The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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I hate this life

Discussion in 'Lifestyle Management' started by SickOfSickness, Sep 20, 2015.

  1. SickOfSickness

    SickOfSickness Senior Member

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    This is more like a blog. I don't think blogs can be made "members only". I might not reply to some replies because I am sensitive, hurting, and tired.

    I am not suicidal, but I hate almost everything about my life. I think I haven't complained here for a while. Things are not any better. They are worse.

    I'm not as brave as most members who post here. I don't like to post all the upsetting details, but I have to share my feelings.

    Life is bad in so many ways, but the biggest thing I'm upset about now is how I'm just unable to have relationships. I don't mean only romantic relationships. I can't have a friend and I can't even have a nice conversation with an acquaintance. It's too much for me.

    I don't have much of a life, and I'm used to it. I'm still upset about it, but not as upset as I was a few years ago. But I still want to have a friend or person who I can enjoy spending time with, and where I don't have to pretend and use up energy I don't have.

    I decided to only be friends with ill people, because they could understand better, and they have lower energy, but I don't think I have much chance of success with that either.

    I am so sad about it. I've tried to tell myself that someday it would work, and be optimistic like that, but I'm having another difficult time with someone and I'm not seeing this changing. I see so many reasons why I can't even have a friend, (unless it is just a forum friend, and even that is hard). And few reasons why someone would want to be my friend.

    I've posted before about how being ill makes us vulnerable. I am so tired of being this way. I try so hard, and these people who try to be my friend are also good people. And it doesn't work. I admit some of my "emotional baggage" and mental things are part of it, but I think it's mostly the fatigue, different types of pains, bad sleep schedule, and unpredictability of symptoms that make me unable to have a friend.

    I have seen the same problems over and over with people I try to be friends with. The biggest problems are always the same old reasons. Things I really can't change. I could change a few of the easier ones if I were to have lots and lots of free help from someone understanding (or if I could afford to pay). I mean actual help, not therapy.

    I know I'm not alone in this, and it is a little comforting to not feel alone, but then I start hurting for other people like me. Some of them have even less than me.

    I still have some hope for my health to improve, and make friendship possible, but most of my hope is gone now. My hope was lower and lower 3-6 years ago and now it's so low. It's almost gone. I feel sure that I cannot have friends unless my health improves, or if I found one of the most understanding and calm people on earth to be friends with.

    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 think one reason I'm not able to was I got sick so young, and it's been so long that I've been sick. It has changed me and kept me from developing like most people (even most ill people usually grew up before they became ill).
     
  2. Snowdrop

    Snowdrop Rebel without a biscuit

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    I'm sorry I have nothing at all useful to say. I feel like crap too. I hear you. :hug:
     
  3. SickOfSickness

    SickOfSickness Senior Member

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    Thanks and sorry about your situation. :heart:
     
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  4. belize44

    belize44 Senior Member

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    I know how you are feeling, sickofsickness and I have been there many, many times. It is especially hurtful when others don't understand. Even my dh, who is otherwise wonderful to me, hinted the other day that he felt that I was just a "tad" hypochondriac. This really hurt because I am not imagining one thing about this #@* illness! One reason I closed my FB account was because I realized that I was feeling much more disgruntled about my limited mobility when reading about the doings of all my so called friends. I realized that not one of them would ever pick up the phone and call me, but they wanted me on their friends list. Since I don't deal well with hypocrisy,I realized that this was causing a lot of down moods, so good bye to that!

    If you ever want to chat via private message, feel free!
     
  5. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I'm very sorry for anyone who has this damned illness. I am quite happy with my own company and my cats most of the time, but it would be nice to have closer friends whom I could see more often, go out with, share experiences with, etc. Although I was in my 40s when I became ill, the trouble is that friends move away, lose contact, and the simple fact is that they don't understand.

    It would be nice to have friends who could help with simple, practical things, like just a little light housework, perhaps, once in a while. I'm sure there are ways I could reciprocate, but I don't know how to start the discussion.

    I have tried doing this when friends ask me what I want for my birthday, when what I would really like is a little practical help. I'd like someone with a car to take the clutter in my storeroom to the council tip, for example. I've had a non-working washing machine in there for nearly 20 years, but no way of getting rid of it!

    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?

