Having lived with a chronic illness for 12 of my 41 years on earth, I’ve learned to adapt to the major changes in my routine due to Lyme disease. Life simply isn’t and hasn’t been the same for 12 years. What used to be a healthy body that could literally spring out of bed is now a body that never gets enough sleep for its needs and takes naps daily just to get through the day. So what does a typical day look like for me someone with Lyme? Well, that really does vary person to person as Lyme disease affects people differently, but for me, it looks like this.
(DISCLAIMER: If I have a migraine, my day looks completely different than below. I’m essentially bedridden on those days.)
While my children are out of school I’m able to sleep in, which is very helpful to my sick body. It needs as much rest and sleep as possible. So right now I tend to sleep until 9:30am to 10:00am. It’s nice because my kids are teens and preteens and they like to sleep in, too, so there isn’t a problem with me sleeping that late. During school season I am usually up at 6:00am getting kids ready for their day. But back to the typical summer morning, as it stands right now.
I’ll hit snooze more times than I’d like to admit and then lay in bed looking at my phone alerts for about 20 minutes before getting out of bed. But before getting up, I take a quick scan of my symptoms. What hurts, how badly does it hurt, what doesn’t hurt as bad as it maybe did the day before, and how do I think the day is going to go for me. Most mornings it looks like, tired, pain, tired, and more pain.
After coaxing my body awake and upright, I shuffle to the bathroom as my joints are severely stiff and painful, especially in the mornings, and I can’t move them very well so shuffling is what you’ll find me doing most mornings.
I wake the kids, make breakfast for everyone, or in this case, more like brunch, and head to my medicine cabinet to choke down all the pills I have to take. I currently am on approximately 15 pills in the morning, 7 drops of one herb for the Lyme, and 8 drops of the other herb for Lyme, one dropper of CBD oil to assist with pain management, and a multi-vitamin. The pills are mostly for joint, bone, and thyroid support and when my ulcer acts up, I’ll then add more pills to the regimen for that.
I’ll then get the kids settled in the morning, either sending over to grandparents (close enough to bike to), video games, television, biking etc so that I can climb back into bed, pulling my laptop to my lap, and work for a client for a couple of hours. I’m grateful to be a virtual assistant and have been for 16 years now. I wouldn’t be able to hold down a traditional job so working remotely is a huge blessing. After checking on that mornings tasks and finishing up my to-do list I’ll usually close my laptop, roll over to laying on my side, and will watch TV or look on my phone for about an hour to rest. Because, in the land of chronic fatigue even laying in a sorta upright position for a couple hours typing on the computer can become tiring and you have to recover from that activity.
Lunch is made, conversations with children are had, a few more pills are swallowed and we’ll gauge the day’s plans then. What does everyone want to do that day, what do they feel like, are they being lazy that day? Do they want to go for a walk, go for a swim, go to grandparents, play video games, chill, clean the house? You get the idea. Your basic questions any parent of older kids asks themselves on a typical summer day. What can we do to entertain ourselves.
Often my three boys will find something to do together to entertain themselves after lunch and maybe a walk around the block with me. Or we’ll clean the house. I like a clean house. It doesn’t take long before I need to recline a bit again. I can’t sit for very long because of the extreme joint pain and stiffness so reclining or laying down are my usual positions when I need to rest and not be up walking around.
I’ll then draw or hand embroider or do something creative with my hands and brain as not to just lay around and do nothing with myself when I’m recovering from activity. After an hour of rest or whatever, I’ll pick the laptop back up and check on work again. Some days are busier than others. Some seasons during the year are, too. Typically, though, I work about two-three hours each day.
Dinner is made and this is when I spend more time with the boys since it’s usually cool enough to get outside. We’ll go for a walk around the block if my pain levels are too bad, or we’ll go on a nice long trek through the neighborhood if my energy levels and pain levels allow. And that is always wonderful. I get to spend quality time with the kids, getting to know them even better, and make memories together out in nature. It’s a blessing and I appreciate every memory made together. During the summer, I’ll often take them swimming in the evening if we aren’t going on a walk. And that is equally as fun.
After the walk or swim, daddy is usually home by that point and takes over the entertaining of the children. They love playing Smash Brother’s with their daddy and this is when I find more time to rest. I’ll climb back into bed and either work a bit more, watch a crafting tutorial, talk to a friend, or something of the sort. The nice thing about my health right now is that it usually only takes me an hour of downtime to recover enough energy to get back out of bed and live life again.
We put the kids to bed around 10:00pm and my husband and I then talk, watch television, and go back to bed ourselves.
Sprinkled into my days are stretches for my bad back, reading or podcasts, chatting with friends, cuddling my dog, doing art with my kids, talking to them each about whatever is interesting them at the time, talking to my husband about politics etc. Your basic things that most people do but the only difference is that I end up in bed a lot more than a healthy person ever would.
I want to make it clear that every single person with a chronic illness of any sort has their own “typical” day and may look nothing like mine and that is okay and just fine. My story doesn’t invalidate theirs, nor theirs, my own. And my story changes. It looks totally different than it did 10 years ago, and I hope it will look different (better) 10 years from now.
Healing from Lyme disease is a zig zag experience… It isn’t a straight-forward process. And as soon as I think I have my body figured out, it throws me another curve ball and I must adjust my days accordingly and that really is okay.
I hope you know that no matter how bad your day looks, your life is valuable, your presence on earth is needed and appreciated it, and your process to healing is just the way it needs to be for your own body.