Chronically ill spouses/Lit escapism

[OutlawedSubversion]

I don't really know what I'm expecting from posting this or what I hope to achieve but I guess the crux of a forum is to give people a voice where they may otherwise not have one.

There are many challenges to having a wife/husband/partner with a chronic or terminal illness. Life throws unexpected curve balls at you in the most bizarre and random ways and as imperfect beings we all deal with them in different ways.

My wife has been chronically ill for the last two years with two rare, incurable and debilitating diseases. It'll all happened completely out of the blue and totally turned our lives upside down.
We struggled at first to cope but found mechanisms to help as the months progressed. We've both spent time mourning our old lives as it has completely changed for the both of us. What we once knew had gone and we were left with the uncertainty and vagueness of what our life would evolve into.
We now exist in limbo, not quite through the worst of it, coping marginally better and fearful of the future and what else it may bring.
As an individual this has destroyed her life, particularly being in her mid-20's. She's quit work, quit driving, lives in constant fear of severe injury, can't walk ten feet without being in agony for days and has to cope as best she can with the destrusction her condition has inflicted upon her.
As an individual, this has totally changed my life too. A lot of my time I now spend caring for her. Balancing a demanding work life with a demanding home life there is little joy to grab hold of. While her condition has brought us much closer in many respects, it has also pushed us apart in others.
Before her illness we were practitioners in the fetish/BDSM lifestyle and regularly enjoyed a complex sex life. It was the cornerstone of how we met and how we lived our lives together. Since her illness that has been completely stripped away and we've had to find other commonalities to bond over.

To fill the void I began writing erotica. As a highly sexed individual I needed that catharsis and escapism I used to get from play sessions. I had been an avid reader on the site for many years though never thought to put my naturally literary mind to use and write something. That changed last year when I posted my first story. It's evolution came from reminiscing about a night my wife and I had years before her illness. Taking some artistic licence I documented it and posted it here. Much to my surprise the story did well and continues to be highly rated and viewed on Lit. That was followed up by a second and third entry and I am currently working on a fourth.

My wife doesn't know I write and publish to Literotica. It's my little slice of an escapist haven outside of a difficult and immensely challenging real world existence. It allows me to channel supressed desires into text and share with the world. Something that is just for me and something that I can be proud of.

While it may not be a perfect way to deal with the situation it's how I've adapted. I'm sure there are many of you out there who deal with similar situations in your own lives and find you own way of managing and coping. Lit has helped and will continue to help me cope. I hope it can do the same for you.

 

[weftandwarp]

I don't really know what I'm expecting from posting this or what I hope to achieve but I guess the crux of a forum is to give people a voice where they may otherwise not have one.

There are many challenges to having a wife/husband/partner with a chronic or terminal illness. Life throws unexpected curve balls at you in the most bizarre and random ways and as imperfect beings we all deal with them in different ways.

My wife has been chronically ill for the last two years with two rare, incurable and debilitating diseases. It'll all happened completely out of the blue and totally turned our lives upside down.
We struggled at first to cope but found mechanisms to help as the months progressed. We've both spent time mourning our old lives as it has completely changed for the both of us. What we once knew had gone and we were left with the uncertainty and vagueness of what our life would evolve into.
We now exist in limbo, not quite through the worst of it, coping marginally better and fearful of the future and what else it may bring.
As an individual this has destroyed her life, particularly being in her mid-20's. She's quit work, quit driving, lives in constant fear of severe injury, can't walk ten feet without being in agony for days and has to cope as best she can with the destrusction her condition has inflicted upon her.
As an individual, this has totally changed my life too. A lot of my time I now spend caring for her. Balancing a demanding work life with a demanding home life there is little joy to grab hold of. While her condition has brought us much closer in many respects, it has also pushed us apart in others.
Before her illness we were practitioners in the fetish/BDSM lifestyle and regularly enjoyed a complex sex life. It was the cornerstone of how we met and how we lived our lives together. Since her illness that has been completely stripped away and we've had to find other commonalities to bond over.

To fill the void I began writing erotica. As a highly sexed individual I needed that catharsis and escapism I used to get from play sessions. I had been an avid reader on the site for many years though never thought to put my naturally literary mind to use and write something. That changed last year when I posted my first story. It's evolution came from reminiscing about a night my wife and I had years before her illness. Taking some artistic licence I documented it and posted it here. Much to my surprise the story did well and continues to be highly rated and viewed on Lit. That was followed up by a second and third entry and I am currently working on a fourth.

