Being a parent is hard enough and parenting with a chronic illness is even more difficult. The days are unpredictable, achy, and tiring and that’s just for living with fibromyalgia. Parenting is the same, and the two together – fibro parenting – can be physically and mentally draining. There are ways to cope and how to be a rockstar fibro parent, so here’s a little story about being late to my kiddo’s school event and a few tips I learned from it. Oh, and hey – don’t be hard on yourself. You are doing a GREAT job.
This article first appeared in The Fibromyalgia Magazine, April 2019. Get the digital copy of the magazine from Pocketmags.
Disclosure: I get commissions for purchases made through links in this post, but these are products I recommend and have verified and/or used.
It’s WHAT day?!
As I walked in the front door of our home after dropping off my older kids at school and hung my keys on the hook, I noticed a subtle shift in the way our kids’ school lanyards were hanging. One hook had a lanyard where there should be none. The only reason for that would be if the kids were having an AWARDS DAY!!
In a flash, I remembered my youngest daughter coming home from school two days earlier filled with excitement as she told me about receiving the Terrific Kid award for her class. All awards are a big deal for kids, but this one is a BIG deal.
She asked if I would be there, and I confidently told her I would make it. I forgot to add it to my calendar, and in that instant, I remembered it started at 8 am. It was now 8:15. Crap!!
Looking down at my clothes, I realized pajamas would not be appropriate. While frantically running upstairs and undressing, I was on the verge of tears. Abby would understand if I was unable to make it due to a flare in symptoms even if she would be disappointed. However, I had merely forgotten; another unfortunate side effect to living with fibromyalgia.
Gripping the steering wheel, it took all my concentration to not speed as I raced against the clock to get to my kids’ elementary school. I was saying over and over, “Please don’t let me be late. Please don’t let me be late.”
My brow was sweating despite the cold, and I had to crack the window to calm my nerves. It would be a blessing if I arrived at school on time and not have to see the disappointment on her face. With so many struggles at the time, this would be my parenting fail that would be the proverbial straw that broke the camel’s back. I needed to be there for my daughter. I needed to be there for myself as reassurance I’m not completely failing.
Fibro Parenting can be a struggle – and it’s okay.
Living with fibromyalgia is difficult. Being a parent is hard, too. Being a fibro parent combines the two creating an entirely new challenge. It leaves us second guessing ourselves and feeling knocked down repeatedly not knowing if we’ll ever be able to stand up again. We’ve all been there, right? Right. So get up. Again. And listen to this truth –
On the day I wrote this article, a friend posted an image online that said, “Just because you are struggling doesn’t mean you’re failing.” It’s true. Every fibro parent is struggling in some way. We are all learning how to juggle both parenting and fibromyalgia without losing our sanity and not feeling like a complete failure at the end of each day.
We go through seasons of life where some days are harder than others, but it’s just that – a season. It will change. We are learning ways to better manage our symptoms, take care of our kiddos, and not feel the weight of both pressing down upon us. It can be overwhelming.
And while we go through our seasons of life, our kids go through it, too. They are learning about themselves, about others, and about the world outside their home. It’s overwhelming for them, too. Sometimes you are in sync with one another, but sometimes you’re not. This has no bearing of success or failure on you as the parent or them as the child.
This is why you get up again and again. Because each time you’re knocked down, you’re learning something about yourself, your child, or your illness. You learn how to do it different or what not to do next time. So really, struggling is growing.
Tips to Being a Rockstar Fibro Parent
Okay, so maybe you won’t be a rockstar, but there are a few things I’ve learned over the years about being a fibro parent. There are too many to list here, but here are some essential ones you should keep in mind.
Plan for the bad days
A bad day could strike at any time, and it’s best to plan for these days while you’re feeling well. There are various ways to prepare for this.
- Assemble freezer meals with batch cooking or using leftovers. Be sure freezer meals have instructions for heating written on the container/freezer bag.
- Talk to loved ones about how to support you on the rough days.
- Keep a list of encouraging quotes, thoughts, or phrases to read.
- Ensure your flare day items are stocked so you have what you need when those flares strike. This can include essential oils, Epsom salts, medications, etc.
- Post a list in a common area of your home that includes ways your family can help on the flare days. For example, options for dinner, keeping volume levels low, making tea, etc.
Keep a box of flare day items
Reserve a set of activities, movies with special snacks, and other little toys or games for your flare days. Keep it simple and only bring out these items on your flare days so the kids don’t lose interest in them too quickly. Some examples of activities or games include:
- Cards/travel games: These are great because they are portable and easy to play while in bed or lying on the couch.
- Coloring books and crayons: Coloring is therapeutic, so this will be good as self-care as well as entertaining your kids.
- Movies with special snacks: There are certain snacks my kids are not allowed to have regularly, so I save these snacks for movies on my flare days.
- Box of toys: Keeping a small box of various toys from the dollar store is a great way to entertain your kiddos while resting.
Have your kids help
Kids love to help in any way they can. When a child is helping – even with chores – they feel included and valued, and it boosts their self-esteem and self-confidence. Small, simple tasks can make add up to a big difference. Keep these tasks age appropriate. Some ways they can help include:
- Picking up their toys or dirty clothes
- Taking out the trash
Keep it simple
When you complicate things, you become overwhelmed which can lead to self-doubt and has the potential to spiral into a negative way of thinking. Do what you can with what you have at that moment.
Drop the guilt
Easier said than done. I get it. However, it does you no good and only adds hardship to your situation. When you start to feel guilty, figure out the why of it. Getting down to the root cause and working through those feelings can help resolve guilty feelings.
If possible, work through these feelings with your partner, a loved one, or friend. Getting a fresh perspective from an outsider view may be what you need. We are hard on ourselves as fibro parents, but most of the time it’s just that – us being hard on ourselves.
Take care of you
Always remember to take care of YOU. There’s a tendency as a fibro parent to take care of our families before we take care of ourselves. Once we are done taking care of them, we have little energy or want to do for ourselves. This way of thinking needs to change.
When I don’t take care of myself, then I will more likely have a flare because I’m neglecting what my body needs. When I’m having a flare, I’m unable to take care of my family the way I want. However, if I do my best to take care of myself, then the likelihood of a flare goes down. This isn’t to say we can altogether avoid a flare, but the chances of it decrease, and we can better manage our symptoms.
Self-care can be whatever you choose to do for you. Some ways I practice self-care:
- Thirty minutes prior to the kids coming home, I enjoy a cup of tea and read. In fact, I have a daily alarm set for this time.
- Periodically, I have lunch outside of my home. This is usually alone, but occasionally I do invite a friend.
- Sundays are rest days. Rarely do we make plans for this day of the week.
- I self-indulge from time to time. It could be buying a magazine, inspirational decor, or a special treat to eat.
- Keeping a journal for positive thoughts and processing negative ones.
To finish the opening story: Did I make it to my daughter’s award ceremony on time? Yes! I was sliding into my seat just as the Kindergarten classes were finishing and her grade was about to begin. At one point she turned, searching the audience for me. When she locked eyes with me, she lit up and smiled the biggest smile. It melted my heart and brought tears to my eyes. I thought, “Yes, sweet girl. Mommy made it – for both of us.”