Health problems, feel so desperate

[Jolene79]

I'm so desperate to keep on going but I am so beaten by what my bodies doing. I'm in my 40s, have so many chronic conditions which I have coped with. I have had multiple hospital stays and severe health struggles.

I now have neuropathy so severe through my entire face and head. It is now impacting my ability to sit up and function properly. It is affecting my mental state severely. I am chasing doctors continually but if you can move and talk there really is no urgency or appreciation. I've had the mental health card pulled multiple times despite very clear objective evidence of debilitating conditions. All of this is killing the person I am. I spend 90% of my time on the sofa in severe internal distress. My back does not support me properly and I'm propped all the time. The continual nerve sensations through my face and head now as well as elsewhere just make me want to die.

There's a big but. I have a 12 year old and I don't want to do that to them. But I see myself just worsening and then being gaslit which has traumatised me enough already. If you've spent long time in hospital (UK) you will understand what I mean.

There are people around me who help and I do everything to be cheery and bright around my child. Although not together, father is very involved so he is actually pretty content as others help ensure all his needs are met.

I want to be the mum I used to be. I don't want to deal with this decline and watching my child witness it all. The medical profession won't help and it seems there isn't much for the type of nerve condition I have. I also have a genetic connective tissue condition which can't be treated and most my intestines removed already.

I wish more than anything that MAID was available here. Just knowing when the time comes. And it feels incredibly close, I could safely and reliably exit.

I wish more than anything just to get better but it feels utterly hopeless now. I cannot bare the thought of going through a violent horrible death and the legacy of that. I can't face being stuck in a hospital bed anymore being completely fobbed off or left helpless. I couldn't tolerate one day there again.

Are there other parents here

 

[Raindancer]

I am so very sorry for what you are going through. I have health issues as well and they are the main reason I am here. I am not a parent though and cannot even imagine the struggle you must be going through. I know the challenges in dealing with everything medical when you cannot get a specific diagnosis. I got one after 12 years, but then began to have some various debilitating symptoms which were completely ignored and just blamed on my diagnosis. It's exhausting going through all the testing and appointments. But at least for me it's soul wrenching hanging on day after day pushing through what is beyond my ability to cope. You8 are in an impossible situation and all I can offer is my support. I am here for you<3

 

[DeadHead]

I have also experienced the state sponsored killing machine known as the NHS. I know all about the gaslighting, the corruption, the misogyny.
I have neuropathy caused by a brain tumour so I empathise with you. Its a hideous form of torture, especially on top of all the other symptoms. This is going to sound crazy, but in October I started a homeopathic protocol that's made it more bearable. Through a private doctor so not cheap, but worth every penny. I had no other options, nowhere else to go for help. Would you consider homeopathy? The remedies are pretty cheap, it's the consultation that's expensive. The nhs will kill us given half the chance.

 

[Forever Sleep]

I'm so sorry. I feel so terrible for the people here suffering with chronic pain. I know I wouldn't be able to cope with life under those conditions. You sound like an incredible Mum. I'm sorry life has treated you so poorly.

 

[Jolene79]

I have also experienced the state sponsored killing machine known as the NHS. I know all about the gaslighting, the corruption, the misogyny.
I have neuropathy caused by a brain tumour so I empathise with you. Its a hideous form of torture, especially on top of all the other symptoms. This is going to sound crazy, but in October I started a homeopathic protocol that's made it more bearable. Through a private doctor so not cheap, but worth every penny. I had no other options, nowhere else to go for help. Would you consider homeopathy? The remedies are pretty cheap, it's the consultation that's expensive. The nhs will kill us given half the chance.

Thanks deadhead. I have various diagnosed conditions and have been offered various treatments which don't work well or cause even worse problems. Then they just wash their hands.

I struggle to fully believe in homeopathy itself so that lack of belief alone probably wouldn't work. I try everything else alternative that I can. Even B12 injections at home.

Your lovely caring responses are so comforting. Just being able to be so honest and consider all options to ctb help alot.

I'm so sorry. I feel so terrible for the people here suffering with chronic pain. I know I wouldn't be able to cope with life under those conditions. You sound like an incredible Mum. I'm sorry life has treated you so poorly.

Thankyou so much for your kind compassionate words. I think the fear that comes with this also causes such distress that only makes your mental state worse. I appreciate your understanding alot. It is the unforgivable act when you're a mum. No one can really understand how someone who actually loves their family / children could ever consider this. Only those who suffer at the depths of hell like most on here know.

 

[bigfishlittlefish]

I'm so desperate to keep on going but I am so beaten by what my bodies doing. I'm in my 40s, have so many chronic conditions which I have coped with. I have had multiple hospital stays and severe health struggles.

I now have neuropathy so severe through my entire face and head. It is now impacting my ability to sit up and function properly. It is affecting my mental state severely. I am chasing doctors continually but if you can move and talk there really is no urgency or appreciation. I've had the mental health card pulled multiple times despite very clear objective evidence of debilitating conditions. All of this is killing the person I am. I spend 90% of my time on the sofa in severe internal distress. My back does not support me properly and I'm propped all the time. The continual nerve sensations through my face and head now as well as elsewhere just make me want to die.

