Distraught about people and myself

[SickOfSickness]

I'm really sad about this and even if you don't have advice it would be nice to get replies. I am really sad that I am not able to be a half decent friend to anyone. I just can't cope with it and I don't want to be alone and am grateful for the company but it always seems to drain me more than it helps.

A minor example is that if a friend came over and looks hot, then I want to offer them a drink with ice, but it honestly hurts my body just to get a cup and pour the drink and everything. And yes some friends will understand that it's hard for me, and they will tell me it's not problem for them to just get the cup and everything, if I tell them which cup and where. Unfortunately it also tires me out trying to explain where to get the cup and sometimes it's quicker for me to just get it. So my body suffers later on for getting it. I also can't help it, and even though they say it's okay, sometimes I can tell they would prefer me to do it, or it would have a better result, or I just want to do it.

Same with talking with the friend, I usually muster up more energy and I smile and nod and gesture, but later I am so exhausted. I got some good from being with them, and they enjoyed it too, but it's just too hard for me, and it's all because of this disease. Even when they are really understanding it's just, I don't know, I am ashamed too, and I don't know how to laugh at everything. I am sort of ashamed to try to explain that it's a big deal just doing little things like if they wanted me to go outside with them for a few minutes or go into a store. I have sensitivities and stuff.

Also people might understand a lot but they don't understand completely. Or they understand it logically but they are still a little hurt. Like if I forgot something about them because I am having brain fog and memory issues, that could hurt, and I could apologize and they accept it, but it's still bad and I feel so bad about it. I am not good at dealing with any negative feelings and friends often want me to listen to their stressful problems, but I get so highly bothered and stressed by certain things. Sometimes I can handle it at the time and be supportive but I feel like it comes back to me as nightmares or insomnia or general worry.

Also with friends it's one thing and in dating it's even worse. I want to hug the person and cuddle for example but some positions hurt my back, and I just don't know how to cope. If I don't go ahead and hurt my back, then I feel this big mental struggle because I WANT to hug them so badly. It is like I'm starving and having food right in front of me if I could only reach out and take it, but I am supposed to have more self control and not eat it, since I know the food will cause me a bad stomach ache later. Well it's hard to think about after-effects when you are having a need right now. Also my brain fog makes it so I can't think all the time to pick positions that won't hurt me as much and stuff like that.

I know there are other points I wanted to make, but I don't remember. I am just really upset by it being a Catch-22 where I am going to hurt no matter what. It hurts to be alone but it hurts to be around people who don't understand and give me funny looks or make a joke about it. I try to make jokes about it sometimes too and apologize but no matter what, it's just not enough. People obviously don't get how seriously bad I can feel from stress and how I am confused and feel trapped.

Part of why it's all very hard for me too is I have been sick since I was very young and my parents never acknowledge my illness and I don't know what it's like to have real acceptance or caring very much. Some people have cared about me and were kind to me but it has damaged me a lot socially and with accepting myself. It's common for undiagnosed people to start getting low self esteem, and I am no exception. I also think highly of myself for various reasons but think that the illness destroys most of what's good about me. People can still see goodness in me and care for me, but I know they are also seeing so much bad, and it's painful for me.

 

[muffin]

Sweetie: We all understand how you feel. I know that doesn't help make you feel better but just know that there are thousands of people out there just like you struggling with all the same issues. Really, all of those very same issues.

First, you have to protect yourself mentally, emotionally, and physically. Next, you need to keep in the back of your head that the research being done by organizations like WPI is further ahead than advertised. I would bet that in about a year we will have medications that will knock down or out the virus(es) in our body which will allow our immune systems to rebound. I would also bet that there will be other medications that help clean up the damage done to our body and brain. Just keep that in the back of your head. Don't lose that hope, not at your young age.

You are going to have to learn to not care what others think about you. They don't understand how you feel, how ill you are, or how hard you are struggling. Best to keep those people away from you and disregard their comments. Somehow you have to sort of wrap yourself up in a hard shell and push the nasty people away.

I wish had better words of wisdom for you but I don't. I can tell you that I do understand every single thing you wrote. I understand every single emotion and frustration you feel. That doesn't make it better for you but at least you know that there really are people out there who fully understand you and all that you have gone through and are going through. So go ahead and vent, complain, and get it out of your system. Many of us understand just how you feel and many of us wish we could gently put our arms around you and tell you that it really is going to be OK and things will change. The situation is already changing and moving super fast so just hold on a little bit more.

