How Does One Follow a Schedule When Chronic Illness Takes Over by Jean Marie Keenan-Johnston

I’ve battled severe fibromyalgia for six years now.  My condition started during my first pregnancy, and I was diagnosed when my oldest was about eight months old.  My daughters are now five and three and a half, and I’m now starting to really see the effects of fibromyalgia on our lives as a family, especially in the ways it’s touched the children.  Even though bedtime isn’t something that’s changed much, my oldest has become a five-year-old insomniac.  And my three-year-old acts like she runs the show around here; she’s become quite the little trouble-maker.  I know the chaos of my life is stressing me out, so it has to reach them in some way.  I’ve really tried to reflect on what problems we’re facing are a result of the health problems my husband and I have, and I’ve been brainstorming how to correct these issues.

When my mom stayed with us in the weeks following my two C-sections, she did everything she could to teach me how to make life as the mother of a newborn baby as easy as possible.  I wasn’t able to breastfeed, so she helped me create a routine every night when I would make the bottles needed for the next day.  Sleep schedules just seemed to fall into place when my babies were able to sleep through the night rather than wake for feedings.  Even when I had two children to care for, I didn’t find it difficult to get them both on the same schedule as all my family and friends suggested.  What wasn’t part of our daily routine was the things that come with children’s growth and maturing interests and activities.  My fibromyalgia kept us home whenever I was flaring and didn’t have help to get us out of the house.  So outside activities were scattered throughout each season.  Our meal schedule fell apart as the children got older and started trying to have a say in when and what they ate.  There were mornings when I wouldn’t be able to move very well until my pain medication took effect, so breakfast was simple and could happen at any time in a two hour time-frame, depending on when the girls got up.  Because housework is something I have problems completing, I tend to move very slowly and take longer with finishing tasks, especially the very physical ones.  I did my best to enforce cleanup times, but we all know young children need much guidance, and often prodding, to get even a small number of toys cleaned up.  But that’s very difficult for a mother who is otherwise occupied with other tasks, and cleanup times aren’t scheduled as many times each day as a parent would have liked if they’re having a very difficult time getting their  own work done. 

Now that my girls are in different preschool stages, I’m doing more and more to combat some of these problems.  Some are easier to deal with than others.  Cleanup time happens more frequently, but it’s still a bit of a failure since bigger children can make bigger messes very quickly.  I’ve tried to put different rules into play to limit some of this spread of chaos…some days they work and others they don’t help at all.  I’ve also started other rules around mealtimes and bedtimes.  Now I’m on to the next step…actually trying to create a daily schedule that we’ll follow for every activity of the day – meals, sleep, cleanup times, structured activities and free play.  My inner teacher is screaming to come out and get involved, so hopefully in the next few weeks, this house will be run more like a classroom than the circus it sometimes feels like. 

Supernanny is my muse in this pursuit.  I’ve watched many episodes during the past few years when I watched her bring in a poster with the daily schedule that the family was now to follow.  I agree it’s a wonderful idea.  Children need structure in their lives for many reasons – the security it offers is not only necessary to their social and emotional development and well-being, but it also seems to me to be a valuable tool for parents and teachers to keep the children motivated and interested in pretty much every aspect of their day.  The impact on discipline is a positive one…at least that’s what I’m counting on as I hope it will help rein in my younger child! 

But as I ponder during my moments alone about how to formulate this…how to make it work under our circumstances with the sometimes severe health obstacles we encounter on a regular basis…I can’t help but worry about how I’m going to pull this off.  My inability to leave the house on my worst days, our need to cancel plans with family and friends on our most painful days, my memory issues that have caused me to accidentally forget appointments…each of these fibro-related issues have stood in the way of many normal household activities, and they’ve interfered often.  It’s these same obstacles that cause me to worry about how to implement this new structured life so that it helps strengthen our family tied rather than making them more unraveled.  I’m not looking to have more of my life fall under the force of fibro.  I’m seeking a stronger hold on my life, a way to regain some of what fibro has taken from me as an individual and a parent.  I am in serious need of less chaos and more strategies that will make my life easier.  Will this be the way?  Will this offer the control I feel I’ve lost at times?  Will it help me find more time for me…TRUE relaxation instead of just recovery time after hours of trying to play housework catch-up until my body can’t work another minute?  Will this help me find more time for ME…for scrap-booking, blogging, any activity that I enjoy, anything that relaxes me? 

HOW DOES ONE FOLLOW A SCHEDULE WHEN CHRONIC ILLNESS TAKES OVER SO MUCH OF ONE’S LIFE???  I’ll be honest and admit that I’m still working things out in my head.  Some days I feel like all I have in the legal pad I envision is the heading and nothing else.  But as I continue to brainstorm and research more ideas…as Supernanny offers more examples to follow…I’ll find the day when I break out that poster board and write up our own Daily Schedule.  I’ll “meet” with my husband and children and explain everything.  I’ll hang it on the refrigerator.  And then I’ll do the only thing I can do…I’ll do my best to follow it. 

It’s going to be tough at times – I’ve learned the hard way that it’s very hard for me to start – and keep- new routines for just myself.  Some were successful while others were doomed from the start.  But I’m going to have to find every trick imaginable to keep me from forgetting this crucial change to our daily lives.  I’ll reach out to others through every avenue where I feel comfortable seeking suggestions and anecdotes from knowledgeable “mommy friends”, and I know I can rely on my mom, siblings and other family members for true heart to heart talks when I need a reminder of what a tough cookie I am and how well I can handle challenges.  Beating Stage 3 breast cancer and parenting with fibromyalgia every day have shown me time and time again how much I can handle, but when the going gets tougher, it helps to be reminded by those who care about my family and me.  As timid and reluctant as I am about kicking this off, years from now I’m going to look back on these years with warm feelings of pride and gratitude.  

  1. 2 Responses to “How Does One Follow a Schedule When Chronic Illness Takes Over by Jean Marie Keenan-Johnston”

  2. Oh Jean…we must both be riding the same train. I just wrote a blog about the exact same issues because my Lyme’s symptoms are getting worse, and my child, at 9, needs to take on more responsibility. As you stated, you can’t be SuperMom when you have chronic illness. My pain is worsening and my physical abilities are becoming more and more limited.
    ALL family members need to be involved in the tasks of the home and at my son’s age, also involved in the care of his Mom. There is going to be a lot of anger from my son, but there is no choice. I’m putting on my “oxygen mask” FIRST!!

    By Cara Meyers on Apr 1, 2013

  3. I apologize for not replying sooner…I was in the process of doing it awhile ago and got interrupted and then couldn’t come back to it. I like how you put it…your “oxygen mask”. I feel your pain, my friend! As my husband’s back issues worsen, the amount of help I receive lessens. And it’s really tough. I’m going to have to ask my five-year-old for more help than my mother ever needed from me during the elementary school years. But my oldest, lucky for me, seems to really enjoy the responsibility. I’m just hoping it stays that way. I push myself hard, so we do have times when we can enjoy each other as mother and daughter, more so than “disabled” and “caregiver”. I always pay for our outings together but I enjoy making those memories no matter how much it hurts me in the end. Good luck with your own journey!

    By jean on Apr 14, 2013