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Alone in a Sea of People

Do you ever feel alone, even when you are with a crowd of people? I feel that way so much now. No one understands.

My friend and her daughter picked me up for dinner tonight. And her sister in law joined us, but even so, I felt alone. Totally and utterly alone. None of them were in the amount of pain I was in. None of them understood how hard it was for me to be in that restaurant with all the cognitive problems I've got. They really just don't get it that I really am that sick.

There's a difference between sadness and depression. I'm very sad. Everytime I go out, I see all the people in the real world doing normal things that I can never do. I can barely move with the amount of pain I'm in now. Anything I do, I pay in spades for it and it's never, ever worth it.

Alot of things have been happening lately that just make me want to cry. And worse. I don't know how much longer I can do this. And the people here, where I live, they aren't nice to me. None of them have this disease, and since I don't look sick, they think I'm being stuck up for not socializing or whatever. I'm too sick.

I haven't been well enough to live in the real world for a very long time. And it's so cruel when I do go out and I am faced with what the real world is, knowing I am no longer a part of it. The sad truth is, you wouldn't keep a pet in the state I am in.

I feel like this dead thing that people keep trying to get moving, but it doesn't work. You might as well be dragging a corpse around. You can't take something dead and make it work, it doesn't work.

They took me out tonight because they feel sorry for me. The few who know I'm sick do. Well, that just makes it all the worse. Because I'm someone people feel sorry for. The sad, pitiful person. Makes me wish I was dead. Death would be preferable to all this.

The truth is, I don't want to be here anymore, in a world I cannot participate in. And it's getting harder for me to stay. The only reason I have left is my cat. Beyond that, there is no other reason for me to stay on this planet. Everything is gone.

I have no other place to speak of these things. But this is what's going on with me right now. I've had this disease for nineteen years. And I've really had enough. Watching each piece of my life being ripped away, until it's all gone, nothing left.

I'm all out of tomorrows, the sun will come out tomorrow, tomorrow is another day, yeah, whatever. Each tomorrow is filled with just as much pain and suffering as all the others. I want it over, one way or the other, I want this over. I'm tired of the pity from the few that know me. I'm tired of being judged. I'm tired of not being understood and people being mean to me. I'm tired of being in pain and hell every day. There has to come a point where enough is enough. If I'm not allowed to participate in the world, then just let me go. But don't keep me here like this. It goes beyond cruel and unusual punishment.

Comments

silicon
Dear Carrigon,

I am overwhelmed with the depth of your pain. I feel that any words of support I can offer are trivial in comparison. You seem very courageous and real. I feel it would be a great loss to lose you, although I would understand if it came to that. I sorely wish I could offer you some hope. Ill be praying and thinking of you. You may be alone in your pain, but this community values who you are, your experiences, insights and feelings.
 
Misfit Toy
What silicon wrote is really nice. I myself want to say something too, but am struggling here. I know that when I am really sick, as you have even heard me really sick from blogs or emails, everything looks negative. Everything. I can't see the forest through the trees. That is what you are going through. In those times, the only thing that makes me feel better is reaching out to others who are ill. There are some who are so ill, they can't even type a response to your blog. Look at how many people read these blogs and say nothing. I don't think it's because they can't relate, they are too sick. Carrigon, in most of your blogs I feel this deep dark sadness like you say. You are wrapped up in sickness and I am not saying that meanly, I am saying that this illness is coloring your view. Please try to fight it. No matter what, this illness can't take your soul. Your soul is intact and you have to fight back...even if only mentally while lying in bed.

Your friends who took you out, they don't pity you....or maybe they do, but they are loving in taking you out and trying to make you feel a part of the world. If you stayed home, it would be no better because then you would be wanting some "people" around.

I have felt many times alone. Only we can know what we are going through and it's awful.

I guess what I want to parlay more than anything is, please don't give up hope. I feel that that is what I am hearing. That little morsel of hope, can make the bleak not so bleak and you never know, something may get better. Don't give up!!

