Autoimmune flare. Probably my least favorite phrase in all of the universe. If you follow my social media, you know that I’ve been dealing with some pretty intense flare ups lately, with the last 2 weeks taking the (gluten-free) cake. One of my major symptoms is debilitating fatigue and brain fog, so much so that in a daze I went to work one day in a camisole, completely forgetting to put a shirt on over it! Luckily I had a cardigan in my office so the crisis was diverted, but it was definitely not one of my finest moments. In the middle of the flare I also received some new diagnoses, EBV and possible severe endometriosis requiring surgery. I think it’s very easy for health focused bloggers to skip sharing the difficult times in fear that others may think that the lifestyle changes they are writing about don’t work. From the start of this blog I wanted to make sure that I was incredibly honest, sharing every part of the experience. So with that, I must say….autoimmune diseases freaking suck. And a flare up, I have all kinds of colorful language for that.
Unfortunately healing is not a linear process and sometimes moving forward requires a few steps backwards. I’ve made a lot of big improvements over the past year, but I’m finding that the better I feel overall, the more difficultly I’m having coping with an auntoimmune flare. Generally I’m a positive minded person so the negative thinking I’m noticing during these flares is definitely out of character for me. When I was feeling ill every day it just became part of my existence so it wasn’t as hard to cope with. Now I feel like I have a life again, so when I flare up and have to slow down I’m finding that I’m getting a little angry. Ok, maybe a lot of angry. It’s definitely a part of healing that I didn’t expect. I know I can’t be alone in this battle, so I thought it would be helpful to share some tips on coping with an autoimmune flare. I know I needed the refresher!
Don’t let a setback or a flare up define your experience.
You are not your disease, you are not your flareup. Since the impact of chronic health issues influences every aspect of life, we often start to tie our identity into our disease and how ‘healthy’ we feel. Healing takes time and when we slide into a flare it’s easy to think we are not making progress. We often question our lifestyle and diet routines and think they are not working. We wonder if the sacrifices we make are worth it. Guess what? They are! Stay focused on your efforts, listen to your body, and do not define yourself by the limitations of your disease. It is something you deal with, it is something you will conquer, it does not have to dictate who you are. Remember, a set back is just a set up for a comeback.
Let out those tears.
Dealing with a chronic health condition can be incredibly frustrating, an emotional rollercoaster of ups, downs, successes, and set backs. We can often become angry at our bodies, feeling betrayed for them not working properly. I think this is especially inherent to autoimmune disease, as we cope with the reality that our body is physically attacking itself. Sadness, anger, denial, it’s all there. We can sit and stew in these feelings, increasing our stress and making symptoms worse, or we can do something with them. I say let them out. Have a cry fest. We all need one every once in a while. Not only is crying a cathartic emotional release, but toxins are released through your tears. If you aren’t the crying type find some type of healthy emotional release. When I was a kid my Mom taught me to beat up my pillow. She’d tell me to picture whatever it was that I was mad at and beat it to a pulp. It totally worked – even that day she was holding the pillow in the air like a punching block and poked her head around it mid punch to say something….I missed the pillow and clocked her right in the nose! She recovered with a bag of peas, I laughed, and hey all that frustration was gone! Mission accomplished.
We all love a good cuddle! Whether it’s your fur baby or significant other, grab that cuddle partner and enjoy every second of it. Cuddling releases oxytocin, the feel good brain chemical that helps us connect to others. It has also been shown to help in regulating hormones that boost the immune system, decrease stress, and relieve pain.
Have you ever been on the verge of disaster pants, but still had an hour drive home? You know the feeling…churning stomach pain, the sweats. All you can think about the entire ride is how badly you need to get home, worried that you won’t make it. If like me you have chronic GI issues, you definitely know the thought cycle this induces. The more you worry about getting to a bathroom, the more sick you feel; the more sick you feel, the more you worry and so on. This process is no different during a flareup. The more you focus & ruminate on your disease, the more aware of your symptoms you become, the more stress you create, and the more you flare up. Distraction is a great self-love tool, pulling our attention away from something that is not working to something soothing or productive. Whether it be immersing yourself in reality TV, a netflix binge, arts & crafts, or going on a long walk, find things that will distract you from thinking about your disease. I personally have to keep myself out of internet support groups during these times or I will research and analyze my symptoms to no end. If I’m finding that I can’t keep myself distracted at home, I will sit in a public place and do something like counting how many people walk by wearing glasses or creating stories about their lives and what they are doing – whatever you can do to give your mind a break and focus on something else.