Very gentle hug - S.

 

[SickOfSickness]

Thank you. Yes I am saddened that others know what it's like. Sometimes they do have a good spouse or parent or parents or other person. Sometimes they have the opposite, and the person in their life makes it all worse, so at least I don't have that.

I am holding onto hope because of WPI.

But I have some very kind people who want to be part of my life, and it hurts to push them away, but hurts to have them in my life. Having them in my life less often or less seriously does not seem to help either. It's also less predictable with people in my life. At least if I am alone, it's a controlled expected small hurt/empty feeling. If they are in my life sometimes it gets so stressful I can't stand it.

 

[SickOfSickness]

And honestly I even feel guilty about my cat who wants more. I want to give it but it's just too much for my body a lot of the time. A cat can't even be explained to with words.

It's hard to not care what they think some of the time. Sometimes I don't care, like I don't care when it's a stranger. I feel so bad because they will hide it and say they understand but I just know they don't. So they are going around thinking I am selfish and not appreciating them enough and other things. They make fun of things I do to compensate and they think it's part of my personality when it's not. It's like living with constant judgement about all kinds of things.

Another thing is if they don't understand how small gestures are hard for me. Some people who knew me better learned to appreciate it more when it's small things coming from me, because it's harder for me. Most don't get why I can't just do them tiny favors when they did so much for me. Or why I need them to leave after a short time, or other things.

 

[Victoria]

I'm really sad about this and even if you don't have advice it would be nice to get replies. I am really sad that I am not able to be a half decent friend to anyone. I just can't cope with it and I don't want to be alone and am grateful for the company but it always seems to drain me more than it helps.

It's ok to feel sad. It's like a mourning process in some ways. We need to mourn our loss of health & physical energy (when we have chronic illness).

And it's ok to be a half friend. Sometimes, when I was working & feeling totally exhausted & brain dead, I used to have this feeling of being an alien. I felt like I was watching a movie on a screen. I could see the action, feel the atmosphere, hear the laughter & conversation (badly since I am losing my hearing), I could see the smiles on work colleagues faces (but not feel the smiles inside me).

I felt like I was on the outside (looking in). Sometimes I had this weird feeling of wanting to reach out & touch their faces to see if they were real. Often I had this sense of a dream from which I never woke up. My Boss told me once that he had observed that I rarely joined in & socialised (in recent years). He (& other work colleagues) just didn't understand that it was too draining to talk & hold up a conversation.

It was too hard to process words & their meanings. It was exhausting.

Sometimes I couldn't hear what they said & have even made some utterly stupid & totally ridiculous comment during the conversation. The work colleagues would stare at me as though I was an alien. It was so hard to act intelligent & "normal" when I was struggling to just do my job.

A minor example is that if a friend came over and looks hot, then I want to offer them a drink with ice, but it honestly hurts my body just to get a cup and pour the drink and everything. And yes some friends will understand that it's hard for me, and they will tell me it's not problem for them to just get the cup and everything, if I tell them which cup and where. Unfortunately it also tires me out trying to explain where to get the cup and sometimes it's quicker for me to just get it. So my body suffers later on for getting it. I also can't help it, and even though they say it's okay, sometimes I can tell they would prefer me to do it, or it would have a better result, or I just want to do it.

Not so much now, but when I was at my worst, I just had to get used to asking someone to put the kettle on or tell them where things were. I went through a period of having every regularly use piece of crockery & kitchenware sitting on the bench so I could reach it. I hated the clutter on the bench, but if did help me to have things at arms reach.

I'm now much better, but my SIL still goes out to the kitchen to make our herbal tea (without even asking me) - I am very thankful for this intitiative & thoughtfulness.

Same with talking with the friend, I usually muster up more energy and I smile and nod and gesture, but later I am so exhausted. I got some good from being with them, and they enjoyed it too, but it's just too hard for me, and it's all because of this disease. Even when they are really understanding it's just, I don't know, I am ashamed too, and I don't know how to laugh at everything. I am sort of ashamed to try to explain that it's a big deal just doing little things like if they wanted me to go outside with them for a few minutes or go into a store. I have sensitivities and stuff.

