Current State
I've realized, as many of you have asked me for updates (thank you!), that it's been a long time since I've given an update about my health. In fact, I've kind of left the story hanging since the last update... Part of that was intentional, because I needed time to see how things would play out. But maybe it's time to circle back with the "current state" of things.
The short answer is, I'm much better than I was but far from 100%. We've never gotten an answer for what caused all the symptoms. The first neurologist we saw had told us that some patients develop crazy symptoms without ever discovering the cause; then suddenly one day, they improve and go on about their lives. Most likely these are caused by an unknown virus. It seemed far-fetched and unlikely at the time, but we've often wondered recently if he could have been right. In reading through old journals, I discovered an entry about a 4-day fever the summer before the symptoms started. Who knows? Maybe it was a virus. We may never know...
Answers or not, life continues on. My workplace was incredibly accommodating and allowed me to essentially re-write my job description to work part-time. I work on average 20 hours a week, and it's given me the balance I'd desperately needed. Some weeks are longer, and on those weeks I'm always reminded of why I cut back. But I can manage a long day or a long week here or there, provided I can balance it with rest.
Naps are a daily, essential part of my routine. I still have the muscle fatigue, although my stamina has improved. Where for a time I struggled to stand for more than a few minutes before my muscles complained, now I can do much more. But prolonged muscle use (carrying an item, even if it's not heavy; holding the steering wheel for long, or pushing my leg muscles) still results in shaky, weak muscles for up to hours afterward. Joint pain has been a new, frequent friend, but it's not incapacitating. I still have problems swallowing some days, and the blurred vision comes and goes. But neither are as debilitating as they used to be. There are flares and days when things are worse, and then there are days when I feel almost normal.
We've found a way to move forward with life accommodating whatever this is for however long it lasts. When we picked out our kitchen fittings, for example, we chose hardware that was easy to use and ergonomic. We built in the window seat and seating at the island for the kids, but also for me. If I'm having a bad day, I can sit and cook. We did add steps into the dining room, but if we had to it would be easy to add a ramp in the future. And I still have the chair lift to get me upstairs on the days when I need to use it.
Thank you to all of you who've walked this wild road with us. We're not out of the woods completely, but the trees are thinning and the sunlight is streaming in. We're living life, and it's a good life. Of course, the cane still hangs on the wall next to my bed--Micah's request--so that we are always reminded of how far we've come this year.
The short answer is, I'm much better than I was but far from 100%. We've never gotten an answer for what caused all the symptoms. The first neurologist we saw had told us that some patients develop crazy symptoms without ever discovering the cause; then suddenly one day, they improve and go on about their lives. Most likely these are caused by an unknown virus. It seemed far-fetched and unlikely at the time, but we've often wondered recently if he could have been right. In reading through old journals, I discovered an entry about a 4-day fever the summer before the symptoms started. Who knows? Maybe it was a virus. We may never know...
Answers or not, life continues on. My workplace was incredibly accommodating and allowed me to essentially re-write my job description to work part-time. I work on average 20 hours a week, and it's given me the balance I'd desperately needed. Some weeks are longer, and on those weeks I'm always reminded of why I cut back. But I can manage a long day or a long week here or there, provided I can balance it with rest.
Naps are a daily, essential part of my routine. I still have the muscle fatigue, although my stamina has improved. Where for a time I struggled to stand for more than a few minutes before my muscles complained, now I can do much more. But prolonged muscle use (carrying an item, even if it's not heavy; holding the steering wheel for long, or pushing my leg muscles) still results in shaky, weak muscles for up to hours afterward. Joint pain has been a new, frequent friend, but it's not incapacitating. I still have problems swallowing some days, and the blurred vision comes and goes. But neither are as debilitating as they used to be. There are flares and days when things are worse, and then there are days when I feel almost normal.
We've found a way to move forward with life accommodating whatever this is for however long it lasts. When we picked out our kitchen fittings, for example, we chose hardware that was easy to use and ergonomic. We built in the window seat and seating at the island for the kids, but also for me. If I'm having a bad day, I can sit and cook. We did add steps into the dining room, but if we had to it would be easy to add a ramp in the future. And I still have the chair lift to get me upstairs on the days when I need to use it.
Thank you to all of you who've walked this wild road with us. We're not out of the woods completely, but the trees are thinning and the sunlight is streaming in. We're living life, and it's a good life. Of course, the cane still hangs on the wall next to my bed--Micah's request--so that we are always reminded of how far we've come this year.
