I hate this life

[meadowlark]

But even when a friend has agreed to do something practical for me, and has told me to phone them when I need something, I can't bring myself to do it. I just don't like asking for favours. It makes me feel a nuisance. Anyone else have this problem?

I have felt this way in the past, and I go through periods of feeling it still. But I break out of it when I remember what a therapist told me--that everyone is always mentally writing the novel of their own life, that we all have decided on the ending, and we interpret events and shape our behaviour to meet the end we have decided on.

I used to feel like a nuisance, the way you do, when I asked for favours, but that's because I was looking at life as "and so Meadowlark passed away, friendless, because she made herself a nuisance." Therefore, I became terrified of being more of a nuisance than I already was, and shaped my behaviour accordingly. Self-fulfilling prophecy. (And I still have periods of being like this.)

But, in fact, there's no good reason for me to believe that other people consider me a nuisance. If I decide without trying that that is how other people will see me, I must think I'm psychic. And in actual fact, I'm not psychic. I'm just playing a mind game on myself.

It happened one day that a friend said to me, very clearly, "I don't know what to do, Meadowlark. Tell me how to help you." That was honest and direct. And so I forgot that "nuisance-barrier" in my head and told her. (My request: "give me a ride to the doctor, because I can't take public transit." She drove me.) Some people really do mean it when they offer, and want to act on any suggestion you make. Some people really do feel good when they do such things--why deny them?

The way I see it (and I can't know for sure), other people may think I prefer to be unhappy when they offer help in a general way and I don't follow up with a specific suggestion. They would be wrong, but it isn't helpful to let that idea get started in the people who like me.

It is true that some friends might say they want to do a favour, and somewhere, in the back of their minds, they don't really mean it. So if you sense that they resent you for following up on an offer to help you out, that is on them. They got what they asked for--a simple, human request. If they can't handle that, after setting up the situation, It is NOT on you.

It is miserable to be in this vulnerable position with other people. I find the loneliness quite unbearable. But where favours are concerned, don't throw out the baby with the bathwater. Give them a chance to do the right thing. A few people, here and there, may come through.

 

[meadowlark]

I think I have things to offer in a friendship, but healthy people are in such a different world. I think members here know what I mean. Well it goes farther for me. I also feel like most ill people are also in a different world from me. (I know many are worse than me. I am not bed-bound.) I think that many ill, even bed-bound, people are able to have friends.

I wish I could take all this pain away, SickofSickness.

I am "lucky," I think, in that I am 90% apartment-bound and maybe 35% bedbound, but my professional life was in publishing and the arts, the things they call "the life of the mind." So as radically as my life has changed, I can still read--much more slowly, but I do it--and I still write--as slow as a tortoise, but I do it. And I have friends who will talk to me on the phone about their efforts to do the same things. I realize that if my life had been more active, and if I had relationships that developed through sports, politics or nightlife, the effects of ME/CFS would have shaken those bonds. On the downside, almost no one comes to see me face-to-face. I live far across town from everyone who knows me. But sharing common interests, verbally, has kept some relationships alive, and that is my life-raft. When I am too sick to read or write at all, I fall into a very bad despair

It's obvious in your post that you are a thinking, feeling, valuable human being. You deserve love. You deserve to have friends, among both healthy people and people in pain.

This is going to sound really cliched (I usually sound like Pollyanna crossed with Dear Abby), but I have one friendship that began online through a mutual love of the poet John Keats. Not a lot of people are thinking about Keats these days, but we sure do. And that has become a very deep friendship; my friend actually got on a plane to come see me. But even if she hadn't been able to do that, what we have (via phone and e-mail) is essential to my well-being.

Is there anything you're crazy about doing, watching or reading, and can you find people who care about the same thing? I find that if people get interested in me because of one of my passions, or something I've written, they then become interested, and less rushed and judgemental, when it comes to the illness, because they see me as a whole person, not just a label saying "ME/CFS." And gradually, they've come to understand my lack of health about as well as a healthy person can.

 

[jimells]

Getting justice, legally, for what they've done to tens of millions of people with this infection, by denying it, and blaming us. Imagine the day, when this is exposed for what it is. That'll be a great day and it keeps you going imagining them behind bars, with their freedom taken away, as ours is now.

