Navigating the world when you’re chronically ill is an incomprehensible challenge until you’re met with it personally. I’ve been sick for four and a half years and still struggle with aspects of my illnesses. For some background, I am diagnosed with POTS (postural orthostatic tachycardia syndrome,) fibromyalgia, chronic migraine, reflux disease with barretts esophagus, hypersomnia, and an unspecified autoimmune disease thought to be lupus. Here are some things I struggle with.
1. How do I know when to rest or push through it? Chronic fatigue and pain are my most debilitating symptoms. It’s difficult to know when to let my body rest or decide to power through. Overexertion can lead to exacerbated and prolonged flares. Should I complete my chores then rest? Will the chores be too much and leave me feeling awful later? It is complicated to balance rest and staying active. I aim to really listen to my body and take a lot of breaks between tasks.
2. Should I commit to these plans? If plans are days out, I have absolutely no idea how I’ll be feeling that day. Feeling like a flaky friend is the worst. I struggle with committing to plans for fear of having to cancel for my health. Luckily, I have an extremely supportive and understanding support system. However, I still am met with guilt and even grief when I have to say “no,” to something I’d enjoy. I try not to make plans more than a day out, where possible. For important dates such as a birthday party or concert, I rest for the previous few days in hopes of feeling well enough to attend. This is a time where I will push through symptoms if I have to as well. Listen to your body.
3. How long is it acceptable to grieve? I find myself regularly cycling through the stages of grief. I grieve the loss of my health because I can no longer do what I used to do. Additionally, being in constant pain is outright heartbreaking at times. It is most definitely okay to grieve and experience hard feelings. What helps me is allotting a small time frame, say a half hour, to let it all out. I can feel as crummy as I want for that thirty minutes but after that, it’s time to move forward.
4. How do I accept my diagnoses? Coming to terms with the fact that I’ll be sick forever, unless some miraculous cure is found, is a challenge. Especially with toxic positivity surrounding so much of our culture. I’m exhausted of hearing “don’t worry, it will pass!” Yes, this particular flare will pass, but I also spend my life monitoring symptoms, attenting doctors appointments, ensuring I take my medications, and still face the risk of more flare ups. Journaling about my experiences helps me cope. Paper can’t judge you, so it’s a perfect outlet. If I want a distraction, I love journals with prompts to get me out of my head.
5. How can I still feel productive despite my inability to work a normal job? This tops the list as my biggest challenge. Prior to being sick, I worked a lot. I regularly picked up hours and I adored earning my income. Even now, I’m embarrassed to admit I currently rely on assistance financially to get by. While I’d never judge anyone else for this, I judge me (which is absurd, of course.) Everyone needs help with something, I just need help in a different way. What has helped me feel productive is utilizing social media to show others they are not alone. Also, if you’ve read my other blog posts, you may have seen I’ve begun doing my part to save the planet. Helping others and “going green,” really makes me feel part of something bigger and reinstills my sense of purpose. Hobbies help as well! Find what’s right for you.
Thanks for reading as always.