Chronic Illness Life: Spring Update
Happy Spring
Hello friends!
It’s good to be here again. I apologize for my sparse blogging presence lately—-all I can say is it’s been a difficult time symptom-wise, and despite persistent efforts, it hasn’t been happening. Even writing this post has been quite an undertaking for me and whatever I manage to write will be accomplishment enough.
I know it’s a bizarre and challenging time for everyone right now—and as much as that saddens me, I also take a strange comfort in that. Don’t get me wrong—I don’t mean in any way that the losses of so many all around the world bring me comfort. What I meant was, for the first time in a long, long time, I don’t feel quite so alone in my suffering. For the first time in a long, long time, I don’t feel like I’m missing out on anything.
On the other hand, this spring has been particularly rough for me. And yes, I realize that it probably sounds like I say that a lot—but it’s the honest truth. And of all the places to be honest and real, I think my personal blog is the best place to share that. A difficult winter transitioned into a difficult spring. But I am hanging in there! And despite the real struggles, there have still been redeeming elements. Let me explain.
Redeeming Elements
I am beyond grateful for the generous financial support I received that allowed me to do a new and completely different Lyme disease treatment. It was so amazing to be able to try something different that would normally be out of my price range and not have to be more financially burdened. I also felt so cared for and supported from the people who helped me out and I will never forget the generosity I received.
Earlier in the spring I was feeling a bit better for snippet of time and basically went on a painting frenzy and painted nonstop for several days. I made so many fun and inspiring creations and it was really rewarding.
I am also really happy that, in spite of the quarantine limitations, I have been able to continue keeping connected with friends, especially others from my church community, via technology and of course everyone’s favorite, Zoom. In the past when I felt too lousy to be consistent with Bible study groups, I felt more isolated because I couldn’t physically attend, but now everything is remote so even on lousy days I am actually able to stay connected. That’s an unexpected benefit.
Challenges
Yes I started my new treatment, which is awesome, but unfortunately it is going to take a long time for me to see any results. Because my particular infection is so severe and has been in my body for so long, and because I likely have co-infections and residual mold damage, it’s going to take my body a while still to fully see results from the treatment. Not only that, but the process of the treatment, while infinitely less aggressive from past treatments I’ve tried, is rather hard on my body. While the solution I inhale is killing off the Lyme bacteria (spirochetes) all over my body, I will continue to feel symptoms as the bacteria dies off and reveals damage that’s been done from the long-term infection. I also feel even more intense fatigue throughout the process because my body is working so hard to flush out toxins, process the treatment and heal. All that to say, I still have a long road ahead of me.
When I started this treatment I received so much support and encouragement from others who were convinced that this was basically the final treatment for me. Because I know people who have responded really well to it, I got really hopeful and excited. I think I was expecting that I would just start getting better and that in a few months I would really be a lot better. In fact, the first week or so on the treatment was the best week I’d had in months. But then, sure enough, about 3 weeks in I started feeling extremely lousy again and it’s pretty much been that way every day on some level. I think the fact that I had unrealistic expectations and got my hopes up too soon is why this particular experience was so discouraging.
But now I know that the treatment will take considerably longer to work and that many people with longterm infections do see improvements usually around the 6 month or year mark. So I am holding onto hope that I will notice at least some improvements further down the road. Managing my expectations to not expect any instant cures helps me not become so easily discouraged when bad days linger. I don’t think that’s pessimistic but realistic.
That’s all for now
Well there is my relatively short and simple spring update. Since it is almost May, which is Lyme Disease Awareness Month, I have a few Lyme disease and chronic illness-related blog posts to share. I miss blogging and am excited to keep sharing my journey with you all!