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I hate this life

Misfit Toy

Senior Member
Messages
4,178
Location
USA
@jimells -wow! $30 seems like a lot to go to the grocery store. Is it far away? I know Maine can mean distance. In NH, when I lived there, the closest grocery store was 25 minutes away. Not too bad but no ten minutes either.

@MeSci -I hate asking for help. It's awful. I agree with what Jim wrote. Why can't people just reach out and say..."do you need anything."

I use FB for this with local friends. I'll throw out there that I'm really sick, can't get out and sometimes someone will ask if I need meds or ginger ale and I will take them up on it. Comforting.

This whole thing makes us so vulnerable and it makes me feel pathetic.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
That is true and even healthy people have problems with losing friends to distance.

The difference with healthy people if friends move away is that quite often they could still visit them, because they can (afford to) drive for example, and also you can get out to make new friends. I used to make a lot of friends in local pubs for example! But I no longer have the energy or money to go to pubs, except very occasionally. I have also been having to use almost all my time and energy for essential things, such as shopping, cooking and a very small but tiring business to keep the wolf from the door. There is just almost none left over for leisure activities.

Just one good, close friend would make so much difference. I harbour a hope that after I retire next year I will be able to find one.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
I understand how you feel. I feel horribly isolated so much of the time - especially as I live in a remote palce - no neighbours, no shops, no road even! I cant drive at the moment at all and use a wheelchair so cant even leave the house at all. My husband works full time, but I am lucky that I get to go out for a few hours with him on a weekend. I got sick not long after we moved here, so never built up the support needed. I have one 'friend' who lives nearby, but she never comes to see me anymore and I have started avoiding her phone calls because I am so pissed at her.

Last week I told her I might apply to social services to see if there might be some help to help me be more independent and she jumped in straight away with 'i'll be your carer, you can pay me'. This so called friend has once in 7 years taken me out just for fun to have a look round the shops - she lives near me, doesn't work and has spare income and is just gadding about all day doing what she pleases, but she never thinks to ask me if I would like to go out...hurts so much so I am hardening my heart and letting go as much as possible.

I have better friends on here and on FB who I have never met! I don't have 'specific' friends on PR that I chat to much, but their are always the familiar names that I am happy to see and read about and whose posts I try and respond to because to me they are people I care about - and you are definitely on that list!

Sending hugs
:hug::hug:
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
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..."

No, I don't necessarily expect reciprocation when I help someone else, and I do give such help - not just to friends. I like to feel useful and valued. A couple of friends do ask me for help with things, and I can usually give it, as it's about information rather than physical things. But I do worry about becoming thought of as needy or demanding. I do sometimes tell people about my needs, but they don't always pick up on it. And my two main female friends have families of their own, which they of course prioritise. Once people have children, grandchildren, etc., friends tend to move lower down the priority ladder.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Along the lines of what @PatJ said, I think this article will give you an interesting perspective:

http://lightshouse.org/lights-blog/the-problem-with-being-too-nice-part-one

:hug:

Well, that description of parents sure fits mine!

But the writer assumes that we have a choice - that we can go out and find friends, and even be choosy about them. I can't. Not at the moment anyway.

I can see all the logical arguments that many people are putting forward, about how things should be. But real life and human nature mean that things may be very far from how they should be. In fact, my friends (apart from one, perhaps) are not necessarily the ones I would choose, but the ones I have, and I need to hang on to them as I can't get out to find new ones. So without them I wouldn't have any. My favourite friend lives too far away now, has children and grandchildren and many other friends, so I only see her a few times a year.
 
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Vojta

Senior Member
Messages
167
Location
Czech Republic
I understand you too. I got sick young at 22 when everything good only started. This year since January I spoke with friends in person only twice for about 1 hour. I had 4 phone calls and about 5 FB messages. This sums up my social life. I would have had better social life as mass murder in solitary cell for life.
I used to be little better but since April I have problems even with speaking and writing most of the time. So any communication is difficult and I'm beyond isolation. I wish I could at least write and read long posts her on PR but my brain is so blocked. I know it is likely that I'm going to die alone without any relationships after years of not speaking with anyone. I have only my parents now. Without them I would have been dead already because they support me. They are also reason why I can't commit suicide because I don't want to hurt them. But my zombie life is sort of agony. I used to be psychologist and writer but now I'm not sure I'm human anymore. I live only in my dreams when I have them.

