the awful rut of feeling like a burden to our loved ones. My family regularly has to remind me that it’s okay to ask for help, that they want to help. The people who love you want you to be okay, and sometimes that means helping out when you need it.
- Talk about your feelings. Don’t bottle things up. This might look like a therapist, or just venting to a friend over tea. If you can’t afford therapy, there are even apps now that connect you to a licensed therapist for low cost. I think that this is particularly important for people living with colorectal health issues. There is so much shame and taboo surrounding the rectum, and often we feel as though nobody wants to hear about it, or we are too ashamed to talk about it for fear of disgusting people. The truth is that there are people who will listen and understand and WANT to hear what you’re going through. You will find friends who you are safe talking with this about, and I urge you to take some leaps in vulnerability and tell at least one close friend what you are truly going through.
- Keep a self-care checklist handy (I keep mine in a note on my phone) for days that you are really depressed, or overwhelmed by your illness/pain/disability. This can be really helpful—sometimes we don’t even realize how much we’ve been neglecting ourselves. Your list might include these questions: Have I had a glass of water today? Have I eaten recently? When was the last time I took a shower? Am I in pain, and if so, am I taking the steps needed to manage it? Have I talked to anyone today? Have I moved around or exercised at all today (it’s okay if you’re not able to)? Have I done something I enjoy and find fun? Are there things that are stressing me out that I can take action on to alleviate that worry? Self-care lists might look different for each of us, but the general idea is to keep a list handy to remind us of basic self-care when we might be too preoccupied, depressed, or overwhelmed to think of in the moment. These small self-care tasks can make a world of difference to your mood and comfort, and either way are necessary. Even if you only have the energy to do one thing on your checklist, that’s awesome, and one thing you have done to take care of yourself.
- Self-loooooove: sex and masturbation are healthy modes of self-care. Though it might be the last thing on some of our minds, especially those of us with draining fistulas, the reality is that our bodies appreciate that kind of self-care, and it’s a totally valid way to relieve stress and tap into some joyful feelings. Orgasms are super healthy, and nothing should stop you from having them if you are able to! (as my good friend, Tyrone, always says, “Embrace your inner Samantha!”)
- Decide to forgive yourself for canceling plans, or finding that you are unable to complete all of your tasks for the day. Living with chronic pain is exhausting, and often we want to do so much more than our bodies are able to manage in one day. I recommend letting your close friends and relatives know that your current conditions means you have to be able to cancel plans at the last minute. It’s not because you don’t want to be with them, it’s not personal, and it’s NOT YOUR FAULT. There’s really nothing you can do about the fact that your body is unpredictable at times, and that you have less energy, but your friends and family can make an effort to be understanding when you have to bail.
- Keep a box or basket handy that can serve as a self-care kit. Put comfort items in it, and self-soothing things—coloring books and colored pencils, crossword puzzles to distract you, a few treats you enjoy (chocolates, chips, something you don’t normally have, but really enjoy), a snuggly blanket, your heating pad, anything that brings you comfort. It helps to have a kit that you can reach for when you know you need some extra comfort.
- Get some fresh air if at all possible. Even if it just means setting up a comfy spot in your front porch or on your balcony, just sitting outside and breathing fresh air can make a world of difference to your mood, and is good for your brain.
- Find a balance with your screen time. When you are stuck in bed for a large portion of the day, the internet can be a lifesaving connection to the outside world, so don’t shame yourself for spending more time on there. Research shows that limiting screen time is healthy, and that too much screen time can cause or exacerbate depression. I suggest setting times for yourself to take intentional breaks from the computer and phone screens throughout the day. I think that interacting with friends and support group members online is a really good outlet, so I am not suggesting you abandon social media. Just be mindful of how much time your eyes are glued to a screen, and give yourself breaks from it regularly (I set a timer for myself, so that every hour I get up and walk out on the porch, or go make myself a cup of tea; this has helped me feel more grounded, and my eyes hurt less).
- When you get overwhelmed, remember to breathe and take things one moment at a time. I like to remind myself of what my friend tells herself, “Just do the next right thing,” and “I can only do the best I can with the information I have.” If I’m having a panic attack, I have trained myself to ask myself, “What is the next right thing?” Sometimes it’s really simple: go get a glass of water. Go to the bathroom. Take a shower. Eat something. Sometimes it’s more complicated, so if I start to spin, unsure of what the next right thing is, I try to give myself a reality check. What is the reality of the situation, and is that in alignment with how stressed out I am about it? I review the information I have on the matter, and try to see if there is an action I need to or am avoiding taking, and if not…I go back to my original question: What is the next right thing? It’s probably simpler than I thought. Sometimes the answer is to just sleep on it, sometimes it’s to make that phone call to the gas company, sometimes it’s to make an appointment with my doctor or therapist. Breaking things down into simple steps is helpful when you feel overwhelmed, and doing some cognitive check-ins to see where our emotions are valid, and where perhaps our anxiety is taking over.
- Move! It’s important to move your body from time to time. If you can’t get out of bed, even just sitting up and doing some breathing exercises or meditating, lifting one leg at a time, lying down and sitting up, doing some gentle stretches are good for you. It’s important to keep your circulation going, and get blood flowing more efficiently to areas that need it.
- Wear clothes you like. Even if you’re staying home all day, put on fresh clothes every day, and wear things that make you feel good. Even if it’s just pajamas you really love, don’t sit around in clothes you hate. It can be a great act of self love to put on a comfy outfit that makes you feel good, especially if you are the only person who will see it.
- Journal and write down the feelings you don’t feel like saying out loud to anyone. Writing can be a great way to get the clutter out of your brain, process difficult emotions. Sometimes there are things you can’t say to anyone, but writing it out can feel like unpacking a heavy burden.
