I am feel really let down by the medical system. I have been to my course and its just poppy cock. The focus is on your mental health and its just not an issue. They just do not understand this condition enough. I find it so frustrating as did a couple of the others and yes they did admit that they do not fully understand or know enough about the condition but they say they know that looking at stress, thoughts, feelings and symptoms is helpful. They completely miss, ignore how it all started, what the actual physical changes, physiological changes, like my swellings , joint ache etc. grrrr it makes me so mad. I am going to stick at it as I hope the inpatient physio will help me. I find the whole thing so patronising and I haven,t learnt anything I don't already know. I am starting NLD this week. Lets hope and see if this makes any difference to my immune system.
There's so much more to this conditio... - Functional Neurol...
There's so much more to this condition than stress. I hope they understand more in my life time.
answers are coming!!
I got angry last time I saw the shrink. She talked of possibility I would get full function back. I said I did not find this helpful when we had not even acheived first goal of slowing the rate of progession down. (Though must admit, pregabalin is helping with pain). Having something they don't really understand is hard. I keep reminding myself of how my sister-in-law was treated until they finally diagnosed MS. Puts a bit of 'this is reality, you have to live in it but don't accept it' into focus. Trouble is, if I ask myself what I want, I can't answer that. I just don't want living with a steadly decline to mean FND becomes who I am. Hav e lost a lot, andin the process gained other things that were only possible cause I was slowed down.
I'm doing the counselling. Heading towards the end. So, for me, that hasn't had any physical impact. Last week tests by chest clinic found my dificulty in breathing was neurological. Right now have lost my positive centre, fortunately at least this is a temporary condition.