I hate this life

[Toxed]

@PatJ Our lives were as complicated as this disease when I went down. They're still complicated. Have you ever heard the expression "... has an overdeveloped sense of responsibility."? That would be my husband. He's always had 14 irons in the fire. He is learning to cut back, but its slow. Sometimes I think part of him working so hard is that is how he deals with loss. Who I was, died. He feels helpless to do anything about my suffering, so he throws himself into jobs where he can actually help someone. Another part is that I can't receive SSDI, not enough terms, our insurance doesn't cover any of my treatments and we are hemorrhaging money to deal with it. We spend relatively little except for my medical expenses. I'm looking for a safer downsized location, but it has too be the right one. They're hard to find. No point in jumping into the fire. Thanks for asking, though. <- you

 

[SickOfSickness]

Generally, a true statements is something like, "It's very difficult to find a friend when I have all these symptoms, limited energy, and so few opportunities to meet people who understand."

I agree with you in principle, but I am saying this based on years of analyzing my situation. I agree that most people with ME/CFS have a possibility of finding friends, with a lot of difficulty. I am saying that I cannot have real life friends because I became ill so early, have almost no interests that people can related to, have emotional baggage, have other psychiatric things going on, that I am basically housebound, and for many other reasons I didn't go into.

Also, a big problem is I'm now too scared to try (and don't have time).

Friendships should not be so strictly quid pro quo. Yes, a friendship should be give and take, but it is not a business transaction where everything must even out in some precise way according to favors done and favors received.

I agree to an extent. I think it's possible to find people who give without keeping score. Also I don't necessarily need anything from the friend except for them to understand that I can't drive to their house, and things like that. However, where I disagree is that it means I can have friends. When people give, and don't expect something back, they at least expect to feel good about giving. It can be as simple as words of appreciation, but I believe I'm unable to give this "simple" thing to people in the right way. Unless it is an online-only friendship, which I said I could have but didn't feel it was enough.

I may be able to change someday. It still makes me feel very upset now, because I don't think I could change it in the next few years, and maybe never, because I think I would have to change more than the one thing. I don't want to give details on my psychiatric problems or baggage.

 

[SickOfSickness]

I want to reply to more posts, but I am limited in time

I feel you SickofSickness. You're not alone.
There are nights when I wish how nice it would be if I never woke up the next morning.
But don't give up hope. Nowadays I spend 90% of my able time researching everything there is about CFS... one day we'll find a cure...

Hugs to you. I am the same, most of my time goes to the basics of surviving or researching. That is one reason I have no time left for friends, and I have nothing in common with most people. Healthy people would not like always discussing this stuff. And ill people too. They don't want a friend who can only discuss illness. It's not what I want either. I feel it's impossible until I get healthier.

 

[Toxed]

I want to reply to more posts, but I am limited in time



Hugs to you. I am the same, most of my time goes to the basics of surviving or researching. That is one reason I have no time left for friends, and I have nothing in common with most people. Healthy people would not like always discussing this stuff. And ill people too. They don't want a friend who can only discuss illness. It's not what I want either. I feel it's impossible until I get healthier.

Same here. Today, in between reading these posts, researching, I'm dealing with gross symptoms. "Normals" don't want to even know about that. They don't want to be in the same room with someone struggling to survive crap. Thank God for online friends who can relate!

 

[ghosalb]

sometimes I wonder if those of us who live alone with this sickness could get together and live in one physical place e.g. same state or big town....will be cheaper, less loneliness, hopefully someone will be able to drive on a particular day, share rides...and most of all understand each other. Any thoughts....anyone ? Those who have families but feel misunderstood will be welcome too...haha. We can't just suffer like this....we have to find solutions.

 

[Toxed]

@ghosalb, Its a nice thought. The logistics are difficult. Everybody's sensitivities are different, and often conflict.

