Hi everyone! I hope you've been holding up as well as possible. Thank you for the birthday wishes and feedback on my last post. This time, I am sending along my overflow reads for Curious About Everything #53, and some photos from my birthday and beyond. It's crazy to think that I had a leak for the entirety of my 40s. I know this kind of arithmetic isn't constructive, but sometimes we just can't help ourselves, you know?
I'm thrilled to report that I was able to walk a whopping 55km in July, which is a record for me during these many years of leaking. Not since I was sealed for those 8 months in 2018 was I able to walk that much! I never know how long the uptime will last, so I try to enjoy every last drop. Though I am still in that liminal space of hoping medicine evolves to help me, sealed or not I am grateful to get this walking / flower / adventure time. It's a cozy life, but it's still living more than I did for the first many years of hell when I could only stand to eat.
During those earlier times, the minute I stood up I would be hit by the feeling of my brain sagging. It's an unmistakable pain that feels, as I said in my talk about why I deferred treatment, like you're being hung by the nape of your neck on a meat hook. This pain and the associated neurological symptoms that affect my vision, my hearing, my spine, all started within seconds. I remember being in my mum's basement and getting up in the morning hoping that day was a better day; I'd get out of bed and walk to the bathroom down the hall and by the time I sat on the toilet, the 'brain sag' was back. It was a deflating, depressing feeling every morning, and a painful one at that.
These days, the pain comes on less quickly. Some days are worse than others, and my body has likely also compensated by producing extra CSF to offset the leak. But there is progress in the healing itself, I think, and I still plan to share all the things I've tried to get there as soon as I can. As I've mentioned many times, supporting my mast cells is one of the main ones. Mast cells live all over the body and brain, but congregate to sites of injury and are in the dura mater, the sheath that surrounds the brain and spinal cord that I have hole(s) in due to my lumbar puncture.
I mention because while my leak re-opened in full in December, the time it took to get back to a better baseline was shorter than prior. I think this is because I moved apartments and got out of the environment (full of VOCs from the garage below me) that was causing constant mast cell degranulation/reactions. In my new unit, save for the occasional "I'm ignoring that this is a no smoking building" problem, I'm much more stable — and have not only seen faster impacts on the leak, but also have been able to add more foods in that I couldn't tolerate prior.
I often use a bucket analogy to talk about MCAS; once the water is full and overflows, you react. Moving apartments lowered the water levels so that I could experiment more on the food front, and my sleep is also better for it. In my last post here I talked about insomnia and depression and inflammation; I can clearly notice that this 'lower water' has also impacted my mood positively.
This is a small picture of what is going on, but one that people often ask about. The bucket infographic above is on my mast cell activation syndrome resources page, but an illustration of how it often works for people with the condition.
Curious About Everything 53: your extra reads
Thanks to you and your support here, I can keep my newsletter free for all!...
