I want people to know how sick i was

[Jolene40]

Im sorry this is so long guys. I have nowhere else to go.

Ive been in hospital a long time. Im in for problems with digestion originally. My bowel perforated and ive had sepsis and peritonitis so severe i cant believe im not dead - i wish it had killed me. I am also severely malnourished and have been for some time despite eating. I have an ileostomy as was attacked so badly by chrons / colitis i had to have my colon removed at christmas and now use a bag. It hasnt stopped things though. With this and multiple autoimmune diseases my whole body is degenerating and i cant walk properly or stand. My spine is literally collapsing down and the pain i am in is mind altering. No one seems to have any clue exactly why or can be bothered to look hard enough. I have some sort of disease wasting my muscles and it is now at the stage its virtually killing me. I have gone on about it to every doctor who would listen for the last 4 years. I cant eat anymore so on iv nutrition now.

I dont think anyone realises the extent of my suffering. If i cry it is pure desparation and sadness and fear over the state i am in, the fact i will never be the same again and torturous pain rendering me a complete invalid. The nerve damage is in my neck face and head now and causes pure agony and vertigo dizziness you name it. If doctors see me cry here theyre more concerned with my mental state than the fact i am ravaged by horrific disease and this is a normal human reaction. I have neuropathy from head to toe, blood clots, fluid round my lungs heart, arthritis in all my bones, it goes on and on.

Im desparate to end my suffering yet want my story known - mainly for my little one. No one seems to acknowledge how seriously horiifically ill i am. I want my little one to realise i did not abandon him lightly. I don't want anyone saying i was just weak of mind when im the strongest person i know dealing with pain on a scale that has you screaming to f****g god every day.

I have about 4 documented horrid autoimmune illnesses but they don't explain all of it. My fsther took his own life on return from war. The fact my dad took his life means it will look like im just another mental health job. I am not. I also dont want to undermine anyone suffering mentally ( i am suffering mentally too and know what depression is)

No one sees me crying all the time in agony. I hide it and use all i have and mass amounts of oxycodon to get through a conversation. When the agony is too much i cry. If a doctor sees me cry i get asked about my state of mind. Im crying because i feel like im physically tortured 24 hours a day ffs and have some but not all the answers as to what is actually happening physically!! Im virtually bedridden at the age of 39! My body and mind know im on my way out and it isnt going to be bloody quick but long and torturous as it has been. Of course im distressed.

I dont know how i can make sure everyone who knows me knows how bad this is. I want it out there what i am suffering in full detail before i die ( when i get the courage).

This is long and rambling but i am getting sicker by rhe week and i fear i may try do something snappy and my legacy will be oh she just had chrons and couldnt cope with it. Ive seen physios who i can see think my inability to walk properly is somehow psychologically linked or just sore muscles and my crying is alot to do with my mental state. It 100% is not. My nervous system is being hammered and has done for a long time but the incompetence and lack of knowledge from middle class male doctors often leaves you feeling like a nut job if they dont identify the cause. I spent all my life savings seeing private doctors to get the diagnosees i already have. Before that each moron i saw would suggest it was anxiety! My wasted muscles are obvious to the eye now after years of saying somethings wasting my muscles yet still i get shoulder shrugs.

If the cause of my muscle wasting / collapsing bent spine is not identified it will be ignored and the full horror of my illnesses wont be reflected after i die. My little ones father only knows and accepts so much regarding how ill i am. I honestly think some people think its a state of mind. It is unbelievable but when doctors dont have all the answers even they have suggested anxiety! My perforated bowel which has been killing me was missed for weeks and i was asked about my state of mind and stress levels by one doctor!

I almost want to write a blimmin book with it all in so there is never any doubt as to how much i have endured / am enduring. I hate reading stories about suicide where it is always related to mental health. It absolutely is not. I imagine for many it is because of horrific illness and this gets glossed over or ignored. I absolutely cannot have that.

Ive applied to Dignitas. My family support me 100% now as does a very close friend who comes to see me often. My family still.cant even pronounce the name of some of the health issues ive got so their story alone isnt enough if my little one ever has questions in the future. I absolutely cannot have any questions over this for the future of my little one. I want anyine around him influencing him or even any strangers to know the whole story.

I dont know if that makes any sense. It is too much to document the detail of my illnesses for my little one at this current age so it needs to be out there so to speak in another way. I just dont know how to do that.

 

[Hush Sweet Charlotte]

When he is older he will understand, if you write all of it down and make sure it will get to him when he's old enough. Reading what you've written, no-one could fail to understand. Before then you could ask his dad and your family to read what you've written and try to make sure they understand it too, then hopefully it will get through to your son before then and not be considered suicide but unavoidable euthanasia. It's hard to disbelieve something in black and white, no matter what the idiot doctors say.

