|Flare Splice, Christy Grace, watercolor, 2017|
As usual, it has been a while since I have written. Not for lack of ideas or inspiration but for the normal wonky balance of family, health, life, and work. I wanted to give a little update, write out some of the thoughts I have been processing, and share some of my self care routine.
Note - this blog is my own experiences and is not a substitute for professional health advice or care. I am a tough lady so this is not meant to garner pity, but to share my life and work through things by writing them out.
In April 2016, I was diagnosed with fibromyalgia after struggling with pain that was more than what I was used to while being a mommy with endometriosis. Trying to be a good mom, wife, friend, artist, and more, all while living with two chronic painful and exhausting diseases was proving to be very difficult so I talked to my husband Mark and we decided together that something needed to change. I had to prioritize family and health first.
So, I stepped back from a lot of work and social events that took me out of the house. I needed to set up life so I could back up from things a little when pain and exhaustion flared and not be a huge imposition to anyone. As instructed by multiple doctors, I had to reduce the stress in my life, allow for rest, and make time for self care.
I still wrestle with the guilt and internal dissonance of not being the person I was or the person I thought I would be at this time in my life. I can not be as social or push myself professionally in the same way I have in the past and it is easy for me to slip into feeling like a failure or feel that I am missing out. To get through this, I have to recreate expectations for myself and reform the vision of who I really am and want to be when everything is stripped down. (More of this in the next blog entry.)
Since being officially diagnosed, it has been a weight off of my mind to know that it is not all in my head. It still proves difficult to explain the illness and to not feel ashamed because it is an invisible illness - I don't look sick. With endometriosis, at least I can display the pictures from the surgeries that show all my reproductive organs plus bowels twisted together with adhesions and cysts. With fibromyalgia, there is no way to show others that almost all stimuli is magnified and that this is painful, exhausting, and overwhelming.
Some friends have wanted to know more and I really, truly appreciate that. They wonder how it feels and it is different for each person but I wanted to put together an attempt to explain what's going on inside - a little look into how fibromyalgia personally affects me daily.
Excerpts From a Fibro Life
Can't fall asleep...can't fall asleep...mind is running laps and my hip aches. I can't touch my knees together because the pressure feels like a bruise. Turn over. Gah, my socks feel too tight. Get these things off me! Ok, a little better. Starting to drift off... "Mama! Mama! Up!" 12:45am. Toddler is up. Let's do this kiddo.
Finally, I get a few solid hours but the morning comes too soon. As found in a sleep study, I have "awake" brain waves during what should be my deep sleep. My body is not healing itself properly at night and even if I do get a solid 8+ (minus a wakeup from the kid) I am not well rested.
In the morning, I put my feet on the floor and it feels like someone had run them over with a truck while I was sleeping. My knees ache and I feel like a rusted tin woman. My body drags as it is full of sand, weighing down every step and making each action more of an effort. But there she is, Eliana with that sweet grinning face and wild, sleep-tousled hair and I smile and pull her little body to my chest for a hug.
Time to get going to music with Eliana! My back aches as I chase her around with her jacket then wrangle her into her car seat. Before we get going, I check the mirror to see if my eyes look as tired as they feel. As I drive, I almost call out in pain when suddenly it feels as though my fingers and palms are being bitten by fire ants. I look at my palms and they are normal. What the...?! I hold the steering wheel a little looser and bite my lip, chewing at the skin. Music is fun as usual though I inwardly sigh in relief when there are more quiet parts of the class when I can rest. I speak with a fellow mom while getting packed to leave and as I talk, I feel the fog roll in. I can't remember a simple word and stumble through the conversation, my eyes tearing up and my cheeks burning with embarrassment. If this was just a one time thing, I would push it off as "mama brain" but it happens all the time and it scares me.
After music, Eliana goes to Grandma's house. We hire her for chunks of time during the week so that I can work from home, get chores and errands done, and get to the gym. I think during this stage of motherhood, most mothers would agree that you wish for a second to get things done without the kid around but the second you are away from them, your heart aches. Anyhow, as I wave goodbye to her from the car as I leave, my stomach starts to twist. This is the IBS (irritable bowel syndrome) fun that visits almost every day, sometimes multiple times in a day. I rush home clenching. It may be because of endometriosis adhesions or scar tissue from adhesion removal but each trip to the bathroom is an event and hurts. Ugh.
After lunch, it is time to work but most of the time my body is telling me to crawl back into bed. Sometimes I do but I tend to be stubborn; "NO NAP!". I sit in my studio at my desk and get to it. I create new art, I edit recent work for apparel sites or prints, I get crafty by making magnets and necklaces out of my art for small shows, and sometimes I do some commissioned art or design work. Creating, drinking tea, and listening to music is one of my "happy places". There are days when creativity flows and I am on top of things and others where I can't keep my thoughts straight, my head and whole body aches, I yawn and stretch and twist trying to relieve that unrelenting pain. On rough days I will sometimes take a bath or nap but choosing to do those things means dealing with the inevitable guilt of not being productive.
By the time it gets to be near time to leave for a weight lifting class at the gym, I am dragging; but I know that though it hurts to work out, it hurts even more if I don't. I do my best to keep up and be strong. I do a few of the exercises with body weight or with lighter weights to minimize pain but otherwise I try to push where it is possible. Sometimes the bar feels like it is ripping the skin off my palms. Sometimes pushing anything above my head sends jolts of pain through my neck and shoulders. Sometimes a squat makes my hips feel like they are splitting apart. Sometimes a lunge triggers shooting pain and strange sensations in the numb part of my right quad. Once the class is finished, though, I feel empowered and successful. The endorphins help, too.
