This blog entry is an incredibly overdue update on my health situation. It has been just slightly over one year since I finished an eight month run of antibiotics for anaplasma phagocytophilum. During this time I kept putting off writing an update with the intention of creating a video update, but I’m not very comfortable with video so that has never happened.
First off, and most importantly, my quality of life is leaps and bounds better than it was this time last year. As soon as the antibiotics were completely out of my system I was immediately feeling better in very real ways that make my days far less miserable than they used to be. These weren’t the sorts of changes that would allow me to operate in a normal, healthy, manner, but instead meant that I didn’t spend every waking moment feeling like I had been beaten with the uber-sick-stick. I still have ups and downs, like at the end of March and beginning of April went through a couple weeks where I was once again feeling so miserable that I could barely manage to take care of myself, but those periods are becoming less frequent and less severe over time. Most days I can say that my overall sense of wellness is pretty decent, and some days I can genuinely say that I feel pretty good.
For those of you who follow my blog, you’ve doubtless noticed that I have been able to be more productive again, posting embroidery and sewing projects mostly. It’s felt fantastic to be able to work on projects more often! It’s still nowhere near the artistic productivity level I had when I was in the early stages of my illness and working full time, but I am making progress. It’s just a very long process, one that is likely to not see an end for at least a couple more years, if not a few more years.
I’m still not able to walk very far or exercise (no yoga routine yet). I still use my cane all the time, and the walker when I go out to events. I’ve still had trouble with seizures, although those seem to be reducing over time. On a related note I’ve still had trouble with tremors, which still makes it difficult or impossible to work on fine art paintings and drawings most of the time. Naps are no longer a daily requirement, and most of the time I’m sleeping a fairly normal 9-10 hours each day, unless I push myself. It is a fantastic thing to be capable of pushing myself to get things done, like a large dragon cake build I did last week for the Barony of Starkhafn Anniversary (SCA), but I still don’t recover from pushing myself like a normal person would. I’ve been sleeping a minimum of 12 hours every day since (it’s been almost a week), and on Monday in particular I was awake for a grand total of seven hours. It’s not that I want to sleep that much (nothing gets done when you’re sleeping), but I really don’t have a choice in the matter when my body shuts down.
I still have problems with shortness of breath, especially in the presence of lung irritants like cigarettes or e-cigs (obnoxiously difficult things to avoid if I go anywhere in Las Vegas), or if I try to walk more than about 30 yards, and I still can’t tolerate caffeine. I tried the caffeine because I wanted to return to drinking my green tea, but I found that it exacerbated my problems with fatigue, which is still the symptom that is the most debilitating for me.
On the bright side, I am feeling well enough that I have started writing again, and have been up to maintaining this blog more consistently. I have been compiling information for projects and workshops, and hope to have more info on those up on this site in the near future. I’m working on hand sewing and embroidery tutorials, and a corset pattern drafting tutorial. I have materials waiting on making a couple corsets again, which I very much want to do in the next couple months.
Despite my best wishes, I am still nowhere near capable of working a normal job or re-opening my business. Both of those things will happen, but not yet. On a good day, sure, I could handle either. On a bad day I still can’t manage much more than feeding myself. On an average day I wear out too quickly to be genuinely productive or reliable, and if I continue working past the point of fatigue I am guaranteeing myself a run of bad days that could last anywhere from five days to three weeks.
Basically, I am feeling well enough to have a taste for what I used to be capable of doing. I do my very best to keep this in a positive light and be happy for what I am able to do, but it also gets frustrating because I want to be doing so much more!
Time, my friends. All I need is patience and more time. I’ll get there.