You have nothing to be ashamed of. You are only human. All humans have their time of weakness & memory loss. We are all interrelated in our lives & sometimes it takes a chronic illness to show us how much we need other people to help & understand us. None of us (even me who is a very solitary & independent person) are able to function 100 % without some input from those around us.

Also people might understand a lot but they don't understand completely. Or they understand it logically but they are still a little hurt. Like if I forgot something about them because I am having brain fog and memory issues, that could hurt, and I could apologize and they accept it, but it's still bad and I feel so bad about it.

Perhaps it takes a lifetime to feel comfortable in your illness body. But for me there came a point when I didn't care anymore about the "hurt" feelings of others. There came a point when I finally accepted that this is how my life is going to be & I'd better get used to it.

Until you go through that period of mourning the loss of your healthy self & make peace with the inner you, you will continue to feel uncomfortable in social situations.

I am not good at dealing with any negative feelings and friends often want me to listen to their stressful problems, but I get so highly bothered and stressed by certain things. Sometimes I can handle it at the time and be supportive but I feel like it comes back to me as nightmares or insomnia or general worry.

Rarely do any of us feel comfortable with negative feelings. They hurt our fragile emotions. Sometimes when a friend spends time complaining about their problems, I feel like saying "You CAN change your life. You CAN deal with your situation. You CAN move on back to normal so easily, if only you would clear your mind & look at the situation in a more objective way."

But I don't because the reality is, that I do not understand their reality, any more than they understand my reality. No one can know the inner workings of each individual brain & thought process. We all cope in different ways.

Each unique human being sees life through different eyes. We see each detail in a different focus. Some see the central focus as being important. Some see the background details of our lives as being the focal point.

While you perceive hurt or confusion in the eyes of your friends, it's important to acknowledge that they see you with different eyes.

Also with friends it's one thing and in dating it's even worse. I want to hug the person and cuddle for example but some positions hurt my back, and I just don't know how to cope. If I don't go ahead and hurt my back, then I feel this big mental struggle because I WANT to hug them so badly. It is like I'm starving and having food right in front of me if I could only reach out and take it, but I am supposed to have more self control and not eat it, since I know the food will cause me a bad stomach ache later. Well it's hard to think about after-effects when you are having a need right now. Also my brain fog makes it so I can't think all the time to pick positions that won't hurt me as much and stuff like that.

You need to vocalise your thoughts to the other person. Put into words what you are feeling. If a hug or action causes you pain or discomfort , you need to learn how to say what you feel. Don't be afraid of hurt or rejection. If the other person genuinely feels love & is sensitive to your pain & earthly body, they will respond to your words in a positive way.

It's that fear that is holding you back.

And sometimes, it's a fear of fear (itself) that brings misunderstandings. If we learn to communicate better in talking about our feelings, there would be far more calm & peace in our relationships.

It's important to keep in mind that very few people feel comfortable talking about their inner feelings. But if you can find the strength to start the conversation about the important things that matter to you (hugging more gently or just holding your hand), then I can assure you the other person will respond. It just takes one of you to start the conversation.

I know there are other points I wanted to make, but I don't remember. I am just really upset by it being a Catch-22 where I am going to hurt no matter what. It hurts to be alone but it hurts to be around people who don't understand and give me funny looks or make a joke about it. I try to make jokes about it sometimes too and apologize but no matter what, it's just not enough. People obviously don't get how seriously bad I can feel from stress and how I am confused and feel trapped.

Don't go overboard on the apologies. Just state the facts & if necessary, make a joke about it (if that helps). When I meet someone (who I know well & have forgotten their name), I just say "I'm having an Alzheimer's moment - I've completely forgotten your name (& laugh)" I used to do it at work all the time.

Part of why it's all very hard for me too is I have been sick since I was very young and my parents never acknowledge my illness and I don't know what it's like to have real acceptance or caring very much. Some people have cared about me and were kind to me but it has damaged me a lot socially and with accepting myself. It's common for undiagnosed people to start getting low self esteem, and I am no exception. I also think highly of myself for various reasons but think that the illness destroys most of what's good about me. People can still see goodness in me and care for me, but I know they are also seeing so much bad, and it's painful for me.

