How much do you push your body when in an effort to fight for mobility you can’t control the nerve pain or the muscle spacticity and spasms?
I’m living with chronic intense spine pain with nerve damage and muscle atrophy in my lower body. Just a few weeks ago I was in a wheelchair for eleven days straight and could not walk at all. I haven’t been able to do anything besides the bare basics of caring for myself and my pup. Yes, the bare basics. I’m not in a wheelchair right this minute but I cannot walk without my rollator or walker with my attached cane. It’s been that way for a long time now, years.
Anyway, I’m trying to walk (via walker) and track my steps, push myself a little more each day.
The pain, burning and numbness take over my body and I have to stop repeatedly to bend my spine forward and relieve the pain and pressure, ease the burning. It’s horrible and the pain sucks but still, I want my life back and I’m not going down without a whole lot more fighting (again). Yes, I’ve been living with chronic pain my entire adult life, so it’s been an ongoing battle for years.
The problem I’m having right now and daily is: when I’m pushing for mobility and trying to save my lower body (mid spine to feet) from being permanently paralyzed I’m fighting nerve damage that only relieves with ice for hours (mid to low spine and bum and hips) but muscle spasms that only relieve with heat (legs/feet).
Just exactly how much muscle spasms/spasticity is too much and how do I know if I’m pushing way too much or just not enough? I’m really not knowing and I know if I don’t keep fighting and just stay in whats comfortable and least painful I won’t be out of the wheelchair very long. Any tips, advice? I welcome them all please. This pain is making me a little bit nuts and I’m using ice and heat at the same time to combat the different parts and symptoms on my lower body. I’m exhausted and frustrated to say the least. #ChronicPain #FailedBackSurgery #Nervedamage #DDD #Osteoarthritis #spinestimulator #migratedleadwire #Exercise #Neuropathy #MuscleWasting #Tremors #numb #tingling #Burning #Spasticity #musclespasms #mobility #Fibromyalgia
Self care cart
Creepy crawlies under your skin??
I no longer feel safe on social media
I am getting to the point where the longer I am on social media apps like instagram, facebook, and tik tok especially, the more unsafe I feel. Every single day I am harassed in the comments. I constantly see my fellow disabled peers, friends, and loved ones being harassed by people too. I have seen people post threats, I have seen subreddit accounts dedicated to accusing disabled people of faking their illnessess. I have seen people's mental health, physical health, and safety in danger because of this, whether a danger to themselves or others. Honestly, this is one of the only online spaces I feel safe. I should not have to hide my experience being disabled, I should be allowed to raise awareness and be honest, but I do not feel safe. I have noticed that the more followers I get (and I am not even like instagram or tik tok famous AT ALL), the more hate I get. I get hate by doctors, I have medical trauma, I get hate by strangers in public, I do not need to get to the point where I do not feel safe online either. Being disabled is so scary, I am scared of my own body and those around me. There is a reason why we are so lonely and isolated beyond just being housebound or sick, it is because so many of us do not feel safe. I have developed agoraphobia because of this. It's unacceptable. And i know i know people will say "do not let it get to you" but it wears on you!!! It builds up and it won't stop!! Don't let it get to me? Do not let people do this! Why is it our responsibility to not let this violence and harassment get to us when it should be their responsibility to unlearn their horrific and abhorrent amount of ableism? Why is the blame always twisted onto us? I am done. I am fed up. I cannot stop my disabilities, and the sicker I get, the more I cannot hide it and the less my illnesses become invisible. Invisible or not, it is unconscionable to be treated this way to the point where I literally fear leaving the house or going online. I've had it.#EhlersDanlos #POTS #ThoracicOutletSyndrome #Ableism #ChronicIllness #InvisibleIllness #visibleillness #Neuropathy
chatcat761 Cathy Carlile Turner
#chatcat76 I'm so excited...I found myself! Please don't reply to the text in the title as this is my home. I'm so sorry. I bet I'm the first one to make a mistake! The name of my closed group is Let's See the Patient. I'd love for you to join, as I'm getting all my writings together about my Chronic illnesses and I love to help make appointments go better. Soon, when I'm eligible, (I'm new, so I might not be "old" enough yet), I'd love to do "rooms". I'll get my story in asap. But I'm pausing for a flare to end!
Have a good ??? My husband forgot to tell me what day it is.
I'm actually at the point where I'm considering lyrica. For years I've tried to avoid it but I'm so ouchy sore to the touch and tender that I'm not sure what else to do. I finally caved in and got hip injections, had to in order to see about a possible hip surgery. Having hip and low back pain since I was a kid concerns me for the future yet I'm hopeful. This is truly not how I saw my life at 30 yet somehow always knew they would be some physical discomfort to work threw. I feel if I can at least get the inflammation down I can sustain and maintain with the Fibromyalgia symptoms and the lax joints. This is truly a trying time however I'm grateful the weather is getting warmer as it helps ease some of the tension. My goal has always been to get it into remission which I hear is possible.
What are your experiences with lyrica or prolotherapy??
#Fibromyalgia #Neuropathy #ChronicPain #ChronicFatigue #nervepain #nervepainrelief #CervicalInstability