I am coming up on two years since my last health update on this blog, all of which can be found under the health tag. For those of you who are relatively new to this blog, you may or may not be aware of my ongoing struggles with chronic illness and disability following a tick bite that infected me with anaplasma phagocytophilum. If you are curious, you will find some links to exactly what that is on this blog post from 2013 when I was first diagnosed. One of the more amusing aspects of the precise disease I contracted is that it is all but unknown to human doctors, but most vets are familiar with it since it is sometimes contracted by dogs that go hiking frequently. That ignorance contributed to the six years of health decline before I was finally able to get a diagnosis. The other main contributor was lack of reliable access to any health care, let alone quality health care, because the United States literally hates poor people to death.

The reason I try to post about my health periodically is that in order to receive treatment, Lucy Corsetry ran a crowdfund campaign for me back in 2013. That campaign, and the generosity of so many people, most of whom had never met me, was directly responsible for my ability to receive health care, undergo long-term antibiotics, and eventually clear the infection. By that time, however, I had been sick for so long that my body was in an autoimmune state I am still fighting with.

The reason my health updates do not happen more frequently is because I do not have anything wonderful or groundbreaking to report. I have my ups and downs, but overall, my symptoms and wellbeing have stayed roughly the same for about four years. My doctor and I have been adjusting my supplements and medications in response to my bloodwork, with some success. That means most of my bloodwork is better, and yet I have seen little tangible impact on how I feel day to day. I am certain that situation is at least in part due to the fact that stress is the single largest symptom trigger I have, and I would be lying if I said my life was not full of stress, no matter how much stress I do successfully avoid.

The exercising endeavors I wrote about two years ago fell flat. The gym was too busy, and my needs too weird for it to work consistently. If the gym was mostly empty I had no problems, but that was rarely the case. The last time I went, I spent 10-20 minutes waiting for each machine, just to do a single lightweight rep in about 1-2 minutes and have to wait interminably for another machine. I barely had the physical stamina to be there at all, let alone spend extended periods of time standing or sitting and waiting, and there was nowhere to sit other than a floor people had been walking on and sweating on all day. All the waiting simultaneously exhausted me even more and defeated the purpose of the endeavor. The gym was also a significant drive from my home (there was only one gym closer, and it was a nightmare), adding to the effort involved in going. After about a month and a half I gave up on it, and also lost the motivation to continue doing the yoga.

I am one of those people who really does not enjoy yoga, and it was not efficient for me as a way to exercise. If the exercises were strenuous enough to encourage muscle building, I did not have the stamina for them. If they were gentle enough I could do them, they did not accomplish what I needed them to. Last spring I finally decided to try simplified Tai Chi aimed at seniors. That was a huge help, and I did notice that I was stronger and had more stamina, but about three months into that California lit on fire, and didn’t stop burning for more than two months. The change in air quality meant I could not do the exercises, despite having air filters running in my home. After the habit was broken, I had significant trouble picking it up again, and the stresses about the election and the looming specter of white supremacy and fascism in the USA made my symptoms so bad that it was even harder to find the motivation. I’m back to floundering about trying to motivate myself to exercise 3-5 times a week, even if it is only for 15 minutes each time, because no matter how much of a difference I know it will make, it is hard to overcome the inertia of feeling so terrible. Plus, if I am having a particularly bad day (which I have had a lot of the past couple months), even 15 minutes is too much, and it hurt me more than it helps.

I do not expect this to be a long-term problem, but the past month I have had sleep disturbance worse than it has been since I started receiving treatment from a competent doctor in 2013. I could not tell you how many nights I have been awake until 4-7am, no matter what I do, and then groggy during daylight. I am not getting enough sleep overall, and even when I do get enough hours of sleep, the rest of my day is still miserable. I’m frankly writing this post well after midnight, because during the day I was too rummy from the sleep disturbance to put two sentences together coherently. I hope I can manage to get to sleep closer to 4am than 7am, but right now there is no telling.

To my great frustration, I have even been stressed enough in recent months that I have seen a return of daily tremors, and also of intermittent pseudo-seizures. Before this past November, I had not experienced a pseudo-seizure in well over a year. In the weeks since, I have probably had a dozen of them. I want to return to creating art, and finally have a setup where I can comfortably create digital art, a medium that does not require the setup and breakdown of traditional art, but the tremors are making it painfully difficult to learn Krita, let alone create anything original. Still, that is something that I am plugging away at, and I hope to have some stuff worth showing you in the next few months, especially since I am hopeful that political stressors will ease a bit now that the orange menace is out of the White House. If my stress levels reduce, I should see the tremors reduce and hopefully abate like they had previously.