I can assure you that invisible chronic illness does not destroy you, it "changes" you. It changes your perception of what normal is. You see life through new eyes. It takes time to get used to that new life. Once you understand & see your new reality, you will find it so much easier to get through your day.

I'm not saying you will always be comfortable with that new reality. I'm just saying that seeing it with fresh eyes will help you move on & find more peace. There will always be someone in your life who you find disturbing, or you can't relate to, but this happens to normal healthy people too.

 

[Anne P]

Oh my dear! I do so understand the wretchedness and feelings of helplessness because of this horrible illness. You have so elequently put into words the very things I have often wished to communicate but lacked the strength to say. Thank you for your honesty about how it really is for severely ill people like you and me and many others. You are not alone. JUst about everything you mentioned is my experience too.

I too long for contact with people but find the experience too overwhelming. I don't think many do understand our situation but then I don't think I would either if I was in their shoes.

My husband gave me a little dog and I have felt terribly guilty because I can't give it any attention, just as well he plays with her before and after work.
The good thing I've found about cats is they are very self sufficient and don't need much they just come and sit on you or near you when they need it. (smile)

gentle hugs to you

Anne

 

[zoe.a.m.]

Wow Victoria, are you a counselor?! I wish I had your instincts, but I'm sure you worked very hard to reach these conclusions.

Don't go overboard on the apologies. Just state the facts & if necessary, make a joke about it (if that helps). When I meet someone (who I know well & have forgotten their name), I just say "I'm having an Alzheimer's moment - I've completely forgotten your name (& laugh)" I used to do it at work all the time.

I think I might have veered in this direction (taking responsibility beyond what is reasonable for any person) prior to getting sick, but it's a nasty habit that can take over with chronic illness imo. I recently have found myself more aware when I start to say "I'm so sorry" or some variation of... and have started to think of it as my potential to get in "an apology spiral"--and I'm trying to stop it or at least notice when I'm doing it and shorten it. I think it's a role that ill people can easily fall into, the 'if I take responsibility for everything and blame myself for whatever isn't right then I'm a decent and worthy person."

The funny thing is that I was much more self-centered and far less likely to have the ability or energy to empathize if someone else was suffering when I was 'normal.' And the way people treated me was sometimes just crap and had nothing to do with me. It is a true catch 22 because (for many of us), as sick people, we have to take what we can get often. I would have made mincemeat of some of the people I've been in relation to as a sick person prior to getting ill or if I hadn't. The only answer does seem to be almost an island, and then there are the lucky ones who find at least one person to share their life with who can see them and accept them, but I don't think it happens for all of us.

I just wish there was more info out there--in a world with nothing but info it seems!--on this submissive posture we take on as chronically ill people.

 

[SickOfSickness]

I am very tolerant of other people a lot of the time. Years of practice. But I am not able to hold back very well. Like I said, I care about someone and then I am pushing myself just to try to be more normal and average, and it's too much for me, but I do it. Then some of the people don't even realize how I'm giving so much of my energy, to them it just seems like I am not even giving as much as an average person. Yeah I have to just deal with it, but that's hard and if they say something mean I usually can't cope and push them away. I can cope with a friend only when they have some understanding and acceptance of me. Even when they have some, it's barely enough to keep me from being upset. If I could hold back on my giving, and be more careful, when I am with someone, that would be nicer, but I'm not sure that's possible and then it tips the tables even worse. Then they would not understand or not find it reasonable being my friend.

And it's rare to even have anyone who wants to hang out with me. But I don't want to just accept whatever I can get. Maybe I should but it's just not fair and everything. Usually I end up feeling like I'm better off alone. I mean, people are willing to use me as a backup or give me time only when they were in the area and were bored. I usually accept it but it hurts. They care about me but it's not like they can have as much fun with me as with everyone else.

Or, some people are willing to give me their time but they still expect so much, and normally I just push them out of my life right away. And then I am so confused about people who are actually willing to give but they don't understand some things about me. Not accepting that I am really sick. Or not understanding how I am bad with stress. It is stupid for me to push them away just because of stress but I don't see how I can just take it. People should be around others and feel good and not be punished for it. I am punished physically and emotionally.

