I hate this life

[Toxed]

, 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.

I agree! I've thought that a lot!! People understand cancer and rush to help. Pre TI I was active in a number of ministries. People stood in line to help cancer patients. Meals, yardwork, errands, emotional support... Then when I got sick, Poof! Nothing but dust. It was like they thought, "crazy woman, we're outa here!!!!" and headed for the hills.

 

[PNR2008]

@taniaaust1 I am amazed at the way the world treats me even when I put myself at risk to do something good for others. In fact it is making me feel life isn't worth it nor the people in it.

I've mentioned before that I went through therapy dog training at my expense financially and energy-wise. I saw patients at the Cle Clinic in the cancer center, then nursing home patients at other institutions and the most fun, at risk readers in kindergarden. I wanted to do it and mostly enjoyed the social interaction for about an hour a week. Also I was in my 20th year of illness and had to be extremely careful or PEM would ruin everything.

Training for me and my dog was tiring, we had to be tested and my dog had to be meticulously groomed before each visit ie bath, brushing hair and teeth, cleaning ears, cutting toenails and such. We had to be tested and trained by two organizations, one was an hour away. I loved the actual work but my brother thought of it as just "getting out of the house".

To be minimized like that was cruel and hurtful. Even after my dog suddenly died I got very little response from the institutions that were so crazy about my work. It was business as usual for them on to the next thing. I was devastated on so many levels and told myself "you wanted to do this that should be your own reward". Even though I wasn't a fireman rushing into a burning building, I was doing service and not getting paid for it and little recognition in the end.. Others don't realize how much more effort and sacrifice this takes even family who should know better. I for one am tired of teaching them.

 

[MeSci]

@taniaaust1 I am amazed at the way the world treats me even when I put myself at risk to do something good for others. In fact it is making me feel life isn't worth it nor the people in it.

I've mentioned before that I went through therapy dog training at my expense financially and energy-wise. I saw patients at the Cle Clinic in the cancer center, then nursing home patients at other institutions and the most fun, at risk readers in kindergarden. I wanted to do it and mostly enjoyed the social interaction for about an hour a week. Also I was in my 20th year of illness and had to be extremely careful or PEM would ruin everything.

Training for me and my dog was tiring, we had to be tested and my dog had to be meticulously groomed before each visit ie bath, brushing hair and teeth, cleaning ears, cutting toenails and such. We had to be tested and trained by two organizations, one was an hour away. I loved the actual work but my brother thought of it as just "getting out of the house".

To be minimized like that was cruel and hurtful. Even after my dog suddenly died I got very little response from the institutions that were so crazy about my work. It was business as usual for them on to the next thing. I was devastated on so many levels and told myself "you wanted to do this that should be your own reward". Even though I wasn't a fireman rushing into a burning building, I was doing service and not getting paid for it and little recognition in the end.. Others don't realize how much more effort and sacrifice this takes even family who should know better. I for one am tired of teaching them.

Does anyone have any success stories - when they have managed to get across to someone how hard life is with ME? Does anyone have any methods that they can recommend? Any key phrases that turn on a light bulb in non-ME-people's heads? It must be so hard to imagine, especially when we look normal.

 

[Marky90]

Does anyone have any success stories - when they have managed to get across to someone how hard life is with ME? Does anyone have any methods that they can recommend? Any key phrases that turn on a light bulb in non-ME-people's heads? It must be so hard to imagine, especially when we look normal.

I tell people about the newest research, indicating autoimmunity. And I tell them its hard to even stand up.. like running a marathon etc.. Most people at my own age understand, but a lot older folks are more obsessed with being right, then being right.

 

[Valentijn]

Does anyone have any success stories - when they have managed to get across to someone how hard life is with ME? Does anyone have any methods that they can recommend? Any key phrases that turn on a light bulb in non-ME-people's heads? It must be so hard to imagine, especially when we look normal.

I don't know that it's really a success story. But fairly early on my illness, I saw that light turn on in my GP's eyes. I'd gone in for a visit, and it was pretty typical ... nothing bad, but no real use either.