I'm sorry that you are in this situation too and I'm sorry for my depressive post. I don't have any sensible advice unfortunately.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I understand you too. I got sick young at 22 when everything good only started. This year since January I spoke with friends in person only twice for about 1 hour. I had 4 phone calls and about 5 FB messages. This sums up my social life. I would have had better social life as mass murder in solitary cell for life.
I used to be little better but since April I have problems even with speaking and writing most of the time. So any communication is difficult and I'm beyond isolation. I wish I could at least write and read long posts her on PR but my brain is so blocked. I know it is likely that I'm going to die alone without any relationships after years of not speaking with anyone. I have only my parents now. Without them I would have been dead already because they support me. They are also reason why I can't commit suicide because I don't want to hurt them. But my zombie life is sort of agony. I used to be psychologist and writer but now I'm not sure I'm human anymore. I live only in my dreams when I have them.

I'm sorry that you are in this situation too and I'm sorry for my depressive post. I don't have any sensible advice unfortunately.

Of course you're human! You have clearly expressed human thoughts, which I am sure all of us understand.
 

Indigophoton

Senior Member
Messages
127
Location
UK
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!.

Most councils offer a bulky waste collection option. Cornwall will take up to four items including a fridge for £22. If you can't get the fridge outside it looks like they'll help with that.

Some councils offer one free bulky waste collection per year to people on certain benefits, so might be worth checking.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Most councils offer a bulky waste collection option. Cornwall will take up to four items including a fridge for £22. If you can't get the fridge outside it looks like they'll help with that.

Some councils offer one free bulky waste collection per year to people on certain benefits, so might be worth checking.

For a long time even £22 was more than I could spare. My local council's website doesn't say anything about exemptions, and I don't know if Working Tax Credit would qualify.

In a little over a year I will be better-off (state pension), so I will probably book a collection then. Maybe I could get it out of the house using my porter's trolley - if I can get it onto it!

Or maybe I could get a friend to manouevre it onto the trolley. The most-likely friend for that can be unreliable. I needed him to do two jobs for me some time ago, and he kept getting over-ambitious, saying that he could do something much better (make me a completely new gate), but he didn't do anything (I just needed my garden gate fixing so I could keep the neighbour's chickens out). Another time I needed him to come over with his powered screwdriver to finish putting up some metal wall brackets. He never did.

Many years earlier another friend was going to take the washing machine to the tip for me. He never did.

That sort of thing drives me nuts. I don't let people down, and it infuriates me when people let me down.
 

PNR2008

Senior Member
Messages
613
Location
OH USA
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.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
$30 seems like a lot to go to the grocery store. Is it far away? I know Maine can mean distance. In NH, when I lived there, the closest grocery store was 25 minutes away. Not too bad but no ten minutes either.

It's about 45 minutes round-tip to the grocery (in good weather!) but my driver also lives in town. Only the last mile is a dirt road, but it's well maintained. So I have to pay her for two round-trips plus my time in the grocery. Fifteen dollars an hour is pretty minimal to cover vehicle costs plus a person's time, so I figure $30 is very reasonable.

Pretty soon I'll be too sick to get my own groceries even with a ride, so that will save money, although it means never leaving the house at all.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
In fact, my friends (apart from one, perhaps) are not necessarily the ones I would choose, but the ones I have, and I need to hang on to them as I can't get out to find new ones. So without them I wouldn't have any.

Ha, this exactly describes my relationship with my next-door neighbors. They are sometimes challenging to deal with, but at least I don't have to live under the same roof, lol.
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
The OP understandability sounds heart broken and who wouldn't be living this dreadful existence (a non life) thrusted upon us by a conspiracy to harm previously healthy individuals with an acquired novel infection (reduce diagnostic criteria to simple 'fatigue' and then blame the patent for failing to recover). That's clearly insane to do this in a 'caring' profession like health care.

