One of the characteristics of CRPS and some other longstanding brain-driven pain conditions is the occasional personality transplants which, especially combined with memory-holes and perceptual shifts, can really do a number on relationships. This situation is called the Beast. Medically, it’s considered part of the territory.
I’ve been absolutely smug about my aability to stay away from the Beast. Since regular psychotherapy is part of the gold standard of treatment for CRPS, I’ve prioritized psych care — from professionals who have a good understanding of trauma and PTSD, since actual specialists in central pain are so rare, and trauma/PTSD is a good model to start from. That care hasn’t been possible for most of the past 5 months, and I’m taking stock of how much I’ve lost in that time, now that I’m back on the schedule.
I can count on 3 fingers (now 4) the times I’ve been the Beast in ~21 years. (I’m fuzzy on my first ~4 years of illness. It was a blur.) The most recent of those times was due to a neurotoxic exposure. One was when I lived in a mold infestation I hadn’t mitigated yet. One was during a particularly hectic trauma period. The current one was after I decided to make an extended, extravagant physical effort in not-very-safe air. I really thought I could pull it off, and just rest afterwards.
But these are reasons, not excuses. I hurt people who didn’t have it coming at all. I injured relationships I care about deeply and intend to protect. Today’s event cuts particularly deep.
“Why would you do that?” is an unanswerable question. If you don’t have this shit disease, it can’t be explained. All I know is that I felt myself being pulled under, not recognizing fractured memory and wacked perceptions. I grabbed for a rope. Didn’t think what it was attached to, because I thought I was drowning.
Mind you (adds that inveterate shit, Sarcastic Sister), my feelings are such that I’d rather be dead than hurt my loved ones. But this is not the time to say that, because it makes no sense from the outside, in light of what they just experienced from me.
So… diligent psychoemotional tune-ups, reasonable pacing of activity, and a safe environment are not at all optional. That rubric is my best insurance against the Beast. What I know from seeing my long-term survivor cohort is that there’s no guarantee I’ll be able to avoid the Beast forever. So, I’m wrestling with this reality and not really wanting to be here for my life. (“I’d rather be dead than feel this way” was a state my late BiL and I could bond over.) Many of my fellow CRPSers know the feeling, and it eases my soul ever so slightly to know it’s part of this disease experience, and not because I’ve actually become evil.
I’ve done what I can for now. I’m off home for meditation time, if I can, and a familiar show if I can’t. I have to remember how to rest and how to push myself no harder than is good for me. I have to take recuperation very seriously and basically expect nothing from myself for a week. I have to manage this terrible storm of feelings in the absence of a stable central nervous/ endocrine system. I hope to have the chance to rebuild a couple of relationships. We’ll see if that’s do-able. Fun times.
I’m looking for some more positive message to turn towards or even something to lighten this a little, since the point of this blog is “living anyway” in spite of what this craptastic disease does to people. The only thing I’ve got to offer right now is the passage of time and the hope of some recovery… within the context of this horror-show snowballing around me, around us all.