When I got up to leave, my abdominal muscles wouldn't work properly (and hadn't been for some months), so it was slightly painful and awkward for me to get up. I was trying to compensate for it by somewhat discretely leveraging myself up with the arms of the chair, but she noticed it anyhow.

She's taken things pretty seriously. She was ignorant about the disease and the CBT/GET bullshit of course, but was happy to refer me to where I wanted to be referred. And she read the bits of the CCC I had highlighted when I was trying to get tested for OI but the fatigue clinic was saying it wasn't their job, and I think she read the rest of it as well.

She found an MS specialist who was researching the neuroimmune and muscular aspects of MS, but he refused to see an ME patient. And she got pretty pissed off when a neurologist I saw sent her a nasty letter about it, and strongly hinted that I should ask her to show it to me. She also sent me straight to the relevant specialists when I had issues with oxygenation and coughing up little globs of blood, though they didn't find anything of course

So maybe that light-dawning moment helped a bit. But I don't think she was ever the nasty or closed-minded sort of doctor to start with. Though she did smirk a bit early on when asking if I'd had Lyme exposure. And she has been reluctant to order tests or prescriptions - but that is largely due to the restrictions placed up GPs in the Netherlands, apparently.

It's probably been over a year since I've seen her. Maybe two years. There's not really anything she can do for me, but at least I'm not afraid to go see her.

 

[PatJ]

Does anyone have any success stories - when they have managed to get across to someone how hard life is with ME? Does anyone have any methods that they can recommend? Any key phrases that turn on a light bulb in non-ME-people's heads? It must be so hard to imagine, especially when we look normal.

The Spoon Theory is one way to help explain the energy rationing involved. It was written by a woman with Lupus but applies to many conditions.

Comparisons may help. A quote I read recently was roughly: "A person with ME/CFS can have the energy level that a cancer patient does two weeks before death." Except that the PWME doesn't die, just keeps on with existence instead of actually living.

All we can do is to give a general impression of what it's like. Only someone who has gone through the experience can really understand. Even those of us who are mostly bedbound can't truly understand what it's like for the people who are fully bedbound and have been for significant periods of time. The physical experience is one aspect, the mental is another, but both are intertwined. There are so many levels of experience and suffering.

 

[Snowdrop]

Re @MeSci point of explaining ME

I have personally likened how it feels to have ME using a hypothermia metaphor. But my onset was slow so this M maybe makes more sense for that.
As I do more my body responds as it might for someone who is lost in the woods and it's cold. The body starts shutting down peripheral systems to protect the core. The worse the HyT gets the more systems are affected. It's difficult to walk, increased heart rate, speech is slurred, cognitive function suffers, you feel overwhelming fatigue. And let's say you manage to warm up a little somehow. You experience symptoms familiar to ME as well.

 

[MeSci]

The Spoon Theory is one way to help explain the energy rationing involved. It was written by a woman with Lupus but applies to many conditions.

Comparisons may help. A quote I read recently was roughly: "A person with ME/CFS can have the energy level that a cancer patient does two weeks before death." Except that the PWME doesn't die, just keeps on with existence instead of actually living.

All we can do is to give a general impression of what it's like. Only someone who has gone through the experience can really understand. Even those of us who are mostly bedbound can't truly understand what it's like for the people who are fully bedbound and have been for significant periods of time. The physical experience is one aspect, the mental is another, but both are intertwined. There are so many levels of experience and suffering.

Ah yes - the Spoon Theory. My borderline-Aspie logic doesn't like the choice of spoons as currency as they are not really relevant to everyday life, whereas the metaphor of a bank account appeals to me more. We have very little in the energy bank, and it only takes a very small expenditure to make us overdrawn, and then we can't spend any more for a while. Stretching the analogy, PEM could be seen as interest, perhaps.

The bank account limitations also explain why we have to budget really carefully, and plan all activity/expenditure meticulously, rather than be able to do things spontaneously.

 

[PatJ]

Ah yes - the Spoon Theory. My borderline-Aspie logic doesn't like the choice of spoons as currency as they are not really relevant to everyday life

It think of the spoon theory in terms of spoonfuls of energy, a way of measuring energy, not actual spoons as physical objects. A spoon as a measure mentally works for me since it's a small amount. If energy could be seen as a liquid then my energy for the day might be rationed into 20 spoons.