 

[headinghome]

Im sorry this is so long guys. I have nowhere else to go.

Ive been in hospital a long time. Im in for problems with digestion originally. My bowel perforated and ive had sepsis and peritonitis so severe i cant believe im not dead - i wish it had killed me. I am also severely malnourished and have been for some time despite eating. I have an ileostomy as was attacked so badly by chrons / colitis i had to have my colon removed at christmas and now use a bag. It hasnt stopped things though. With this and multiple autoimmune diseases my whole body is degenerating and i cant walk properly or stand. My spine is literally collapsing down and the pain i am in is mind altering. No one seems to have any clue exactly why or can be bothered to look hard enough. I have some sort of disease wasting my muscles and it is now at the stage its virtually killing me. I have gone on about it to every doctor who would listen for the last 4 years. I cant eat anymore so on iv nutrition now.

I dont think anyone realises the extent of my suffering. If i cry it is pure desparation and sadness and fear over the state i am in, the fact i will never be the same again and torturous pain rendering me a complete invalid. The nerve damage is in my neck face and head now and causes pure agony and vertigo dizziness you name it. If doctors see me cry here theyre more concerned with my mental state than the fact i am ravaged by horrific disease and this is a normal human reaction. I have neuropathy from head to toe, blood clots, fluid round my lungs heart, arthritis in all my bones, it goes on and on.

Im desparate to end my suffering yet want my story known - mainly for my little one. No one seems to acknowledge how seriously horiifically ill i am. I want my little one to realise i did not abandon him lightly. I don't want anyone saying i was just weak of mind when im the strongest person i know dealing with pain on a scale that has you screaming to f****g god every day.

I have about 4 documented horrid autoimmune illnesses but they don't explain all of it. My fsther took his own life on return from war. The fact my dad took his life means it will look like im just another mental health job. I am not. I also dont want to undermine anyone suffering mentally ( i am suffering mentally too and know what depression is)

No one sees me crying all the time in agony. I hide it and use all i have and mass amounts of oxycodon to get through a conversation. When the agony is too much i cry. If a doctor sees me cry i get asked about my state of mind. Im crying because i feel like im physically tortured 24 hours a day ffs and have some but not all the answers as to what is actually happening physically!! Im virtually bedridden at the age of 39! My body and mind know im on my way out and it isnt going to be bloody quick but long and torturous as it has been. Of course im distressed.

I dont know how i can make sure everyone who knows me knows how bad this is. I want it out there what i am suffering in full detail before i die ( when i get the courage).

This is long and rambling but i am getting sicker by rhe week and i fear i may try do something snappy and my legacy will be oh she just had chrons and couldnt cope with it. Ive seen physios who i can see think my inability to walk properly is somehow psychologically linked or just sore muscles and my crying is alot to do with my mental state. It 100% is not. My nervous system is being hammered and has done for a long time but the incompetence and lack of knowledge from middle class male doctors often leaves you feeling like a nut job if they dont identify the cause. I spent all my life savings seeing private doctors to get the diagnosees i already have. Before that each moron i saw would suggest it was anxiety! My wasted muscles are obvious to the eye now after years of saying somethings wasting my muscles yet still i get shoulder shrugs.

If the cause of my muscle wasting / collapsing bent spine is not identified it will be ignored and the full horror of my illnesses wont be reflected after i die. My little ones father only knows and accepts so much regarding how ill i am. I honestly think some people think its a state of mind. It is unbelievable but when doctors dont have all the answers even they have suggested anxiety! My perforated bowel which has been killing me was missed for weeks and i was asked about my state of mind and stress levels by one doctor!

I almost want to write a blimmin book with it all in so there is never any doubt as to how much i have endured / am enduring. I hate reading stories about suicide where it is always related to mental health. It absolutely is not. I imagine for many it is because of horrific illness and this gets glossed over or ignored. I absolutely cannot have that.

Ive applied to Dignitas. My family support me 100% now as does a very close friend who comes to see me often. My family still.cant even pronounce the name of some of the health issues ive got so their story alone isnt enough if my little one ever has questions in the future. I absolutely cannot have any questions over this for the future of my little one. I want anyine around him influencing him or even any strangers to know the whole story.

I dont know if that makes any sense. It is too much to document the detail of my illnesses for my little one at this current age so it needs to be out there so to speak in another way. I just dont know how to do that.

