I hate this life

[meadowlark]

Does anyone have any success stories - when they have managed to get across to someone how hard life is with ME?

If I am with someone who genuinely wants to know what ME/CFS is like, I simply say that trying to function physically, in any way, on any level, is like trying to strike a flame from a wet matchbook. Or that the blood in my veins has turned to water. (Same image for adrenaline.) Sometimes those metaphors spark a moment.

But in terms of getting someone to really empathize with the whole picture, to really envision something close to what I feel and how I live .... some things are just unknowable to others. For instance, I have never had cancer. Several of my friends and relatives have survived it, though. Others have died. A few in both groups shared with me how they felt and what their lives with cancer were like. I tried to imagine it... I was there for them as much as a friend or sibling could be .... but I knew that no matter how much I loved them, I could never truly know what their suffering was. To some degree, illness is always an island.

p.s. If someone asks "how are you?" in a casual way, I never answer "fine." I say "hanging in."

 

[Old Bones]

p.s. If someone asks "how are you?" in a casual way, I never answer "fine." I say "hanging in."

My stock answer is "Not too bad, thanks".

 

[purrsian]

Superb post, purrsian!

Whenever I read these forums, I'm always struck by how many intelligent and thoughtful people we have here. It's really quite sad. As healthy individuals, we would be able to contribute so much to society. Not only as workers/ employees (which is how a person's value is judged in modern society) but also as friends and citizens.

Thanks @Battery Muncher, I was worried when I realised what an essay of a post I wrote lol I really do think that chronic illness tends to make us more thoughtful and understanding. Most people don't stop and reflect as much when they have so much to fit in their daily lives, whereas we all have so much extra time to think. It's a blessing and a curse. I believe everything in life has a good side and a bad side and it's super hard to always focus on the good side, but there is always something good.

p.s. If someone asks "how are you?" in a casual way, I never answer "fine." I say "hanging in."

I sometimes say I'm fine, but usually something like "you know, getting there" - trying to be casual but still insinuating that I am sick. If you always say you're fine, people will think you're fine. Then there are my closest loved ones, who I will usually answer truthfully because they need to know. Luckily, my fiancé is so wonderful that he usually sees I'm not doing well before I even really realise so he rarely needs to ask.

 

[hellytheelephant]

This is quite a painful thread to read. Like most of you I have seen friends fade away and others say or do the wrong things....BUT....I am going to play devil's advocate....( gulp, here goes)...

How many of us would have known the right things to do/say for a ME/cfs patient, BEFORE we knew the illness from living with it? I hold up my hand and say that I think I would have been at a loss to know how to help and would probably have uttered the stock phrase:' Let me know if you need anything'

It is so hard to have to ask for help- I hate it- but many times the fault is mine. I do need help and I just don't ask or don't know how to articulate what I need. Yes, it would be fab if friends spontaneously knew what I needed, but isn't that a bit passive-aggressive? Relationships where people have to guess what each other are thinking/feeling/ needing are asking for trouble.

I try to think that in asking for practical help I am actually helping the other person. I put myself in their position and think that in their position I would be pleased to know what i could do that would be helpful.
I need help- I ask for help- i get the help I need....and as an added bonus the friend understands a bit more about what this illness means.
Any friend who refuses to help if they obviously can, is not a friend...

 

[hellytheelephant]

p.s. If someone asks "how are you?" in a casual way, I never answer "fine." I say "hanging in."[/QUOTE]

I am changing what I say; used to say from 'fine thanks', now saying: ' Well it's ongoing, but today is not too bad ( so far)' I have even been known to say that 'the pain is bad.' I am determined to move away from giving other people false hope....and I get mega frustrated when people say' You're looking better'- I am not better!

I have not tried it yet, but if anyone wants to know what it feels like, I would say that it feels like having flu and then being repeatedly run over by a truck! I have explained what it is by saying that I am like a battery where the charge runs down really fast.

