When the Storm Starts to Clear
The first half of this year felt like a fight to just exist almost every day. I was in constant survival mode. What does it look like, though, when the storm starts to clear?
It doesn’t necessarily happen all at once. Sometimes, the biggest struggles start to taper off over time, and one day, you look back and realize how well you’re doing. I had a moment like that this week. I was sitting in my rheumatology follow-up, and she ended the appointment with “well, you can follow up as-needed, but you don’t need to schedule a follow-up with me otherwise.” Music to my ears. I realized the only appointments I have left for the rest of the year right now are the regular immunology follow-ups to make sure that all my levels look good and my annual PFT to make sure my lungs are still working optimally. Then I started thinking about how stable my health has been lately compared to the early part of this year.
CSF leak: resolved. Out of control dysautonomia/POTS: back under control. Exercise tolerance: getting better every day and currently at the best it has been since probably early November 2020. Infections: cleared that pesky respiratory infection and hoping to keep it that way. Also learned that we are not experimenting with an immunoglobulin dose reduction again. Heat intolerance: well…can’t win them all, but at least the weather is about to start getting cooler soon! This isn’t all by chance. This is all the result of meticulously following guidance from several specialists for months and having a team of physicians that work so seamlessly with me as things change. It’s the result of lots of small decisions and some big decisions about how I want to live and make the best of the situations I have been given.
I’m not cured. I won’t be. However, I am feeling like I’m in a more manageable place. My thoughts throughout the entire day aren’t focused solely on how to function. I am able to start enjoying some of the things I really love again. I just feel lighter. I feel like the burdens I’m carrying aren’t suffocating me anymore, and I am perfectly content with that.
Sometimes when you’re in the height of the storm, it can be really hard to see the light at the end of the tunnel. It felt like one thing after another for so long, but I’m in a good place right now. There are still some unanswered questions from my test results that I received this summer, and I don’t know whether the physical improvements will last forever. My guess is that someday there will be another storm to weather, and I’m sure I’ll get through that one too with enough time and care. It felt too important not to document this feeling though. The feeling like the storm has passed and I can finally breathe a sigh of relief.
If you’re in the middle of your storm, keep holding on tight. You will get through this. For my future self, I’m leaving this here as a reminder to you too, just in case you need it down the road.
Chronically yours,
Jen
