Boy does this meme relate to a lot of people. I am sharing it because it relates to me too. For a long-time I thought I was presenting a normal human and going through all of my texts, emails and loads of papers over the last 3-4 years I see the progressively declining health, both mental and physical. It is a lot to process.
I have become more of an introvert and have been ghosting people who mean a lot to me because I am not always sure how I will be and for how long. I will admit I am struggling and after seeing how bad it has been I am trying to not only process all of that, I am also trying to work on my physical and mental health. When I make a mistake and am an emotional hot mess, I see this now and am deeply embarrassed. I cannot bear to hurt people and it reinforces my desire to be alone.
It took about 6-weeks of doxycycline and hydroxychloroquine to see the first lifting of symptoms. When you improve, you have hope and being bullheaded, I try harder and more. The problem is that it makes me worse. There is no pattern and for someone obsessed with pattern and pushing myself mentally and physically this has been absolutely brutal. Add trauma responses to what Q-fever did with the added bonus of the fall in October I am surprised I am functional at all).
While I can be articulate, back of the house I have to reread what I wrote and take notes on verbal communications. To use a food safety saying, “If it isn’t written down, it did not happen.” I can go for a 2-3km hike and comment on plants and wildlife, but I take a lot of photos to remember what we saw and sometimes it takes 1-2 hours for me to have blurred vision, cannot stand when my eyes are closed, tinnitus, and overwhelming fatigue for a 20-minutes to 2-days. This varies and I can be fine or there is another mix of symptoms. I cannot predict anything.
I have had improvements monthly. Physical therapist called them benchmarks. I can turn the light off in my bedroom at night and not immediately lose my ability to stand. I can do my vestibular exercises and when I close my eyes, not fall over. I may just have blurred vision, but I am not a shaking mess when I leave.
The things that have helped are the medicines I am on and walking on hiking trails and logging roads alone doing my exercises. It is quiet, kind of dark because tree canopy, I can focus on bird sounds when my mind races and it calms me. The sound of the water (especially when rocky shore or a steam/brook going over stones) helps me focus on something other than my body or the racing thoughts.
I am starting to reach out to people. I am not doing it well, but I am learning and trying to be better about communicating where I am. I am also triggered a lot because I am physically overreacting to things – comments, a photo I just saw, making a mistake because of a physical or brain misfunction, an intense conversation, someone asking me to hold their emotions during a hard thing like I used to gladly, a demand for something out of my control, or grief.
One step at a time. I will get there.