I have run out of hope
M, 40y/o. I live with my Mum; we both have complex health issues that are NOT being adequately managed by our doctors.
*I had to pare this post down to 2500 characters from over 7000. A LOT of detail has been lost*
I am suffering from a condition that appears likely to be Narcolepsy type II. I also have several other physical and mental health problems.
My main symptom is a permanently reduced level of wakefulness/alertness. This has gradually worsened over 27 years. Until two years ago it was relatively manageable.
Last year a Sleep Specialist suddenly stopped the only medication that had been helping me a little. She COULD have done this in a kind and understanding way but she deliberately made things as traumatic as possible.
I had already been suffering from Demoralisation Disorder due to previous stressful incidents with doctors; the incident last year has caused full-on PTSD. I CONSTANTLY relive that situation, dozens and dozens of times a day. And it gets stronger and stronger...
I am supposed to be caring for my Mum, especially as her health is deteriorating also, but she is looking after me more and more and it is draining the little health and strength she had left. I feel so TERRIBLE. Before Dad passed away, he made me promise I'd look after Mum. That was the only thing he asked of me. And I can no longer do it. I am a failure. An absolute failure.
The final straw came last week when I had an appointment with another Sleep Specialist to get the results of my recent Sleep Study. He gaslighted me and said there's nothing wrong.
I give up. Nobody listens and nobody cares. Nothing works. I can't get any answers, I can't get any help.
I have tried nearly twenty antidepressants with ABSOLUTELY no benefit from any of them - probably because my problems are neurological and psychological, not psychiatric.
I've been feeling suicidal and don't feel very supported by my healthcare professionals.
I cannot tell my Mum how I feel as she is very religious and I know she would not react well.
My current state of mind is ABSOLUTELY hopeless. All I want is to feel OK again. But every day things get worse... I have lost everything. I used to be smart. I used to be good at solving problems. But not any more. My brain is dying more and more each day.
I do not understand why I can not get help. I have tried SO HARD, for SO LONG... and all for nothing. I am done.
It's been a while since I last posted. A lot has happened but not a lot has changed. I have confirmed that my condition is indeed Narcolepsy Type 2. My mental health isn't great, but at least now I know why, and also know why the treatments I've tried have been unsuccessful: the depression, cognitive issues and all other problems are due to a lack of deep sleep. A TOTAL lack of deep sleep. This has made things a lot clearer and easier to understand, but no easier to deal with as I still haven't found adequate treatment. I'm getting more and more exhausted every day. Sorry I haven't replied properly, I'll do it later if I have the brainpower.