PEM occurs when my spoons are empty except for a slight sheen of energy clinging to the spoon surface. I have to wait for the spoons to eventually refill before the energy is available to be carefully consumed again, one spoon at a time.

 

[ahimsa]

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

The only person who has ever gotten close to understanding is my husband. This is because:

1) He knew me for 7-8 years before I got sick in 1990. He does not blame my symptoms, or my need to rest, on my personality (e.g., laziness, mental illness, or something like that)

2) He sees me every day, not just good days when I'm out of the house. He knows how hard I try. He sees how symptoms are only partly controlled by pacing/resting/drugs (there's still a somewhat random element involved, not completely controlled)

Even then he sometimes forgets. He always cares and he always believes me (even back at the beginning when I was doubting myself). But even he sometimes forgets briefly, especially the brain fog part.

On the other hand, I also need to remind myself that my illness affects both of us, not just me. So I need to support him, too. The support goes both ways. He is grieving for the loss of his wife (the person I used to be) just like I'm grieving for the loss of my life. We don't mope around all the time, we get on with things and have fun, but a million little things remind us of our loss.

I don't have a good answer for how to make someone who does not live with you, who does not see you day in and day out, truly understand. Even friends/family who believe you, and want to support you, rarely understand.

I guess I have much lower expectations. I truly do not expect most anyone to fully understand.

My only expectation is that people respect my boundaries (e.g., "No thank you," "I'm not able to attend," etc.). That's important. I must take care of myself by resting, pacing, ignoring the latest "cures" they might offer, and so on. If they push back on boundaries then I need to minimize contact with them or avoid them completely.

 

[nokmax76]

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.

Too tired to read more than the first page right now, but I'm glad so many people have reached out to you Sickofsickness. I can relate to everything you say but in the midst of all the good advice and support you got, the above quote really stood out to me. I have been ill for thirty years now and was pretty social for about eighteen of those years and I can tell you without hesitation, friends can actually be a very big pain in the bottom.

I respect everything you say about not being able to develop relationships because you got ill young, but IMO no matter what the age, our chronic vulnerability can to often make us targets, without us even knowing it, for "supposedly" healthy people with deeply unhealthy issues. Like the emotional vampires who use us as listening boards despite knowing the fatigue of concentration, competitive monsters who use us as platforms to raise their egos on and insanely jealous trolls who come out with ridiculous statements like "well, I wish I could stay at home all day and do nothing" despite knowing full well how much it pains you to be so helplessly unproductive.

I have met many healthy people I am privileged to call friends. I have long ago stopped expecting that they fully understand. Just the fact that they try to or work around me is enough. But I would also not wish my experience of toxic friendships on anyone or the absurd efforts I have had to go through to cut such people out of my life. I now believe that there is an absolute killing to be made by any therapist who sets up a "friend de-tox" clinic.

The worse thing about my experiences have been, that since I retreated from my former social life and reached out more to ill people, the very same problems have arisen. Nowhere near as often - but once is too much from someone supposed to be an automatic comrade-in-arms.

I understand the longing for friendship SoS. And from the few posts I've seen of yours, I think you have quite a bit to offer and hopefully recieve. But please be careful of who you befriend. Try and gauge if they are as compassionate as you are, as tolerant and crucially IMO if they are on the same level as you sickness-wise or at least not too despondant of where they are at. Otherwise it can be a draining experience. Good luck.

PS You said in your post you're not as brave as some. Well, I think that was a pretty brave post to make.

 

[Izola]

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 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).

##########

@SickOfSickness: I hear you, too. I am so sad that ME has whittled your life down to little of nothing. You didn't get to live as long as I did. However, I was stupid in how I parsed out my times of well being. Basically, I chose the wrong friends in the end. Already had the wrong family.

Now, that I have figured out who I am, I am vanishing. But I think of you and your situation and try to emit warm kindness your way.