And yes I try not to judge others but it's so hard with certain things, I don't know if I can be around the person because they are causing me stress by some of their actions or inactions. For example if someone is a neat freak, they may not be able to befriend the messy person. It would just drive them crazy inside. Well, because of illness I am forced to try to accept more people that I normally wouldn't? But there is only so much I can take? I feel like it's crazy to not be someone's friend just because they are messy, but it's hard to work around that. If you try to "put up with it" then you cause the internal stress and it is part of the friendship.

Also with people I find it hard to draw the line and maintain my boundaries. I forget why I needed the boundary and I don't have the energy to keep it up so other people can push the boundary easily. I feel like this damages my self esteem. It's a big problem. If I had more energy it would not be such a big problem.

 

[paddygirl]

Silver lining?

I just can't imagine what it must be like to be young with this nightmare illness, you must have amazing fortitude.

We are on the brink of getting help, I really believe that. The snowball is rolling and there is no stopping it.

I do understand about the friends issue, I'm a crap friend now and unreliable in all sorts of ways as all my energy goes into my job.

I tell my adult children and my friends to hang in there, the real me will be back.

There is one thing you may not know if you are young, and I don't mean it in a trite soundbite way.

It's this, I look at women my age and younger who have never had a serious problem to deal with, their biggest issue is if the manicurist can fit them in. I'm not critisizing them, I don't think life should be suffered. What I mean is when you are well, and I do think that will be sooner than later, you will be like a blind person seeing for the first time or a person unable to walk suddenly having that restored. The trivial irksome things in life will wash off you like water off a ducks back. You won't spend years as many do going down dead ends with the wrong choices, as life in all its glory will be too precious to you to waste on the superficial things.

This will give you the courage and strengh to live your life fully again. I don't mean that you should live in the future, but that you might take small pleasures as you can now and know some day that a full vibrant life will be yours.

 

[SickOfSickness]

Thank you for letting me vent. I am not that young, I am over 30 now. Most women are really wanting to settle down by now and I am feeling it a little too. But yes I've been sick for almost all my life and I don't even know what kind of person I really am. I think I know, maybe I remember from a young age, but maybe I'm just being optimistic.

I do think there will be a cure available but maybe it will take 3 years, which is a lot. These are some of my last "prime years" though I know I would certainly have 10 to 20 great years if cured. I'm supposed to be all grown up now, but I'm not at all. Yes I believe the illness has shaped who I am in so many ways, and not all of them are bad. Some of them are really great, and I think we achieve some wisdom and balance and patience and other things at an earlier age.

However I also am pretty sure it won't be easy if I'm cured from CFIDS. I mean relationships are hard for normal people, but I am also emotionally damaged so much and I have other psych problems and things. And it altered my life path. If I wasn't sick, I would have a nice career now.

 

[Carrigon]

I have a cat, too. And when you mentioned not being able to give more, I go through that all the time. Even last night, I was thinking how I don't have the energy to pet my cat enough. I used to have a cat that liked to fetch toys, and I didn't have the energy to throw the toys enough for him. It made me feel awful. Even the one I have now, she does like to fetch, but I can't really do it with her.

People, no matter how well meaning, can drain you. And that's why I stay away from most everyone now. I don't have the energy. It's just not there and the payback for days or weeks is never worth it to me.

I'm supposed to be going out with a friend today. She was going to come and get me, and I'm already thinking I'll have to cancel because I'm too sick today. I hate doing that, but when you can't, you can't. The last time I canceled with her, she showed up anyway and said she thought maybe I'd still be able to go. And I was upset that she didn't understand that when I cancel, it means I really cannot do it and that is that. If I tell someone I can't walk across my apartment, it really means that I cannot walk across the apartment. People just don't get it.

All I can say is, you can only do as much as you can do. Don't put pressure on yourself. If you can't do something, you can't. Part of having this disease is accepting that there are plenty of things you won't be able to do. And just grasp the times when you can do something.

 

[SickOfSickness]

I agree. I'm just not sure how to balance it all. Most of the time the answer is... just be alone. Just because it's easier. Yet it's so hard.

The hard part is some people are very caring and trying to be understanding as much as possible. And it's still... I guess not enough. And then I seem so ungrateful and silly, why am I pushing this person away when they are all I have, and I need some company.

