Posted 8/25/2020 12:33 AM (GMT 0)
I'm so sorry to hear this, Tabular. Is there anything supportive about where you are? Does anyone feel like an ally? Any doctors or therapists who are more open to integrative approaches more generally, even if they don't know about tick-borne infections?
With the COVID "long-haulers" getting more press, I'm wondering if chronic immune and neurological conditions (like chronic Lyme and chronic fatigue syndrome) will be taken more seriously. This is my hope. I mention this because maybe describing your illness without the word "Lyme" might be helpful, but perhaps you have tried that already.
I have PTSD from my illness, too, although it sounds like you were in a somewhat more dire place than I was. It compounded PTSD from lots of other life trauma. Things can feel very heavy sometimes, and I understand wanting to escape and have it all end. For what it's worth, I'm really glad that you're still here, and I'm glad that you reached out. I know how deeply scary and invalidating it is to be in a setting where no one believes you about your own condition, and I know how hard it is to have to be resilient over and over again with no road map to improvement. But I know it's possible to have a good life even with this dastardly disease as part of it, eventually.
If you want to talk about it, then I'd be curious to hear what all the dozens of infections were and what diagnosis the hospice folks thought you had. How did you achieve a reduction in symptoms recently? (You said that you are facing intolerable symptoms again, so I assume symptoms had abated somewhat for a while.)
Are the psych folks at least helping to stabilize some symptoms? I know some Lyme folks who have been helped by benzodiazepines giving their nervous systems a break, for example.
Sending you healing, groovy, resilient vibes!