If you could be any animal, what would you choose? Five years ago, I’d answer a house cat. Embodying a cat would melt my stress away, allowing for lazy days basking in the sun beaming through my owner’s windows.
Now, I want to be a flatworm. (Yes, insects are animals).
My day-to-day would be weird, sure. But flatworms have pluripotent stem cells. These particular stem cells give flatworms regenerative abilities, allowing them to regrow any part of their body, even their heads. This power would change my life.
Instead of the scarred neurons littered throughout my brain and spinal cord, I would have a fully functional central nervous system. Nerves that send and receive appropriate messages, ones that feel normal sensations and remind me that sugar, not sriracha, goes into my Irish breakfast tea.
But I’m not a flatworm. I’m a human living with multiple sclerosis (MS).
Like many people living with a chronic illness or disease, not all of my symptoms are treatable. Most days, my symptoms are manageable with medication and wellness practices, like stress management, yoga, and staying cool. But some days, nothing relieves my pain and discomfort in the slightest. I’m forced to suffer through the day and hope the next is better.
If you’re like me and searching for ways to cope, accept the days you cannot physically control or manage, I offer you three coping strategies that work well for me.
Three Practices to Help Improve Your Hardest Days
Your symptoms and what you experience and manage every day is unique to you. You should first-most speak with your health professional about each symptom and adhere to your treatment plan. But I know far too well that sometimes the best treatment plan fails, or life gets in the way of following it to the tee.
Some days, nothing relieves my pain and discomfort. A cold shower doesn’t extinguish my smoldering skin. Unclasping my bra doesn’t release the constriction around my ribs. My bamboo sheets’ smooth texture and plush memory foam mattress don’t calm my restless aching legs.
On those days, I don’t want to be in my own body. I yearn for the ability to transfer my consciousness into another body, like a science fiction character traversing the universe without rules. But this isn’t a movie or your favorite fictional book. It’s real life, so we need tools in our toolkit for these days. I have three practices I use that may also help you.
Reframe Your Reasons for Saying No to Activities
You’ll have plenty of instances where you have or want to partake in activities regardless of how you feel. But treating every task or event as essential on your most challenging days will negatively impact your well-being.
Unfortunately, the sacrifices we make to take care of our physical and emotional needs can bring negative emotions like guilt, stress, anxiety, and sadness. You have to find ways to cope with or prevent these emotions.
Reframing my reason for saying no to an activity is one way I cope.
I feel more upset when I frame my decisions as I can’t do something because I’m ill. I can’t go out for drinks tonight because I’m in too much pain. I can’t go on a hike at noon because the heat will exhaust me. I can’t do anything with people during this pandemic because I’m in the vulnerable population. These phrases focus on what my disease steals from me, and well, I hate thinking about my loss.
Instead of framing your decisions as you can’t do something because you’re ill, try using statements that remind yourself that you decide to take care of yourself.
You’re staying in tonight to decrease your pain level. You’re rescheduling the hike for weather that will ensure you have enough energy to finish it. You’re staying home during the pandemic to live a long, healthier future.
The symptom that’s preventing you from engaging in a task doesn’t matter. What matters is that you determined the activity’s reward isn’t worth the impact on your physical or mental well-being, and, as a result, you’re taking care of your needs. No one living with a health condition should feel guilt, stress, anxiety, or sadness for deciding to take care of themselves. We have enough to manage.
The inability to escape my discomfort sometimes brings frustration and hopelessness, especially when it’s days on end with no relief. Over time, I recognized that the intensity of my discomfort and my negative emotions are directly related to how much I fixate on how I feel physically.
Instead of focusing on your discomfort, try doing different things until you discover the best distractions that help you (at least partially) forget it.
Distractions are my favorite medicine for my untreatable symptoms. Shifting your brain’s attention away from the symptom can help decrease its impact on your well-being. The key is finding the right distraction beneficial to your overall well-being and taking your mind off the symptom.
On cold days, I often get spacitiy (painful tightness) in my legs. When mixed with the never-ending tingling I have from nerve damage, it feels like ants are crawling all over my achy legs. Watching a funny movie or chatting with my husband is the best treatment for these days because I ignore the pain and discomfort for a while.
Think about activities where you forget the world around you, activities that capture your attention. Maybe you love to play video games, watch endless videos of cats on YouTube, or take long naps. Whatever your fancy, try engaging in these activities when you aren’t feeling well and see if it takes your mind off your pain, even partially. If so, I encourage you to add these activities to your took kit because even an hour with less pain, or the emotions associated with pain, is a better day.
Ask For Help
My diagnosis brought me a lot of shame for the first year, which I later learned, the diagnosis of a chronic illness brings shame to many of us. I endured unnecessary discomfort, fatigue, and stress because I was unwilling to ask for help when I was struggling.
Everyone living with a chronic condition needs a support system. But the key to building an effective support system is that you must learn to be vulnerable, explain what you’re experiencing, and ask for help.
Instead of carrying your burden alone, try being vulnerable, and asking for help from your support system.
Even the simplest tasks can feel like climbing Mount Everest when you don’t feel well. Ask for an extension at work or if your colleague has time to assist you. Ask someone to watch your kids for an hour or two so you can nap. Ask your partner to swap a household chore.
Your support system wants to help you. They want you to increase your quality of life so they can share more memories with you. Ask for their help, remember to express your gratitude, and find ways to help them when they need it as well.
I also encourage you to consider hiring gig economy workers as part of your support system when your budget allows. Hire a dog walker via Rover for when you hurt too much to take Fido on a walk. Have your groceries delivered via Instacart so you can relax. Find helpers on TaskRabbit to run your errands, vacuum your house, or just about anything you need. If you don’t live in a city that offers these services, ask your network if they know anyone looking for some extra cash that will help you.
We will have many hard days that test our patience and steal our joy — they don’t label our illness as chronic for funsies. I’m hopeful that scientists and researchers will discover treatments to cure my MS, to cure all of us one day. But that day isn’t today.
We all need help now. We need ways to improve our quality of life and find moments of joy, even in the most challenging days.
For me, that involves reminding myself that I’m opting out of activities so I can take care of my needs. I’m distracting myself with funny movies and engaging conversations with my husband. And I’m not living in shame; instead, I’m being vulnerable and asking my support system for help.
The tips shared in this article are based on personal experience. I am not a medical professional. If you are struggling with anxiety, depression, or coping with something in your life, I highly encourage you to seek professional help. The Anxiety and Depression Association of America has resources to has resources to find help and so will your health care team.
© 2020-2021 Alexys Carlton. All Rights Reserved.