Eat clean and eat well.
Believe it or not, as food focused as I am this is one of the most difficult parts of a flare up for me. I tend to lose my appetite and my will to cook. When I don’t eat enough I tend to make really poor insulin driven choices. Others become frustrated and binge because they don’t see the point in maintaining their diet if they already feel crappy. Our bodies need the best nutrition possible to heal so it’s incredibly important to focus on quality food intake. Use nutrient dense & healing ingredients while avoiding potential triggers and inflammatory foods. Bone broth and gelatin gummies are great healing foods that are easy to keep on hand. Offal is full of nutrients. You can also plan ahead – make freezer meals that are ready to go in case of flare. This reduces the stress of cooking as you only need to reheat!
Spend time in nature.
Get out in the sun, feel the warmth on your skin, listen to the sound of the wind and birds, and let that Vitamin D work it’s magic. Even if you can only get outside for a few minutes at a time spending time in nature is grounding, refreshing, and healing.
Sleep is vital to healing, recovery, and regeneration. This is not a time to stay up late skimping on those 8 hours to fit in extra work (I would argue that there is no appropriate time to skip sleep, buts that’s a post for another time!). If you need the extra rest take it – take all the naps you need. Sleep is a time for your body to repair itself and heal. As sleep disturbance is an underlying trigger to many autoimmune diseases, proper sleep hygiene is one of the essential pieces to managing an autoimmune condition – even if you aren’t experiencing a flare up. Establishing a regular sleep schedule, avoiding screens at night, blacking out lights, blue light blockers, and sleeping in a cool room are just some basic pieces to developing effective sleep management techniques.
Prioritize Self-Care & Listen To Your Body.
This is a time to focus on yourself and not a time to put your friends and family first. Often this means canceling plans or pulling back on activities. As hard as this is to do, try to think about the big picture and not the immediate moment. The harder you push yourself the longer you will likely be under the weather and not fully able to participate in the things you love. I’m a hockey player. I’m also incredibly competitive, especially with myself. Part of a hockey mentality is skating it off, even playing through injuries. I’ve had to really re-evaluate this thought process in the past year, finally coming to the realization that the less I pay attention to what my body is screaming, the sooner my hockey playing days will come to an end. If you don’t take anything else from this post, listen to your body. If you are in pain, stop. If you are too fatigued, stop and rest. If you want a tomorrow, take care of yourself today.
Meaningful connections with others is a huge component to our overall health and wellbeing. Keeping open and honest communication with our loved ones is essential to effectively dealing with the mental stress of illness. Many of us are fighters, keeping our pain and fatigue to ourselves, not wanting to sound like cry babies or complainers. I can’t even begin to count how many friends (& family) that have disappeared out of my life since I got sick. They likely assumed I was just flaking out or blowing them off. Instead of being completely forthcoming and having that heart to heart conversation, I kept it in not wanting to burden them. And guess what, this doesn’t work. Unfortunately because of the invisible nature and lack of awareness of autoimmune disease, many of our friends and loved ones just don’t get it. And frankly, I don’t expect them to. It took me years to figure out what does and doesn’t work for managing my health so I can’t expect my loved ones to know through telepathy. Keep that communication open. If you need to cancel plans explain why and by all means don’t make up an excuse. Those friends and family that are worth sticking around will, and those that aren’t won’t.f you need your husband or wife to pick up some extra duties around the house for you to heal, ask them. Don’t just expect them to know. Keeping honest communication will help strengthen your relationships, build a support system, and help your loved ones to relate to your needs and experience.
You may have noticed throughout this post that I gave a few tips for things you can prepare in advance like bone broth and freezer meals. I also really stressed the importance of knowing yourself and what works for you. As you progress through your healing journey pay attention to the things that work and develop plans to do more of it. Whether it involves having tangible things available like food, essential oils, and heating pads; or just having a plan of things you can do to distract yourself, preparing in advance reduces stress and makes coping with an autoimmune flare that much easier. Figure out your system and use it.
I was really going to end this post already, but if we are dealing with an autoimmune flare up let’s at least get something fun out of it! My favorite part of an autoimmune flare – it’s a total legitimate excuse to con my husband into giving me a foot massage. I don’t think I need to explain the benefits of that!
I hope you found this post useful. I know at times it feels like an autoimmune flare will never end, but it will. Figure out your process and make it routine. Practice self-care, focus on what works for you, and remember that it will eventually get better.
If you have any tips or ideas on things that help you during a flare up please help others by posting a comment below. I would love to hear more about what you do!