Overall, the impact of my chronic pain and chronic fatigue are very similar to what they were two years ago. I’ve had more bad days the last couple months than normal, but I do expect my symptoms to swing back the other way given enough time. I do not believe this is my new normal level, even if I am coming to accept the fact that I may never get over being autoimmune and disabled. Back in 2014 I had expected to eventually be able to return to a normal level of activity very similar to how I was before being bit by a tick, or even the first four years of my illness when I could still maintain a manual labor day job and my own art and sewing business plus an active social life. It simply did not work out that way, and I do not have the financial resources for advanced treatments like laser therapy, hydrotherapy, and acupuncture, all of which make a huge difference on my symptoms, but are expensive and need to be done very regularly to truly be of help. It is one of those situations where being poor means I don’t have access to things that could make a very real difference on how I felt and my ability to do things on a more normal level and pace.

I have also been struggling with my medically prescribed diet. Given my lack of progress, I talked to my doctor last spring about the diet and found out I had never been properly adhering to the diet. There were several food items I was using for variety which I did not realize should have been excluded. In an effort to try and improve my health, I have been adhering to the diet properly for the most part, but it is incredibly frustrating for me. I love food, especially in its variety, but I do not enjoy the process of cooking. Since my diet is very much like a severe diabetic diet with a lot of additional restrictions, there are common ingredients in the vast majority of pre-packaged or restaurant foods which I am supposed to avoid. That means, if I am lucky, a restaurant will have one or two items I can eat, and many restaurants have none. Boxed meals and easy-prep stuff is right out, because all of it contains ingredients that I can’t have. In order to avoid things like gluten, processed carbs, sugar, soy oil, canola oil, and a few other things, frozen food which are diet-friendly tends to be in the “gourmet” category, and prohibitively expensive.

That means I am having to spend some of what little energy I have cooking, which is an activity I do not really enjoy. I do enjoy baking, but the vast majority of baking ingredients are not allowed on my diet, and I was never the sort of person who wanted sweets and breads for their main meals anyway. My dislike of cooking and reluctance to spend my energy on that activity means that I end up cooking extremely boring, bland, throw-on and done type meals involving very little food prep and little to no checking for recipes. There is no love in my food, so it is dull and repetitive and unenjoyable, but thinking about putting in a greater level of effort makes me die a little inside, even if I would enjoy the output more.

The largest area of progress I have made is returning to writing, but not in the way I had done writing before. I have been blogging about witchcraft and paganism over at Patheos on The Balancing Path, which has brought a lot of new people to my website. I have also been working on a book tentatively titled Toxic Blood, which is about my experiences with abusive and manipulative family and how I eventually cut them out of my life. I have talked about it a fair amount on social media, and I will likely be posting more about it here starting in a few months. At this point it is nearly finished, and I am preparing to start the process of submitting the manuscript to book agents.

Writing has been fantastic for me. It is providing me an outlet for creation, even if I am not inclined to creative writing. It also gives me an outlet for my stresses and frustrations, and hopefully helps other people with their own struggles along the way. I no longer feel like a perpetual lump, and the amount of personal growth I have been experiencing is phenomenal. I expect to continue writing for a great many years to come, regardless of the ups and downs of my symptoms. It is something that I can still do mostly independently of those fluctuations, and I love what it is bringing into my life.

As for sewing, I do not see myself doing much if any of that in the foreseeable future. My current home is too small to leave any sewing supplies set up, even overnight, and the level of effort involved is tremendous. When I do have days where I am feeling well enough I could go to the trouble, I instead put my energy into neglected housecleaning, because that is simply more important. Embroidery is not out of the question, but I have felt uninspired the last couple years, and I am not sure when that will change.

I do want to get back to creating more traditional forms of art, though. I desperately miss drawing and painting, I have unfinished projects that still nag at me in the back of my head, and I have new projects percolating. Hopefully digital art will make that easier for me to do consistently, and if I am doing that consistently, I know that will help me to be motivated for the setup and breakdown of traditional media now and again. Right now it is hard to put in that effort if I do not even know if my hands and my head will cooperate and let me create something.

I do have a lot of frustrations about the state of my health, enough that I don’t want to whine about them constantly, especially since they have long since become business as usual. At the same time, I also have some wonderful things going on in my life, and I have been able to find new outlets that let me do things that I value. I cannot promise any sort of pace or deadlines or ultimate outcomes, but I am hopeful for publishing books, and making a return to creating traditional types of art, and hopefully some new tutorials and videos along the way. However, like so much else in my life, I must take it one day at a time, and only time will tell exactly how things pan out long-term.