So sick of being sick

[Underthesea65]

I just can't cope anymore. I'm in agony 24/7. I can't sleep and when I do sleep I have awful nightmares due to PTSD. I just want to fall asleep and not wake up. I'm young, thirties. This is no life. I can't even brush my own hair. Doctors don't want to know as all my problems are so 'exotic' as they put it and they don't know what to do to help me. Sorry I just needed a rant, don't even know why I'm posting to be honest

What are your symptoms?

I have a rare genetic disease. So little is known about it in this country, so all they are doing is treating the symptoms. Pain killers and blood transfusions every 3 months

What's the disease op?

ATTR Amyloidosis

You are posting to vent about your perfectly valid feelings. I'm sorry you have this condition, it must be very hard to cope with.
Have you posted about it before? I remember looking up the disease a few months ago.
Do you have some days that are better than others?
Do you have support in real life? Sending love and hopes for your strength.