Seven Strategies for Fibromyalgia Wellbeing
by Kayleigh Roberts and Christine Harris
We all respond differently to crises. Our emotions, our responses, and reactions are all subject to change unpredictably, as these situations tend to compound by bringing up past traumas. Most of us are experiencing sudden changes in our feelings on loneliness, security, connection to community, obligations, isolation, and privacy. These uncomfortable feelings are completely normal. Coping with chaotic changes to our daily lives along with the added complexity of living with an autoimmune disorder, presents us with new challenges. Know you’re not alone. We’re all connected and in this together.
1. Understand & Accept Challenging Emotions.
Understand there are countless normal emotional responses to a crisis. Try to be compassionate and accepting of yourself and others.
● Fear: Are my loved ones safe and following CDC & WHO precautions? Will we get through this alright?
● Anger: Why weren’t we prepared? How can that person possibly justify handling this that way? People just don’t understand what people with autoimmune disorders are going through!
● Confusion and Frustration: What am I supposed to do now? Where are we going to live? I have no idea how I’m supposed to take all of this!
● Guilt and Self-Blame: I need to take extra safety precautions, and I feel guilty that this is affecting my responsibilities. I’m not as in control of my emotions and reactions as I’d like to be right now. I should have had a better plan.
● Shame and Humiliation: I compare myself to peers online who are thriving, and I’m embarrassed to admit that I am struggling. I feel humiliated because I’m not sure how I will maintain financially under these circumstances. I’m embarrassed to say that I’m weary of going back to my normal life.
● Sorrow and Grief: I didn’t get to spend time with everyone before the outbreak. I miss my routine, my neighborhood, and my community. It’s not the same here, and I miss my usual comforts and conveniences.
It’s easy to be swept up in worry, panic, negativity, and predict the worst. In reality we have no way of predicting what challenges and opportunities await. It’s essential to focus on how to make the best of the situation and treat ourselves and those around us with love, respect, patience, and understanding.
2. Maintain Boundaries.
It is important for our health to maintain boundaries. People may expect you to be present and quick to jump into action since they themselves are experiencing difficult changes. In order to have the energy to accommodate others, we must first take care of ourselves.
● Be clear and direct. Saying no and letting others know if you are unable to attend or assist shows both self and mutual respect.
● Auto Responses are great because they allow you to conserve your energy and connect others to resources, while setting boundaries. Who doesn’t love passive work? “I am typically available between the hours of X and Y, London time. Please allow at least 48 hours for me to get back to you. For an emergency outside of those hours, please contact CONTACT NAME and INFORMATION. Thank you for your understanding as I find ways to balance my obligations during this unique time.”
● Schedule blocks of time for self-care like going for a stroll, catching up with friends, light exercise, reading a book for pleasure, taking a relaxing bath, or meditation, so you can check in with yourself with no interruption as well as block off time for your other responsibilities.
● Ask for help or work on errands together. Feel free to let those relying on you know ways they can help you help them as well.
3. Establish a Routine.
Routines provide structure and a sense of safety, which is important for our physical, emotional, and mental health. These kinds of crises can make us feel unmotivated or powerless, but a routine helps us keep focused and feel like we are in control. Invite the household to contribute to the creation of a daily schedule with fun time, family time, and self-care!
● Handwashing Mantras like: “I show love and respect to myself and others through small, intentional acts.” “I release and cleanse myself of what I do not need or can not control. I am free from the burden of unnecessary fears and anxieties.” Since we are spending time more frequently washing our hands for at least 20 seconds, we may as well reaffirm a commitment to ourselves, our spirit, and our well-being.
● We can create mindful activities around simple tasks to bring our habits into awareness as we try to avoid touching our faces.
4. Light Exercise.
● Maintaining light exercise is important to keep our body fit and moving; especially when we’re battling Fibromyalgia.
● Youtube is one of many great resources; search “Dance for Fibromyalgia.” It’s easy to find Tai Chi, yoga, stretching, and all types of exercises curated to fit your needs. You can even make a playlist of your favorites to keep track of your progress and connect others with fun dance moves.