My wife doesn't know I write and publish to Literotica. It's my little slice of an escapist haven outside of a difficult and immensely challenging real world existence. It allows me to channel supressed desires into text and share with the world. Something that is just for me and something that I can be proud of.

While it may not be a perfect way to deal with the situation it's how I've adapted. I'm sure there are many of you out there who deal with similar situations in your own lives and find you own way of managing and coping. Lit has helped and will continue to help me cope. I hope it can do the same for you.

You aren't unique in this. Some has been similar for me. I think it is good for you that you can identify aspects of it and talk of it here. I hope you have people you can talk to and get some support/ respite. It can dominate one's life. It took me a long time to get to where you seem to be. I found organisation and some diversion from the caring role was important. It helped to recharge the batteries. I also used to take her on small excursions- as much as she could tolerate and it helped considerably. It's now a long time ago for me but the imprint has been indelible. Take care and all the best.

 

[Desiremakesmeweak]

'Of the making of books (writing), there can be no end.'

 

[ChloeTzang]

All I can say is that it seems to me you've found a perfectly valid and understandable mechanism for destressing a little in what is a very stressful situation. It harms noone and helps you deal with circumstances. In my book, that's all good.

 

[OutlawedSubversion]

You aren't unique in this. Some has been similar for me. I think it is good for you that you can identify aspects of it and talk of it here. I hope you have people you can talk to and get some support/ respite. It can dominate one's life. It took me a long time to get to where you seem to be. I found organisation and some diversion from the caring role was important. It helped to recharge the batteries. I also used to take her on small excursions- as much as she could tolerate and it helped considerably. It's now a long time ago for me but the imprint has been indelible. Take care and all the best.

Diversions certainly help the process. End of the day if you're not taking care of yourself how can you expect to take care of someone else.
It can be a very solitary and one-sided existence and I'm only now learning to break the habit of a lifetime and openly discuss the issues.

 

[weftandwarp]

Diversions certainly help the process. End of the day if you're not taking care of yourself how can you expect to take care of someone else.
It can be a very solitary and one-sided existence and I'm only now learning to break the habit of a lifetime and openly discuss the issues.

May I suggest you do some thing imaginative, with her? May be a whacky thought journal. I'm sure you both have a lot of whacky thoughts. It would be good if you developed each others into stories or simply built a collection of them. Date them though. No need for erotica but erotic if you both want. My wife had no interest in sex. Perhaps you could illustrate it. I don't know what your skills are. A journal could also be good- record the things she and you find difficult and the things that give you both pleasure. From that you could develop more of the good things. There are other things you can do, I'm sure. I only gave an example. I found drawing wonderful. Being on the illness leash is very difficult and I found diversion is very useful. We are all different though and what one finds useful another finds to be a real chore. I just thought it might help to see what some one else did.

 

[OutlawedSubversion]

May I suggest you do some thing imaginative, with her? May be a whacky thought journal. I'm sure you both have a lot of whacky thoughts. It would be good if you developed each others into stories or simply built a collection of them. Date them though. No need for erotica but erotic if you both want. My wife had no interest in sex. Perhaps you could illustrate it. I don't know what your skills are. A journal could also be good- record the things she and you find difficult and the things that give you both pleasure. From that you could develop more of the good things. There are other things you can do, I'm sure. I only gave an example. I found drawing wonderful. Being on the illness leash is very difficult and I found diversion is very useful. We are all different though and what one finds useful another finds to be a real chore. I just thought it might help to see what some one else did.

That's a great suggestion, thank you. I'm a graphic novelist at heart and that's how I came to writing in the first place. That's something that could really work too.

 

[weftandwarp]

That's a great suggestion, thank you. I'm a graphic novelist at heart and that's how I came to writing in the first place. That's something that could really work too.