It certainly helps me to stay alive.

When I read about Sir Simon being pursued by "radicalized patients" I think maybe he is not just imagining this, but rather, he is haunted by the ghosts of dead patients. Like Jacob Marley, he has well-earned every link of those chains.

 

[digital dog]

I had a good sob the other day when I realised that I don't really have any good friends. I keep seeing those cheesy fridge magnets about friends and how they should be cherished and I grieve that I do not have the health to cherish a friend.

I do not blame any of them though; I have told the few friends I have that I cannot commit to anything, that I will probably have to cancel things and that I cannot do the things that they do (camping, socialising etc) and that I don't mind if they do not invite me to things as it makes me feel awkward.

Consequently, I have no one particularly interested in seeing me. I know that if I didn't contact my friends (four perhaps) by text, I would not hear from them for maybe six months. This makes me sad but compared to my other losses in life, it is not so dreadful.

It is so hard being friends with well people as we have to walk a tightrope in being honest about our lives and health and not seeming too pessimistic. No one wants to hear that i am STILL feeling as awful as I was ten years ago with an illness that many people think is psychological.

I've pretty much given up on friendships. I would love to meet someone who is ill and understands and who I can really be myself with but I only ever come across people who are fighting fit and couldnt even begin to understand how it feels to be sick for two decades.

Just another thing to grieve over.

 

[MeSci]

This is going to sound really cliched (I usually sound like Pollyanna crossed with Dear Abby), but I have one friendship that began online through a mutual love of the poet John Keats. Not a lot of people are thinking about Keats these days, but we sure do. And that has become a very deep friendship; my friend actually got on a plane to come see me. But even if she hadn't been able to do that, what we have (via phone and e-mail) is essential to my well-being.

Is there anything you're crazy about doing, watching or reading, and can you find people who care about the same thing? I find that if people get interested in me because of one of my passions, or something I've written, they then become interested, and less rushed and judgemental, when it comes to the illness, because they see me as a whole person, not just a label saying "ME/CFS." And gradually, they've come to understand my lack of health about as well as a healthy person can.

I've always liked Keats, and particularly like his appreciation of nature, which I also love. Shared interests are really important to me, and one aspect in which my current friends often tend to disappoint. So I am hoping to join organisations based on my interests when I finally reach retirement age next year and have some spare energy. Unfortunately (?) I am really passionate about campaigning on various issues, and have a tendency to be drawn into volunteering for things, thus ending up over-committed, too busy and knackered! I may meet people with shared interests through these, but it's too much like work, and they tend to be too busy too.

What I long for is people with whom I can share leisurely interests, who are also into a bit of campaigning.

It's hard to find kindred spirits in rural Cornwall - not many people to choose from, many people are too insular, and it's hard to get around if you don't have transport. Public transport is very sparse.

Of course, for the severely-affected this is all academic, I realise, when they may be housebound anyway. I really feel for those people.

 

[PatJ]

I had a good sob the other day when I realised that I don't really have any good friends. I keep seeing those cheesy fridge magnets about friends and how they should be cherished and I grieve that I do not have the health to cherish a friend.

I wonder how many of those fridge magnet producers have ever had the chance to learn just how many people are fair-weather friends? A true friend should be cherished, but it seems they are as rare as effective CFS treatments.

There are a couple of lines from a poem (by Katsumi Tanaka) that come to mind when I'm feeling especially desolate. I've never read a more concise expression of loneliness:

    I know that my true friend will appear after my death,
    And my sweetheart died before I was born.

I've pretty much given up on friendships. I would love to meet someone who is ill and understands and who I can really be myself with but I only ever come across people who are fighting fit and couldnt even begin to understand how it feels to be sick for two decades.

You're in good company here. A common theme in the thousands of posts that I've read on PR is that many people here understand, sympathize, and care. Some people really open up about how they feel. Reading about feelings, events, trials and failures makes this forum such a valuable place for all of us who have the sense that we're wandering alone in a wasteland. It's bleak at times, but if all CFS/ME sufferers came together in one physical place we'd have enough people to make a major city. We're actually surrounded by others who are searching for better health and helping each other along the way.