 

[MeSci]

I agree with you in principle, but I am saying this based on years of analyzing my situation. I agree that most people with ME/CFS have a possibility of finding friends, with a lot of difficulty. I am saying that I cannot have real life friends because I became ill so early, have almost no interests that people can related to, have emotional baggage, have other psychiatric things going on, that I am basically housebound, and for many other reasons I didn't go into.

Also, a big problem is I'm now too scared to try (and don't have time).

I agree to an extent. I think it's possible to find people who give without keeping score. Also I don't necessarily need anything from the friend except for them to understand that I can't drive to their house, and things like that. However, where I disagree is that it means I can have friends. When people give, and don't expect something back, they at least expect to feel good about giving. It can be as simple as words of appreciation, but I believe I'm unable to give this "simple" thing to people in the right way. Unless it is an online-only friendship, which I said I could have but didn't feel it was enough.

I may be able to change someday. It still makes me feel very upset now, because I don't think I could change it in the next few years, and maybe never, because I think I would have to change more than the one thing. I don't want to give details on my psychiatric problems or baggage.

Everyone has problems, imperfections, baggage, etc., some probably more unusual than yours. Some manage to keep them secret, others don't. I'm not trying to trivialise yours, just to say that you are probably not really so different from other people in the kind of person you are. Many people are lonely for many reasons, and they can be hard to solve.

Have you tried a few quick searches of this site using keywords from your areas of interest? I have found a wide and wonderful range of threads on very esoteric subjects, such as space, bondage, cats, dogs, epitaphs, guitars, music generally, birds, astral travel, knitting, jokes, absent-mindedness, US and UK English, books, Limericks...maybe yours wouldn't be so out of place?

I know you say you are very busy though - I have that problem too. Always too much to do.

I hope you can find a more peaceful state of mind. You seem to be in some anguish at present. I've been in something of an existential crisis for a couple of years, feeling rather lost and trying to find my way through it, figuring what life is for, what I am for, what I want, etc. I came upon one positive the other day - I am alive! Obvious, yes, but one often forgets that this is something to be grateful for, and which makes everything else possible (within one's capabilities, of course).

Hope I'm making sense!

 

[PatJ]

Who I was, died.

That's such a powerful statement. So much is lost with this illness. About five years into my health problems I went through an afternoon where I was feeling quite good. My personality re-emerged from the fog for a short time. I was talking with my sister, like we used to before I became ill. At one point she said excitedly "He's back!" I was... but not for long. Within an hour the fog and fatigue drifted back in, and my personality and sense of humor sunk away again. I went back to listening instead of interacting, focusing on facts and missing subtleties.

I had no idea she had thought of me being mentally gone. It should have been obvious but I was too brain-fogged to see it. Considering the poor treatment that many people have received from their families, I consider myself fortunate to have understanding and support from my mom and sister.

I'm happy to hear that you have such a supportive husband, and hope that he soon learns to slow down since he needs to take of his own health as well.

 

[Toxed]

@PatJ, Thank you. I'm finding it restorative to be on a page where people get it. I usually post on other pages to raise awareness. I figure if I can make a case to one person on a "normals" forum, I might get positive exposure to a hundred more. Then we will begin to see more understanding in the public.

I've been struggling with the loss for sometime now. My family sort of gets it, but more in the 'how its affected them' light. I feel robbed, abused, imprisoned and tortured for something I didn't do. I feel like the pesticide applicators have destroyed my life and extinguished who I was (I'm diagnosed with pesticide poisoning as causative to all my other symptoms). It makes me angry because the law won't protect me. I'm guessing, specific circumstances aside, thats how most of this group feels too?

 

[Raines]

Hi @SickOfSickness and everyone else on this thread.

I could have posted so many of the things on here, so much that I read and think yes me too, I feel just like that.

Real life friends, I'm not sure I have any. I joined this form (rather than just lurking) last year, this was me being more sociable, it's a good thing. It's all I'm up to.

