There is no life

[Carrigon]

Tonight, I had to fill out a bunch of security questions for a site. And all the questions kept asking about all these life experiences that normal people would have had, but I haven't had any of them because of this disease. Lots of questions about marriage and honeymoons, your first child, work questions, your boss's name, your first house. Just lots of stuff where it went on and on.

And I was sitting there like, well, I haven't worked in over twenty years, I haven't gotten married, I can't have kids, and I've lost houses. I really didn't know what to answer to anything. But it was very upsetting to see the normal things in life that I haven't gotten to do because I've been chronically ill for like half my life. It just really hit home, what this disease takes away from you. There is no life. None. All the normal experiences people do, for those of us who have this severely, there no life.

 

[alex3619]

Hi Carrigon, We are Xombies in a Twilight Zone, and the alive people are zipping around us doing things beyond our ken

We have a life actually, its just one that is highly abnormal, highly unsatisfying, and full of pain and suffering. We do have options though - we can give in, wait for something to happen, or do what we can, no matter how small or seemingly insignificant, to hasten the day when we can be made well again.

I choose the last option for now.

Bye
Alex

 

[pamb]

Hello Carrigon,

What can I do but send you a (((Big Hug)))? It is indeed very hard to be living such a different life from what one was raised to expect and sees all around.

Alex has stated it so well there is nothing more for me to add, except encouragement to hang in there awhile longer while science sorts out what this is all about. I am totally amazed at how far the science has come in the last few years. The SoK meetings truly gave me hope that eventually more will be understood - and that eventually is NOT 10 or 20 years away.

We must just stay visible and do what we can to support the many scientists who are working hard on our behalf.

With Love,
Pam

 

[Sallysblooms]

Big hugs to you.....

 

[icalla]

All depends... how you define things... is that life? house, children, spouse, work, honeymoon?
Life is so much more than that, and just because you don't have those things doesn't make it worthless.

Our lives may be harder than most, and may be more limited than most, but we are still valuable, we still make contributions, and we are still loveable.

I sympathize with the harshness of the reality that hit you. I send you lots of hugs, and hope you are able to see past the cultural symbols of success and through to your innate value as a living breathing human being.
((((((hugs))))))

 

[Carrigon]

I think what bugs me the most is, I want to know why. I want to know why I was not allowed to have a normal life. Even if I don't like the answer, I want to know why. And I don't think I'm really going to get an answer while I'm living.

There are many things I've done since becoming sick that I never would have done had I been well. Would I have been happier having it all? My cousin had it all, marriage to a rich lawyer, kids, mansion, expensive cars. But guess what, she cracked like an egg. She spends her days going to shrinks.

I spent alot of years enjoying my non paying work. But I threw myself into it to help take away my suffering from this disease. And every once in awhile, when I get slapped in the face with all the things I can't have and can't do, it really sux. A part of me does want those things, but there's also a part of me that wants freedom. I still would have liked to have had the choice to do as I wanted. Even little things I miss like going to parties and dances. I haven't been able to do them in twenty years.

 

[Nielk]

You have a right to feel shortchanged in life.
It's a very normal feeling under your circumstances.
The fact that most of us feel losses and grieve for some normalcies in our lives doesn't help your own pain but, the fact that we care about you and very well understand it, should bring some comfort to you,

I had the chance to get married and have children and then got sick, I do feel lucky that I had these experiences, yet I feel very bad that I am affective all of their lives. I can't be what they want me to be and feel I am a great disappointment to them. Moreover, I feel like I am just a big burden for them to deal with.

As you see, we all have to deal with the package we have been handed. It's hoe we react to it that matters.

You can't go down the road of asking why bad things happen because it's an endless road.
Why do young children die?
Why young men and women die in wars?
Why can't there just be peace on earth and health for everyone?

We are where we are and we each have an intrinsic value in this world.

I had a baby who was born with a heart defect who lived for thirteen months. Thirteen agonizing months where we were in and out of the hospital and I had to watch him being in constant pain.

After, I almost lost my mind, going through all the questions you are asking until
I realized - where are these questions going to lead me to?

What I have to do is the best I can under the circumstances.
I know that my whole community, while we were going through this pain, were holding their children and appreciating tht they were healthy. They probably showed more love then they normally would have.

I'm not writing this very personal story because I want or need sympathy, I just want you Carrigon to try to appreciate the small things in life.

The fact that you show support to others on this forum is a tremendous good deed.
We don't know how God judges us. I know though that small gestures of love, encouragement and support are all great deeds.

Wishing you all the best an hugs,

Nielk

 

[taniaaust1]

Sending you ***hugz*** we do all miss out on a lot and it can be harsh when we really think about it.

When I start going there too much in my head I try to change my thoughts to... how many people in reality have a perfect life??
Not many do.. there is the friend who is infertile desperately longing for a baby but cant have one or the person who has split up and has no home.. or the person who may look like they have it all but behind the scenes is actually being abused or the one who had to quit school early to help raise a child or help support family and who had to leave a huge to them dream behind too. These are all normal people and actually in reality normal lives.