This forum helps me to feel less alone, and more part of a far-flung community of people who not only sympathize but know from direct experience the many ways that this illness can erode hope, strip away illusions, and basically beat a body to the edge of death but without the mercy of finishing the job.

 

[L'engle]

@SickOfSickness If you are like me, I was an introvert to begin with, so social interaction was always draining, though in a different way than it is now. I know people who are sicker than me physically but still have much higher social capacity. I think if you were exhausted by social interaction as a healthy person that gets magnified by illness, whereas for some who were naturally more extroverted they might be able to be chatty on autopilot even when exhausted. Not saying sick extroverts have it easy, just this might vary by basic personality.

I hate asking for help too! Can't stand it! But I think sometimes people like to be asked for help or advice on occasion because then they can also feel they are helping or making right in the world (this probably holds more for people who don't have kids or whose families are grown though). For me, when I imagine asking someone for help, it is hard not to imagine how exhausting the task would be for me so without even meaning to it becomes a big deal in my mind. It's hard to remember that healthy people's energy, while not unlimited, is not 'metered' quite so strictly as ours.

 

[ahmo]

@SickOfSickness Thinking of you today.

 

[MeSci]

It is true that some friends might say they want to do a favour, and somewhere, in the back of their minds, they don't really mean it. So if you sense that they resent you for following up on an offer to help you out, that is on them. They got what they asked for--a simple, human request. If they can't handle that, after setting up the situation, It is NOT on you.

It is miserable to be in this vulnerable position with other people. I find the loneliness quite unbearable. But where favours are concerned, don't throw out the baby with the bathwater. Give them a chance to do the right thing. A few people, here and there, may come through.

The problem is, because I can't see friends very often, I don't know them very well, so I don't know which ones would welcome being asked for help and which ones would resent it. Even a friend whom I don't relate to very well is better than no friend at all, and I have so few that I can't risk losing any.

And you know how it is when someone offers to help with something, and you know that it will be about as tiring to tell them how to do things and where things are as to do the things yourself. For example, people might offer to make a cup of tea, or a snack, or bring something from one room to another, or do some washing up, and you have to think about how to tell them where something is, and where to put it, and you have brain fog. Often they will put things away in the wrong place, and then you can't find them. It's sometimes easier to rely on your own auto-pilot.

Obviously it's different being offered a lift, e.g. to a shop, but people are so busy. And our own health is so unpredictable, and a friend might turn up and we are too ill to go out.

If I had the kind of friends I would like, they would understand!

 

[PNR2008]

Just to show you the way in which I am totally disrespected as I'm sure most of you are.

A few days ago I called my sister who has been helping me a little and I talked about how I couldn't control my pain. Of course I was in bed, in such a bad way I had difficulty talking when she got another call probably on her cell.

She left me on hold for ten minutes so I hung up and my sister called me ten minutes later to tell me the call was from her daughter-in-law thanking her for the zucchini bread she made for her and her son.

This daughter-in-law has shown her ugliness to me since she was 15 and dating my nephew ( now their oldest is 25 years old). She is a gossip, has to be involved in divorces, marriages, death and dying, every party planned and I had to put up with her mocking and trouble-making since I met her. It seems to make matters worse that I'm the youngest in my family and closer in age to my nephews and nieces than my own sisters and brothers.

Well back to my sister who was happy and upbeat when she called back to tell me how appreciative her daughter-in-law was about the zucchini. I told her that if she ever put me on hold that long without phone manners because of this person, I would never speak to her again. After years of abuse I meant it. Needless to say no zucchini bread came my way.