Accepting how restricted this illness makes our life's is hard. Last week something small happened and I couldn't cope, I would be unrecognizable to the girl I was, the woman I am is nothing like the woman I thought I would be. It's sad and some days the grief for the life I should have had, or could have had is too much.

Also asking for favours or help is hard, but don't let it stop you.
My neighbours once helped me when a taxi let me down, now they always remind me to ask them before I book a taxi, and they really do want to help. They don't expect anything in return. They are just good people. I feel guilty everythime I ask but that's my emotional baggage talking. I know if I was well and had an ill neighbour I'd offer to drive them places and pick up shopping. So I suck it up and ask. Last week not only did my neighbour dive me to an appointment but he waited with me in the waiting room and drove me home too. I only asked for a lift their, and explained I would take a taxi home, to which I was told not to be so silly!

I'm lucky, to have people I can ask, and family who.do their best, I know I'm lucky for these things, but some days I want more. And then have to face the reality of what I can do with this illness, and just how much it's taken from me.

Fair weather friends don't last long when you have a chronic long term problems.

Love and hugs to all of you, my friends even though I don't know you and you don't know me, I know you we understand and sympathise and that's enough.

Struggling with my brAin and the touch screen today, so apologise for spelling mistakes and disjointedness

 

[ahimsa]

I may be able to change someday. It still makes me feel very upset now, because I don't think I could change it in the next few years, and maybe never, because I think I would have to change more than the one thing. I don't want to give details on my psychiatric problems or baggage.

I completely understand, no need to go into personal details.

I'm so sorry to hear that you're in this situation now. I'm glad you did not take my post the wrong way. I wanted to provide support, mainly. I posted the other suggestion about trying to avoid black/white thinking just in case it was helpful. It does not apply to all situations.

Thinking of you, sending healing vibes and support.

And more hugs ...

 

[PNR2008]

@SickOfSickness From the first I was interested in the name of your thread "I hate this life". Why THIS life and not my life or I just hate life?

As a child when I was hurt or felt no control, I also said "I hate this life". I wondered as an adult that maybe as a child I knew this life was one of many and not to get so fatalistic about just this life. Just food for thought but I made my life this life so I could deal with it better and get through just this one life.

I must say my life as a whole has been unlucky but who knows what could have happened to me and didn't because I was protected or wasn't meant to learn from very horrible sufferings. I am not writing this to say your and my pain isn't substantial, I know how badly this life hurts but maybe it's "just this life".

 

[PatJ]

As a child when I was hurt or felt no control, I also said "I hate this life". I wondered as an adult that maybe as a child I knew this life was one of many and not to get so fatalistic about just this life. Just food for thought but I made my life this life so I could deal with it better and get through just this one life.

This life proceeds moment by moment. I've had moments in life where I was so happy I thought I might explode, and moments where I have desperately wished to die. These moments have occurred in the same life, and my interpretation was based on my mood at the moment. Sometimes long chains of negative, positive, or neutral moments and moods will occur. For many people thinking in terms of moments can make life more bearable.

This life changes constantly, for good or bad, moment by moment. If I can make it through just the present moment, then I can make it through the next present moment. If the present moment is dismal and full of despair, then maybe the next moment will be a little better. If the present moment is one of happiness, contentment, or otherwise positive then it can be enjoyed for the moment that it is, trying not to worry that it can't last.

Moments never last. Enjoy the positive, endure the negative, and try not to cling to expectations of how things should be. It's simple to write but very hard to do.

 

[PatJ]

I'm finding it restorative to be on a page where people get it.

I've noticed that reading about what other people here have gone through makes my own situation lighter in some ways. It certainly helps relieve my sense of mental isolation. Restorative is a good way to phrase it.

I've been struggling with the loss for sometime now.

I had brain-fog and emotional flatness for many years. It's only the past few months that I've started to emerge from the fog and see that the past decade has passed by with me as a confused observer. I can relate about the sense of loss and hope you are able to adapt to the present and look forward to a brighter future.

