I wasn’t sure I was going to write this post. I try to write posts that can relate to a lot of people with Autoimmune and other invisible chronic illnesses. But after thinking about it, I decided this is also about MY journey. And as such, it is unlike everyone else’s. After all, no one with Sjogren’s has the same symptomology or the same progression, so choosing what I am doing during this stage of my illness is more a statement of where I am mentally rather than a statement of what actually works or what can actually be attempted by others who are also sick. And if it works for me and can inspire others, wonderful!
So here goes… In July of 2014, I bent over and picked up an empty detergent bottle. Keyword-EMPTY. I ended up in the ER with two bulged discs and a vertebral fracture in my lower back. I wish I could say I was skiing or wrestling a bear or some other activity that makes sense. But I can’t. And that’s important because it shows how severely these diseases can affect our bodies in ways we may not even consider! Anyway, I was out of commission for weeks on the floor and slowly got back into life. But I didn’t rebuild. I barely walked. And I didn’t have the stamina to exercise, so I didn’t. Moreover, I didn’t have the knowledge I needed, but more on that later…
Forward to December of 2015. I needed a small desk carried upstairs. Something I could easily have done not too many years ago. It was not overly heavy. No ER this time, but I fractured my back again, this time in the middle. A compression fracture like the first. But how could it happen twice so close in time? Suffice it to say, after several tests, that my spine is osteoporotic. It is fragile. Only my spine - however that is possible - but being the most important structural center in my body, that scared me. A lot.
So here I am, healed of two fractures and coming off of months of inactivity. Which led me to this. An all out fight to regain my physical self.
This time around, I requested physical therapy. It didn’t happen the first time and I obviously overestimated my abilities. I wanted to start from ground zero and figure out exactly where I was and how best to start the road back. Or the road to the middle. The road anywhere but where I assumed I was-at the bottom. And I was right. My body acted as if I actually had no muscles. Whether they have just forgotten their jobs or have actually gone away over the course of my disease and these two injuries remains to be seen, but my weakness was shocking to me. However, I had my starting point: a flesh colored resistance band and homework!
But that wasn’t enough. And here’s where my decisions become my own rather than the norm for this community. I went looking for a personal trainer. One on one support to hold me accountable for my homework and to bring knowledge and oversight to my recovery that I finally had to admit I didn’t have. I was athletic before I got sick. I naturally gravitate to the dance and sports exercises I used to do. But I can’t. At least not yet.
So I found someone I could trust-in my case someone I knew from highschool-to guide me through my new lower level of ability to make sure I didn’t hurt myself again. As hard as it is to admit that I am so far away from what I once was, it is more important to me to protect my body in the future. At this point, I am being attacked from all sides. I no longer feel I have a choice but to build up as much as I can even though it’s hard and it hurts and it wipes me out completely. (And I never ever want to fracture my back again!) Hopefully, I can build up enough to ward off the next progression of my disease. I don’t truly know how this all works. Maybe I can even gain back some of what I once was…
Either way, I get that this route is not for everyone. I’ve been in bed all day before because I couldn’t move. I know the exhaustion that these diseases bring and I know the risks I take from choosing this method of attacking my illness. But for me at this stage of my life, it feels right. And it might actually be working! All I know is, I truly feel this is the only way I will have a future that includes any kind of activity. And I owe it to myself to try.