● Buddy systems can be particularly motivating whether you have a dance party with your household or exercising together from different locations. Try to keep each other accountable to meeting exercise goals. Seek mutual support to cheer each other onto positive routines.
● Consistency is key, don’t overdo it. This will look different depending on you and your body. It may be 15 minutes twice a day or it may be maintaining your normal walking routine even though you are staying home.
● Reach for resistance in your workout, but stop before you feel new pain.
5. Be Intentional about your News and Social Media Use.
● Set an intention for what you want to accomplish from your experience and how much time you will dedicate. Set a timer and reflect on your intention and experience. I am going to spend 15 minutes on Tumblr looking at adorable animal gifs. My intention is to cheer myself up and unwind.
● Pay attention to your feelings as you scroll through social media, your phone, news, or TV. How are you feeling? If you find yourself regularly getting angry, upset, or losing energy, it’s time to set a time limit or boundary to distance yourself from what is not serving you.
● Avoid comparing yourself to others. We have no way of knowing the full story of what someone else is truly experiencing and the well-manicured lens of social media can lend a distorted view, both positive and negative.
● Taking a few hours offline to unplug for morning routines and night routines can be a helpful way to reduce stress.
● There are apps to keep you on track with managing social media to track or block time for you to stay focused on your goals.
6. Practice Self-Awareness.
● Use Daily Journal Prompts to build your self-awareness like:
o How am I feeling today?
o What do I appreciate/ am I grateful for today?
o What did I learn today that will help me be a better person/friend/colleague/flatmate?
o An emotion I experienced today was..., when ... , and I felt this way because…
o One thing that inspired me today was…
o What didn’t work out the way I wanted/expected? What can I learn from that experience?
o One thing I learned about myself today is…
● Join a Peer Support Community for coping with Fibromyalgia, Covid 19, or other challenges you may be facing.
● Weekly check-in sessions: Identify someone you trust who has a constructive point of view and a healthy emotional intelligence. This may be a friend, family member, therapist, or community leader. Make a plan to meet (virtually) once a week to discuss what this crisis is teaching you about yourself, your dynamics with other people, and your community.
7. Connect.
People around the world are presented with new challenges of loneliness and isolation while social distancing and quarantining. Since our immune systems are more vulnerable, we need to be proactive and take extra precaution to take care by both following health guidelines and staying connected for our emotional well-being.
● Seek online community groups. WeChat, Facebook, Discord, WhatsApp, and other sites have groups specifically for Fibromyalgia and those going through similar experiences.
● Limit time with draining individuals. We have a limited amount of energy and we need to spend it wisely to avoid burnout and Fibro fog. If you regularly find yourself feeling mentally or emotionally exhausted from interacting with someone, it’s time to form healthy boundaries.
● Be mindful of venting. Whether you are on the venting or receiving end, there are healthy ways to express yourself. Keep in mind how you are feeling. We need to distance ourselves from this activity when it is not serving us. Are we venting to bond, decrease in our stress levels, learn/express perspectives, seek solutions, or just to vent? If venting is not helping, use your emotions to take action and instead contact your representatives, seek help, or strategies to better your life. Take 3 deep breaths and ask yourself:
o Do I need to complain right now, or is there a better action or activity for this moment?
o What do I hope to get out of this conversation? Solutions? Understanding? Sympathy? Bonding? (Share your intention with your friend, family, or therapist before you vent).
● Reconnecting with those we care about helps to lift our moods and decrease our stress. Schedule a regular video call with your friends, those in similar situations, or even meet new groups with shared interests. You can play cards, board games, role playing games, and practically any hobby you can imagine online. Dungeons and Dragons is a creative and immersive game that lends itself to all interests from fiction, scifi, fantasy, film, or anything you can imagine. You can join or create a campaign on Roll20 website.
● Create fun rituals together from fun activities or add community to humdrum daily rituals like cooking, eating, exercising, or choring together. Your routines can be with flatmates or friends online or over the phone.