There's a big but. I have a 12 year old and I don't want to do that to them. But I see myself just worsening and then being gaslit which has traumatised me enough already. If you've spent long time in hospital (UK) you will understand what I mean.

There are people around me who help and I do everything to be cheery and bright around my child. Although not together, father is very involved so he is actually pretty content as others help ensure all his needs are met.

I want to be the mum I used to be. I don't want to deal with this decline and watching my child witness it all. The medical profession won't help and it seems there isn't much for the type of nerve condition I have. I also have a genetic connective tissue condition which can't be treated and most my intestines removed already.

I wish more than anything that MAID was available here. Just knowing when the time comes. And it feels incredibly close, I could safely and reliably exit.

I wish more than anything just to get better but it feels utterly hopeless now. I cannot bare the thought of going through a violent horrible death and the legacy of that. I can't face being stuck in a hospital bed anymore being completely fobbed off or left helpless. I couldn't tolerate one day there again.

Are there other parents here

Hey. I'm in the UK and have a bunch of chronic health problems. I've also experienced being gaslit by medical "professionals". If you ever want to chat, please feel free to PM me x

 

[Jolene79]

Hey. I'm in the UK and have a bunch of chronic health problems. I've also experienced being gaslit by medical "professionals". If you ever want to chat, please feel free to PM me x

Thanks Big fish, I really appreciate that. I'm sorry that you deal with the same sort of issues. I think the experience of being continually gaslit actually makes people sicker and desperate. Acknowledgment and even sorry I honestly don't know how to help this would be so much easier to deal with

I am so very sorry for what you are going through. I have health issues as well and they are the main reason I am here. I am not a parent though and cannot even imagine the struggle you must be going through. I know the challenges in dealing with everything medical when you cannot get a specific diagnosis. I got one after 12 years, but then began to have some various debilitating symptoms which were completely ignored and just blamed on my diagnosis. It's exhausting going through all the testing and appointments. But at least for me it's soul wrenching hanging on day after day pushing through what is beyond my ability to cope. You8 are in an impossible situation and all I can offer is my support. I am here for you<3

Thanks rain dancer. You understand how it destroys you gradually having these problems and the hopelessness of it all when dealing with these medical people. Thankyou for your kindness.

What is so uncanny is that on this site I have seen the most sincere and honest messages and posts that you get nowhere else, not on any health forums, nowhere. This is what the anti choice movement fail to see.

People are not typically talked into anything in this world. People come here in the first place for a reason.

 

[bigfishlittlefish]

Thanks Big fish, I really appreciate that. I'm sorry that you deal with the same sort of issues. I think the experience of being continually gaslit actually makes people sicker and desperate. Acknowledgment and even sorry I honestly don't know how to help this would be so much easier to deal with

Yes! Honest acknowledgement of the limits to which they can help would be so much better than being fobbed off by pathetic excuses.

 

[DeadHead]

Thanks deadhead. I have various diagnosed conditions and have been offered various treatments which don't work well or cause even worse problems. Then they just wash their hands.

I struggle to fully believe in homeopathy itself so that lack of belief alone probably wouldn't work. I try everything else alternative that I can. Even B12 injections at home.

Your lovely caring responses are so comforting. Just being able to be so honest and consider all options to ctb help alot.

Thankyou so much for your kind compassionate words. I think the fear that comes with this also causes such distress that only makes your mental state worse. I appreciate your understanding alot. It is the unforgivable act when you're a mum. No one can really understand how someone who actually loves their family / children could ever consider this. Only those who suffer at the depths of hell like most on here know.

I do b12 injections myself too! I have pernicious anaemia. Got fed up with nhs telling me 1 only need 1 every 3 months. I need at least 1 a month to feel normal. Understand your scepticism about homeopathy. I've had successes as well as failures. Just know you are not alone and you will find alot of support here.

 

[nptg5]

i sympathize with you. i am not a parent myself, but i have a disability and chronic pain that has gotten much worse recently. it's a real roller coaster - i honestly feel like my own body is gaslighting me. some days i actually feel great, like nothing is wrong at all, and then the next day the pain is almost unbearable. this constant gaslighting has also sent my anxiety through the roof. it's very, very hard to deal with.

i can't speak to the UK, but in the US, it's clear that the health care system is seriously broken. i just don't understand why the doctors don't seem to want to do any amount of thinking, or investigation, or anything. it seems that if you can't be fixed by the standard recipe book, they are content to load you up with all the opiates you can dream of, and kick you the fuck outta the hospital. (don't get me wrong... the opiates *do* help, but it is *not* a sustainable lifestyle.) it's so frustrating that, if you want any hope of *real* treatment, you need to have an advocate - someone who cares about you who is just there to yell at the doctors and make sure they do their fucking job. not everyone is so lucky, though - my family is unstable and have their own mental health issues, and my friends really aren't up to the task.

having a disability and chronic pain is just so incredibly challenging, and our societies just don't seem to provide any real support. at least you know that you are not alone.