You are loved. I so understand your pain though, I have felt it so many times. So many. I will pray for you. I am not an overly religious person, but I do believe in prayer and HOPE. A higher power of positivity. Sometimes when I am so sick I demand that God listen to me. Sometimes I even ask him to take me. He/she never does and the sun does come out, even if only for an hour.

Thinking of you.
 
jimbob
carrigon, I know how you feel. I've had nervous breakdons in the past where I didn't know if I could go on. nobody around me has a clue what I'm going thru. you have to find a way to hang in there and see what comes of this new finding. devote whatever energy you have to only things that bring you pleasure, that's what I've tried to do. you at least have people here who understand and care about you.
 
starryeyes
I understand how you feel Carrigon. You've had more than your share of bad stuff happen to you. I don't know why but I believe it's all for a purpose in the end. Please hang in there and know that you have many of us here who care about you.

((((Hugs))))
tee
 
Victoria
Sorry to hear of your deep pain (both physical & mental).

When I had a nervous breakdown in 1998, I certainly felt something of what you're expressing in this Blog. Life sucks. Pain seems relentless. No matter where you turn, you can't see any path out of the Maze. In your subconscious, you know there must be a path, because the outside world uses that path everyday.

But in your reality, you can't see anything but darkness. It may seem as if every path leads to a dead end.

But I can assure you that a path does exist. Like the sun on a cloudy, wet, miserable winter day, it can't be seen, but the sun is still there. The Sun shines in another part of the earth today.

Just as, one day, it will shine on your side of the earth. This belief in a sunny tomorrow is what keeps all of us going.

If you didn't have a reason for existence, you would not have found the Phoenix Forum.

You are very fortunate to be able to type & share your inner thoughts.

You have a voice.

Think of those who can't can't do this. How alone & fragile they must feel.

In my deepest, darkest moments of the past, and there were many, this is what pulled me though the nights of pain & despair.

Thoughts of those worse off than me.

This may not comfort you, but thoughts of those worse off gave me the strength to keep on, keeping on.

So, today, I am here listening to you & sharing your pain.
 
vdt33
Carrigon, I have been where you are many times and will probably be there many times in the future. Like you, I go to bed so many nights and pray that I will not wake up the next morning. In better times, my attitude is I am going to fight this illness and people's ignorance in any way I can. As the poet said, "Do Not Go Gentle...".

Never doubt that we are all under attack by people who are in denial, and we are severely affected by it. Scientists with a morbid fear of illness and weakness and the unknown are threatened by the existence of mysterious chronic illnesses, like ME/CFS. They are compelled to persecute the chronically ill. They have a God complex. Other scientists have to protect their theories and reputations and that of the institutions they are affiliated with. A new theory is a threat to other scientists' theories and to old ways of thinking.

It is not your fault that you are sick. I know you are isolated much of the time, but you are not alone. I read that half the people in the US have a chronic illness of one kind or another, and the number is growing.

Wishing you better times,

vdt33
 
Carrigon
I'm not as suicidal as I was when I wrote that, but it will always be there. It's been there for years now. Just waiting.

So many people have such a hard time believing that you can be perfectly sane and still want to off yourself. But there comes a point when the torture has to end. This is one of the cruelest diseases I have ever seen. And i have seen alot of things. The difference is, people who have what we might consider worse things, well, they get support and love and they don't get treated like we do. And often times, they can even have ten times the life we can. Those of us who have CFIDS/ME severely, we got a horrible living death sentence. We get to be dead, but not. We get to watch every part of our lives ripped away from us until there is nothing left. But still, we aren't allowed to die. We are forced to live as ghosts of our former selves, barely able to haunt anyone's life. Most people would rather be dead than to be this way. And to deal with the treatment we get from everyone, like we aren't even people anymore.