    But another problem is that interactions with friends can be so tiring. I had a friend stay for a day and a night a few months ago, and it was nice, but I was exhausted afterwards and suspect that this is what caused me to lose a day to migraine the next day.
     
    Last edited: Sep 21, 2015
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  6. alex3619

    alex3619 Senior Member

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    Online friends are what many of us have here, and often they find them here or on other ME and CFS forums. Do visit the chat room and take other chat opportunities. Sooner or later you might meet someone online with whom you click.

    I have several friends here now. It took several years for that to start happening though. What is the difference between a friend and an acquaintance? In my view friends are the people you chat with just to chat, and if possible hang out with them online. Two of my friends play computer games with me, and we start and stop so as to not wipe ourselves out, though we do not always get that entirely right. There is a largish group (well, a few anyway) doing that now and maybe some of them will become my friends too.

    @SickOfSickness I hope you find some answers that help. There are people here who understand, and some of them chat. I also use Second Life to chat with fellow patients. There are lots of platforms out there.

    @MeSci, I started out never asking for favours, but had a few years where I tried it out. Now I don't ask for favours again.

    Real life friends do not get how even simple things can wipe me out. Sometimes I wonder how they interpret me becoming quiet and withdrawn as I get more exhausted.
     
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  7. SickOfSickness

    SickOfSickness Senior Member

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    That is true and even healthy people have problems with losing friends to distance.

    Yeah this hits home with me. It's even a part of what prevents friendships for me.

    I'd rather do everything myself if had the energy, but I've gotten better at asking for help sometimes.

    One of my biggest problems with getting help is that most people feel like you owe them a lot, or at least half of people I've been around. One would make me feel so guilty, and the next time I would not want to ask for help. Usually I had no other choice and had to ask, knowing that I would have to put with the atittude. Some of them would be kind about it, but then a month or year later, I would see that they felt I owed them.

    Also when they helped, I felt obligated to socialize for longer.
     
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  8. PatJ

    PatJ Forum Support Assistant

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    Try turning the thinking around. If you were able-bodied and had a friend in need, would you like the opportunity to help that person? A real friend will appreciate the chance to help you, no strings attached, no favours.

    Keep in mind that able-bodied friends may not have a good idea about your needs. Some people might even think you're doing well specifically because you haven't asked for anything.

    Thinking in terms of reciprocation may be a barrier to asking. If a friend asked you for help, would you expect that person to do something in return, or would you just be happy to help?

    It can be difficult to ask but if you drop some hints and a friend doesn't pick up on them, then it comes down to "Do you think you could help me with..."
     
    Last edited: Sep 20, 2015
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  9. beaker

    beaker ME/cfs 1986

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    I have a couple friends who I have had some very honest talks with. They have said if they can help they will and if they can't they will say so. It takes the pressure off. We both know we can ask and answer w/o guilt or any other stuff.
     
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  10. PatJ

    PatJ Forum Support Assistant

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    You're compassionate and feel for others. You just gave an excellent reason why someone would want to be your friend.

    You're still developing. Everyone is. So long as you feel and think you will continue to develop. Read stories, quotes, other people's life experiences, and then contemplate them. Imagine alternate lives, learn from them, and grow.

    Also, consider reading about neurotransmitters, imbalances, and their effect on mood. Blood pressure can influence this for me as well. Lately I've been getting to know just how much an imbalance will drive my thinking in seriously negative or positive directions. I can sometimes feel negative and cynical in the morning, but fine in the afternoon. The difference in my mood and outlook at these times is amazing. When my mood is normal I don't really mind being bedbound for much of the day spending my time contemplating and imagining. But when my mood is negative I can feel lonely, trapped, and sometimes just wish for my heart to stop beating. Figuring out why this is happening, and what I can do about it, makes it easier to endure those negative times.
     
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  11. brenda

    brenda Senior Member

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    I have learned the hard way, not to ask friends for practical help and l pay for the help if l cannot do it myself. I don't think it does the friendship any good. If they offer to help then that is okay, but still l am careful not to ask too much and prefer to pay a stranger.

    If we do ask for help maybe the friend will not like coming back to us for help knowing we are sick so l always reward the friend with something to keep things balanced, if l ask for something which is rare but recently asked for a friend to witness a deed Poll to revert back to my maiden name. I am taking her out for a meal for that.

