a little lost; THE face

Discussion in 'Fibromyalgia Main Forum' started by KkateE, May 3, 2007.

  1. KkateE

    KkateE New Member

    I haven't been on here for a while. i was actually avoiding it. i seem to be doing so much of that recently. is that always a bad thing? i suppose it is, but i feel like i will crack if i carry on smiling and crap when i don't want to. its THE face, the one i think i've worn for so long i don't know what's underneath.

    i'm stuck and, for all the words people throw, alone. but that's ok, isn't it? i just need a change, but i've just had one, so that isn't the answer. what is? nothing, and that just depresses me more. the worst thing is, i cannot tell this sort of stuff to anyone, but not because of them. i'm sure they would be (well a few of them at least) supportive. i think i feel ashamed. i feel like a fake. i would like to blame society for this, for not believing i was sick in the first place, that i made it all up. i'd like to blame my parents for giving me the complex in the first place. i'd like to blame everybody but myself. but the thing is, i know that there is no one to blame, maybe its me.

    and when i do let a small piece of information seep through, the magnitude is not comprehended, or im complemented. people always tell me im beautiful, but i don't see it at all. i think i'm ok, nothing special. and every aspect of myself i see that way. i think im just relying on other people to validate me. i dont actually think i'm making sense. i'm just sad. in every sense of the word, (part of my face are jokes - however lame they are).

    k.
  2. courtneyrae

    courtneyrae New Member

    Hey. I read your profile and it said that you were 16. I am assuming you are in high school. I am 18 and graduated from HS last year. I've said the exact same thing 100 times. It's cool to be upset about things. You have to realize that you it is totally normal to have some of these feelings at this age. We're in those ackward-teen-I-don't-know-who-I-am years and to top it all off we both suffer from what they call an invisble illness (I have FMS). If your family and friends acted anything like mine they always told you "its all in your head" or "you're just looking for an excuse to be lazy." This sounds kind of bad, but I was totally glad when I got a diagnoses and my family felt like crap for calling me a liar for 5 years! I still hold a little resentment toward them. I'll get over it. Anyways the best advice I can give you is just to cry it out. It is the most frustrating thing in the world to deal with being sick and having to fake smiles 24/7. Lock yourself in your room, turn on some really angsty music, and cry until you can't anymore. Then when you have had a good cry let it go. Whatever you were feeling that made you cry, let it go and don't relive it anytime in the near future. Its actually really refreshing. I always feel ten times better the next day, and things go pretty well for a little while. Before I got really sick physical activity was my release. That is no longer an option a good long cry is how I can physically react to my emotions and purge my body of the stress. If you feel like you’re being fake by being happy, make yourself happy. I realize that this is not always an option. I hate it when people tell me I am in total control of my emotions. Try reading the comics in the morning before you go to school. It sounds stupid but it helps me. Also don’t leave the house without eating breakfast. I used to laugh when people told me this, but it actually helps especially if you have chronic fatigue. I used to dodge looking myself in the eye in the mirror. I think it just made my selfimage worse. Look at yourself, I mean REALLY look at yourself everyday and find something beautiful and focus on that. Don’t dress frumpy either. Take a few extra minutes to get ready before you leave the house. This helps me the most. When I feel like I look good I feel a lot better. You can not rely on others to validate you. You have to do it yourself, and I promise you once you can be happy with yourself other people will begin to respect you and you will earn their validation. Getting sick is so not your fault, but how you deal with it is a choice. These are some of the weird things I do that help me cope. You can try these and if they don’t work keep looking. Everyone has different ways of dealing. It is okay to feel like crap and get frustrated, you just can’t let it take over. That is why you have to find ways to deal with emotions. Its something that comes with age I think, Im totally not there yet, but I’m trying really hard. If you need to talk just let me know. I think I understand what you are saying. Things suck and I’m sorry. They get better.
    Courtney
  3. jaltair

    jaltair New Member

    I've been ill most of my adult life with FMS finally being diagnosed early in 2002 and then later CFS. The feelings that you are having are natural and okay. You are mourning your normalcy; you are so very young to be saddled with CFS and depression. These illnesses aren't easy to deal with in life, and we do lose sight of what and who we are because of the facade we wear so others won't know we are having pain. The process of mourning is a slow one; however, it is necessary.

