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- Опубліковано 21 лип 2024
- so this weekend I've had some visitors and I've left the ward and my room. The over stimulation is just crazy. the noises, the voices, movement makes me feel very un well and insecure and pretty vulnerable to more seizures.
The not knowing what I'll experience when I face the real world scares me.
I was sat in Costa and I could have a conversation with my family for half an hour and that was it. walking up the stairs and down the corridors was overwhelming.
What the heck am I going to do when I'm discharged.
#fnd #fndawareness #migraines #seizures #diagnosis #hospitaladmission #weirdfndstmptoms #symptoms
Thank you for these videos. I have been dealing with “FND” for 7 months. I just turned 23 years old. From California. Had to stop university, move back home. It’s been hell, was suicidal for a while, learning to live with it. Sometimes I have symptom flare ups and I go into overload of anxiety scared that I’m gonna have to be like this forever. My mood has been up and down. I haven’t had any mobile issues, or seizures in a while. There was several times where I had like full on muscle stiffness and I couldn’t move and my whole body was contracted involuntarily. I have been able to run, do all sorts of things in terms of physical activity. But- my sensory and vision issues is over the top. It feels like I’m not wearing my own skin, like I’m in a virtual reality. Like there is a latency in my muscle mind /body connection. It’s a horrible feeling. I just feel all around, dull. My mind is racing 24/7 but my body is not reacting to my thoughts. It’s a very isolating and frustrating experience. My vision lag is for sure the worst of my symptoms. But your videos are very helpful. Thank you so much. Hopefully I can talk to you one day
Thanks for your coment. Some of the symptoms you have explained so well fit with me as well. Some days my body doesn't feel like it's cooperating with my body very well at all. Dissociation is a common symptom with FND it seems. It's such a shame it's so misunderstood by the professionals. I hope you're coping well as possible?.
Thank you for the v ideo. I have spiritual healing which is profoundly healing. It is not religious, just spiritual. Let me know if you would like to have more info. I had a session with a therapist who does the trembling therapy. Animals release stress by trembling when they are frightened but we just push through . But the body holds onto the emotion. The trembling releases the fear. It was very helpful and I felt energised by the end. I have many of your symptoms including the UTIs which are debilitating. Since my brain has been changing I have begun to paint which is great fun for an hour or so each day. My day is over by 1pm as I am too tired. But this time has brought such great learning for me - I am kinder, I don't judge people so much, I am calmer. I would never have developed these traits if i had not had FND and been so disabled. I can say that life is good. I hope that you can find your path in this new forest. Best wishes to you . Janine
Hi Janine I was wondering what trembling therapy looks like? I can so relate to ending my day at around 2pm and all I can do is sleep. For years I always have had a couple of art projects going at one time. Loved that!!!
Now I can barely do anything for an hour, without napping for 3 hours. I really appreciate what you shared about your journey. There is definitely comfort in not feeling alone.
I think trembling therapy is called trauma release exercise by Dr Berceli. He has made youtube videos. The trembling release is like an FND seizure.
Chris I’m sorry for the struggles your body is going through, I’m sure you have moments where you feel disheartened with FND. My heart does go out to you. I’m glad that you are sharing your journey that’s important. I hope the coming week will be better for you.
I can relate to having a slow brain day, where it is a struggle to even think of something to talk about when I am in the midst of people. I love them I love listening to them, but then something happens and I feel like a bug on the wall, like I’m invisible. . If I try to talk, then my conversation gets stuck and I stutter and then I feel more nervous so I back off. I do not have seizures thankfully but I do have times where I get so lost in space, also these tiny seconds where my brain glitches and I feel very weak. On Friday I had a glitch second and I fell on pavement when I was out and about, and it was frightening. I’d prefer to have glitch seconds at home for sure. When you mentioned you struggled with too much stimulation with a lot of conversation going on around you. I agree with you on that 100% also I have difficulty with certain voices even in watching something on UA-cam and hearing certain tones in people instantly frazzles my nerves and I either have to leave the room or turn off that channel. Things have to feel absolutely quiet in order to cope. I feel like I live in a void. My eyesight and my hearing are extra sensitive since having FND. I tried to work on creative outlets but I can’t do it for long before I feel overwhelmed. It is just such a crazy thing some days I don’t have tremors and shakes badly and I think oh they misdiagnosed me, but then…..it the symptoms come back.
The exhaustion and sleeping too much is such a struggle. Chris my FND started the 3rd Friday of Radiation therapy I wonder if you started your symptoms with an event?
Thanks so much for your comment. So sorry you've been going through lots of symptoms too. Anything that affects your bodys function daily. It's pretty tough to deal with when it's chronic and seems to be non stop.
I really hope you get a break soon as well.
I get sensory overload when I’m socialising or out and about. So it’s small controlled doses and pacing. I have “safe zones” outdoors (nature areas) and I can calm my body if I need to with mindfulness and meditation 🥰
Hope your feeling better soon dude.
Cheers Alex. Means a lot. Been a tough couple of years.