Some days, I wake up and never want to leave the comfort of my bed. I don’t want to get up and struggle through the day. I don’t want to remember that I have eosinophilic granulomatosis with polyangiitis (EGPA), and even simple tasks take more energy than I have. I dream about staying under my covers all day long.
Under my covers is warm. I don’t have to move around, so my muscle and joint pain, a common symptom of EGPA, is not an issue. Every morning, I slowly and gently move all my muscles to lessen the morning joint tenderness and muscle pain. If I am under my covers, I can lie still to avoid the pain until I am ready to do my morning stretching routine.
Under my covers is quiet and dark. Morning light and noise can aggravate the migraine headaches I am prone to because of the intravenous immunoglobulin infusion therapy I receive every three weeks because I have hypogammaglobulinemia, a side effect from some of the immune-suppressing medications I take for EGPA. If I can stay in the quiet and darkness, my migraine remains at a lower pain level.
Under my covers, there is no pressure to pretend I am healthy. I don’t have to prove to others that I can cope with everything the day throws at me. I don’t have to be social, which exhausts me, and I don’t have to push myself past my limits to please others. I get the rest that my body screams for every day.
Under my covers, I am successful. In daily life, I often compare myself to others, which can leave me feeling like a failure. I tend to push myself too hard to accomplish as much as possible, on both a professional and a personal level. I never want to disappoint anyone, so I take on more than my exhausted body and mind can handle. I find myself continually trying to catch up or apologize for an unfinished project. The brain fog that comes with my illness is not an issue if I stay under my covers.
While under my covers, I can avoid medical appointments. I don’t have to tell anyone how I feel this week and answer questions about whether I think my disease is becoming more active. I don’t have to go for blood tests to tell if my disease has become more active. I don’t have to change or begin new medications. While under my covers, I can even pretend for a short while that I don’t have EGPA.
Under my covers, I can avoid responsibility. I can hide in my quiet, pain-free darkness and not think about even the basic things I need to accomplish each day. I don’t stress being a wife, mother, or friend as I hide under my covers. I am only responsible for one person: me.
Some days, I’ll stay under my covers for an hour or more. I’ll remain there to be at peace and regain the much-needed energy I need to proceed with my day. Slowly waking up and getting my body moving helps me have a more successful day. As I exit my bed, I’m grateful for the warmth and safety of my covers, and I know they’ll be there to keep me cozy for another morning.
Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.