TW: Mental health, abuse
When I first became of aware of lupus as a possible explanation for my runaway symptoms almost a decade ago, a lupus patient told me how she had been diagnosed: after years of lying in a near catatonic state in a mental hospital in the UK. She had been there for years. When a visiting US physician came to check on some of the cases, he made an examination, turned to the shocked team and said 'This woman isn't mentally ill, she has lupus. Treat her lupus, and do it now.' Within a month, she was lucid, within two she was walking and was released. At the time, my thoughts were running rampant and I was going through what I had always been told was a 'psychotic episide'.
'No', she told me quietly and carefully. 'I think you have lupus, or some form of inflammation. You're having brain involvement. You'll be ok.'
It was valuable advice, although it took years before I could get anyone to listen and look beyond the false mental illness diagnosis slapped on me in my teens. But, got there in the end.
I maybe have brain involvement once every couple of years now, even with medication. An infection, stress, a lot of things can trigger it. I've had a really nasty patch inside my head for the past week or so which came to a head last night as I was triggered by something; something trivial and rather stupid in retrospect, but it still made me burst into tears and go nearly into a disassociative state in the Dutchman's bemused, frightened presence. No fun :/ He hasn't got an abusive bone in his body, but a couple of events was enough to trigger my PTSD of past abuse and he got the fallout. Meh.
Thankfully, I can sort of see the signs now, and know what to look out for; I still get this kind of thing, even on medication to control my RA, mental health support in the UK is laughable and by the time I went through the rigamarole and waiting lists, the inflammation will be over. I have to just bide my time, be aware of my triggers, communicate what is going on with Dutchman and pray to my various deities whatever inflammation is going on chills out soon. I'll drag myself into the GP and try at the very least to get a blood test so I can track the recent inflammation level (if such it is) and then maybe I can get my new GP to give me a heads up if my inflammation is more than usual.
I know it's a bit of a scary topic, but has anyone else experienced brain involvement? What are you coping mechanisms? How do you get a handle on it?
I wish you peace and clarity.