 

[Firefly_]

I still have a hard time asking for help, even from my kids or husband...was always super strong and independent and proud of it. I was the one that took care of stuff and have a hard time feeling needy even though I know in the front of my brain that I need to just let that girl go and pamper the new more fragile girl more. It's hard.

 

[Countrygirl]

My stock answer is "Not too bad, thanks".

I have two replies that I use:

either:

I am mostly still hanging together, thank you....................

or

Oh, just like the curate's egg, good in parts., thanks.

People usually smile and it saves the embarrassment of being too truthful.

 

[Old Bones]

Any friend who refuses to help if they obviously can, is not a friend...

I agree, in concept, although I am among those who do not ask for help. But here's another related opinion . . . Any friend who refuses to acknowledge my illness or limitations, despite my attempts to educate them, is not a friend. Unfortunately, most of the people I've encountered over the years fall into this category. Here are a few examples.

In the early 1990's (before the internet), I purchased an easy-to-read book that accurately described the symptoms, and impact, of "CFS". I loaned it to my sister. Many months later when I wanted it back, she mentioned she hadn't had time to read it, or even open it, for that matter. But, when she was experiencing health problems, she demanded that I read a document about her illness -- immediately, and in her presence. More recently, she reminded me of, and ridiculed, the stresses I expressed years ago regarding disability insurance "harassment" and abusive health care providers.

Similarly, when I became tired of a particular friend asking the same questions about my illness (which I answered), over and over again, I sent her a summary of one of the consensus documents, with a note that perhaps she'd find it interesting, and helpful. I received no acknowledgement. She continued asking the same questions, which eventually devolved into her making uncomplimentary comparisons between me and others she knew with "real and serious illnesses". An insult from her husband is what led me to choose "Old Bones" as my name for this forum.

These days, I don't even try to educate people. That way, I save them from coming across as insensitive, and I save myself from potential insults and hurt. It's interesting . . . during his recent speech in Sweden, Dr. Daniel Peterson actually recommended that patients give up trying to explain the illness, because it is impossible for others to understand. Of course, Dr. Peterson's actual words were much more eloquent.

The other issue I deal with is wondering how much to say to the one friend who frequently asks how I'm doing, and actually listens. I fear dragging her down by saying too much. Because, when hardly anyone seems interested, it feels great to have an "ear" once in a while.

 

[slysaint]

How many of us would have known the right things to do/say for a ME/cfs patient, BEFORE we knew the illness from living with it?

I knew someone who'd had ME for many years before I got it but he never talked about it and I didn't ask, I just got to hear of all the weird and wonderful 'cures' he tried. But whenever I saw him he seemed OK; he could drive, drink alcohol, cycle for miles, go to parties. So I was even more confused when I was diagnosed as I could no longer do any of those things.

 

[MeSci]

I was rubbish when told that my stepmother had motor neurone disease - I blurted out something really stupid, then something about Stephen Hawking, which was equally crass, it turned out. I found it really hard to know what to say to her or her husband (not my Dad - her 2nd husband). I tried my best, and I think I improved with practice, and after reading up on the appalling disease.

Before I got ME I didn't know whether I believed that it was a 'proper' illness. But I weighed up the pros and cons. Is it worse to risk looking a fool by believing a malingerer or hypochondriac, or to cause someone a lot of pain and suffering by disbelieving them when they are genuinely ill?

The answer was obvious to me. Shame that so many people make the opposite decision.

 

[meadowlark]

It is so hard to have to ask for help- I hate it- but many times the fault is mine. I do need help and I just don't ask or don't know how to articulate what I need.

This has been so, so hard for me. First, I was raised to be stoic. I am also a "good girl" through and through, and feel awful if someone doesn't think well of me. But as I am now just about what they call a "senior," I am becoming more sensible, know that I have every right to ask for help, and that my own needs count as much as someone else's.