I feel like the pesticide applicators have destroyed my life and extinguished who I was (I'm diagnosed with pesticide poisoning as causative to all my other symptoms). It makes me angry because the law won't protect me. I'm guessing, specific circumstances aside, thats how most of this group feels too?

I think I would feel the same if I had a certain cause to point out for my condition like you do. There are so many chemicals in my life that I didn't ask for, or even know about, and so many (maybe even all) of them aren't necessary. I think far too many lawmakers represent company interests instead of consumer interests.

The only reason I have had any improvement in my health is because of my own efforts and the generosity of people who have shared their own experiences and knowledge about this condition. For so many years I had no idea what was causing all my strange symptoms. I was shuttled from doctor to neuro, to psychiatrist, to neuro, to opthalmologist, to neuro-opthalmologist, to neuro... from one medication to another. On and on.

Erica Verillo's excellent book about CFS, and the consensus documents helped me to self-diagnose CFS because it seems to be the only condition that includes all my symptoms. Next will be working with my doctor to get some comprehensive testing done to look for possible causes and arrive at an "official" CFS diagnosis. Before that, I need to overcome my current problem of being mostly bed-bound. I can't stay upright long enough to make it to the doctor. Sometimes CFS feels like one step forward, two steps back.

I feel disillusioned about the politics of CFS/ME, disappointed with corrupt research (PACE trial), wasted money, idiotic diagnoses, and medical cluelessness. At least there is some hope in that more doctors and researchers are taking this illness seriously and making a little more progress every day toward useful knowledge and treatments.

 

[MeSci]

Erica Verillo's excellent book about CFS, and the consensus documents helped me to self-diagnose CFS because it seems to be the only condition that includes all my symptoms. Next will be working with my doctor to get some comprehensive testing done to look for possible causes and arrive at an "official" CFS diagnosis. Before that, I need to overcome my current problem of being mostly bed-bound. I can't stay upright long enough to make it to the doctor. Sometimes CFS feels like one step forward, two steps back.

Can't you get a home visit? Or don't you like the idea?

 

[PatJ]

Can't you get a home visit? Or don't you like the idea?

My doctor has 3,000 patients. He's frazzled at times from having to deal with so many patients, although some he probably doesn't see very often. He also has to deal with other doctor's mix-ups or poor diagnoses.

We've got a chronic doctor shortage where I live. Most people get very short in-and-out as soon as possible appointments. There's no chance of a home visit. At least my doctor is one of the good ones who really cares about his patients. Hopefully soon I'll be able to stay upright long enough to see the doctor, and go for blood tests. In the meantime I'll keep researching. My mood is good most of the time, and I don't have to deal with chronic pain, so I'm grateful I'm not worse.

 

[Toxed]

. Hopefully soon I'll be able to stay upright long enough to see the doctor, and go for blood tests. In the meantime I'll keep researching. My mood is good most of the time, and I don't have to deal with chronic pain, so I'm grateful I'm not worse.

I used to have to have my husband drive me and the phlebotomist would come out to the car, I'd stick my arm out the window and they'd draw it like that, as an accommodation.

 

[PatJ]

I used to have to have my husband drive me and the phlebotomist would come out to the car, I'd stick my arm out the window and they'd draw it like that, as an accommodation.

Drive-by blood sucking. Nice option to have. There are two places in my city to have blood drawn: the hospital and a health center. I doubt that anyone at the hospital would come out to a vehicle but someone at the health center might. Thanks for the idea.

 

[taniaaust1]

All I can say is finding a good friend with this illness is incredibly difficult. I don't expect to be front and center but if someone has a family you are at the bottom of the list even if you get along with them, then you get pulled into family drama's which is the reason I stay away from my family.

Once I visited a friend in the hospital drove there, walked the long halls and when I saw her, her son called and they talked for an hour. Yes he works and is in another country but they talk 3-4 times a week anyway. Soon I felt like a fixture.