    But l really understand the difficulty in finding a friend and especially since being sick from a young age. I do have a friend now, and am surprised that it works, as she has a serious mental health problem which is now fairly controlled and does not understand my illness on a physical level, but she knows what having a bad day is and not wanting to see anyone and relates that way.

    I used to feel annoyed with her when l could not get her to understand why exercise is bad for me, but l just accept her limitations and let it go. She knows from her own condition not to put pressure there.

    She did medical training for four years and had to give it up so we can discuss health issues and thankfully she has is now pro natural methods of healing and takes my advice . She has even found a way to deal with her mental health through exercise rather than antipsychotics.

    So l would say that friendship can be found in unusual places and there are a lot of lonely people out there if we look for them.
     
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  12. PNR2008

    PNR2008 Senior Member

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    @SickOfSickness , I could have started and written your thread for you, my sufferings are the same. Go on chat we have a lot to discuss. LOL
     
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  13. ahmo

    ahmo Senior Member

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  14. AndyPandy

    AndyPandy Making the most of it

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    @SickOfSickness I feel for you.

    Sending you love and hugs.

    Best wishes Andy.
     
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  15. mgk

    mgk Senior Member

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  16. wastwater

    wastwater Senior Member

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    I like the cat motif,always makes me smile
     
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  17. jimells

    jimells Senior Member

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    Yes, I know exactly what you mean. My next-door neighbor has offered to take me to the grocery, etc. But I get tired of always having to beg for help. How about calling me to say, "I'm going to the grocery today. Wanna come?" I currently have a workable solution. I found a person through the local hospital who drives me to the grocery for $30 a trip. I'm too sick to go more than twice a month, so it's cheaper than a car.

    Since I don't feel completely dependent on my neighbor (who is not always dependable, but neither am I) I feel more comfortable to ask for other things, like taking the trash to the dump once every three or four months.

    That's so annoying about looking at a dead washer for 20 years. It wouldn't last 20 minutes where I live - there's a lot of metal in washing machines, and metal is worth money. There's lots of folks around here who make some sort of living collecting scrap metal. I did it myself back in the 1980s.
     
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  18. jimells

    jimells Senior Member

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    Yes, it seems like every aspect of society has been monetized. When I played saxophone in the Salvation Army band I would hear the Captain complaining about people who just wanted something from the food pantry and wouldn't stay to hear about Jesus. That used to really bother me.

    What about doing something just because it's the right thing to do?
     
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  19. Sean

    Sean Senior Member

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    Similar story here. Sick at 20, just after I left home, when I was first starting to form serious adult friendships and intimacies. Now 51, and those windows have pretty much closed for me.

    Oh, I still have some friends (outside the patient community), for which I am grateful. But even with them it usually gets in the way seriously. The simple physical incapacity alone is a serious limitation on being able to adequately participate in even light social stuff, let alone the more demanding intimate relationships.

    And let's not even discuss careers and a half decent income.

    All I can say is that you are not alone. :hug: :cat:

    •••••••••••••

    Are you mad? How will the glorious capitalist rip-off work with that kind of soft socialist indulgence of the soul?

    Off to the free-market boot camp for you, hippie.

    ;)
     
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  20. Misfit Toy

    Misfit Toy Senior Member

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    I consider you my friend. I know we don't always chat via email, or I don't get back to you. I am struggling. I am also working right now...because I really have to to pay my rent. I know what you are talking about. It's so nice to have a friend over where you can just hang out, not talk and just "be."

    I have some friends in the outside world, but I am sad I can't always keep up and I cancel a lot. It's very hard and I understand the loneliness and grief and also illness just changes you. I am not as open or I am sort of expecting it to go wrong because let's face it, many can't handle illness.

    I use FB to communicate with a lot of ill people. I originally had all well friends from high school and cut them all off...I let them know before doing it and now most of my friends are sick. I like it that way. I can say I feel like POO and it's alright.

    Anyway, I do know what you mean. Like I said in another post, I have a hard time going to the post office and just having a casual conversation. I loathe small talk, so I get it.

    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. I am finding people...finally, who have this illness or similar ones and texting them, or in touch with them daily as a daily check in. Sometimes we don't even talk about the illness but other things or just get to know eachother. It's not the same as being in a room with someone but it feels like they are with me at times. They are in my heart.

    I am on FB a lot so if you are on there...let me know and we can become friends and laugh at jokes...if you are up to it.

    You are not alone...there are many of us struggling with this.
     
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