3 Most Valuable Lessons My Children and I Have Learned from My Chronic Illness

It is a Saturday morning and my girls are still with their dad. My back hurts, my neck hurts, pretty much every inch of my body hurts. There are groceries from last night still sitting on my kitchen floor. Thankfully I had the strength to put away the perishables while everything else stayed in the bags. All I was able to do, was eat a bowl of cereal, brush my teeth and crawl into bed.

I overdid it the day before. I went shopping for groceries and I had to run a few errands. The constant lifting of bags did a number. I knew I shouldn’t have been doing this but these were errands that needed to be done.

I was also due to work that morning from home before the girls got home, but since I couldn’t shift my neck I laid in my bed trying to mentally prepare myself to take a bath before the girls get home at midday. I wanted to cry.

It’s moments like this that remind me of how terrible it is having a chronic illness. It is the pain, the unpredictability of that pain, and the fatigue. Even with that said, having a chronic illness has taught my children and I so much. 

Here are the three most valuable lessons my children and I are learning from my chronic illness. 

1. The value and importance of self-care

I am honestly not the best person when it comes to self-care, but recently I have begun doing a better job. I am learning more and more to make myself a priority and as I am doing that, I am getting the girls involved in the process. 

Daily breathing exercises have long been a part of our lives. I do it daily to center myself and to calm my frustrations and anxiety, since that is very important to maintaining a low stress lifestyle. I started doing it with the girls as a way to teach them to manage their emotions and to mitigate their own frustrations. Childhood is hard. 

We have also been doing stretching exercises at least twice a week and we dance every night after dinner. The girls love it. On Sundays we also try to do some physical self-care. By doing these things, I am motivated to maintain my self-care routine, and I am teaching my girls about making themselves a priority.

2. Respecting boundaries

When I am experiencing a flare and I am in extreme pain, it is hard to be the best mom. It is hard to explain to my children that I can’t pick you up or let you hang on me in a way that is painful for me, but I have to set physical boundaries.

I am riddled with guilt at times, because all they see is that mommy can’t play with us.I do the best I can to explain what is happening to me in that moment in language they understand, even though it does not minimize how they feel.

Over the years, I have gotten better with talking to them and requesting that they be gentle with mommy’s body. I teach them how to hug me. My older daughter has even begun offering to give me massages. She even tells her little sister to be gentle with mom. 

Every flare does not always garner that response. Some days they get very upset, but I just keep reminding them that I need a little time to feel better. I have even found that just letting them lay in bed with me makes a world of a difference.

I am learning it is okay for me to ask my children for space in order to feel better. I don’t have to always be involved in all their activities. That also helps them develop some independence, which is an excellent thing.

3. Compassion for self and others

This is a word I have been hearing a lot of in therapy and it is directed to myself. I realized that I am not necessarily the most compassionate to myself. It is amazing how as humans we can show compassion to others, but don’t always show it to ourselves.

As a parent, I am an overachiever. I want my children to be outdoors daily, exposed to arts and culture, participate in extracurricular activities, help them academically and be a nurturing mother who never raises her voice. This is barely possible for a mother who doesn’t have a chronic illness, yet here I am trying to accomplish all these things when my brain is screaming pain and fatigue.

I have been learning to not put so much pressure on myself to fit this ideal. Some days I will not meet the mark and that is okay. I have overcompensated when I am well for when I may not be well. What I need to strive for is balance.

All of this is also teaching my children to care for others. My five year old, who is a naturally empathetic child is becoming cognizant of what I go through, and displays a lot of compassion toward me during these times. My younger daughter is slowly learning and I know she is getting there. We are truly a work in progress.

As much as I do not enjoy one ounce of living with fibromyalgia pain, I am grateful for what my kids and I are learning from it. I believe that I am giving them the tools to be great human beings who put themselves first and extend kindness and compassion to others.

(Photo of my art)

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