- Stay in contact with the important people in your life. It is very easy to fall into an isolation pattern, where we hide from the world and the people we love, and the fortress of protection we build ends up feeling like a prison. Even if it’s just by e-mail, check in with your close friends and family regularly. Force yourself to make a phone call to someone you feel safe talking to. Just hearing another human’s voice can be powerful in keeping you feeling connected to the outside world. Sometimes it feels like the rest of the world is carrying on, moving so fast, our friends are moving on in life, while we are stuck frozen in time in a way—forced to take things slowly and listen to our bodies every day. Keeping in touch with your people keeps you connected to a world that sometimes feels like it’s only for healthy people.
- Cry when you need to. It doesn’t matter what your gender is, humans actually NEED to cry. It’s detoxifying, clears out those tear ducts, and feels good afterwards. Don’t bottle everything up, you don’t always have to put on a brave face. I can’t emphasize this bullet point enough. LET IT OUT. Sob in the shower, blast some of your favorite sad songs, watch a tearjerker movie, whatever it takes to release some of the grief and sadness that comes along with chronic pain and illness.
- Keep a note in your phone of all of the things in your life you are grateful for, a list you can keep updating. Start your morning by reading that list. It’s a small thing that can make a world of difference.
- More Self-Care Tips
Here is a helpful little website that prompts you with self-care questions, should you not feel up to checking/making your own list: Self-care quiz: You Feel Like Shit
Here’s a handy image you can save to look at when you need it:
Grounding exercises can help bring us out of our anxiety and into the present, and can be very useful during emotional distress caused by pain. There are lots of different grounding techniques, so I urge you to look up more, and experiment with ones that work for you. Here is a useful graphic for some quick grounding basics:
I also find guided mindfulness meditations really helpful. This is one of my favorite meditations, which really can help to ground you in your body, and really bring you into the present. I also find it helpful for checking in on my body pain, and really assessing where the pain is present, and how much of it is me bracing for pain. I urge you to try this guided body scan (my therapist directed me to this meditation, and it has really helped me over the years):
Pain Relief from Distraction Exercises (from countingmyspoons.com)
Leah’s note: Some of these might seem silly, or even counterintuitive, but they are each worth a try. If you’re interested in why these techniques work, google “gate control theory of pain”
- Focus on your breath – relax and take a deep breath. Continue to breath in and out slowly. Try to count to at least 10 on each breath in and each breath out. As you really focus on breathing it’s hard to focus on much else, and you will find that the exhales help you relax. Keep this up as long as you can.
- Imagine Pain Relief – Imagine that you just got a shot of some great pain reliever in the area where it hurts, focus on how that would feel, and the sensations that would come with it. How the area of your body would feel as the pain reliever takes hold. This acts almost as a mental placebo.
- Focus on a different time – Think back to a time when you were not in pain, when you were enjoying life in such a way that even if you’d felt a twinge of pain you would not have noticed. Try to feel the feelings you had at that time, and really hold onto them.
- Find Something Funny – Whether it’s a favorite old tv series (I suggest the Golden Girls) or the latest funny movie, find something that you can laugh at. They say that laughter is the best medicine and except for when you laugh so hard it hurts, it’s hard to think about the on-going pains when you are laughing.
- Shock yourself – no I don’t mean electro-shock therapy, I mean find the most shocking thing you can on the internet (or a scary movie) and watch it. Research has shown that looking at something rather bad or shocking can distract you from pain better than looking at more pleasant things. So, pull up a good scary movie, or watch that latest [shocking] video on youtube.
- Listen to Music – When it comes to distracting myself with music, I find it very helpful to focus on building playlists and rating the music. If I’m thinking about what “bin” to fit that song into or whether or not it really deserves to be in my playlists at all, it takes a good amount of thought power, leaving little brain power to focus on the pain
- Play a game – like I mentioned when I’m in a really bad place I like random clicky games, but if my brain is working and I just don’t feel up to really focusing on something that matters, I’ll play some online poker. You might prefer an Xbox game that you can really get into, or some other sort of game to focus on (but seriously, Candy Crush just creates stress and we know what stress does – I swear that game just added to my insomnia
- Spend time with friends – If you enjoy a good phone call then call up a long-distance friend you haven’t seen in a while (or another spoonie) and have a nice long chat. If you aren’t a phone person then make some time to visit with a friend, go to them or invite them to visit you. Spending time with a friend can help distract you in so many ways, just try to avoid getting into pain-focused conversations. Best bet is if you can visit with a friend and find a way to laugh!
- Enjoy nature – Get outside if you can (or near a window if you can’t) and enjoy nature. Watch the birds, the squirrels, or the neighbors. That last one can be a really good distraction (but I won’t get started on that). It might even be worth installing a bird feeder just to bring more beauty to your hard (or patio), giving you something to focus on.
- Make some friends online – Twitter, Facebook, and online forums can be a great distraction, just ask anyone who has ever stepped foot into any of them. You only meant to be there for 5 minutes and then it’s 3 hours later. Better yet (for me, anyway) is Youtube. The reason I rarely go on youtube is because it’s a trap and I can’t get out once I get in.
In summary, when we are living with chronic pain, chronic illness, and depression (sometimes all three at once), it’s important we take these extra steps to take care of ourselves. Sometimes it can feel like we are forever treading water, trying to keep our heads above water, and these techniques and exercises can help be a little lifeboat in these turbulent waters. It can be a difficult road towards accepting the body you are currently living in, and it’s okay to grieve for the healthy body you miss having. The important thing is to reach out for support when you feel you are drowning, and try to practice some of these techniques to pull you out of really bad patches.
In solidarity always,
Leah R. Chatterjee