End of My Rope

[alaslizards]

Feeling invalidated, alone, sad, and so drained. Emotionally, mentally, physically- I just feel so fed up.

I have an autoimmune disorder and mental illness. Specialists understand my autoimmune disorder, but I haven't seen one in years. Every doctor I've seen since then is pretty much doing a 'guess and check' with my treatment.

Besides that, it seems like doctors and therapists and family- everyone I try to get help from or even just talk to like a person to person conversation just slaps a "oh it's hormonal", "oh, it's your immune system", "oh, you're 'just depressed' ". As if that is helpful or comforting.

Now it's "oh that's just your FND". Like, cool, thanks.

I am grasping at straws. One day I am at my baseline, then the next day I can't walk and I can't sleep because I'm in pain. Can't brush my teeth, shower, cook, clean, for weeks, and then after a few days I'm able to. It's unpredictable. It's frustrating. My home is in disarray.

Had a good sob about it all earlier.

I just don't even know what steps to take.

[Willothewisp81]

I'm so sorry you are feeling so isolated and having to deal with this on your own. I was feeling very similar before the pandemic started and I got to a very bad place. I don't know if it is useful but the thing that really helped me is being referred to a Neuropsycologist. Having a proper assessment and suddenly being able to see that none of what has happened to me is my fault and that the reality is that very few people really understand what it is like to live with a disorder that can randomly derail your life at the drop of a hat with no warning has really helped me to come to terms with living with it. I wish I had more advice to offer but please know you are not alone. Take care of yourself.

[alaslizards in reply to Willothewisp81]

Thank you for sharing your experience. It is nice to not feel so alone in this.

[MONIREN]

FND is such a difficult one, changes in an instant, for no apparent reason. I did get disappointed by others, but remain focused, they are not living through it 24/7. It's hard when 'friends ' make comments, but it's harder when they don't. You have to be strong for yourself, you don't need to fit into anyone's expectations. With FND you don't know what is happening. I suppose one day they will figure it out. Until then, stay true to yourself. Take care.