I wrote funny children's stories or stories about children. She some times had ideas, particularly about the plot or its presentation. Visitors used to come to hear the latest. She enjoyed it immensely. They would laugh. Often visitors stayed for a while and it gave me the opportunity to go shopping etc. I always made sure I took no longer than I promised I would. We had a rule- that no one ask about the prognosis. They were told they would be told but that questions were difficult and she would tell them every thing but in a way comfortable to her. I always suggested they talk to her about what they did yesterday, what they are doing today and what they're planning to do tomorrow. By the time they finished that she would be talking about every thing important to her and there was nothing more important than her prognosis. It worked very well.

 

[Green_Knight]

I'm sorry to hear that fate has dealt you such a tough hand but I admire the way you are handling it and I'm pleased for you that Lit has given you an outlet to fill the void left in your life.

I come at this from the other end of the experience – as the person being cared for. I had been incredibly fit and active when I came down with a chronic debilitating illness which completely changed my life. I had just about come to terms with that when I was diagnosed with a terminal illness. In one way, having had the earlier condition, I found the second – and its prognosis – a lot easier to handle. I am also fortunate that I am not debilitated to the extent that some people with terminal illnesses can be, though life can be an almighty struggle sometimes. Ironically, the treatments – that they take care to stress are only palliative – often make things far worse but I'm determined not to succumb. Sometimes there are advantages to being bloody-minded.

My current partner and I have, for various reasons, always had a 'living together apart' arrangement and we've preferred not to change that, despite the circumstances. It is difficult to look after myself sometimes but, on the other hand, it means that the weekends when I am looked after are sheer bliss. My greatest concern comes from seeing people who have been carers when the inevitable eventually happens. They not only suffer the normal grief of a loss but the whole basis on which they've run their lives disappears overnight. We decided that it was important for my partner to maintain her social life and keep up with her friends so that if or when...

I have written as part of my livelihood for many years and I first wrote a story for Lit a few years ago, primarily as light relief. I enjoy writing and I have found that writing for Lit is a great deal more relaxing than writing for publishers. It has its own downsides but they are minor compared to the frustrations of doing business with a publisher. It also serves as an outlet for frustrated desires at a time when the flesh might not be as willing or able as the mind.

It may not be much but it has helped to give me some purpose, drive and occupation at a time when illness is doing its best to strip me of most of what I've enjoyed in the past. And the fact that people seem to like what I write helps enormously too.

Sometimes, sadly, the cumulative impact of treatments is such that I struggle to write. This has particularly been the case for much of the time since I started yet another new course of treatment a while back. To put together a post such as this can be as much as I can manage. All I can do for the moment is to jot down odd ideas which I will one day, hopefully, be able to develop into full stories. At least that is progress of a sort.

I wish you well and I hope we will see more of your work on Lit in the future.

I don't really know what I'm expecting from posting this or what I hope to achieve but I guess the crux of a forum is to give people a voice where they may otherwise not have one.

There are many challenges to having a wife/husband/partner with a chronic or terminal illness. Life throws unexpected curve balls at you in the most bizarre and random ways and as imperfect beings we all deal with them in different ways.

My wife has been chronically ill for the last two years with two rare, incurable and debilitating diseases. It'll all happened completely out of the blue and totally turned our lives upside down.
We struggled at first to cope but found mechanisms to help as the months progressed. We've both spent time mourning our old lives as it has completely changed for the both of us. What we once knew had gone and we were left with the uncertainty and vagueness of what our life would evolve into.
We now exist in limbo, not quite through the worst of it, coping marginally better and fearful of the future and what else it may bring.
As an individual this has destroyed her life, particularly being in her mid-20's. She's quit work, quit driving, lives in constant fear of severe injury, can't walk ten feet without being in agony for days and has to cope as best she can with the destrusction her condition has inflicted upon her.
As an individual, this has totally changed my life too. A lot of my time I now spend caring for her. Balancing a demanding work life with a demanding home life there is little joy to grab hold of. While her condition has brought us much closer in many respects, it has also pushed us apart in others.
Before her illness we were practitioners in the fetish/BDSM lifestyle and regularly enjoyed a complex sex life. It was the cornerstone of how we met and how we lived our lives together. Since her illness that has been completely stripped away and we've had to find other commonalities to bond over.

To fill the void I began writing erotica. As a highly sexed individual I needed that catharsis and escapism I used to get from play sessions. I had been an avid reader on the site for many years though never thought to put my naturally literary mind to use and write something. That changed last year when I posted my first story. It's evolution came from reminiscing about a night my wife and I had years before her illness. Taking some artistic licence I documented it and posted it here. Much to my surprise the story did well and continues to be highly rated and viewed on Lit. That was followed up by a second and third entry and I am currently working on a fourth.