I have been vaguely "alive" during the better part of this week, Yeah! I washed my PJ's. Now need to find a way to forage for food. In the meantime, I listen to Dylan and a few others.
And read and youtube listen to news, science, climate and physics and politics until my blindness pulls down the curtain until I sleep. I am not saying I understand or remember alll I read and youtube interviews I listen to. But I have to keep my brain nourished. Every now and then.

I am not brave. I have read your posts in the past and I admired you. Things are real bad here, too. Finally, I cried for days. Haven't been able to cry for years.

You appear to have retained a lot more sanity and ability to communicate than I. A lot more.

And, when I could and can think, I wish/wished you well. Do not try to use up your strength responding. My visits are intermittant. I'll send you well wishes in the wind. iz

 

[purrsian]

I'm far too fatigued right now to read all 5 pages, but I read most of the first and last pages and I'm so glad that so many have responded already. I think all of us feel these things at some point - the isolation, the idea that we are damaged, the anxiety of trying to do any socialising at all. Socialising for me is exhausting because I'm out of practice and suffered from social anxiety before I got sick, then I get anxiety about how tired I'll be after a social outing... anxiety is bad lol

You sound like you need a friend who understands that you can just "be". Around most people, I feel like I have to talk and be a part of things, but my closest loved ones understand that can be hard for me and let me just hang around when I'm tired. I'm very lucky to have a father who's not much of a talker - most of our relationship is an unspoken bond. When I was a teen, we would take the dogs to the beach together and never say much, just walk around on the beach with them. I think that's what a chronic illness person needs - someone who doesn't pressure you for more AND someone with who you don't pressure yourself to do/be more. The most important part of developing a new relationship like that is communication. My mother is a huuuuge talker, always loves a chat, but has come to understand when I need a break from listening because I explain what's going on with me. Communicating our chronic illness needs is hard, because it sometimes feels like admitting we are weak or damaged, but you don't even need to be asking for help - just telling loved ones what's going on helps.

I don't really have any friends outside of family anymore and I'm ok with that, it was just too hard to maintain any relationships at my worst. But my parents and my fiancé are my best friends.

Also I read a bit of discussion about how to explain our chronic illness experience with others - I tend to go with a flu or hangover type metaphor (depending on who I'm speaking to). I get them to vividly imagine their worst flu or hangover. Imagine the horrible feeling in your head, how hard it is to get up to go to the toilet, how hard it is to get out of bed let alone go and make yourself dinner. Everyone has experienced at least one truly horrific flu or hangover. Then, I get them to imagine that it never ended and that they have to get up, day after day, going about all the basics like making yourself food even though you feel that horrible. And I explain that you become accustomed to having said flu/hangover so you no longer know what normal is. People always understand things better when they can directly relate something to their own experience.

Anyway, I hope there's some helpful advice somewhere in there for you @SickOfSickness . I think you are braver and stronger than you realise - it's hard for us to see the good in ourselves. It's also easy to see everyone else's successes and not notice that they are all just as messed up as us, bluffing their way through life, pretending nothing worries them. I always felt like I was socially retarded from my social anxiety and early illness at 17, but then I realised I was so worried about me being flawed that I never noticed everyone else is too. Sending you and all the other spoonies here lots of hugs and well wishes - pretty sure we all need them all the time lol

 

[alex3619]

Spoon theory was born, as I understand it, in a restaurant or cafe. Spoons were actual real life physical props to demonstrate the issue. This is anecdotal, and I might be wrong, but its how I recall it. I have used bank account analogies myself.

 

[PatJ]

Here is the origin of the Spoon Theory.

 

[Battery Muncher]

I'm far too fatigued right now to read all 5 pages, but I read most of the first and last pages and I'm so glad that so many have responded already. I think all of us feel these things at some point - the isolation, the idea that we are damaged, the anxiety of trying to do any socialising at all. Socialising for me is exhausting because I'm out of practice and suffered from social anxiety before I got sick, then I get anxiety about how tired I'll be after a social outing... anxiety is bad lol

You sound like you need a friend who understands that you can just "be". Around most people, I feel like I have to talk and be a part of things, but my closest loved ones understand that can be hard for me and let me just hang around when I'm tired. I'm very lucky to have a father who's not much of a talker - most of our relationship is an unspoken bond. When I was a teen, we would take the dogs to the beach together and never say much, just walk around on the beach with them. I think that's what a chronic illness person needs - someone who doesn't pressure you for more AND someone with who you don't pressure yourself to do/be more. The most important part of developing a new relationship like that is communication. My mother is a huuuuge talker, always loves a chat, but has come to understand when I need a break from listening because I explain what's going on with me. Communicating our chronic illness needs is hard, because it sometimes feels like admitting we are weak or damaged, but you don't even need to be asking for help - just telling loved ones what's going on helps.