Little by little my value seems eroded and I wonder why I hung on so long.

I think one of the issues is that non very ill people just aren't aware of the HUGE efforts we have to put into things to do them.. even something most view simple.. a visit to a friend in hospital. We often appear to be giving out very little but that little is huge to us.

 

[taniaaust1]

Of course they will always prioritize their children, grandchildren, spouse, sister, mother, etc. This hurts me so much and I need to rant about it, because when you say friends move down the ladder, I think they usually move so far down that they are not even on the ladder, unless it was a best friend, where they felt we were "like a sister".

For example, for their child they would re-mortgage the house, sell their second car, stay up all night at their bedside, etc. I keep finding these people won't even lend me $30, drive me somewhere, etc. They won't even do one thousandth for me.

Then again, I don't think I deserve it anyway, because I have poor skills with people, and I probably never did them a favor, or it was so long ago or so small that they forgot.

But that gets me so mad too. They think the favor I did them was not much, but for me it was a lot. Nobody thinks of it that way, usually. Like, I picked them up something. They think that was no big deal because it's not a big deal to most people. Most people that was maybe 1/500th of their energy that day. To me it was like 1/25th of my energy. So then when they did me a favor that used 1/25th of their energy, they are feeling like I do nothing in return.

Someone who is healthy, if they were reading this, would think that I was complaining about something little. It's not little, because favors like that seem to be the currency of friendship. I'm broke and I can only offer a few small things.

I think sick people, if we are poor, can only do certain things. We can listen and help them with encouragement. But I feel that the listening gets undervalued. They would feel it's nothing compared to them bringing me food. Now they feel like I owe them.

What dooms me the most is that I'm not even good at the emotional support. I try and sometimes I'm good enough, but I also say the wrong things a lot, or can't say anything at all. So now I'm not as good to be around as their other friends, because I am bad with words.

There are a few other ways I try to help people, and half the time they appreciate those things, but I feel like the currency is a good analogy. My currency is worth so much less to them, when I don't think it should be, but everyone seems to think so, besides me.

Also, another things that gets me upset. Some of these supposed friends not doing small things for me, I said above I don't think I deserve it. That's partly true. I mean I don't think I "earned" it with friendship currency. But I think I deserve it because I'm a human being, and I don't see how these people can watch a fellow human struggle like that. Especially if they claim to be a friend. They'd probably help a stranger, but I feel a lot of the time they don't help me. In fact I know that two of these people were doing volunteer work, helping other people by doing free labor. But they wouldn't like helping me as much, I'm sure.

I don't think I'm being too hard on myself. It's the reality. I have seen over and over how people do not think what I offer is worth as much. Maybe I will find "better" people somewhere someday.

(I do have one understanding ill online friend.)

I'm sorry for ranting on. I think it helps if I rant about it.

Now I'm too scared to even try friendships, even online friendships are hard to keep up with. I hate when other people complain, and don't want to do anything to change their circumstances, but I'm so tired right now.

I am too busy handling some really bad things in my life too. I wish I could just pause life for a while. I wish I could go into a coma, but without having lost some of my things when I wake up.

Hi SOC. I felt very sad reading these posts of yours. You are a great person and I hope you can keep seeing your own value. You completely deserve "good" friends.

It's hard, the normal don't understand us and the very sick often don't have much energy at all to put into friendships, I've lost contact with lots of people I could of been friends with other the years online. I also know I would of made some very good friends here if I had more energy to give out.. rather then often having to seek out myself so much emotional support for what Im going throu.

I still haven't gone through most of that thread which was created when I was in jail, too little energy so I wouldn't even know who was thinking of me and sending their good wishes. It's no wonder we struggle with friendships due to being sick.

That part you said about others, ones people may call friends being more willing to help a stranger then help us, in the past Ive found so true. Once again its obviously cause they just don't understand this illness we have, most of us would be helped more if we had something such as cancer then what others see as a just a "fatiguing" (everyone gets tired) illness.