 

[L'engle]

Similar for me. I keep missing chances to see people because I am just too sick. Or even if I do, I end up sick afterwards, so it is difficult to just enjoy being around people. Having to try to not seem distant or vague or uncaring also takes energy. Speaking in a non-flat tone of voice is sometimes just too much of an energy drain, but dealing with people when you can't spare the energy for the proper social cues can be more damaging to the relationship than not seeing them at all, so I mainly don't risk it. It's very isolating though. I agree that going undiagnosed for years and trying to 'pass' when you feel sick is bad for self esteem. Even then when the illness is recognized, I find myself going back to times when I was shamed as people treated me as weak or lazy.

Is there a friend you can be around who really doesn't expect much? I was sitting next to someone with mental health problems once at an outdoor get together, and after a while she said that she liked being around me because she didn't feel she had to talk. If you can find someone who understands the need for very low-key interaction, it may be someone you can be around once in a while.

 

[Tammie]

don't have the energy to reply thoroughly, but wanted to let you know that I can so relate to most of what you wrote

sending you some gentle pain-free virtual hugs

 

[SickOfSickness]

Gentle hugs to all who need them...

 

[*GG*]

I can relate to what you are saying. When you are in a lot of pain, it is very hard to laugh/have a sense of humor!

Have you tried a good pain clinic? Do you have Fibro? Just wondering if you have tried Trigger Point injections? that has seemed to help me with meditation/OTC pain meds practically 24/7 and myofascial release therapy.

Hope this helps, gentle hugs also.

GG

 

[Victoria]

Thank you for letting me vent. I am not that young, I am over 30 now. Most women are really wanting to settle down by now and I am feeling it a little too. But yes I've been sick for almost all my life and I don't even know what kind of person I really am. I think I know, maybe I remember from a young age, but maybe I'm just being optimistic.

I'm 56 & am just starting to find out the person I really am. I feel for you being so young (at 30+) & not having lived a full life, but being so young means that when treatment and/or cure does come around, you will have plenty of years to start living & celebrating life.

The important thing right now, is to not be so hard on yourself. You are doing the best you can at the current moment. Try to find positives in every day & enjoy those moments.

If it will help, each day, write down something to be thankful for (there is another thread on doing exactly this somewhere). When you're feeling down, it can be hard to do this because you're feeling overwhelmed with the enormity of your situation, but it can be a useful tool (for turning the negative into a positive).

Right now, I'm grateful I can get out for walks in the fresh air. I've grateful that I can look after myself & rarely have to ask for help these days. Just sitting by the window typing, I can see the wind blowing all the trees in my street. Just now, the sun has come out from behind the clouds & casting silvery light on all the bushes next to my flat. So it's time to have a soak in a bath, get dressed, go out & enjoy the afternoon (especially since rain is forcast for the end of the week which means staying indoors).

 

[glenp]

Big, Big, Gentle huggies for all of you. I am with you

glen

 

[muffin]

Lots of great advice from people who live your life. Some of the best advice is what Victoria has said: not be so hard on yourself. Do the best you can and don't dump guilt on yourself. God knows there is enough people out there willing to be nasty, hit you with guilt, etc. so be your own best friend and take care of you.

You are a grown up adult woman. And you have been through far more than most people your age. I liked the statement about those that worry about getting a manicure and worrying about the stupid, insignificant stupid stuff where you have already lived the really hard stuff. For you, from now on and when you are better, the stupid small stuff just won't bother you. I know too many people in their 60's and even 70's and they still get crazy over the stupidest little things. They never matured, they never grew up. You have grown up.

Soon we will have a cure and given that you really are still so young you will have a prettty full life ahead of you. I am sure you will make up for the years lost and do lots of fun and great things. And then this whole ugly disease will just be a huge learning lesson in your past. Hang on. Soon we will have the medications to get us better and get us up and out and off running...Hugs -S

 

[Dainty]

Just replying to say I relate and understand. I wish I could write more on the subject, I wish I could think more on the subject, or offer some type of solution. There are people here that I haven't replied to their PMs, and I want to I just can't manage it right now.

It's very hard to desparately need a faithful friend but literally be incapable of being a faithful friend.