Last night I had a bad night and I want to share with the community my last journal entry because I feel that my feelings at the time needed to be written and acknowledged.
Right now my legs are not working right. It is very hard to lift and make steps. I get so stressed and frustrated on trying to stand that im not sure if stressing out is good for me. Since I have learned that stress exacerbates my brain/body I'm not what to not stress about. The fact that I can't stand or walk or that I work tomorrow. I'm not sure if this will last or that I should think of how I got this way in 1st place.
I can't call my head doctor(psych) how i'm feeling because I have none. I don't have an FND coach which would be soo nice right now. Like a sponsor.
My only stress relief is my wife whose doing her best to help mestay calm. She tells me my legs are fine, my nerves are fine, it's all in my head, my brain's playing tricks on me. It's not letting me use my legs.
She does her best to role model what I should do with my legs on how to stand. I watch very closely hoping to relearn my strength to stand. Even though it's night and I am going to sleep I just hope that tomorrow I regain the use of my legs because my life as I know depends on it.
I am not actively seeing anyone, but the reason not is that I am spending my time on a 40 hour work schedule and the rest at home. Here in TX USA I have to pay a part of my paycheck just to have insurance and then I have to schedule dr appointments in which I would spend 20 to an hour depending on what type of doctor he/she is.
That isn't enough to treat my disorder.
I take multiple pills 2 prescribed and other supplements. CBD oil is legal here in the US and clonazapam which both work but only temporarily, and when they wear off I don't where I'll be so it has to be strategic.
How come your husband hasn't gotten help? History please explain more im interested to know more.
Please don’t believe the FND diagnosis until you have made sure that you have been checked from head to toe! Have you had a Pet Scan, have you had an autoimmune antibodies test from Mayo labs? Your doctor can have blood drawn and send it to Mayo to check for their many antibodies that can be causing your symptoms. Don’t settle for a mystery illness until you are positive that it’s not something else.
Get on the Facebook autoimmune encephalitis page and see if your symptoms match any of those.
Well what seems to work is stay as calm as possible. And continue to get up out of bed and do anything within my power to go through life. I have home duties and work duties so I just contiue to push. I don't have the option of physical therapy to go to and do it for a hour each day. I have to do whats in front of me such as walk around vehicles and squat and push, same thing except real life scenarios.
Since then my walking has improved to a small limp and bent posture. I'm still taking meds of klonopin and antidepressants. Also here in the US we have CBD oil derived from hemp. It works on a small amount. So its basically wake up and force my self to live.
No sit whine, no ask for if I don't need it. No depend her to do what I can't. If I can't do it and my wife sees me struggle then she'll assist but wont do it for me. I went from a walker to a cane, even though the walking is crap it's different then the walker due to the need to stabilize more.
So to give a good answer; It's all about mental and physical and emotional push push push!
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But I would walk 500 miles...And I would walk 500 more
New here and Grateful for the Support
Hi from a guy with FND
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