Its hard to find Perfect people with a perfect life thou many will look like that to an outsider. Normals often look at us with their outside eyes trying to look in at us, and think we have it good!! What do they sometimes see.. people who get to sit at home all day and not work? Its crazy but some are envious of us.

Yes we have more issues then most do but in reality nearly all in life are lacking something or wishing for something better and feeling like they've missed out in some way. Maybe we've more had a chance to really get to live life in a deeper kind of way by experiecing all we do (thou a lot of it arent nice).

Hope you have a better day emotionally soon.

 

[justy]

Hi Carrigon, this deep pain and grief that we feel at the loss of our lives and dreams hits me over and over and i am one of the lucky ones who does have a family and people to share my life with.

I think ity is healthy to allow ourselves to grieve our losses, it is one of the things that joins us together. I hear you and i know it hurts. For me it usually passes and then resurfaces someway down the line, and always i find, as you will the resources to deal with it.
I am so grateful to you for always being one of the people who takes the time to read and reply to my posts when you have so much to deal with yourself.
Sending hugs xx Justy.

 

[*GG*]

Nielk,

"I had the chance to get married and have children and then got sick, I do feel lucky that I had these experiences, yet I feel very bad that I am affective all of their lives. I can't be what they want me to be and feel I am a great disappointment to them. Moreover, I feel like I am just a big burden for them to deal with."

What do your children want you to be? Are you sure you are a dissapointment to them? Hopefully your family does not consider you a burden, you will be gone some day(like all of us), and none of us know how our lives will turn out!

Hope you and all the mothers on this site had a good Mother's Day!

GG

 

[Waverunner]

I think what bugs me the most is, I want to know why. I want to know why I was not allowed to have a normal life. Even if I don't like the answer, I want to know why. And I don't think I'm really going to get an answer while I'm living.

The answer to your question is bad luck. Bad luck is why we have this illness. Let's suppose 10 out of 1000 get severely ill (we have so many viruses, genetic defects and other illnesses, so the ratio probably is much higher). And lets suppose that 1 of these 10 gets inflicted by an illness that affects brain and body like CFS does, leading to that person not being able to live a normal life. This one person will at least once in a while ask the question why he got ill. So the why question will always come up, no matter who got ill. If it wasn't you who had CFS, another person would have it and would ask the same question. And why do we have CFS? Well either we were at the wrong place at the wrong time (and got infected by a virus) and/or we have some genetic defect or other reason that lead to CFS. We cannot answer the why question yet but science will answer it sooner or later. The problem of course is that humans very often are not able to the see the wider perspective. They like to have things easy and small and only see their perspective. They see that they are ill while others are healthy and they ask why, while the answer is very rational. If someone broke his leg after a car accident and asks why his leg is broken, we easily can answer: Well, your leg is broken because you had a car accident. With CFS it's much more difficult because we don't know the reason (it's not so obvious as with a car accident) but it's the same principle.

 

[soxfan]

I became sick in my 40's and my kids were already through college and living out of state. I feel extremely lucky and blessed that I didn't get this when they were still growing up living at home. I would have missed out on basically their entire childhood activities. I feel lucky that I was able to have a normal family life and spend all that time with the boys at the ballparks, football fields, karate tournaments, vacations etc...

I do ask myself why I became ill suddenly when I was at the healthiest ever..why do I continue to decline after 7 years..why I can't go on vacations with my husband.
In 15 years I will be 70 and even though I should think of only the moment I do think about that and how FAST those years are going to go by. I am worried that I will be like this or worse and then my life will be over.
Instead of asking why I am more afraid of science not finding an answer in time. My heart goes out to all of us here no matter how long we have been sick or what condition we are all in. I feel that I am lucky than most because I can still drive, go for walks, grocery shop, on the days when I am able.

I had to quit my job yesterday that I have had for 19 years because now I can handle the PEM that comes afterwards. I have held on to my job for 6 years by a thread but my body can't handle the mental stress of it. When I am working I don't know my brain is struggling but afterwards I suffer horribly..It is a job that I truly loved and my coworkers were great
So I am very down and sad today and yes at times I do wonder why me..

 

[Nielk]

Nielk,

"I had the chance to get married and have children and then got sick, I do feel lucky that I had these experiences, yet I feel very bad that I am affective all of their lives. I can't be what they want me to be and feel I am a great disappointment to them. Moreover, I feel like I am just a big burden for them to deal with."

What do your children want you to be? Are you sure you are a dissapointment to them? Hopefully your family does not consider you a burden, you will be gone some day(like all of us), and none of us know how our lives will turn out!

Hope you and all the mothers on this site had a good Mother's Day!

GG

Even thou my children are married already and out of the house, they all live in my neighborhood. Before I became ill, I was a big part in their life. They would come over on week-ends and I would cook and he would have meals together. I would watch my grandchildren. Go shopping with my daughters etc....