 

[ahmo]

@PNR2008

 

[meadowlark]

And you know how it is when someone offers to help with something, and you know that it will be about as tiring to tell them how to do things and where things are as to do the things yourself....Obviously it's different being offered a lift, e.g. to a shop,

Yes, I know exactly how this is. The only thing I ask for is transportation. Anything else becomes a circus, and more trouble than it's worth. But because I don't drive and can't take public transit (too dizzy) I am forced to ask for lifts from friends, to urgent dr. appointments, weddings, court appearances (!!!), things like that. It was when a few--let's see, three--friends got me to a parent's funeral and took care of me during the days before and after that I learned how good these particular people are. I do think they were looking for a way to do something for me and were feeling confused and guilty about it. Meanwhile, I was feeling confused, guilty and resentful about lack of help. In the end, they got me through that funeral (without my asking). I am very, very lucky that I have these three, though I can't call on them very often, because they have responsibilities (e.g. aging parents) in their lives.

My general view is that if I ask people for help and they turn me down, I can feel justified that yes, my reasons for feeling so terrible were proven correct. And if they surprise me, well, I get the good feeling of being surprised, and I try to hold on to that. (Not that it's happened more than I can count on one hand, but still.) And I value feeling angry about how some people have deserted me, and about my general isolation from the world... because when I stop being angry, depression drags me right to the bottom. So anger's important, or just going to a forum.

 

[SickOfSickness]

I wish I could take all this pain away, SickofSickness.

Thank you.

Two of you wrote something similar, and it's one of the problems I have:

I think it also comes down to this as well, I have realized it's not enough to just have an illness. Two people have to have the same interests, etc in order to be friends. Or, the same sense of humor, all of what makes up any relationship. So, sometimes just because one is sick doesn't make for a good friend.

Is there anything you're crazy about doing, watching or reading, and can you find people who care about the same thing? I find that if people get interested in me because of one of my passions, or something I've written, they then become interested, and less rushed and judgemental, when it comes to the illness, because they see me as a whole person, not just a label saying "ME/CFS." And gradually, they've come to understand my lack of health about as well as a healthy person can.

I can't think of things I can talk about with other people besides health or this lousy life. It seems really sad.

I'll have to see if I can come up with something to have in common with people, but I'm not sure I can. I don't watch TV (and I know that is one topic you talk with friends about, Misfit Toy). I don't watch new movies. I have no idea who is popular. I don't read popular authors. I don't eat the same foods they eat. I don't have good stories about my family or my past career.

I do have things I used to like, and still kind of do, but they aren't the sort of thing you have conversations about. I mean, you might discuss it one time for 20 minutes and both agree or debate something, but that's not enough to build a friendship on, in my opinion.

 

[meadowlark]

I can't think of things I can talk about with other people besides health or this lousy life. It seems really sad.

I am sure you are much more interesting than you think, SickofSickness. You just can't see it right now.

You were writing about not reading popular novels. I don't read them either, and movies tend to give me seizures (!!!!!) so I don't see those. But I did luck into a friendship through a love of John Keats--not exactly a best-selling author. I don't mean this as some silver-lining, jolly-hockey-sticks type comment. I'm just saying that contact with others can come through unpredictable things, things that are not necessarily popular or universal. People in the margins do find each other, though the wait can be hard. And obviously, illness is so isolating, and feeling like an island is so forbidding. But life is messy, and that works in our favour. Something about you will escape into the "out there-ness," and someone will pick up on that.

You seem so very low. But try to be good to yourself, just step by step, in little things. You do deserve friendship, and that includes being a friend to yourself, as much as you can, just a bit each day. You know that expression about the secret of life being "showing up"? For us, it may be "hanging in."

 

[PatJ]

I'll have to see if I can come up with something to have in common with people, but I'm not sure I can. I don't watch TV (and I know that is one topic you talk with friends about, Misfit Toy). I don't watch new movies. I have no idea who is popular. I don't read popular authors. I don't eat the same foods they eat. I don't have good stories about my family or my past career.

This all means you have do have something in common with certain people, including some of us on PR. Popular culture is just one way of connecting with someone. Avoiding or not participating in popular culture is another. Some people are interesting not because of what they know, but because of how they think, the questions they ask, and the different perspectives they bring to a conversation.

I do have things I used to like, and still kind of do, but they aren't the sort of thing you have conversations about.

Can you give some examples? Maybe you'll be pleasantly surprised to find that someone will find a way to discuss these things with greater depth that you thought was possible.

 

[buggier]

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...

