I'm "Lyme tired". As in, I did practically nothing today but I can barely move, my eyes are so bleary they're watering nonstop and people keep asking me why I'm crying, and I look like I aged ten years in a single day. No amount of makeup can hide "Lyme tired", and I have no idea if it's going to last for a week or be gone by tomorrow morning.
This disease is so frustrating. I want to plan weekend barbecues, late night movie dates with my husband, take my Littles to the park for a picnic, get a full time job, walk with the dogs around the lake every evening, take meals to encourage people when they're sick or have a new baby, take up a hobby or two... but no. I'm still too sick. I don't want to be sick. I pretend I'm not sick all the time.
Today I sat on the couch with a plate of breakfast and a cold drink, dogs at my feet, watching a movie with my oldest daughter, and I thought "wow, this is really nice". It felt so "normal", except for the fact that I was tied to an i.v. tube for an hour.
That's my "normal" now. Get up, take eight medicines, take the kids to school, come home, have breakfast, start my i.v., take a nap. Get up, take seven medicines, plan dinner and/or start the crockpot, have a nap. Pick kids up from school, run an errand (which generally means I nap in the van while my older girls go into the store or wherever), drive home, make supper, rest for a bit. Make lunches for the next day, head upstairs, take six medicines, fall into bed exhausted. Every. Single. Day.
One of the most frustrating things about this disease is the fact that it is a neurological illness, meaning that it affects the brain. The whole brain. It doesn't pick and choose which parts of the brain to mess with. Not only are there destructive bacteria in my brain at any given moment, as the antibiotics do their job and they die off in every other part of my body, they release toxins which accumulate in the brain, causing pain, confusion, and major emotional storms. I've pretty much conquered the fits of rage (and yes, there were many of those over the years, for which I will forever feel guilty), but the fatigue and pain just get to be too much to handle some days and they leak down my face in the form of tears at the most inconventient times. I have no idea how to conquer the tears. To be honest, I'm too tired to try.
I am learning to be grateful for the things the healthy Susan might have taken for granted: my husband coming in the door after work and walking straight across the room to kiss me hello before he even cleaned out his lunch bag; the lack of rain today so the kids can play outside and not strew their toys, blankets and dirty dishes around the house; the warm(ish) temperature that allows me to have the windows open for a fresh breeze; my 18 year old daughter's culinary expertise and willingness to pick up making the dinner I had planned and run out of steam while doing.
Lyme Disease gives you a choice: you can either choose to let the discouragement, pain and frustration take over and strangle your spirit, or you can choose to find beauty in the little things and let them be a healing balm.
Tonight my healing balm is Jambalaya with chicken, sausage, shrimp, peppers, onions and peas, made by my thoughtful daughter-blessing. To her future husband: you're welcome. This girl is an amazing cook, instinctive and creative. She embodies beauty, and you will be blessed many times over by her cooking. Trust me. This Jambalaya is delicious.
And now the love of my life is taking me for a drive that may or may not include ice cream. He knows when I have exhausted my store of endurance, and knows that alone time with him recharges my drained batteries. More beauty, and another healing balm.
Thank you, Father, for the blessings you have hidden in the pain, like diamonds waiting to be unearthed. For these I am deeply grateful.
Blessings,
me. <3
