(4 min read)
I hear that word a lot. In podcasts, books on wellness, health culture, motivational speakers, and by some of my friends.
The good news for me, is that I just had 3 entire days in a row where I’d say I was physically doing better than surviving. I’m really celebrating that today.
Let me tell you what it was like to really live: We went out as a family to a nature preserve on Monday (Memorial Day). I felt good (except for my period which had just begun and I was cramping like mad). It was a perfect day. Warm, blue skies, no wind. We walked around, made a fort out of tree branches, swung on porch swings, laughed, and relaxed.
Feeling so great, I wanted to keep living it up. We got some pizzas for the kids, then Justin and I went to a great restaurant in Minneapolis for a date night. I even had a little bit of his cocktail (I haven’t been able to drink alcohol in a long time). I was glorious.
In the next few days, I began to show up as a mom in ways I’d been unable to for almost a year. We set up a new structure for our family. We talked about video games, screen time, and why we will be scaling back. How it shapes your brain and how it can begin to take you out of your actual life when we spend too much time in artificial worlds.
We went for a bike ride to our little gas station to get milkshakes. We went on walks at night before bed time (and our cat Piper even came!). I took my kids to the beach on opening day, and swam with them and did handstands and laughed with them. I cooked good dinners and we ate out on our deck all together. I jumped on the trampoline with my girl, doing flips and tricks and laughing at each other. Me and the kids took turns going down the zipline in our backyard being dare-devils.
I mowed the lawn. I painted our built-in cabinet in our newly remodeled bathroom. We played The Game of Life. We had conversations about balance. We talked about how the mind, emotions and body are all connected and all need to be considered as a piece to overall health. We talked to Howie about what he may want to do for his first job, and when he’s feeling ready for that. We talked about driving.
I felt alive; present; fully me. The best version of me.
We began a chore system. Since my kids are home-schooled for this time, house work is important to give them structure and discipline. Wednesday is floor day (sweep and mop), and Fridays are vacuum days. I’m still thinking about what Monday’s will be…..don’t tell the kids!!
I’m just really feeling like the best mom and partner and woman I’ve ever been. The one thing that being open and finally seeking the help of a health practitioner has given me is that I’m really living honestly. I’m really paying attention. I’ve been having major health challenges for 12 years now. But instead of pretending I’m fine and privately suffering and lying to people about why I disappear, I’m being honest.
And this honesty has given me so much strength to really step fully into my power on my “good” days.
Honesty has forced me to process my experiences. There is no room to ignore things anymore. I have to feel all my feelings, then pick myself back up and show up to my life in whatever way I can that day.
Last night while we were playing The Game of Life, I suddenly became dizzy. I began to lose coordination of my limbs and fingers, and feel very weak. It comes without warning in an instant.
Oddly and infuriatingly, when this particular type of crash or flare occurs, it’s often accompanied by being unable to sleep. I feel weak, cold inside, fatigued to the bone and shaky. AND I CANT FUCKING SLEEP.
And this usually lasts 4-5 nights till it passes.
Today, I can only lay down or sit propped up by pillows. Im dizzy, out of breath, weak and so sad about it. I layed for an hour in bed while the kids were playing together, and cried on and off in between stressing about what in the hell I’m going to do.
Writing is one of the only things I can do in times like this, and even this is difficult, for lack of coordination.
I could’ve just turned on Netflix. But I am sick of this and sick of being a sick girl zoning out to TV.
This is me, showing up today in the midst of a terrible flare up with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome made more complicated by Lyme and Walking Pneumonia.
Do I sound pathetic? Sometimes I’m afraid that I do.
But fuck that, this is my truth. I am a survivor and thriver. I’m trying to live my life each day to the fullest, no matter what I can’t control or plan for.
And I am sure that no matter what your life is made of, you have challenges just like I do. Not one of us is living an easy life. Life is a burrito made up of so fucking hard and so fucking beautiful. I can’t change my circumstances today. I am still here though, asking myself “what good thing can I do with my day today?”
And before I sign off, I want to give a special shout-out to my fellow sufferers of ME/CFS. Most people have not heard of this hidden disease. Most have no idea what we go through. There are people in my online ME/CFS support group who cannot and have not gotten out of bed for years. Who can’t shower for weeks, too weak to do even that. I want you to know that I love you, I see you, I care, I get it. You are stronger than most for what you endure. And a moment doesn’t pass when I’m not thinking of you and hoping for a healing path for this disease.
I love you all.
Love, Heather
