WearyWanderer
Student
- Nov 3, 2019
- 142
I don't know why I did this. I can't believe I accidentally did this.
I needed time to at least save up to try and make it to Switzerland
I recently went to ER and mistakenly did morphine IV. I thought it only numbed one area and did not know it goes into spinal fluids.
I am extremely malformed and can only move cm by cm.
As the morphine was still wearing off, I accidentally retriggered the full body contracture from the spina bifida that by a miracle I had gotten to calm down to lower levels of pain after 5 years of merticulous care and ornate muscle positioning in my bed
I fucking knew I could never let this happen but I was stupid and the Covid made me have anxiety and racing thoughts
Usually I wait to act and thoroughly research any substances I ingest because I cannot tolerate almost any of them
The ER nurse refused to cut my dose of morphine in half and at that point I should have said I change my mind but I was too sick and weak to advocate for myself and no one came with me because I went in middle of night.
I had been trying to ask my Dad to take me before that and he kept refusing bc he thought it would make me worse but what actually made me worse was going without advocate to help me figure out what to do.
I was then threatened coerced and pressured into taking neurotoxic antibiotic Flagyl plus Augmentin after.
Looking back, I did not actually need either of these antibiotics but I was threatened with eviction if I did not take.
Ever since the day I took the morphine and antibiotics, my muscle sensation has never returned
I have connective tissue disorder and going numb long term like this was literally my worst nightmare.
I'm trying to titrate up the thiamine and praying it helps but no one would listen to me for six months so I couldn't start it in time as early as I wanted and it takes months and months to get to higher level doses which some people need in order to reactivate the nerves.
Once I finally do regain sensation (if I ever do) I'm for sure going to have full body neuropathy but both the muscle pain and the burning are made worse by not feeling how to move cm by cm.
I don't even know how it's possible for a person's entire anatomy to be this weird but it wasn't caught at birth
I had finally figured out how to manage my bathroom habits and stoped the terrible pelvic contractures from every time I had a BM.
No one in my family would help me during Covid when I asked because I was trying to figure out what to do so I didn't have to go to ER. Both Covid and the antibiotics also messed up my stomach and it's never been the same I've had 24/7 bloating in my malformed stomach ever since likely from intestinal fungal overgrowth as well as possible systemic Candida.
Has anyone here ever experienced anything remotely similar with severe numbness and if yes how did you gain the muscle sensation back?
It's incredibly uncomfortable and frankly impossible to not feel my body with all the other things I have going on. I had sworn to myself that I would never EVER allow this to happen because it literally would no longer be humanly physically possible if I did
My pelvis is too small, short, narrow, flattened, twisted, fused, asymmetrical, compact, compressed and abnormally, unevenly shaped to withhold this level of pressure and weight of my entire body combined with numbness especially for this extended amount of time
I don't know what to do anymore but something I read online said full body numbness can be part of grade 3 neuropathy because apparently there's levels.
I feel extremely betrayed by everyone around me and no one understands how physically unlivable my circumstances are.
They've all stepped back the most right as I needed them the most and I'm also not even getting the right level of care here that I needed in my past flare which wasn't even half this bad that time but which I barely endured through moment by moment.
I told my Mom they're not equipped to help me at level I need at a family home if I ever got as bad as I was in past and tried to tell owner before I moved in but no one would take me seriously
Nothing is even remotely manageable anymore and the people who are helping me won't give me certain accommodations I've asked for for past 6 months.
I have no idea how to even fight to survive through this for future possible flight to Pegasos and bodily self preservation anymore
Does anyone know what I can do?
Have heard of disabled and abled mutual aid but it looked mostly like food and supplies-related, not caregiving and administrative support related.
I needed time to at least save up to try and make it to Switzerland
I recently went to ER and mistakenly did morphine IV.
I thought it only numbed one area and did not know it goes into spinal fluids. I am extremely malformed and can only move cm by cm.
As the morphine was still wearing off, I accidentally retriggered the full body contracture from the spina bifida that by a miracle I had gotten to calm down to lower levels of pain after 5 years of merticulous care and ornate muscle positioning in my bed
I fucking knew I could never let this happen but I was stupid and the Covid made me have anxiety and racing thoughts
Usually I wait to act and thoroughly research any substances I ingest because I cannot tolerate almost any of them
The ER nurse refused to cut my dose of morphine in half and at that point I should have said I change my mind but I was too sick and weak to advocate for myself and no one came with me because I went in middle of night.
I had been trying to ask my Dad to take me before that and he kept refusing bc he thought it would make me worse but what actually made me worse was going without advocate to help me figure out what to do.
I was then threatened coerced and pressured into taking neurotoxic antibiotic Flagyl plus Augmentin after.
Looking back, I did not actually need either of these antibiotics but I was threatened with eviction if I did not take.
Ever since the day I took the morphine and antibiotics, my muscle sensation has never returned
I have connective tissue disorder and going numb long term like this was literally my worst nightmare.
I'm trying to titrate up the thiamine and praying it helps but no one would listen to me for six months so I couldn't start it in time as early as I wanted and it takes months and months to get to higher level doses which some people need in order to reactivate the nerves.
Once I finally do regain sensation (if I ever do) I'm for sure going to have full body neuropathy but both the muscle pain and the burning are made worse by not feeling how to move cm by cm.
I don't even know how it's possible for a person's entire anatomy to be this weird but it wasn't caught at birth
I had finally figured out how to manage my bathroom habits and stoped the terrible pelvic contractures from every time I had a BM.
No one in my family would help me during Covid when I asked because I was trying to figure out what to do so I didn't have to go to ER. Both Covid and the antibiotics also messed up my stomach and it's never been the same I've had 24/7 bloating in my malformed stomach ever since likely from intestinal fungal overgrowth as well as possible systemic Candida.
Has anyone here ever experienced anything remotely similar with severe numbness and if yes how did you gain the muscle sensation back?
It's incredibly uncomfortable and frankly impossible to not feel my body with all the other things I have going on. I had sworn to myself that I would never EVER allow this to happen because it literally would no longer be humanly physically possible if I did
My pelvis is too small, short, narrow, flattened, twisted, fused, asymmetrical, compact, compressed and abnormally, unevenly shaped to withhold this level of pressure and weight of my entire body combined with numbness especially for this extended amount of time
I don't know what to do anymore but something I read online said full body numbness can be part of grade 3 neuropathy because apparently there's levels.
I feel extremely betrayed by everyone around me and no one understands how physically unlivable my circumstances are.
They've all stepped back the most right as I needed them the most and I'm also not even getting the right level of care here that I needed in my past flare which wasn't even half this bad that time but which I barely endured through moment by moment.
I told my Mom they're not equipped to help me at level I need at a family home if I ever got as bad as I was in past and tried to tell owner before I moved in but no one would take me seriously
Nothing is even remotely manageable anymore and the people who are helping me won't give me certain accommodations I've asked for for past 6 months.
I have no idea how to even fight to survive through this for future possible flight to Pegasos and bodily self preservation anymore
Does anyone know what I can do?
Have heard of disabled and abled mutual aid but it looked mostly like food and supplies-related, not caregiving and administrative support related.
In terms of caregiving help, are you in the US? If you are, I know there are various organizations that provide different levels of aide for individuals with spina bifida. There probably are in other countries too. The first one that comes to mind is Help Hope Live which provides financial assistance. There are some that provide advocacy, but they're state specific
