With 6 months since my loading dose of Rituxan, I’m absolutely thrilled to say that I’m physically the best I’ve been in a couple of years. Mentally, I may be the best I’ve ever been since getting sick when I was eleven.
As I mentioned in my 3-month update post, the progress has been slow but steady. As it was when recovering from PANS, it often has been so slow that I didn’t really know it was happening at all.
Six months ago, it was all I could do to work for forty or fifty minutes at a time at my desk. I used to feel an overwhelming need to go lie down and would need to rest for at least an hour or two at that point. The most I could manage on the best day without crashing would be two or three hours of work.
This past week, I have been working for 4–8 hours per day without noticing. And just as telling, when I feel I need to take a break, it is mainly a mental break I need. And I feel like I need to get up and walk around and stretch rather than lie down—a completely typical urge for any healthy person I would say.
Mentally, I have come down to the lowest dose of one of my meds in over five years. Another one is the lowest it’s been in two years. But even more notable is that I am so focused on my work and friendships that I often forget that I’m technically sick.
I think I’m getting close to a time when I reveal what I do for a living and maybe even who I am, because it’s getting to a point where only talking about dealing with my illnesses feels completely one-dimensional. But for now I’ll just say that the latest project from my job might be my best work to date. I feel passionate about raising visibility for chronic illness and disability in my field, but I’m trying to figure out how that ties in with this blog.
Recently, I started seeing another specialist, and in looking through my medical records again, I was struck with a sobering realization: I never make it more than a couple of years before some virus or infection completely upends my life. I’m about to be at that two-year mark.
Having a neuroimmune relapse feels less like a question of if so much as when. And things are going so well that I sometimes feel like surely something bad is about to happen.
I no longer live in fear of a PANS relapse, but the reality of living with mild-moderate ME and POTS means it feels there’s always a possibility that it could all get worse again. How would I take it if it happened again? Now that I’m establishing myself in my field, I fear it would be even worse if everything fell apart all over again.
But instead of living in fear and worry, I’ve decided to be proactive about doing everything I can to prevent a worsening of my condition. I know I’ll get some pushback for saying this, but for me that has included getting the COVID vaccine. It’s much better to risk a flare and become immune to COVID rather than to take the risk of catching COVID and living with long-term complications. The “1% death rate” some harp about doesn’t even begin to tell the whole story of what’s really at stake. Some are forgetting that even mild viruses can upend a life with a neuroimmune condition.
But you know what? I haven’t flared from the Moderna vaccine so far a month later. We’ll see how the second dose goes, but I feel confident this was the right decision.
I’m planning a longer post in the future about why I chose to get the vaccine, but I just wanted to jump on here and give everyone a quick update that things are going really well.
I’ll probably post more soon about all of this, so stick around…