My wife doesn't know I write and publish to Literotica. It's my little slice of an escapist haven outside of a difficult and immensely challenging real world existence. It allows me to channel supressed desires into text and share with the world. Something that is just for me and something that I can be proud of.

While it may not be a perfect way to deal with the situation it's how I've adapted. I'm sure there are many of you out there who deal with similar situations in your own lives and find you own way of managing and coping. Lit has helped and will continue to help me cope. I hope it can do the same for you.

 

[OutlawedSubversion]

I'm sorry to hear that fate has dealt you such a tough hand but I admire the way you are handling it and I'm pleased for you that Lit has given you an outlet to fill the void left in your life.

I come at this from the other end of the experience – as the person being cared for. I had been incredibly fit and active when I came down with a chronic debilitating illness which completely changed my life. I had just about come to terms with that when I was diagnosed with a terminal illness. In one way, having had the earlier condition, I found the second – and its prognosis – a lot easier to handle. I am also fortunate that I am not debilitated to the extent that some people with terminal illnesses can be, though life can be an almighty struggle sometimes. Ironically, the treatments – that they take care to stress are only palliative – often make things far worse but I'm determined not to succumb. Sometimes there are advantages to being bloody-minded.

My current partner and I have, for various reasons, always had a 'living together apart' arrangement and we've preferred not to change that, despite the circumstances. It is difficult to look after myself sometimes but, on the other hand, it means that the weekends when I am looked after are sheer bliss. My greatest concern comes from seeing people who have been carers when the inevitable eventually happens. They not only suffer the normal grief of a loss but the whole basis on which they've run their lives disappears overnight. We decided that it was important for my partner to maintain her social life and keep up with her friends so that if or when...

I have written as part of my livelihood for many years and I first wrote a story for Lit a few years ago, primarily as light relief. I enjoy writing and I have found that writing for Lit is a great deal more relaxing than writing for publishers. It has its own downsides but they are minor compared to the frustrations of doing business with a publisher. It also serves as an outlet for frustrated desires at a time when the flesh might not be as willing or able as the mind.

It may not be much but it has helped to give me some purpose, drive and occupation at a time when illness is doing its best to strip me of most of what I've enjoyed in the past. And the fact that people seem to like what I write helps enormously too.

Sometimes, sadly, the cumulative impact of treatments is such that I struggle to write. This has particularly been the case for much of the time since I started yet another new course of treatment a while back. To put together a post such as this can be as much as I can manage. All I can do for the moment is to jot down odd ideas which I will one day, hopefully, be able to develop into full stories. At least that is progress of a sort.

I wish you well and I hope we will see more of your work on Lit in the future.

Thank you for your candid response. I really do appreciate the effort it must have taken to post such a lengthy reply.

I love that your situation with your partner gives you something to look forward to. It's hugely important to have that when lives are so dominated by things beyond our control. Illness can be so consuming and truly destroys lives for both the person suffering and those caring for them. It's only through realalisation and a degree of acceptance that you can move forward.

I'm pleased that Lit has given so many more people that escape and catharsis, from both sides of the coin. It helps massively to channel and vent those frustrations that may not always be viable in the physical world.

Thank you again for sharing your situation and highlighting this from a different perspective. You've inspired me beyond words.

 

[Green_Knight]

Thank you again for sharing your situation and highlighting this from a different perspective. You've inspired me beyond words.

I forgot to add in my original post that, for most people, it is far more difficult and demanding to be the carer than the caree. Being ill is the easy bit.

 

[weftandwarp]

I forgot to add in my original post that, for most people, it is far more difficult and demanding to be the carer than the caree. Being ill is the easy bit.

I'm not sure that is true. I always tried to devolve my responsibilities while caring at home. I had so many services come in. They checked what I was doing and were always happy. They were all free. It helped focus attention to the problems and not on me. It made it so much easier. Funny thing was I often had more care qualifications than those who were checking. For me the most difficult time was after she passed. The doctor went through things with me and I found out a lot of things I wished I hadn't. I think you would be a wonderful patient. I love it that you have an interest in more than just you. That really is precious.

All the best.