Confessions of a Myositis Mom

If you are a parent with Myositis you might recognize bits of your own story in the following.

I spend at least an hour per day, five days a week at the Ice Rink watching my daughter skate. She and her coach have plans, of which my husband and I are only, tangentially a part (paying skating and coaching fees, driving, and volunteering for the team). I spend my rink time chatting with other parents, resting in the stands, working on my writing, and yes, watching my little ice princess skate. I also spend that time bundling up, covering up, and drinking hot drinks; anything I can think of to stay warm and fight off Raynaud’s Syndrome. The very act of walking into the rink toting all of her gear is enough to wear me out. I can’t tell you how many times I have gone into the bathroom to cry after she took to the ice because I couldn’t tie her skates, couldn’t lift her bag out of the car, or was so incredibly tired and in so much pain that I resented being there.

Skating is not the only part of my parenting-life that is inconvenienced by my disease. My house is a “well-lived-in” mess. I mean, it’s certainly not a toxic waste dump, but we won’t be winning any HGTV contests anytime soon because our clutter has clutter on top of its clutter. And while I love to cook nutritious meals, there are days when I just can’t. My family has learned to pick up my slack and be very understanding when we have to get take-out because I am too tired to cook.

We homeschool for a myriad of reasons; including quality of education, to encourage her creativity, and allowing her to stay a child a little bit longer. But one of our main motivations is to protect me from the rampant school germs because of immune system suppression. As much as I love it, I admit there are days when I just want to sit her in front of the TV with a program (educational or not) and sleep.

Even going to the library with her requires an internal dialogue and checklist. Do I have enough energy to walk down the back stairs out of my house to get to my car, and back up them when we return? Can I carry everything (my purse, our library book-bag, and the twenty items we seem to need with us at all times) from the house to the car, the car to the library, and back? Can I tolerate this fledgling headache under the library’s florescent lights? Is it the season in which they keep the library so warm that I am going to get that about-to-faint-clammy feeling? How many layers of clothing do I need? Can I sit in an uncomfortable wooden chair at a table long enough to make the trip worthwhile? Do I even really want to go? Did I already promise we are going? I forgot.

Let’s not fail to acknowledge the painful feeling of having to sit idly by and watch while your child swims, skates, plays in the snow, kicks the soccer ball, runs on the track, or climbs on the playground. I am so lucky that my husband and nephew are available to enjoy those activities with her, but I will not deny that I get a lump in my throat when I think about how much I am missing. I also get angry sometimes that parents who are able-bodied seem to take for granted all the things they get to do with their child.

We’ve all been there, right? It is terrible to feel as if you have disappointed people you love, failed to follow through on promises, or are just plain missing out on the fun. I dare say it feels even worse when you feel those emotions due to the limitations of your disease and therefore they feel out of your control. I have moments when I feel like a complete disaster as a parent (and sometimes as a human), some in which I think I did okay, and some when I think I “knocked it out of the park!” However, if I were to dwell on my failures as a parent (or as a spouse, for that matter) due to my decreased energy, strength and abilities, I would surely walk around in a constant state of stress, shame, and sadness. My Tuesday Tip for you, my Myositis friends, is to accept yourself for who you really are…where you are, right now.

How can you do this when you feel nothing is working right?

Prioritize – Realize that an immaculate house is not necessary. When you feel guilty about the state of your home spend 15 minutes reading and cuddling with your child (a clean house is no substitute for a good snuggle).

Accentuate the positives – Compile a list of the things you succeeded at this week, day or month. Refer back to the list when you feel down.

Express gratitude – This is not an inconsequential act; expressing gratitude has helped me transcend many moments of frustration, self-hate and disappointment. Thank your child for being a positive light in your life. Tell your body, “Thank you for working as hard as you do.” Tell your spouse, “Thank you for being with me through it all.” Thank your higher power, God, or the Universe for each new day.

Find your center – Deep breathing is very helpful, meditate or pray to bring about a calming feeling of self-love and acceptance.Know your limits and ask for help – one of the hardest for me, I hate to admit defeat. But I have a strong support system around me, waiting for the chance to help; I only need to remember to let them in.

Cut yourself some slack – Realize that none of the things you “fail” at can change who you really are. The person you are inside is what counts and the effort you put into bringing your child a healthy, “normal,” life is what makes you a wonderful parent. If you are doing your personal best and acting in love, there is no failure!

When I decided to approach life with these tips in mind, I found myself smiling through my tears, embracing my family more, and feeling a stronger sense of calm. These adjustments haven’t changed the fact that I have Myositis but they have changed how the disease affects my emotions and outlook on life. Being mindful has made me a more thoughtful and patient parent.

I hope these ideas will help you, too. Sending wishes of peace, love, and acceptance to you and your family. 
– Emily

Originally printed on Myositis Support and Understanding's #TipTuesday Blog here (2014). All Rights Reserved.