Now, I can't invite them over. Sometimes they ask if they can come and I cringe because I don't want to say no and really I want to see them but, It's torture when they are here. The noise level, the having to converse, play with the grandchildren, give advice to the children all these normal everyday things that other women my age enjoy, I cringe and just want to crawl in bed in a cocoon. There are times that I tell them not to come because I'm too sick and I can sense their disappointment. They don't actually verbalize it, it's just a sense that I have. Yes, they have a mother but I might just live on the moon - that's how I perceive it. It's like someone telling you that he is giving you a Rolls Royce - it's all yours but, you can't take it out of the shop. You can pass by, get a glimpse of it, you can even occasionally go into the shop and touch it or even sit inside but, you can never take it out of the shop for a drive.

 

[*GG*]

I had to quit my job yesterday that I have had for 19 years because now I can handle the PEM that comes afterwards. I have held on to my job for 6 years by a thread but my body can't handle the mental stress of it. When I am working I don't know my brain is struggling but afterwards I suffer horribly..It is a job that I truly loved and my coworkers were great

So I am very down and sad today and yes at times I do wonder why me..

Sorry to hear about your career, hopefully you get some of your health back now!

GG

 

[ixchelkali]

I had to quit my job yesterday that I have had for 19 years because now I can handle the PEM that comes afterwards. I have held on to my job for 6 years by a thread but my body can't handle the mental stress of it. When I am working I don't know my brain is struggling but afterwards I suffer horribly..It is a job that I truly loved and my coworkers were great
So I am very down and sad today and yes at times I do wonder why me..

How wonderful that you were able to have a job you loved for 19 years! I know a lot of healthy people who have never had that. I can see why you're feeling sad today that that chapter of your life has come to a close. I hope that the rest you'll be able to get now will mean that you'll be able to enjoy other things now.

There are times that I tell them not to come because I'm too sick and I can sense their disappointment. They don't actually verbalize it, it's just a sense that I have. Yes, they have a mother but I might just live on the moon - that's how I perceive it. It's like someone telling you that he is giving you a Rolls Royce - it's all yours but, you can't take it out of the shop. You can pass by, get a glimpse of it, you can even occasionally go into the shop and touch it or even sit inside but, you can never take it out of the shop for a drive.

I wonder if that's what they're feeling or if it's what you're feeling. I wonder if maybe what you're hearing is their concern that you're so sick and their helplessness to do anything about it. Have you ever talked to them about it, told them what you sense and asked if that's how they see it? Sometimes a person's illness can be like the elephant in the room that nobody wants to talk about, for fear of hurting someone's feelings, or because of guilt. Sometimes people feel angry about it but don't think they should, because it's not something anyone did on purpose. Talking about it can help clear the air and let people know it's okay to feel, well, whatever they're feeling about it. It can clear up unfounded assumptions, too.

It's important to remember that however your illness affects your loved ones' lives, it's not "because of you." This illness just happened. You're the one with the symptoms, but it happened to your whole family, and IT'S NO ONE'S FAULT.

 

[Nielk]

I wonder if that's what they're feeling or if it's what you're feeling. I wonder if maybe what you're hearing is their concern that you're so sick and their helplessness to do anything about it. Have you ever talked to them about it, told them what you sense and asked if that's how they see it? Sometimes a person's illness can be like the elephant in the room that nobody wants to talk about, for fear of hurting someone's feelings, or because of guilt. Sometimes people feel angry about it but don't think they should, because it's not something anyone did on purpose. Talking about it can help clear the air and let people know it's okay to feel, well, whatever they're feeling about it. It can clear up unfounded assumptions, too.

It's important to remember that however your illness affects your loved ones' lives, it's not "because of you." This illness just happened. You're the one with the symptoms, but it happened to your whole family, and IT'S NO ONE'S FAULT.

You are right. I never talk to them about how they feel about my illness. I just feel that I know them so well that I can sense what they are feeling. I Might be wrong though. I'm pretty sure that they don't feel anger toward me and that they feel sorry for me. I guess it's more my feeling of letting them down. Logically, I know that it's not my fault that I'm sick. It's no one's fault. It's the reality of life. I guess I just feel very sad that (I feel) that I'm letting them down. It might be a good idea to discuss it with them. I think I''m afraid though. I'm not sure why. Maybe like opening an open wound. Or like if you don't talk about it, it's not there? I know the more I write the less I make sense. It might be healthy to have it out in the open. I would have to build up my courage and feel pretty strong otherwise I might lose it and just burst into tears and that wouldn't help anyone.
Thanks for your advice. I will definitely consider it.

 

[soxfan]

GG- I was only working a couple days a week at this point..my boss also gave me short shifts. I am not sure how to get well when I am under no treatmeat at all right now..I am feeling kind of lost.

 

[taniaaust1]

Nielk.. talk to your family about it all. On hearing how its affecting you.. they may decide to keep their visits shorter and hence make things much more better and more enjoyable to you.
Im also wondering if you are trying to run around after them when they visit.. instead of saying "would you mind getting yourself and I a coffee".

(((soxfan))) I can understand your sadness there.. I really loved the job I used to have too and was so sad to have to leave it.