balanceissues

I am having trouble accepting that how I am now is “me” and the old me is a memory. I miss her. I am sad a lot. I get mad at myself. I miss driving. I miss being good at things. How do I embrace this new, and changing for the “worse”, me. My balance, eyesight, digestive system, muscles and hearing are slowly failing. Pain is just life. Sometimes I walk, sometimes I need a wheelchair or walker or cane…I feel like a fake because I’m so different at times. I have some great doctors, and they really are trying but want me to fit into a space they know. I don’t. It’s hard to get anyone to put all the pieces together because I have so many different body parts affected and specialists don’t usually talk to each other, even if they say they do.
I can remember “wishing” my life would just slow down because I was so very busy even though I loved being respected and needed.
Hummmmmm…I got my wish. I don’t make wishes anymore. #ChronicPain #Depression #MuscleDysfunction #balanceissues #WheelchairUsers #Cane

I had such a good morning, went to bio rehab ready to work. We did balance today, not my easiest. It's hard when you realise that you cannot feel any sensory input from you leg. It frustrating when something so simple seems so incredibly difficult to do because your leg can't feel or sense how. It's mentally exhausting having to think a limb to move in a way you know it can, because there is no problem with motor function. About an hour after bio my whole spine from cervical to lumbar and inbetween has flared into Neural burning, pain and stiffness. It just so frustrating to want to work hard to have a better future and to enhance yourself in order for you not to get worse and somehow to ge punished by your own body for trying to help it. I know tomorrow will be better and I know I will get up and go on and try again. But right now it sucks! To anyone else whose trying and feeling like they are failing, I'm thinking of you and sending hugs! It makes me think of Nightbirde song It's OK. Right now I'm just a little lost and that's ok. #Pain #Disappointed #frustrated #nervepain #peripheralsensoryneuropathy #discherniations #balanceissues #icandothis #healingjourney

They are calling it vertigo. Frustrating but thankfully room not spinning! Couldnt find this subject on this website. Not even vertigo! Any links?
#balanceissues

#POTS #balanceissues
#EhlersDanlosSyndrome