    I've found that keeping a diary has really helped me. I started one in 2002, and have so many entries now that there are 65 pages in the diary! It's interesting when I go back and read what I've written and see my feelings. Doing this actually validates me.

    <b>Excerpts from my diary that you may relate to</b>

    On June 27, 2003, I wrote:

    "I don't know who this person in this body is sometimes. Sometimes I'm a robot and just getting through with neither happy, sad, mad, nor other feelings - mostly ambivalent. Then there are times, usually when I'm alone, that overwhelming sadness hits and I begin crying. All I know is that I'm definitely not the person I was before having FMS, and sometimes hate the person I've become since FMS."
    <hr>
    On October 18, 2003, I wrote:

    <b>Where is the person called "I?" </b>

    There is a stranger in a mirror, and that stranger touches it's shoulder, a familiar touch but yet so unfamiliar, someone looks back in the mirror with a puzzled look that look is familiar yet so unfamiliar.

    The mind makes the body walk with extremities that feel like they have leaded weights attached, forced movement, careful movement. The body has pain like a flu that doesn't pass. The pain has its own mind and decides to move to areas that do not make sense. The body is so tired, a sick tired. A battle between the mind and body.

    The mind maintains, during the day it's important to maintain. The body wants to lie down and close its eyes and sleep, but the mind makes the body's eyes stay open, while the mind goes to a misty place, not quite where the body is.

    The body feels so tired; the mind allows the body to put the head down, ah sleep. The sleep hurts, the sleep is not restful. And the sleep that isn't restful causes the mind to wake up, and then the body to have pain and nausea, and the mind won't focus. The mind is not quite there, but back in that misty place.

    Where is that person called "I"?

    "I" would be out of bed at the crack of dawn ready to mow the lawn and work in the yard to get a really good sweat! Ah, there's a memory of how the body and mind felt when sweat came!

    "I" would look in the mirror and take a shower touching firmly and cleaning firmly every inch of the body until it squeaked, and then be dressed and eagerly waiting for what might come that day with a smile, and feeling warm and "golden" all over.

    "I" would be cleaning the house all in one day, all the corners, and even while preparing for meals, doing the laundry, shopping for groceries, running errands. .
    The person that was called "I" is missed and grieved for.

    God, please help me more fully understand in a more objective way what this experience of having FMS is about.
    <hr>
    My thoughts will be with you in very positive ways ... please stay in touch on the Board and let us know how you are doing. Also, please consider the idea of a diary.

    Warm wishes, Jeannette
  4. KkateE

    KkateE New Member

    thankyou. i like the idea of a diary and and indulging in how i feel. i know its not going to be easy, and it doesn't help that i'm really flakey but i really appreciate all the suggestions! i've rationalised (using incorectly, but brain has fallen out) now, and i think i'm going to try all of them. can't hurt right?

    without wanting to sound really corny/cliched, i really appreciate all the people on this website. it's much easier talking about it with, not only people who understand, but ... i don't exactly know how to put it into words. it's just nice to have an environment which i can talk in/to and feel comfortable about doing so. it's nice to know i'm not completely insane.

    CR - i know what you mean about family resentment, and finally getting a label to go with how you're feeling. i do have the 'i told you so' thing a bit, but i'll get over it.

    anyway, thank you!!
    k.
  5. LouiseK

    LouiseK New Member

    I am in my fifties. Struck three years ago -- very hard -- with CFS and then Fibro. I mention my age because the passing of years does afford us some wisdom of experience and familiarity with ourselves. STILL one of the biggest sadnesses in my heart is that I do not know myself anymore. My loss of "self" has occurred in a million ways from changes in relationships, to work, to daily activities, to the way I think and feel. Our relationships with everything external changes due to these illnesses. And our understanding of and familiarity with ourselves is lost.

    I don't know how I feel anymore from day to day. I don't know what I can or cannot do. I don't even recognize myself in the mirror. I wrote recently a poem about how I have literally lost my smile! (This being from the muscles in my face becoming so weak) When I smile it doesn't look like my face! Quite a metaphor.

