I’m on day 7 of my first real break in symptoms in over a year. Luckily about a month or two ago I had a 4 day streak that was AMAZING. But until that point I hadn’t had a good day in almost a year. And then I have this little reprieve here, and it’s been great. I could go on and on about how great it is, but I also don’t want to sound like I’m bragging (na na na na na, I had a good day and you didn’t). No….not my point in writing tonight at all.
I want to talk about the less good good days. I rate each day on a scale of 0-5. It helps me to track patterns in treatment. It was so amazing this week to be able to put high ratings, the highest I’ve had like I said in over a year. And then yesterday the excitement of my weekend caught up with me. I still felt wonderful in comparison to the past several weeks…month…years actually. But I was tired. At the end of the day it was a bit of a let down that the day wasn’t as good as the last two. Yet it was still better than anything I’ve known in a long time.
Today was another tired day. Thanks to allergies I had my 3rd night of decreased sleep, and because of that I was overly tired when I had to get up this morning for an appt at the IV center. So today is still part of the streak of good days. But I peaked early in the week…and it’s interesting how I can be let down by a day that is better than all the days of the last year combined!
Thinking about this while hanging with my new “crowd”, my 92 year old former babysitter, I realized that I’m not used to fluctuations like this. Most of my disease has been good or bad. Not a lot of in between. So when I have a good day, it’s usually just one day. If I have a group of days, it’s usually just a group of days and I return to my bad state when those days end.
This time it’s different. I think mostly because I’ve made progress in treatment and with some new things I’ve tried. But instead of having my good days and then crashing the 2 days I felt tired, I just felt tired on those days. So it’s almost mind boggling after so much black or what when it comes to how I’ve felt, to have days that actually fall into a “gray area”.
After 2 years I’ve become accustomed to saying that any good day is just that. One day. And I can’t worry what the next day will bring, or be stressed that the good day won’t last. Instead I have to get out and enjoy every single minute of that good day, while also not overdoing it. I’ve managed to “grab the bull by the balls” so to speak (favorite line from movie ‘Never Been Kissed’) with each of these last 7 good days and take advantage of it.
But each day that I wake up and still feel better I am filled with gratitude at another shot of making a day truly count. But because this change in the pattern of my disease has really thrown me for a loop, it blows my mind at how little we are really prepared for the weird things this disease throws at us. From the symptoms and physical problems, to the psychological side of what I think of as “the dance”. The dance between me and those damned little spirochetes that casing all kinds of havoc within my body. I seem to be in the lead right now, finally getting a lead on those nasty little buggers.
I’ve had to slow things down a bit, not be quite so actively enjoying the good days. Instead I’m appreciating the quiet times where I can enjoy it too. Again, another thing I’ve never had to face. Quiet time is always because I’m sick, or need to rest, or can’t do anything else because of how poorly I feel. To make a choice to sit down and read a book or watch TV because it’s what I want to do, not my only option of what to do, is truly a blessing.
I share this with all of you so that you can understand when you ask me one day and I say I’m great and you ask me another day and I’m horrible, and you look so disappointed. Having a good day no more means you are “better” than carrying a feather in your hat makes you a bird. It’s such an important lesson for family and friends to learn. But as I’m learning myself at this 2 year mark of treating this illness, I have to say it’s a lesson that even I have to re-learn. Many of you reading this are years ahead of me, and probably understand exactly what I mean. Perhaps you have some good ideas or suggestions on how to transition when your good and bad days start to change into something else as you progress with treatment.
Again I’ll say that tomorrow I may wake up as sick as I was a month ago, and that’s okay. I may only feel half as good as I do today, and that’s okay. Because I was able to enjoy what good time I’ve been blessed with. The final thought of today’s ramblings is that. ENJOY THAT WHICH YOU’VE BEEN BLESSED WITH!!! Whether it’s a good day, a great kid or a mother who makes the world a better place. Embrace and celebrate it when you can. Don’t look back with regret on wasting your good days worrying about your bad days. This disease is a fickle mess of nonstop changes in how we feel and in our bodies. We have to teach our heads to follow and adjust to the changes the way our bodies do.
On that note, I’m going to watch some TV. Not because I’m too sick to do anything else, but because it’s time to rest now, and that’s what I want to do. Now I go to bed each night with a strengthened curiosity to see what changes may take place during the night and how I will feel the next day.
Thanks for taking the time to read this, and hopefully share some coping strategies some of you experienced veterans of this disease have used as your good and bad day’s began to morph into something different.
Praying for good days for you all!!!