Why I Stay in Bed Just a Little Longer Each Day

Suzanne DePaolis avatar

by Suzanne DePaolis |

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Kintsugi, diagnosis, prednisone, Rare Disease Day, pharmacists

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.

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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.

Comments

Debbie Pike avatar

Debbie Pike

Wonderful told and expressed...

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Suzanne DePaolis avatar

Suzanne DePaolis

Thank you Debbie.

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Steve Tepper avatar

Steve Tepper

Thank you for describing my daily routine of convincing myself to get out of bed. Though I have MPA with less serious symptoms than you, I still feel much the same. Your take on our illness is spot on. Take care and keep hope alive.
Steve T.

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Suzanne DePaolis avatar

Suzanne DePaolis

It's amazing how that morning routine is repeated in many bedrooms of ANCA vasculitis patients. I appreciate your kind words, and I write from my heart, so I am glad it resonates with you.

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Becky Edgar avatar

Becky Edgar

It’s amazing how you can put into words what we (EGPA) feel.

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Bonnie Schaefer avatar

Bonnie Schaefer

Suzanne,
You perfectly described my morning routine. Since my GPA diagnosis, I’ve spent many mornings dreading the idea of getting out of bed to do anything! Showering and dressing has become a chore for someone who has been an energetic, early riser who looked forward to going to the gym, riding horses and socializing with friends. Chronic pain has become my “new normal” and constant companion. It’s been a long lonely four years. Thank you for your validation. Not many people are aware of how GPA patients feel.

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Suzanne DePaolis avatar

Suzanne DePaolis

Vasculitis can be very isolating, especially this past year. So, many things in my life changed after diagnosis and even now I always say I need two days of rest after every active day. You mentioned you enjoyed riding a horse. I have horses and although I am not up to riding them, I can still groom them and be around them. Hopefully, you can get back to horses someday.

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Dorie Rea avatar

Dorie Rea

I've often wondered if others felt this way too; now I know they do! I'm thankfully in remission for my diagnosis of micro angittis vasculitis which I understand is also a rare autoimmune disease. I push myself to leave the warmth & comfort of my bed in the morning, many times wishing I could just stay there all day. Thank you for helping me to remember that I'm not alone.

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Suzanne DePaolis avatar

Suzanne DePaolis

It's great when we find out we are not the only one that experiences something. I am glad to also find other ANCA vasculitis patients who feel the same way.

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