In the past, a few sorta-good friends told me to ask for help if I needed it--and when I did need it, and asked them, they looked absolutely dismayed, though they tried not to look at it. (A stammer or a dropped jaw tends to be a giveaway.) All those relationships dimmed after that. But when I asked a certain friend, she immediately went out and took care of things (a trip on my behalf to the grocery store.) Now, when she calls and ask how I am and I tell her "hanging in," she says "that's not good enough. How can I help?" It does me so much good to receive her love that the weird reactions of the others don't bother me any more.

 

[MeSci]

I wonder why some people say "Just ask if you need anything" and then react with dismay or awkwardness when you do? I have known some people like that, or people who I fear would react that way.

I have a long-term male friend who usually buys me (modest) presents for my birthday, but I have now told him that what I would really appreciate would be some practical help, and he readily agreed to this, but I have never put it to the test! He is usually at work when I phone about other issues but is retiring soon, so maybe I should give it a try, e.g. when I need a lift to the doctor or vet.

I think I am partly afraid of spoiling a valued friendship.

But why do people say they will help if they don't mean it? Are they relying on the assumption that you won't take them up on it? Do they think that you have closer friends/relatives whom you would ask first? Do they just want to make themselves appear nice, or to give you some comfort?

 

[SickOfSickness]

But I weighed up the pros and cons. Is it worse to risk looking a fool by believing a malinger or hypochondriac, or to cause someone a lot of pain and suffering by disbelieving them when they are genuinely ill?

The answer was obvious to me. Shame that so many people make the opposite decision.

That's such a good point. Most people wouldn't think of it that way. People can't help but doubt. I think it takes a lot of effort, or a lot of love, to get past that natural doubting instinct.

There are so many decisions people can't make logically. There is a good book all about how the brain makes many mistakes. Not to mention how so many people have lack of sleep and too much caffeine, nicotine, alcohol, etc.

The book title explains it. It's called "You Are Not So Smart: Why You Have Too Many Friends on Facebook, Why Your Memory Is Mostly Fiction, and 46 Other Ways You're Deluding Yourself".

I think I am partly afraid of spoiling a valued friendship.

But why do people say they will help if they don't mean it? Are they relying on the assumption that you won't take them up on it? Do they think that you have closer friends/relatives whom you would ask first? Do they just want to make themselves appear nice, or to give you some comfort?

I would be afraid too, if I were you

I knew some people who would offer help to others, and they were willing to help, but they hoped their offer wouldn't get accepted. I think they were nice people, nice enough to offer and help, but they would rather play games or watch TV than do some chore too.

One of these people explained it to me as being like a gamble. He knew that his offer would be accepted only about 2 out of 10 times, but he got to look really nice 10 out of 10 times. He would make more offers when they were less likely to be accepted too.

He did enjoy helping someone out, but certain help was a lot less enjoyable to him than others, so that was a factor. With some offers, he did want the offer to get accepted, or didn't mind at all. With others, he minded, but was feeling like he had to offer.

 

[hellytheelephant]

[QUOTE="MeSci, post: 683487, member: 6237"

I think I am partly afraid of spoiling a valued friendship.

[/QUOTE]

Well, it's always possible that could happen...or you could test the waters gently- one trip one time. He might surprise you, or even enjoy the sense of really helping you. There is always a risk in trusting anyone, but there is potential there for deepening of friendship too.

 

[Old Bones]

I knew some people who would offer help to others, and they were willing to help, but they hoped their offer wouldn't get accepted.

One of these people explained it to me as being like a gamble. He knew that his offer would be accepted only about 2 out of 10 times, but he got to look really nice 10 out of 10 times. He would make more offers when they were less likely to be accepted too.

@SickOfSickness These people may get "to look really nice 10 out of 10 times", at least initially, but for how long? I think most of us are astute enough to recognize insincerity, although we may intentionally (or unconsciously) put our "blinders" on if we value, or need, the relationship. I'm especially slow in this regard, and I tend to give people far too many chances. But eventually the evidence of the person's insincerity, or my low priority in their life, is impossible to ignore.