    Bright side -- you are young, you will do really well. You may even recover completely. You will at the very least be flexible and elastic and adjust physically and, yes, emotionally. You will go down a long, ragged road to get there, no doubt.

    Seriously focus on complete recovery. It can happen when you get on this business right away and very aggressively.
    Do everything you can to help yourself. I actually have a strange feeling you're going to be one of the lucky ones!

    Stick around here. There are some really wise and brilliant voices that pop up here (not mine. . .)

    Best wishes to you.
  6. monalisa3

    monalisa3 New Member

    Reading the posts in this thread has literally brought tears to my eyes (not usually emotional like that). The tears are a result of connecting with every word you guys wrote here. You have all touched me with your words here. I too often feel like I have lost 'myself'and the old familiar (real) me. I too grieve and get overwhelmed at times.
    I look in the mirror at times and don't know who I am looking at. My face looks different, the endless pain, fatigue, anxiety, depression, confusion and worry have all made my face change. I think I look worn out all the time.

    Though a few people have commented that I llok tired all the time, I tell them I'm worn out from the constant pain I endure day in day out. Other days, I am positive I don't really look bad or different, and that the way I view my appearance is only a reflection of how I feel inside.

    cheers all

    cheers
  7. IntuneJune

    IntuneJune New Member

    You also wrote "i think i feel ashamed. i feel like a fake. i would like to blame society for this, for not believing i was sick in the first place, that i made it all up. i'd like to blame my parents for giving me the complex in the first place. i'd like to blame everybody but myself. but the thing is, i know that there is no one to blame, maybe its me."

    I was diagnosed over 25 years ago, there was no framework to hang our diagnoses on then, "fibrositis" it was called, not even a proper name.

    We don't know how we got here, we don't know the cause. It might be helpful to "blame" someone. If we were hurt in a car accident, we could turn our anger to the other driver. But would that less the pain?

    Everyone here can tell you not to blame yourself. Only you can take the step to decide not to blame anyone especially yourself.

    Take that time and energy you would spend on the blaming and put it to better use. (I think you already have, from the sounds of the beginningn of your post) Get researching, seek out what has helped others, try some of the modalities, seek NEW interests.

    Never in my wildest dreams did I ever believe I would become an aquatics instructor ( Growing up, I was the one in class who would never verbally answer a question, did not like speaking in front of others.)

    One thing I found helped with my pain was working in the water. Three years later, members of the gym were joining me in the pool for conversation and following my routine. Long story short, I became certified and teach now.

    I used to be a jogger/runner, loved it, cannot do it now. I don't dwell on my past interest, because I have replaced it with a new interest. The time and energy I would put into lamenting over my old self is put to better use applying to create a new self.

    It took me a while to change my views.... but it helped. Your post was so interesting, hope you share more.

    Love, June
  8. Mini4Me

    Mini4Me New Member

    You are wise beyond your years.
    I am in my 50's and couldn't have put it better than you did when you described your face as being the face you've worn for so long you don't know what's underneath.

    I've noticed that my face looks like a very sad mask in all of my recent photos. I can't even hide my deep sorrow from the camera with a fake smile!

    I was also brought to tears with what all of you have written here. It really runs deep with those of us who have had to come to grips with these DD and how it robs us of our former selves.

    I have become somewhat of a hermit because I can no longer be the bubbly, fun person I once was. I can't even begin to act like that person. So, rather than put on an act, I just AVOID!!!

    We here are struggling with the loss of a former identity. How serious is that? I think it doesn't get much more serious! How come the psycs don't address this?
    And depression meds don't begin to scratch the surface of how serious a loss of identity is!

    Love and hugs to all of you, and thanks, KkateE for nailing it on the head! Currently, I'm going to work on my new identity so my "mask" will take on a more joyful look.
    Mini
    [This Message was Edited on 05/04/2007]
  9. Ginner

    Ginner New Member

    I actually felt my face slipping away while I was in the shower. I was washing my face and I noticed it was different. No kidding, my cheekbones were not as pronounced. I also noticed soon aftet that that the muscles in my quads were dissapearing before my eyes, in one days time. People did not recognize me.
    Ginner