 

[Billt]

SOS , while I am on here more for my son ( early 20's ) , I have my demons to fight with R/A. I can relate to how you feel and how so many don't really understand. If people see my son or myself they think we LOOK HEALTHY . They have no idea what so many of you suffer from and how hard it is just to have a short conversation sometimes.

Thanks for sharing your feeling and being so honest about it I'm sure alot of us just keep it in, and that's not good either.
Keep the faith and remember,, you have a lot of friends to talk to right here. I always have a good ear for listening.
Feel free to pm me anytime. Hope you feel better soon..... Billt

 

[Toxed]

Great posts! I'm struggling with so many of the same issues. I used to have thousands of acquaintances, before I got sick. They were wanting things from my husband or myself. Users. When I became disabled they disappeared like cockroaches in the light, because my ability to serve them/value declined so dramatically. Its took me years to sort out the emotions involved with that. But it was tolerable. Then, one by one, the friends started slipping away. I really appreciate the currency analogy. I'm so impaired that anyone who comes into my space must decontaminate first. Its too much effort, so even my best friend has moved on. My husband does it everyday, and I'm wracked with sorrow over what my condition is doing to him. He works from 7:00 a.m. until 9:00 p.m., most nights, 7 days a week, just to keep up. My daughter, and her family come some Sundays if we cook dinner for them. Its often too much for me. I watch my 2 year old grandson on good days. I see him more than any other person. My son and his family come only a few times a year, at best. The hardest, most painful parts are when my family gets together for events that I can't attend. Its ravaging my soul. I feel for you Sickofsickness, and appreciate reading so many of the posts here.

 

[ahimsa]

I haven't had a chance to add to this thread until now but I have been skimming it (so tough to keep up with all the PR threads, I miss a lot of posts). Such good, supportive responses from others.

My suggestion is not specifically to do with making friends. It's a more general idea that has to do with what happens to one's thinking when feeling sad or depressed (and not necessarily Depressed with a capital D, it can happen even when you're simply feeling down in the dumps temporarily).

I read this phrase on someone's blog and it has stuck with me:

Depression lies.​

It means that your mind may be playing tricks on you, telling you lies. When you say

I feel sure that I cannot have friends unless my health improves ...

It sounds like an absolute, black/white, either/or statement.

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." Or maybe, "I have trouble finding anyone who wants to talk about the subjects that interest me." Statements like that, with modifiers, are generally a more realistic description of the truth than absolutes.

Approaching the problem in a more nuanced way might help. The obstacles are still there, of course. But feeling sad/depressed can make the obstacles seem insurmountable. Sometimes examining one's self-talk, and reframing these black/white statements, reveals that the obstacles are difficult but not completely impossible.

Only you know for sure whether this approach will help you. But it's something to think about.

I hope this does not sound pollyanna-ish. This post is not an attempt to say that life with ME is great. Life with ME is a great, big pain in the A**. It causes problems in so many different areas of life. I'm sorry that you're hurting.

And I felt so sad when you said

I don't think I deserve it anyway ...

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. If that were true then I would have lost all my friends a long time ago!

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.

You put "better" in quotes but I agree. It's not that you don't deserve friends. If people have been treating you badly, and weighing each transaction to see if you have done enough for them, then they are the ones who don't deserve friendship. They are not worthy of your friendship. Same goes for others on this thread who have been treated shoddily.

@PNR2008, that story about the hospital visit, and the person who took a long phone call while you were there, was very sad. That's rude to do even to a healthy person. It's unthinkable to do that to a person with ME, someone who had to overcome so many obstacles just to get to the hospital.

Sending hugs to all the folks on this thread who need them

PS. @SickOfSickness - I started a private conversation a few days ago but I'm not sure if you ever saw it.

 

[PatJ]

My husband does it everyday, and I'm wracked with sorrow over what my condition is doing to him. He works from 7:00 a.m. until 9:00 p.m., most nights, 7 days a week, just to keep up.

Poor health is sometimes like an explosion. Loved ones get hit with shrapnel, and people scatter in all directions. It sounds like your husband is a capital-t True companion.

Are there no other income options, or living expense reductions that would allow your husband to reduce his working hours?