I’ve got good and news and I’ve got bad news. The good news? I haven’t felt severe, take my breath away, knock you on your arse pain since early January. The bad news? I now remember what such pain feels like as I am in the throws of my second day of 6-8 pain (on a scale of 1-10) with a side of nausea, fever and vertigo. I am incredibly thankful for the good months. But I am terrified this marks the beginning of another decline. That’s what chronic illness does – it keeps you guessing. It keeps you dreading. It keeps you looking over your shoulder waiting for the next medical misadventure.
Today is a snow day… in March. March! Screw that stupid groundhog. It means kids are home and I have to do my best to push through this pain and be a mama. I’ve been a mediocre mama today but props to me that I wrestled them in and out of their snow clothes a total of four times (and that’s painful on a good day). I breathed my way through it and tried not to vomit in their boots. Thankfully, we only had one “oops, I need to go potty” or someone may have died.
We are far from staged right now. The house looks like a bomb hit it. Half packed bins and boxes littered all over. Half-done homework scattered on the kitchen table I don’t have the strength to battle over. Dishes strewn over the counter and cooktops. Crumbs, dirt. Wet clothes at the front door that need washing and drying. Baskets full of dirty and clean clothes which need to be moved along in the assembly line. Pee splattered bathrooms because heaven forbid any of my boys aim. This is the house I only let a handful of people see.
I planned to make chicken noodle soup today out of the leftover rotisserie chicken I lovingly purchased from Giant pre-cooked, warm and ready for the eating. I don’t know if I have the ability to make it and do bedtime routine, laundry and prepare the boys for school tomorrow. It may be another pizza night, which while yummy totally goes against this gluten free diet thing the doc wants me to try. (And the beer I am sure to guzzle down with it.) Yes, the reason I am no longer a size 6. Sigh… I am just too tired and sore to care right now.
There it is again. “Mmoooomyy!!! Mommyyyyyyy! MOMMY!” Right now that sound rivals fingernails across a chalkboard. Isn’t that awful? I want to love hearing my name called (as it is so many friggin’ times a day). But, instead, I become frustrated and angry because it hurts to move and I just do not want to be needed right now. I want someone to bring me water and rub my back. I want someone to make my food, bring me medicine, ask me how I am feeling and listen to me whine.
Wow, I realize I sound bitter. I’m not actually. My bitter diatribe is a pitiful attempt at hiding the fact that I am scared and overwhelmed. Worried how in the world I will accomplish all that is needed when the only position I don’t want to vomit from pain in is curled up in my soft bed. Maybe tomorrow everything will lift and I will be back to my quasi-improved self. But maybe not. This is a reality my family struggles with every day.
So there’s your peak into my life when I say “I’m having a bad pain day today.” This is the funk I get myself into. Whenever someone remarks on my strength or good attitude, I am a bit ashamed because I think of days like today. I want to run away to a world where I am not responsible for anything or anyone and I can just curl up into a ball in pain and wait for this round to end.
It’s 5pm. I have to decide what the next hour will look like. I have no idea how I will push through the next few hours let alone the next few minutes. But somehow these days always end. Somehow the kids are still living and hopefully not too psychologically scarred. Somehow my marriage survives another day of this craptastic disease. I don’t want to be happy or positive or anything. I just want it to be 8pm so I can get flat and quiet and pray – plead – that tomorrow will be a better day.
Update: “Tomorrow” was a better day! Pain let up to the point where I feel like I can exhale. I was out of bed more than I was in bed – I think. I am so very thankful for a God that provides me just enough strength to place one foot in front of the other. Without these limitations placed on my body, I’d be foolish enough to think I do this life all on my own. He provides me with a soft place to land when the days are full of shards and splinters. He quiets my heart when it longs for something more. He whispers encouragement to a weary wife and mama who wishes she could be more than she is. He lets me know that I am created by THE I AM and nothing He creates is wasted even on the hardest of days. Joy comes in the morning. Even if we have to wait one hundred mornings. Joy comes.
Oh, my gosh I love this, I love this in more ways than I could ever explain, you put my life into words. Words I feel no one else can understand unless they have been there with me, your a strong woman thank you for sharing so much of yourself.
Monica, I’m so glad to have you here “visiting” with me in cyberspace! It’s such a gift to have people like you who say “Aha! Me too! I understand.” We all just want to be known and really seen for who we are and what we are experiencing. Chronic illness and pain can be such a lonely place. I hope my little corner of the interwebs continues to encourage you and make you feel a little less alone on those “bad pain day”.
Precious friend, I can only imagine what it must be like for you with children and a chronic illness. I struggle desperately with no children (not by choice but it just worked out that way). I love, love, love reading your blog posts! God has given you a special gift of words to share with the rest of the world. Remember during those darkest hours, God says you are enough and you are perfect just the way you are. His strength is made perfect in our lowest and weakest moments. Praying for you, your husband, & those sweet babies. Blessings!
Stephanie, I love your blog posts. You have a true gift with words! Everyday is a pain day, but this is exactly what a “bad” pain day is like. It is so hard to put into words. Thank you for sharing your life with us!
Sweet friend….will continue to pray that these crappy flares come back less and less. Have you figured out any rhyme or reason why the flare starts? I know it doesn’t help now but it gets better….with the kids I mean. When I first got sick my kiddos were one and 5 and my how times have changed. It was so difficult then to do everything but I had to stop…not try to be normal…pray…quit being perfect…and doing what everyone wanted and ask for help. And now after 7 years and different treatments and meds, the med that works for me has been found, my management of my pain and my body is so much better and my kids are older and my husband understands so much more. I think t half the battle is figuring you out, managing your pain, body and day. Keep a journal to help. I understand the day you had in this post….I pray they come less often and I pray it gets easier to manage every day. I get it!!!! 🙂