Hey, a new site. Where is everybody . HELLO HEllo hello ECHO ECho echo.
Testing testing: Hey, a new site. Where is... - Dystonia Society
Testing testing
Stop shouting we are all snoring our heads off :-):-)
I appreciate the invitation to this new forum but im not sure i belong here.....no one knows whats wrong with me or what to expect from me!
There seem to be 2 schools of thought on whats happening to me: Im missing half a cerubellum most likely from traumatic birth 11 weeks prem. My brain structure was discovered 15 years ago after breaking a bone in my foot and within a year becoming completely unfunctional due to dizziness disorientation unsteadiness severe nausea and headaches. I always had dizzy steadiness coordination vision shortness of breath problems car sickness headaches late milestones etc but not knowing what was wrong i managed to lead an almost normal life!
This is were the theories split: my physiotherapist is almost certain that my fifth metatarsal break on my weaker right side15 years ago set my balance system off and i steadilly worsened. As the years went by my arch began to fall steadilly (because of compensating the way i walked because of the broken foot) now it has fallen as far as possible is extrememly painful and swollen! I am trying oryhotics to correct my foot position help me walk again but the adjustments are setting off my balance system again. My vastibular system is also compromized as is my nausea and stomach. Not to mention the complication of uncleared sinus trouble.....that knocks me further on this unsteady boat called life! She is convinced that with the right dr and nerophysios i can get back to my functioning before the break.
Second theory is that due to my severe sextual emotional and physical abuse from my parents my body was in a constant state of hypervigelence and fear that i develpoed all these other health issues. Which only escallated with my broken foot and more recently with ptsd symptoms taking over my life!(a passively abusive husband-and sometimes not so passively- to make life even more challenging!!!) So now my central nervous system is contonously upregulated and with emotional and physical therapy i can learn to down regulate it! By doing so i can get my life back.
Thats it in a nut shell-big fat nut☺
So were do i belong and who and wear can i get help?????
Wow. That is a lot to digest. I think some time will be needed to process this. I am new to this site so I don't know if this is the right site or not. I wish there were more in this group so there was more experience to draw from.
![positiveandcalm profile image](https://images.hu-production.be/avatars/1a8b7f550934f0d81cfc13794cf0e44b_small@2x_100x100.jpg)
Thanx for your reply and honesty sirsheakes.
I wish i could copy and paste this to were it belongs-anyone out there to help?
Hi,
I would say you belong where ever you can tap into the support you're looking for!
I am no expert on anything medical but I will share some of the things that have helped my with my medical conditions.
I find mindfulness meditation workshops helpful for stilling my mind and just being with my body and not fighting it and getting frustrated with it all the time.
I find gentle yoga calms my body and mind and helps with pain management (as does the mindfulness)
I find sitting in the garden and being in nature soothing and generally good for my overall health.
I find attending the odd laughter workshop lightens things up for me and try to have at least one bout of laughter a day
Drinking loads of water helps and eating reasonably fresh and clean helps
All the best
Ali
Hi positive and calm you have a many things to cope with its difficult to help, every morning when I get up I sit in my garden with a cuppa it seems to set the day right, I also practice tai chi when I feel up to it. I had a condition called menieres which seems to have burnt itself out so I can know how you feel with dizziness and nausea, it's horrendous.. you ask were you belong anywhere were you can get some support and you are very welcome gentle hugs on their way