What Happens When the Carer Needs Care?

Alliah Czarielle avatar

by Alliah Czarielle |

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I’ve been sick for most of this week with digestive issues. This is a chronic condition for me, but it always bothers me when it happens. I’m weak and unable to do much. I must gauge my energy levels and try to squeeze important tasks into the moments I feel relatively fine.

The electrolyte loss makes my thinking woozy and my body weak. Being in constant pain also significantly lowers my energy budget. Normally, I’m able to perform several work tasks in a day. Now that I’m sick, I can only tick one or two I have to be wise about how I schedule my day, because if I schedule a high-energy task too early, I’ll feel too tired to do anything else. I’ve been relying on my husband, Jared, to accompany me in case of an accident or if I need assistance or moral support to finish my tasks.

The last time I had a severe flare-up was about six years ago. At the time, I was just a stressed-out college senior who simply wanted to have a few drinks to chill out in the afternoon. I forgot that I had eaten breakfast many hours ago, therefore my stomach was already empty. It didn’t take long for the gastric symptoms to appear and almost instantly worsen from uncomfortable to unbearable.

I remember being confined to my bed at the time, clutching my feet to my chest and sobbing. I had a thesis to finish and several homework assignments to complete, but my stomach illness kept me from doing anything. For days, I was incapacitated, with zero ability to cross anything off my to-do list.

It’s almost the same now, except I now have far more responsibilities that are impossible to drop. I can’t put motherhood on hold, even if I can delegate certain tasks. I also have business duties that persist 24/7. Thankfully, Jared has just recovered from a recent ankle bleed and bruising after a random seizure caused him to fall down a flight of stairs. I can set aside caregiving duties for a while and focus on my own recovery instead.

It is now Jared’s turn to care for me. He prepares our food while I rest in bed or sit beside him at the kitchen table if I’m feeling a little better. He brings me hot compresses to place on my tummy, and gives me back and foot massages that help reduce the stomach pain. He even takes care of our baby girl, Cittie, while I lie down on my stomach for some relief.

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I am content with this arrangement, because it’s nice to be the one who is cared for, rather than the carer, for a change. I’m a strong advocate of caring for the carer, because carers are also human. We have needs, and there is a limit to what we can do. This time, my needs are far more pronounced, because the current state of my health prevents me from doing the things I normally do.

I also can’t help but feel anxious about my health, which doesn’t exactly help my current condition. I don’t want this to become any worse, because I want to be around for the people I love. I know I might not always be the most efficient or proactive carer, but I still want to be physically and emotionally present, doing whatever I can.

I’m trying to stay positive that things will turn out for the best. I hope that within a week I will recover, as I did from my previous attacks. Meanwhile, I take this bout of illness as a reminder that I am not invincible — I also need to rest now and then. Perhaps this is my much-needed downtime after months of nonstop working and stressing out.

I recently told Jared that I need to rest a lot more, as I’m still sneaking in work (and stressful client interactions) more often than I should. He agrees.

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Note: Hemophilia News Today 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 another 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 Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.

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