I don't know how you're still alive I would've taken all the Oxy and everything else u had all at once…

 

[Jolene40]

When he is older he will understand, if you write all of it down and make sure it will get to him when he's old enough. Reading what you've written, no-one could fail to understand. Before then you could ask his dad and your family to read what you've written and try to make sure they understand it too, then hopefully it will get through to your son before then and not be considered suicide but unavoidable euthanasia. It's hard to disbelieve something in black and white, no matter what the idiot doctors say.

Thankyou lovely. When i see it written in black and white i see how awful it is. I don't think a child ever understands; it will only be when older like you say.

 

[Hush Sweet Charlotte]

It seems so much fairer and more accurate to say your illness killed you, rather than it being remotely to do with suicide. I don't know if your family can be persuaded to frame it more that way, because in a real sense it's completely true. So sorry Jolene.

 

[Jolene40]

I don't know how you're still alive I would've taken all the Oxy and everything else u had all at once…

Its heavily controlled. The nurses give it to me every 4 hours and watch you take it. I am far too scared to take my life right now as i have no reliable means - failure is not an option at all. I came here thinking it would be more straightforward
I have a bag now after bowel disease and my digestion is so messed up that i doubt an overdose would work.
The instinct to stick around for my little one is also very strong. I still serve a purpose as shit as it is. We talk every night for ages, i listen to him for hours if he wants to like no one else does. I am so so grateful for every minute i can talk to him he knows it and i know this helps him and builds his sense of self. He comes and sees me and we talk and play with his figures ( from my hoz bed!). It kills me as i want to go so badly because of my suffering yet i am desperate to hang on for him.

 

[headinghome]

Its heavily controlled. The nurses give it to me every 4 hours and watch you take it. I am far too scared to take my life right now as i have no reliable means - failure is not an option at all. I came here thinking it would be more straightforward
I have a bag now after bowel disease and my digestion is so messed up that i doubt an overdose would work.
The instinct to stick around for my little one is also very strong. I still serve a purpose as shit as it is. We talk every night for ages, i listen to him for hours if he wants to like no one else does. I am so so grateful for every minute i can talk to him he knows it and i know this helps him and builds his sense of self. He comes and sees me and we talk and play with his figures ( from my hoz bed!). It kills me as i want to go so badly because of my suffering yet i am desperate to hang on for him.

Then you have a reason to live…

 

[Jolene40]

It seems so much fairer and more accurate to say your illness killed you, rather than it being remotely to do with suicide. I don't know if your family can be persuaded to frame it more that way, because in a real sense it's completely true. So sorry Jolene.

If i get accepted to Dignitas then that is exactly how I would like it framed for him. When he is older I would then understand how it would be right for him to know.
I honestly cannot trust certain close family members not to sing like a canary amongst each other and it gets overheard.
I think its wrong but Dignitas makes this feel more ok and acceptable as a legacy my little one is left with rather than doing myself in by my own hand.

Then you have a reason to live…

I do but it is the greatest most torturous sacrifice on this earth. It is existing in torture against ones will for the benefit of my child. But i really will try hang on and bare this as long as i can or before it kills me anyway.

 

[silentsinger]

I hope you don't mind me commenting but I just wanted to say that I really feel for you. And your opening sentence.... big hug to you. I wish you all the best

 

[Jolene40]

I hope you don't mind me commenting but I just wanted to say that I really feel for you. And your opening sentence.... big hug to you. I wish you all the best

Thankyou. This is the only place you can say it as it is so im grateful for that at least.

 

[lululoo]

I'm so sorry for what you are going through. It honestly makes me feel like a big baby for not being able to tolerate my physical issues. I really relate to the feeling though of wanting people to know how bad it feels. I can't believe people don't understand, when many of your issues are so visible. Mine are invisible. I think you should document it somehow and give it to someone you trust.

My issues aren't as bad as yours but I am all alone and have such bad depression, OCD, shame, loneliness, etc. Maybe each physical or mental issue has its own weight and if your combined total weight is high enough, you want to CTB.

 

[seekingoblivion]

Man I'm so sorry you've gone through and are going through so much suffering. I hate how healthcare professionals can act like they don't give a fuck. It just makes me feel worse about being on this planet. How is it that they don't see how much suffering you're going through? Perhaps you should ask them how they think they'd feel if they were in your position.

As mentioned your son would be more understanding of your decision (when he's older ) if a detailed explanation of your pain and suffering could be left behind. I'm not sure if you feel it's possible to achieve that. Maybe it could be left with his father?

If you do end up going before your time I hope that it'll be through dignitas. As you've said it would make it even more understandable for your son. And, while I don't know about the details of their procedures, I think it'd make for a more comfortable departure.

It's really heartbreaking that you're going through all this. And to top it off your child is still so young. I applaud you for trying to hang on for your son. He has an incredible mum!