Fibromyalgia and Social Distancing: Our Family's Struggle

By Brandi Clevinger

Even if I did have more time to prepare for the virus pandemic this spring, I still wouldn’t have been properly prepared for it. It wasn’t so much the isolation of it; I’m pretty good about staying home and away from others. Most of the time I’m an introvert, so staying home is much more appealing to me than going out. However, being stripped of normalcy and thrown into the uncertainty of it all resulted in elevated levels of mental distress and physical pain - for the entire family.

Just as my kids and I were becoming adequately adjusted to our new way of living (I went through a divorce last summer which can be read in October and November 2019 past issues), we were hurled into yet another way of living: social distancing. Despite it being a temporary way of life, we weren’t certain just how long that would be. Even as I write this article in May, I’m hoping we resume normal living by the time this issue hits the stands in July.

On the surface, this new way of living meant no school (hello homeschooling), no visiting friends or loved ones, and restricted trips to the store for food and goods. But these general rules carry a heavier weight for each of us: mental anguish.

Some of the weight of that anguish included: being isolated from social interaction, the anxiety of not knowing how long it would last, and the worry of succumbing to the virus or having a loved one fall ill with it. This weight, over time, became smothering as we huddled together in our home waiting for the all-clear to resume normal living.

Part of the mental distress for my kids and me was the absence of routine and structure. As I stated earlier, we had just found our footing as a family with a new familial structure and routine that was sufficient for each of us. We were content with this new dynamic and we felt our needs were being met both individually and as a family unit. It provided security we could rely on and comfort from the certainty of it.

When I returned from the Fibromyalgia Advocacy trip to Washington, DC on March 14th, the systematic flow of functioning we built over the last eight months slowly crumbled from under us. Out the window went routines and organization. In its place was mayhem.

In the first week or two of the pandemic, we self-quarantined (after we got the correct supplies to do so). During that time we worked on house projects and school was on the back burner. We took the unplanned break as a time to rest from the last few months of working long hours and busy schedules. The next few weeks were a different story.

Once the initial dust ‘settled’ of everyone being home, I wasn’t able to cope so well. I thrive on routine and the reliability of what’s to come next is essential to me. It helps me to stay focused on what needs to get done and to get it done. The dependability of a routine keeps the house running (even if chaotic) and running like a well-oiled machine. Since that reliability was ripped from under me, I floundered and true chaos set in.

The lack of consistency and this new way of living left me feeling confused. It started with the inability to focus on a single thought and thoughts were constantly filling my head. There were thoughts of worry from the pandemic, the kids’ school work, being laid off from work, how long the pandemic would last, etc. All of these thoughts would swarm my head as I tried to get through each day.

My mind was clouded with these incoherent thoughts which would send me blundering about the house not quite knowing what to do. I would start one task, abruptly stop due to the inability to garner enough focus to complete it, and then move on to the next task. This process of starting and stopping would continue until I eventually ended up with multiple tasks in mid-completion. The house was a mess and was a physical manifestation of the confusion in my mind.

And because of this lack of focus, I easily became overwhelmed with everything. Each and every task no matter how mundane, simple, or complex was a burden to me. I cried over the smallest issues but tried to bury my emotions of the bigger issues. I felt like a walking ticking time bomb of emotions. I wanted to claw my way out of my head, jump out of my skin, and flee the all-consuming hell establishing within me.

This feeling of being overwhelmed extended to all parts of my life and negatively affected all of it. Conversations with my kids were difficult and we were frustrated by my lack of proper communication. Settling arguments between the kids was just about impossible, too, and usually ended with me yelling at them and, in turn, them yelling at one another. Each of us was irritated, anxious, and discouraged by this new dilemma we found ourselves. 

On top of all of this, doing house chores, cooking dinner, and completing schoolwork was an utter pain. All it did was compound the stress and anguish already suffocating us. My oldest daughter and I both have mental health struggles, so this state of mind slowly sent each of us into a state of depression. We were constantly tired and swung between gorging on sweets or not eating at all. It wasn’t healthy.

Our family lived this way for several weeks. It was hell. Finally, I voiced my struggles with a friend, reluctantly confessing how overwhelmed I was feeling. He listened intently without judgment and with wholehearted compassion. When I felt as though my heart could pour out no more, I was overcome with pure exhaustion. Emotions can use up a lot of energy, and I began with so little as it was.

We sat in silence for a moment, and then he gently suggested the lack of routine was the source of the spiraling state I found myself. He was right. I needed the comfort and security of routine, so together we drafted a tentative schedule for our home. Nothing concrete. A starting point to regain our footing in an attempt to obtain a bit of normalcy. 

We posted this proposed schedule on the fridge in the kitchen as a constant reminder of stability. It included time for blogging (if/when I was ready to write again), school work, house projects (as desired), preparing dinner, and downtime to do whatever we wished to be in the form of self-care (we wrote this as ‘leave me alone’ time and it applied to everyone in the house). 

The self-care part was essential in order to release stress, reduce anxiety, and feel less overwhelmed. For me, reducing stress would also reduce the levels of physical pain I was experiencing. I was in a tumbling cycle of mental anguish and physical pain resulting in a myriad of flares.

It took time to adjust to the schedule despite my need for it. I had been floundering for weeks, so this single line of stability cast out to me took a moment to take hold of. Once I got a firm grasp on it, however, I was able to slowly pull myself to the firm footing I needed. After gaining this footing, I was able to help my kids with their struggles.

Slowly, bit by bit, we moved into a routine of school work, chores, house projects, and self-care. The frustration abated and the anxiety lessened in intensity. I no longer felt overwhelmed and was able to start focusing for longer periods of time. My daughter and my states of depression lessened and lines of communication started smoothing out. The kids were constantly bickering, but really - when do kids not argue with siblings?

Now that we were turning our struggles around, we started focusing on ways to cope in various ways as a family. We divided the chores which meant less physical strain on me and more evenly distributed responsibilities. This was a relief since the chores seemed to have doubled due to us constantly being at home. It also helped with the kids having structure and routine - something that needed for security, too.

We also started gardening with the help of my dear friend, Jamie. She owns a farm where she has bees, chickens, and an extensive garden with a variety of produce. Together we built two garden boxes complete with plants and irrigation systems. Each morning and evening we visit the garden tending to the growing strawberry patch, pruning the pepper plants, and nurturing the seedlings. It’s therapeutic for us as a family and individually. 

As of the writing of this article, I started focusing on my blog again and getting back into the groove of my true passion - advocacy and awareness within the fibromyalgia community. It feels good to be stable again and to have a focus on where I see myself in the next month and year in terms of my blog and business.

As for my family, we have been fighting less and loving more. We spend time together watching movies several times a week, go to a park or pond at least once a week, and make time for self-care each day. Our attempt to secure structure and normalcy is successful with a sprinkle of failure to balance it.

Overall, we have recovered quite well from the virus pandemic. The end of the quarantine is in sight and I’m grateful for it. This time has not been in vain, however. Our family has learned much from this experience and have grown from it. While I do not want such an experience again, I know we will be more prepared for it should it happen.

I’m Brandi, the writer of Being Fibro Mom (www.BeingFibroMom.com). I am also the Family & Fibromyalgia program director for the non-profit organization, International Support Fibromyalgia Network. Being Fibro Mom was created in 2013 with the hope of helping fibromyalgia sufferers become fibromyalgia thrivers and advocating for parents enduring the hardships of fibromyalgia. Be sure to join my closed Facebook parenting group, Fibro Parenting, for the support you need as a parent living with fibromyalgia.