I know there is sometimes confusion about what I’m dealing with (it even confuses me), so I wanted to try to convey a more accurate depiction. If today you asked me what was wrong with me, I would say that my immune system is in the midst of a battle against an intelligent, complex, and evasive set of bacteria–as well as viruses. It’s as if my immune system is a small army that is being overwhelmed by enemy forces. It is shooting all over the place trying to contain the enemy but also committing a lot of friendly fire (i.e. over inflammatory responses). So on one hand I have to attack the microbes, à la antibiotics and antimalarials. On the other hand, I have different fingers, so… kidding! On the other hand, I have to train my immune system to shoot more effectively (no more friendly fire). Propping up my immune system will be key to long-term success. Luckily, there are numerous ways to aid my immune system so it can contribute more to winning the war: diet, nutrition, sleep, reducing anxiety/stress, and many more.
Currently, I am still trying to stabilize myself after the setback I had in November of last year, which really sent me for a spin. Since that setback, I have been in this vicious cycle where I would complete a giant task then crash. As soon as I recovered, I would attempt another big task only to end up crashing again. For the last few months, I have been unwilling to accept the idea of starting all over with the little things–I was finally starting to tackle the big things (big things for me)! But those big things are probably not how I am going to achieve sustained progress: it is through routine and trying to do a little bit more every day.
I resist the idea of starting back from the basics–and justifiably so. I’m dying to go out and live life (if that even makes sense)… but I don’t have a choice. I have to bite the bullet here and focus more on consistency and incrementally increasing my daily activities, not on trying to complete those enormous tasks that are currently out of my range. I am being a little bit of a reductionist here as there are various reasons I haven’t progressed physically as of late (including the strength of my antibiotic schedule). But this crash-recovery cycle is certainly a large part of it, and I feel confident I will be able to control it going forward, even if that means less time with other people.
Speaking of control… this disease has been training me to be a controlling person. Not controlling of other people, but of circumstances (one in the same, I guess). I often feel like I need to be in control of all the variables so I can maximize the good things, like visiting friends and family, and minimize the bad, like setbacks. I have such a limited amount of mental and physical energy to work with, so being efficient is a daily, hourly mindset. It is especially difficult when the stakes are so outrageously high. If I put myself in a situation where I am extended too far beyond my capabilities, it could set me back months. So control has been an important utility to me.
Unfortunately, control is a double-edged sword. Needing to be in control also feeds into my anxiety, and often, trying to exert control can cause more stress than if I had opted for a more lacksadaise approach. Although a completely laid-back approach isn’t going to get me to progress either, I need stability. Sort of a catch twenty-two. Ultimately, I need to learn to strike a healthy balance between the two (we all do): being methodical and disciplined while also accepting that there is always going to be some chaos and learning to roll with it.
Lately, I have become borderline cynical as I am not getting the results I want to no matter how hard I try to exert my “control”. It’s a shame my challenges aren’t something I can simply will myself through. There is a bit of surrendering that one has to do, whether it’s surrendering to a higher power or just surrendering to the advice of professionals. You are doing yourself a disservice if you are constantly worrying about things that can be rested on the shoulders of other people/things. Trust–I think that’s what they call it. You have to know when to let go and trust or you’re going to have a bad time. It’s as simple as that.
In conclusion, I would say I am putting in the hard time now to increase my chances of making a full recovery in the long run. I am trying to find a metaphor for this mindset and why I haven’t progressed physically (overall) in the last year. I could tell you about a new homeowner who finds water damage, so the new family can’t move in until the leaks are fixed, wood replaced, mold eradicated, etc.. That is analogous to the work (treatment) that needs to be done before I can “move” back in to my body. But honestly the best analogy for my current treatment is chemotherapy; where you must get worse in order to get better. And I am super hesitant to use that analogy because in no way do I want to equate the two. It’s simply that they are both counterintuitive approaches to achieving health.
The treatment protocol I am on can be very brutal, but I supposedly went through the hardest regimen in the past few months. So it should start getting easier from here on out (famous last words, I know). But seriously, I am optimistic. Sometimes it is hard to distinguish progress until you have a setback or bad day, and you’re like, oh… I forgot about this symptom or how intense/frequent/(insert adjective) it was. So just as this disease crept up on me years ago, it appears to be receding in the same manner. It is not as if I’m not seeing any progress; I am. It’s just not as much as I (or we) had hoped for this far down the line. But it is what it is. Right now, I have to focus on doing my best every day, and I can honestly say I am doing that. And now (drum roll please), the joke and quote:
How big was the man who was exiled from the town?
If you are lonely when you’re alone, then you are in bad company.” Jean-Paul Sartre