Thanks for recommending the book. It looks like one I'd enjoy. On the subject of "niceness" (as opposed to kindness), I found the book "The Tyranny of Niceness: Unmasking the Need for Approval" very interesting. Here's what Amazon.com says about it:

""I’ve got to stop being so nice." How often has Dr. Evelyn Sommers heard that from her clients over the years? The Tyranny of Niceness identifies and confronts our most fundamental social dysfunction - niceness. For over 15 years, Sommers, a Toronto psychologist, has treated many twisted lives created by being nice. She interweaves the case histories of her clients with her own observations to present a frightening, yet hopeful, picture of a society that promotes silence and obedience over individuality and honesty. Through her stories and analysis, we see that letting go of niceness, without being rude or uncivil, means a new way of relating to others and a new honesty with oneself."

 

[Zou Xiangyu]

You are right, especially in the age that we are not mature enough to deal with the situation, we need much more efforts to grow up, but I want to share something with you, I wish my poor expressing can convey the exact meaning.

I suffered from CFS in Senior one, at first, I prayed that I could do anything to come across a considerate girl accompanying with me in this hard time, I was eager to build close relationship to relieve my pain. Therefor, I read many book about relationships: how to make friends, how to carry out a good conversation, how to have a stong heart, etc. I tried my best to behave like a mature man and be positive and struggle to be excellent, I think you can understand how hard it is when you have CFS. All failed, I lost many things, including the girl. I spend much more efforts ,much more time, but I can change nothing, worse still, everything is worsen. I can't control my feelings because I thought the world is unfair, many negative thoughts.

After 7 years, gradually I understand something.

Try to be positive makes no sense, only when improvements happen, we can have the power to be positive. It's normal for us to be negative, depressed and angry, so when you can be calm,
applaud for yourself, if you can be positive sometimes, wonderful.

Now I give up petending to be normal, I give up pushing myself too hard, I still want to find a considerate companion, to build a close friendship, but I also know it's so hard.

Most importantly, I don't rack my brains to pursue the strong heart, I accept the reality that I'm weak, I will make many mistake in the relationship, but I will try to explain my situation. Sometimes, don't be guilty, that's not your fault but the CFS's. Be frank to yourself, do what you want to do if you can, it's not embarrassed to cry to feel depressed. All in all, that's not your fault.

The world is unfair, we can only depend ourselves. I admire many teenagers dropping out of school because their family have enough money to give them a good treatment, their family can provide a good environment to take a rest, but I still have to struggle in the school and bear the noisy environment. But this is reality, I can only change myself.

Now I can think, I can walk, so I want to fight against CFS. I still expect the miracle.

It's impossible to be mature enough right away after hearing a sentence, reading a book or story, only time can make us be mature, little by little, it's a hard process, especially to us. Difficulty will not always make us stronger if we can't find the right way.

I still struggle with CFS, I don't think everyday we can step forward, maybe backward, but generally we step forward, that's enough.

I still have many tough times that I almost can't tolerate, like some days ago. But finally I went through it.

I'm still kind of childish.

Maybe this is just life, everyone grows up in different way, may you find your ways.

 

[belize44]

Try to be positive makes no sense, only when improvements happen, we can have the power to be positive. It's normal for us to be negative, depressed and angry, so when you can be calm,applaud for yourself, if you can be positive sometimes, wonderful.

I have to applaud you for this statement, Zou Xiangyu! When I went to the Mayo Clinic and saw a Rheumatologist, she gave me a booklet that basically purported to teach me how to be positive about my health issues, and it felt very invalidating. I think your approach makes more sense; to acknowledge our frailties and to applaud ourselves when we can lift ourselves above the negativity. For me it is an uphill struggle to be positive when so many aspects of this illness is eroding everything I like about living.

I hope you can find that special companion, too!