It has been a very long time since I’ve written a formal update on my health. At the beginning of May it will be four years since I stopped taking antibiotics and entered the recovery phase of my illness, a little over five years since I started working with a specialist who could identify and treat my illness, nine years since I became functionally disabled, and twelve years since I was bit by a tick and contracted anaplasma phagocytophylum. I was able to receive treatment thanks to the generosity of so many people, friends, acquaintances, and strangers, who contributed their money towards my wellbeing.

When I started on the recovery phase I had high hopes of being able to convey inspiring strides in improvement to my health. Instead I found myself on a very long and frustrating road trying to convince my autoimmune ass to stop being stupid and get on with life. I was finally able to get onto Social Security Disability, and afterward found myself terrified that if I ever expressed that I had a good day and managed to do stuff, that my desperately needed aid would be stolen away by someone with authority who would rather believe everyone who needs help is a lazy fraud. I have wrestled with anxiety and depression, and had ongoing problems with digestion, tremors, neuropathy, pain, fatigue, and insomnia. I’ve made great strides forward only to backslide and wonder if that brief up period was as good as it was going to get, if I was always going to be sick, if I was never actually going to find wellness even if my overall quality of life is significantly better than it was before.

I’m still sick. I’m still disabled. On a good day I can manage to do a few things, but on average I still can’t quite keep up with the basics of living in a pleasant environment. I.e., most of the time I’m lucky if I expend the energy on bathing more than once a week, housekeeping is hit or miss (mostly miss in most areas), and I have developed a tendency to hide from adulting that needs to be done regardless of how I feel. The tremors are gone most days, but between the fatigue and depression and other demands on my energy I am not managing to create art consistently, which adds to the depression. I don’t currently have access to the industrial sewing machine, and I’m in such a small space that any sewing or arting efforts require that I fully set up and break down before and after every session, adding to the energy demands for most creative efforts.

On the bright side I have stopped using the cane, and my background pain levels are typically between 2-5, rather than the 5-8 they hung out at before and during antibiotic treatment. I am also managing to create some art, even if it’s not as much as I would like.

I’m frustrated, and I’m tired of people telling me that I need to be kinder to myself when I express my frustration. The most frustrating part is that in most ways I’m actually doing worse than I was a year ago. I’ve been trying to be kind to myself, to not overdo it, and to forgive myself for being a lump when I’m not up to doing more than being a lump. I’ve been trying to do restorative yoga consistently, and for the most part have managed that since last summer. I tried to do regular yoga, but immediately crashed and burned because it was too much exertion. I’m keeping an activity journal to give myself full credit for the things I do manage to do, and it has been helping with the depression. However, overall, those lump days are more frequent than they were a year ago, and the yoga is actually getting harder, not easier. What I am doing is clearly not working.I’m frustrated, and that frustration is valid. I’m tired of people telling me that I need to be kinder to myself when I express my frustration.

Frustration is not the same as giving up. I’m not giving up. I might feel like it for a brief moment of wallowing self-pity now and again, but then the stubbornness kicks in and I’m back to just being frustrated. It’s not a bad thing that I’m frustrated. If I was content with my current situation I’d never get better, I’d never take the time to examine what I’m doing and what I’ve been doing and what might give my recovery a shove in a more positive direction.

So, as best I understand it (which I honestly don’t really), in my case the chronic fatigue is exacerbated by metabolic dysfunctions (aerobic and anaerobic functions don’t work as expected when I exert myself) and inefficient/dysfunctional O2/CO2 exchange when I breath, both of which become more dysfunctional when I exert myself and in the days following exertion. This makes exercising crazy difficult, because even just walking I tend to hit the brick wall and crash out. So, when I have been exercising (the restorative yoga), it hasn’t actually been enough exercise to even maintain muscle mass, let alone increase it. This is even showing up in my most recent bloodwork, where I have quantitative signs of alarmingly low muscle mass (and also explains why the yoga is getting harder, not easier). However, increasing muscle mass is a likely factor in stopping the dysfunctional operation of my body (and hopefully the chronic fatigue).

Put another way, I need to increase muscle mass to be able to get over the chronic fatigue, but I need to get over the chronic fatigue to increase my muscle mass.

Or, what I’m doing isn’t working. Being extra kind to myself isn’t working.

So, the last several months I’ve been contemplating what I should change in an attempt to improve my trajectory, thinking over what I’ve done in the past that seemed to help (but wasn’t sustainable), and what made me crash and burn. I talked it over with my doctor, and we have a coherent plan. I am going to push myself, but in a very controlled and measurable way, by going to the gym.

I got a membership to Planet Fitness, because it’s 24 hours, friendly, and with the Black membership (which still costs less per month than a lot of gyms) I have access to the hydro massagers, which apparently work wonders on my chronic pain (a huge bonus since exertion amps up the pain levels). I’ve only been once so far (I came down with a flu this week, so no gym until I’m over that).

I’m starting each session with 20 minutes of restorative yoga and ending it with 10 minutes, because the restorative yoga was good for me, just not enough on its own. I attempted aerobic exercise via an elliptical machine, which was a laughable failure (seriously – I’m laughing). I was out of breath and felt myself pushing against the brick wall almost immediately, and at a pace where I might, maybe, in my dreams have been able to maintain movement for a few minutes, every couple seconds the machine glibly informed me that it was recognizing me taking a break. After that I hit the weight machines, doing between 10-35 lbs of weight and one rep only, managing to hit most of the available machines. That, I feel, was a success, being sustainable, and if done consistently might be enough for me to start building muscle instead of losing it. The goal is 3x per week, and hopefully I’ll manage that more often than not. The trade-off is that the exertion will eat up a good chunk of my limited energy, but I feel it’s worth it if I can get my body moving in a positive direction.

I probably won’t know for at least a few months if it’s working, but my emotional outlook is better already. I hate it when I’m floundering with no plan for how to move forward. I don’t care if progress is slow, as long as progress is possible, and for the first time in a long time I feel like progress is possible.