I wanted to share this for a couple of reasons, but probably not why you’d think. I think it’s helpful to make people aware of how you can support someone with an invisible disease because it’s just not something we want to advertise all the time. We have the tendency to look fine on the outside, so others just assume we are ok. Even my therapist says I can kept her fooled until I finally chose to take off my happy mask and talk about how I really feel. I want to look ok. I work so hard at it. I don’t want to be defined by my headaches, but they are, unfortunately, front and center 24/7. They affect every aspect of my life and therefore greatly affect the lives of my boys. It is a constant coping process-being able to be at peace with the fact that this is life while still always holding onto some hope that we will find new answers. But to live in a state of waiting, being *too* hopeful, leaves you in a dark, disappointed place if you don’t handle with care. Hope unfettered leads to bitterness. That’s not Biblical, (maybe the Message?😆), but I just think everything should be in moderation. …or I’ve just gone more dark and twisty that I realized! 😂I’m learning that an important key to my happiness is being able to be ok with where I am while still putting one foot in front of another. And laughing. You gotta laugh.
But in reading some articles today about chronic pain, I was thinking of those who support me. Being in a support role has got to be incredibly difficult, especially when there is no end game. It’s not like I’m recovering from surgery or an illness. My family has to adjust to the fact that this is life just like I do. My precious husband has watched me endure so much pain in our 15 years of marriage, I’m surprised he hasn’t run for the hills. Sometimes I think it may be more emotionally draining to be the caregiver than to be the one in pain. I see how helpless he feels. He works a job that demands a lot from him all day, and when he gets home there is no rest in sight. He comes home and takes care of us. It’s not unusual for me to pass the baton and go to bed at 6 or 7 if it’s been an especially hard day. The guilt I feel that my kids are growing up with a sick mom is overwhelming. Yet, I grew up with a sick mom. I know so many who had illness in their family growing up. Are any of us a stranger to hardship of some kind? This is what I have to remind myself, and my kids, lest anyone get to caught up in our own pity party. We all struggle. I know that it is not only ok, but maybe even a good thing for my kids to learn how to take care of themselves and our family. They simply must learn that we are a team. They don’t have a helicopter mom because I can’t and for this reason I’ve been super proud to see so much of what they can do for themselves. And lately Hubs and I’ve been empowering them to take care of each other. They keep surprising themselves with what they can do when a parent doesn’t step in a save the day.
Being in chronic pain means I have to be so careful with my energy and who/what I spend it on. I have grown so particular with how I’m social and what I can handle, and that’s a very hard concept to explain to people when it comes to be having to pick apart which social events I can attend. It might turn out that it’s too windy for me to go to your bbq, or too sunny for the pool. Too cold at the Christmas party, too much activity at your game night, too much walking for that sporting event, too much perfume from that one person in bible study that triggers a full on migraine attack-can’t go, or I just already spent my spoons on my family today and no matter how much want to, once I’m out of spoons, I’m out of spoons. There’s no pushing thru. There’s just the wall. The wall is bed. Or the Hospital. And you stay there until your energy source says you’ve earned back enough spoons to do another activity. Just remember, it’s far easier to lose spoons that it is to earn them back. Womp.
What I thought of the most while I reading this was how many people have come in and out of our lives over the years as my health has declined. My migraines are a handicap. I’m a wildcard. We are the friends who always need help with something. We are the friends who may cancel on a second’s notice because I couldn’t leave my dark bed. I’m the friend who complains. That was hard to admit. I don’t want that to be true, but I know it is. I’m the friend who needs a ride to the ER and will try to suck you in for the whole visit. And yet, I have 2 handfuls of friend who keep. coming. back. Friends that will lay on the couch with me, cry with me, clean my house, feed us, take care of my kids, take me to the hospital, make me laugh, and so much more. That is love. I feel a lot of love in all this pain. I’ve been wanting to write about it for weeks now, as I’ve just been overwhelmed with gratitude for all of you in my life. All of you that have a healthy respect for the pain that grips me and acknowledges it accordingly, but you see me as so more than that…You’ve helped me to be something other than a migraine. To all my people who love me despite my invisible mess, I’m so grateful.
That’s beauty from ashes.