I hop from the gym to pick up my little one. She is glad to see me and tells me by dancing around and singing "happy, happy, happy!". My heart explodes, of course. She follows this by smiling at me and saying "Up!"; I pick her up and hold her close. We push our foreheads together and I tell her "I love you, I've missed you, and I'm so happy to see you". Though my body still aches, moment like this help me reprioritize my thoughts. I want to give her the best of me.
By the time the day is done and the little one is bed, I am so tired but also would just like a second to relax and talk with my husband a bit. I ask for a hug and he holds me tight but it feels like his fingers are bruising my skin so I step back. I feel bad that my body is so sensitive and he feels bad that his touch hurt me. So frustrating.
Most days of the week are similar variations. The weekend hits and I am excited to spend time with my family but also a little nervous because chasing a toddler all day can be just as exhausting as rewarding. Luckily, my husband parents with me and he has a lot more energy. He notices when I am wearing out and takes a turn chasing her around while I have a cup of tea or a bath.
Sundays: we have church and Mark and I are on the worship team. He plays guitar and I play bass and sing. Though I love being a part of the music and I don't want to stop, some of the experience can be personally stressful. Sometimes the bass feels so heavy and the strap digs into my collarbone, which is one of my many tender points. I worry that I will forget the words or where we are in the song when the brain fog rolls in, and it has happened before. I get nervous about singing and when I lead a song it can feel like my throat is caught in a stranglehold and I worry whether any sound will come out. Sometimes I am having a good day and things are not so bad but if I am having a rough day, by the time we are in the car on the way home, I can feel the impending stress triggered headache. I have described this to my friend as a metal plate in the middle of my head pushing forward toward my eyes. There is a lot of pressure and tightness. If the headache is still around by the time I hit the gym in the afternoon, I try to relieve it between muscle groups by pushing my hands against my skull.
So, as you can see, not a charmed life physically but if someone asks my how I am doing, I usually say "Life is wonderful but my body could be better". There are so many lovely parts of my life that I try to celebrate and focus on to be able to live with daily pain and keep my thoughts positive. Constant pain and exhaustion can take you to a dark place very quickly so I work hard to keep my head above water. I have slowly been adding and adapting self care routines to help with this.
Current Self Care Techniques
Moving my body -
I am still doing Body Pump three times a week as long as my stomach issues don't get in the way. I miss the nice weather and walks with Eliana so I had to find a way to replace those steps I was missing with the cold weather. My Fitbit has been helping me keep active. The little 'buzz' on my wrist once an hour reminds me to get up, stretch, and walk around. This is especially helpful when I am working because I get absorbed in a painting and don't move from my chair for four hours (which then makes my joints feel like they have rusted). I am trying to get 10,000 steps a day and will pace around the house after I get the babe down to sleep just to reach that goal or get near it.
Getting a massage from another person has always made me nervous. Though I am sure it would feel great, I can't get past the idea of a stranger's hands on my body and wouldn't be able to relax. So instead I use tools to massage myself. My friend gave me a fascia massager after I mentioned doing research on how fascia could affect pain levels. I use this massager plus an octopus shaped massager (yay!) with avocado oil plus some essential oils. After I dry brush my skin, I warm up by using a space heater to add to the effects of the massage. When I started these massage sessions, it felt like I was punching my tender points and that pain would pulse long after I released the pressure. Though the pain is not gone, the massage has definitely helped reduce sensitivity. I sometimes follow up with an epsom salt bath to help draw out toxins released during the massage and I make sure to keep well hydrated.
I am still nursing Eliana (if possible, nursing until age 2 is recommended now for toddler immune boosting and I was and am planning on letting her choose when she is ready to stop). This means that I can't take any strong medications but I am taking a low dose of an anti-depressant to help with pain and to assist in combatting the expected depression that people with chronic illnesses experience. I am also seeing my friend that is a homeopath. I love the way that she listens and approaches the body and illness holistically.
Soul care and small joys -
I pray, I worship, and I sit still and listen for God. I know meditation would be good for me, too. I have read the book You Are Not Your Pain about mindfulness and would like to start implementing those tools into my routine. Small joys are moments that are full of peace or a bliss that can momentarily distract or eclipse pain. I find these joys in times with my daughter and husband, when I create a new piece of art and it actually looks close to what was in my head, when I sit quietly reading and drinking tea, when I make someone smile or feel appreciated.
Still simplifying life -
Many times simplifying life means saying "no, thank you" or "sorry, I can't". There are so many good people with good ideas but when you are struggling to take care of your own stuff, it is not right to take more on and then drop all the plates that you are trying to spin. One of my little mantras currently is "gently set down that plate". Simple, yes, but a way of saying that it is okay to realize when things are too much and taking care of business well means letting someone else do that job. SO hard for me to do but as I set these plates down, I feel the tension start to release. My introvert self is grateful, too!
Letting it out -
And we've now come full circle. From experience, I have found that it is better to work through these complex and somewhat confusing bits of life. Write it out, paint it out, talk it out. It makes you and your illness feel not so invisible, which is cathartic in and of itself.
Thanks so much for reading!