I have to stay now for my cat. I can't trust my "friends" with her if I die. They already ruined one of their cat's immune systems taking her out of the country. I'm not letting anyone hurt my cat.

That was why I made sure to have cats all these years, because I knew without a pet, I'd have no reason to stay. Coping mechanism. People always wonder how those of us who have had this for so long have stayed alive, well, that was coping mechanism number one.

There are other things, disappearing into the internet. That helped for years. But not so much anymore.

Basically, I just want out. Had enough. I'm tired of the whole thing. I'm not even what anyone would call depressed. I'm totally sane here. I just want this to end. It's that simple. The true reality, no matter how many people try to lie or deny it is that those of us who have this severe and are long term, it doesn't go away, there is no out. There is no cure. Call us a subset or whatever, but for us, there is no out. Maybe someday with immune modulation, but that day is far off, too far off.

There is no real solution. And I'm just sick of it all, including never being allowed to tell anyone how I feel about this. Like it's a taboo subject.

I just want out. Sometimes I think that's the test, you know. How much torture and pain and humiliation and loss can a person take before they finally do themselves in. It makes you wonder. I am stronger than most, I've had to deal with this for nineteen years, longer if you count the years I had just the fibro symptoms. But trust me, after nineteen years, anyone would be tired of fighting a battle they cannot win against an unseen enemy. The cheerleader in me is dead and I'm barely carrying this flag now.
 
willow
Oh Carrigon, I don't know what to say that has any worth.

I completely understand how you can be totally sane, not depressed and yet so utterly emptied and exhausted from the mental, emotional and physical effort of daily living with this that the desire for An End, A Release becomes overwhelming.

I've been ill for over 30 years. Maybe I'm the crazy one but I continue to hope for a life that is better than the one I have now. I know we all have a different mix of symptoms but I can't even have conversation with 2 people at the same time. Going out for a meal with them is off the scale. Just saying that because maybe, just maybe, it suggests you have more in the tank than it seems. And if so how would you be able to harness that to best effect?

3 years ago I was in a place similar emoaional to you. My pain and desire for An End were all consuming. Thankfully symptoms are not as bad as they were then. This gives me hope, and most days, most weeks The End does not make it to my wish list. I wish the same for you too, that you see positive signs, a hint that there is something to build from.

Hang on to that flag.
I send you my love but wish I could do more.
 
LazyLizard
Hi Carrigon,

I am on the same page with what you say. You can purely logically get to the conclusion that you had enough without being depressed. I guess this is something doctors and psychiatrists wouldn't accept either. Who's surprised!
You've done right putting it all out here like it is. No room for taboos here.
I've had CFS for 9 years now.
I also adore my cat. She's so quiet. The only creature that doesn't stress me out. She comes for a cuddle session and get's some purring done. Wonderful! I am even thinking of getting a second one. Would that be something for you?

Best Wishes
 
Carrigon
Where I live now, you are only allowed one pet. I have had cats my whole life. I always had more than one. But, unfortunately, things went to hell several years ago. Two died, cancer and disease, a third there was another problem with and I lost her, as well. I ended up with just the one. My mother took in several after that, but when she passed away, I had to give them to a farm. I couldn't afford to take care of that many and wasn't physically up to it. And then I had to move into this place that only allows one.
 
T
:hug: HUGS
thinking of you and feeling the same.
at least here we have friends who understand.
keep strong
 
J
Hi Carrigon:
I have felt your pain and despair and frustration through your words. I have at many times over the past 30+ years, thought the same thoughts as you speak of. I have a son named Blake who is ill with CFIDS as I am. It is for him, my animals and my future plans for advocacy to further progress for our illness that keeps me going. I honestly believe we are closer to an understanding of our illness, the etiology and viable treatment options than we have been in 30 years. I hope to keep fighting for justice and progress for us as patients...and I pray when I look around.....you will be there as well. What is your Cats name? WE have wild cats that are born on our ranch......They are survivors and sweet as well.......I learn much from them.....
 

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