The only way I cope now, as everything is ruined, is to reduce everything to a survival instinct.
As long as I can breathe without a struggle, then I have to be grateful. It sounds dramatic but this is what severe ME does to people. As each day I struggle to breathe, when an attack is over, I feel relieved that for a short while I don't have to worry about dying and can dilute all the other horrible symptoms, as not so bad (even if they too keep you unable to walk around or 'think).

A positive aspect to misery, is trying to find out what politically approved systems caused this, with the aim of taking them to court for intentionally creating 'CFS' by insisting ME never existed when ME was actually a classified neurological disease (ICD:10, G93.3) from 1969. This will happen eventually in Britain, I'm sure, as long as the injured parties (patients) are science educated and can stay alive to achieve a class action law suit- hard when having an untreated crippling disease. So the patients learning about science and medical research is one way of trying to cope, when being knee deep in someone else's deception, that becomes your unintentional identity.

Through self education, even a few words a week, you can learn what the people 'smarter' than you, think they know about you as a 'CFS' individual (discrimination and bigotry), and see they think they can out fox the patients gaining full legitimacy by changing the goal posts of what ME is proposed to be (PVFS, CFS, Somatization, Deconditioning, BPS CFS, CFS/ME, CF, Persistant Physical Symptoms, MUPS, PUPS, SEID).

By observing science research the patients catch up and learn more than doctors in denial of ME, who know nothing at all about ME as they arrogantly spent so long denying it, they're total newbies!

Advantage to us, and our lawyers, and that's a motivating goal to hang on to. 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.

All it takes is cataloguing every single claim they've ever made about you and your mind maintaining symptoms, with not a single piece of evidence (science) to support this and having proof that their 'evidence' lead to you being damaged physically and mentally.

With the correct tests, this is not exactly difficult, but you have to know the science, to know what tests to have. And that takes times, decades, to learn (when you're not a doctor). Still, we caught up eventually and can now easily demonstrate we are very ill, with many tests.

And that's a positive thing too.
 
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Messages
2,566
Location
US
And my two main female friends have families of their own, which they of course prioritise. Once people have children, grandchildren, etc., friends tend to move lower down the priority ladder.

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.
 
Messages
2,566
Location
US
I would have had better social life as mass murder in solitary cell for life.

Sadly this is probably true.

I'm glad you wrote your post.

I care about you. You must be a caring person to be a psychologist.

I'm so sorry you are having problems with reading, writing, and speaking too :( Reading and writing are my only lifeline now. I have some problems with speaking and listening.

I hope you have more good dreams, and maybe a pet? My cats also help loneliness a little bit.
 
Messages
2,566
Location
US
The most-likely friend for that can be unreliable. I needed him to do two jobs for me some time ago, and he kept getting over-ambitious, saying that he could do something much better (make me a completely new gate), but he didn't do anything (I just needed my garden gate fixing so I could keep the neighbour's chickens out).

That sort of thing drives me nuts. I don't let people down, and it infuriates me when people let me down.

I've gotten used to expecting them to disappear or forget. It's still hard to avoid being sad, especially when it was something I needed quicker. That's upsetting because not only did they forget, but they also cost me time, when I could have been finding someone else.

Also, yeah, it's hard when they start making other promises, trying to get us excited for more things to happen. (Then often not even the original simple request gets done.)

I had some stranger come over and take a bunch of scrap metal and things. Some people would take a broken washer and fix it up, and make a nice profit, or make scrap money. £22 is a lot for a pickup since the scrap has value.
 
Messages
2,566
Location
US
Little by little my value seems eroded and I wonder why I hung on so long.

Wow, I had not read your post when I wrote mine about value and friends being at the bottom of the scale.

I'm sorry about your 'friend' doing that to you. It's not fair to you.

But we are screwed either way, aren't we? My other friends mostly didn't give me "special treatment" for being sick. Or they tried to, but they were giving only a small part of what I would need to be comfortable :( One friend would almost always drive to me, instead of me driving to them, but then I feel more obligated in other ways. I'm afraid to have friends that give me all the things I need, because it seems so unnatural and hard for them and imbalanced.

I think these are the impossible dilemmas of being this ill. Since friendships are often difficult for healthy people, of course they would be levels harder for us.