Two Weeks On
Two weeks ago today I woke up to what appears to be a full-on flare up. While I've had my fair share of bad days here and there over the past two years, it was by far the worst I'd felt in several months. I've spent a good part of the time on the couch or in bed.
Many of you have been so kind to reach out, ask how we're doing, bring food or help with projects around the house. Most of all, you've encouraged me to be real about things.
So here's the quick, simple real look at life from this point in our journey. We still don't know. We don't know what causes these flares, we don't know what causes the symptoms that affect my daily life even on good days. We don't know what they look like moving forward. When we thought we had an idea of the pattern and triggers, this round came out of the blue. So now we know we need to allow a contingency for this in every aspect of our lives.
Many times I've been asked if I'm angry. I have to be honest and say most days I'm not. But I'm sad. There are layers of grief any time we encounter something new in our lives that mean things are no longer as they used to be. I've been sitting with that grief in the past two weeks, taking my time working my way through it, crying tears when I've needed to and setting it aside when I've needed that. My journal has taken the brunt of the process.
The past couple of days I felt a little better. After having used the cane and wheelchair last weekend, yesterday I ventured out for the first time without anything. Today I'm tired, but my mind is sharp and my body (so far, anyway!) is mostly on my side. I have my next doctor's appointment at the end of this month, so we'll see what insights they may have to offer at that point.
I guess I return to what I said when all of this first started two years ago: each day stands alone. Each day has the potential to go either way. We'll take it as it unfolds, deal with the symptoms and emotions and impact on our lives, and keep moving forward. If today's a bad day, maybe tomorrow will be one of the good ones.
Many of you have been so kind to reach out, ask how we're doing, bring food or help with projects around the house. Most of all, you've encouraged me to be real about things.
So here's the quick, simple real look at life from this point in our journey. We still don't know. We don't know what causes these flares, we don't know what causes the symptoms that affect my daily life even on good days. We don't know what they look like moving forward. When we thought we had an idea of the pattern and triggers, this round came out of the blue. So now we know we need to allow a contingency for this in every aspect of our lives.
Many times I've been asked if I'm angry. I have to be honest and say most days I'm not. But I'm sad. There are layers of grief any time we encounter something new in our lives that mean things are no longer as they used to be. I've been sitting with that grief in the past two weeks, taking my time working my way through it, crying tears when I've needed to and setting it aside when I've needed that. My journal has taken the brunt of the process.
The past couple of days I felt a little better. After having used the cane and wheelchair last weekend, yesterday I ventured out for the first time without anything. Today I'm tired, but my mind is sharp and my body (so far, anyway!) is mostly on my side. I have my next doctor's appointment at the end of this month, so we'll see what insights they may have to offer at that point.
I guess I return to what I said when all of this first started two years ago: each day stands alone. Each day has the potential to go either way. We'll take it as it unfolds, deal with the symptoms and emotions and impact on our lives, and keep moving forward. If today's a bad day, maybe tomorrow will be one of the good ones.