I don't really have any friends outside of family anymore and I'm ok with that, it was just too hard to maintain any relationships at my worst. But my parents and my fiancé are my best friends.

Also I read a bit of discussion about how to explain our chronic illness experience with others - I tend to go with a flu or hangover type metaphor (depending on who I'm speaking to). I get them to vividly imagine their worst flu or hangover. Imagine the horrible feeling in your head, how hard it is to get up to go to the toilet, how hard it is to get out of bed let alone go and make yourself dinner. Everyone has experienced at least one truly horrific flu or hangover. Then, I get them to imagine that it never ended and that they have to get up, day after day, going about all the basics like making yourself food even though you feel that horrible. And I explain that you become accustomed to having said flu/hangover so you no longer know what normal is. People always understand things better when they can directly relate something to their own experience.

Anyway, I hope there's some helpful advice somewhere in there for you @SickOfSickness . I think you are braver and stronger than you realise - it's hard for us to see the good in ourselves. It's also easy to see everyone else's successes and not notice that they are all just as messed up as us, bluffing their way through life, pretending nothing worries them. I always felt like I was socially retarded from my social anxiety and early illness at 17, but then I realised I was so worried about me being flawed that I never noticed everyone else is too. Sending you and all the other spoonies here lots of hugs and well wishes - pretty sure we all need them all the time lol

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.

It's a shame that - until recently - very few people have recognised that. Hopefully, the coming year will see the recent gains in momentum, due to the hard work of Dr Jonathan Edwards, Dr J Coyne et al., continue to gather pace and lead to some sort of breakthrough.

 

[MeSci]

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.

There was a thought-provoking programme on BBC Radio 4 on Saturday about how we view and value work, the history of this, etc. You can listen online here.

 

[Battery Muncher]

There was a thought-provoking programme on BBC Radio 4 on Saturday about how we view and value work, the history of this, etc. You can listen online here.

Thanks! It sounds very interesting, I'll give it a listen when I have the energy

 

[PatJ]

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.

We are contributing to society. Every post here contributes. We don't have to change the whole world, just influence a small part. If even a single person benefits from reading one of our posts, then we've done well.

Here is a story that makes the same point.

 

[cmt12]

Does anyone have any success stories - when they have managed to get across to someone how hard life is with ME? Does anyone have any methods that they can recommend? Any key phrases that turn on a light bulb in non-ME-people's heads? It must be so hard to imagine, especially when we look normal.

To be honest, people don't want to hear about it, even those closest to you. When someone who knows about our bad health asks about it, there is likely some level of obligation as motivation. Or worse, their concern is motivated by a desire to steer you into a direction they think is best.

It's easy to think in binary: healthy and non-healthy people. But this is not really accurate; everyone is struggling to some degree much of the time, and there is a natural human tendency to perceive others as struggling much less than they really are. Most people, the majority of the time, externalize their issues and the more we inconvenience those around us with our health problems, the more likely they are to assign causation to us for their own issues even if they don't verbalize it. I'm sure all of you are aware of this to a certain extent by now. I'm not being judgmental; they just can't help it.

This is all irritated even more with health situations that people can't comprehend intellectually or perceive visually. ME/CFS can only be understood experientially.

When people ask me how I'm doing I usually just smile, say I'm fine, and ask about them. When pressed about my health, I answer matter-of-factly and don't elaborate or seek a common understanding. I downplay and lie. All the time. I do this because that is what the situation calls for.

I know many times we need help or need to be excused from certain responsibilities. We can ask these things from others without seeking their understanding, sympathies, or comfort. It's what is best for everyone involved.