I just wanted to do a general update on how things are going now that I’ve been working for a month. It’s crazy how much things have changed already, but that’s life in spoonieland. If nothing else, things are always changing, be it good or bad. Luckily for me, things have been climbing like I’m a hot air balloon attendant rather than an Uber driver and I think I probably have PQQ to thank for that. Without my protocol, I’d still be laying in my bed moaning to myself and contemplating how to exit this world as painlessly as possible still. Thank goodness those days are behind me and I’m going to work hard to keep them there, though I’m pragmatic and understand that with an Ehlers-Danlos body, I only get so many choices. Still, there are many choices to make and I’m dedicated to controlling as much of this disease as it will allow.
In the energy department, I couldn’t be happier. It seems I only continue to gather more weekly. Sometime last week I realized that I was spending a lot of my time fearing something that just wasn’t happening anymore and it was time to unclench and enjoy my life a little more. Post-exertional malaise has taken a vacation and I can comfortably get to work without that bastard staring over my shoulder. I actually wake up every morning feeling fully recharged and ready to take on my day, pain be damned.
Even my pain levels are fairly low. Yes, I’m still fighting with headaches, but they’re minor compared to the severe migraines I was fighting with for years that included unbearable bouts of nausea, vomiting, auras, light and sound sensitivity that had me locked away from the world for weeks at a time. I’m also still dealing with near daily subluxations and the sore tendons, ligaments and muscles they leave behind, but that’s nothing in comparison to the years of agonizing muscle spasms and myofascial adhesions that left my entire body wracked with searing pain for years. Some days, I don’t even have to take any pain meds at all. Others, it’s as simple as taking a few tylenol and a muscle relaxer or applying a topical here and there. Life is pretty sweet, really.
I’m just a bit overwhelmed trying to deal with all the change. I feel wonderful, but I’m having a bit of a hard time keeping up. I don’t trust this new world order. I’m constantly looking over my shoulder, waiting for that infamous other shoe. I’m afraid to increase my work hours and use my SGA only to fall ill. I fear increasing my exercise and costing myself a day or work, even though what I do is mostly sedentary, because like it or not, the mental exertion costs my body almost as much as physical exertion.
And then there’s what I want to do versus what is best for me to do. Like I love the great outdoors, specifically the mountains and the woods and hiking trails, but the worst thing I can do for both my joints and my osteoarthritis are jarring activities. I should stick to my recumbent bike and walking at the mall, but I want to be hitting the trails at Red River Gorge and drinking in all the gorgeous fall color. Luckily, I found a bit of a compromise in a few trails that are mostly flat and somewhat paved combined with some drive up lookouts, so my husband and I drove down on Sunday to check them out.
What amazing beauty. It was the first time in 10 years we were able to visit and we did very well on the trails we chose, always turning back when the trails began to dip too much for my safety. I came home with only one minor subluxation and a hip jamb that didn’t even hurt the next day, a little knee pain and only the slightest post-exertional payback the next day. I am elated that our hiking attempt was a success and I now know that I can do a couple of miles so long as I refer to guides and follow the rules I’ve created for myself closely. This disease is all about compromise and when you really love doing something, you have to find a way to make it work.
Hopefully I will soon find time to turn one of these treasured shots into a painting. This is honestly one of my frustrations, however. Having time to do the newfound things that I love. I began painting when I was housebound and needed an outlet for creative expression that didn’t require the use of the speech centers in my brain. They require an immense amount of time that I no longer have, though. I can’t even seem to keep up with the housework and I’m only working 3 days a week. While I no longer require full days of rest in bed, I still need my daily rest breaks of kicking back and staring at a little mindless television while giving my body a rest in my recliner. Also, because my joints are so unstable, I don’t dare rush through physical tasks of any kind. Everything takes so much more time than it did before I became ill. I feel like a turtle in a rat race. I can’t even keep up with my beloved blog, though I try!
One day at a time, one step at a time. I’m so amazed by all that I’ve recovered, I won’t be surprised if the complaints I’ve listed here today are things I will be celebrating a victory over somewhere down the line. But even if I don’t, I can’t complain. I’ve come so far from where I was and I’m proud of myself for taking the many steps required to get here. I’m finally in a place where thinking about the future isn’t such a scary thing. In fact, I view it with relish and find myself making many plans for my future alongside my husband. It’s a much different worldview than I’ve possessed in many years and it has me shouting from the mountaintops to be counted in this life.