stolen from "but you dont look sick" group on facebook.
a girl fround this on a chrurch sheet and alterd to this, and other chronicaly sick people added some.
if you have any more ideas or points, things that work for your friend/partner, list it.
Dear Baby Blue,
I see you there, laying on the couch, finally resting, and I want to cry. I want to beg you for forgiveness. I want to apologize for the betrayal. I want to make this all go away and make it better. What kills me even more is that I can't. That none of it will make any difference. That all i will do is sit there bawling on your chest, like a thousand times before, with you ending up comforting me. You remind me that none of this is my fault. That the fact we will never ever ever have a child together is not my fault. That we have been flat ass broke for months because I have been completely unable to work is not my fault. That you are having to go back out on the road, away from me and the kids, is not my fault. That we haven't been able to have sex for months now...well, unless you count the two times we tried, got about 30 seconds into it before I was beating your chest in tears begging for you to stop, is not my fault. I know this. But I have to blame someone. I have to find someone to take out all of my disappointment and anger out. It's my body that did this, it's my fault. I live with the pain and the regret everyday, and soon the scars. To me it is just my punishment for destroying our dreams. If I had only told you sooner, if I had only known that this wasn't normal. All the money we would have if we didn't spend it on pain meds, treatments, gas to drs and ers. All the lost days, weeks, months, years...... So much I could get back if I only could. I failed me, I failed you, I failed us. In exactly two weeks I go in for the hysterectomy. The final chapter they say. No more pain, no more fear, no more feeling helpless, no more being a second rate mommy and spouse. I long for the moments in our life together, in the kids lives that I have lost, that I will never get back, that this awful terrible disease has taken away from everyone. I scream inside when I see the fear in the kids eyes every time I drop to my knees in sudden pain, when I have to go to the drs again, when they hear the word surgery. No family should have to worry about their mother dying on a monthly freaking basis. I want to tell you how sorry I am, I want to apologize and beg for you forgiveness. But you will never give it to me, you don't see any reason to.
I see you there, laying on the couch, finally resting, and I want to throw my arms around you and just hold you, never letting go. I owe you so much. I want to thank you. I want to smother you in kisses, each one representing a reason I have to thank you. But I would be kissing you for life times. You come in here like a white night, raising kids that aren't yours, caring about a woman who is broken, giving up your life and even a few of your friends who spoke ill of your choices, just to love a family that loves you back more than you could ever know. You have stayed up all night and then took care of the kids the next day because I couldn't stop crying, writhing, gasping in pain. You sit and rub my back, hips, butt, thighs, and stomach just trying to give me a fraction of relief. You then rub my feet just because you know it makes me smile, makes me feel better. You rejoice when I am well enough to sing, and you smile ear to ear when I am well enough to enjoy your delicious cooking as opposed to trying not to throw it up. When I have a day that is filled with tolerable pain you try and make sure that we all do things that I enjoy and love just so I can try and have fun with the day and forget the pain that's nagging me that it's still there. You have taken over every necessity of this house and home to make it work, tick, function, all while taking care of me as if I were a new born baby. You have been my hero, my girls hero (who you insist upon calling our girls and won't even admit to people that they aren't yours by blood. You say they are yours by heart and the heart makes the blood and that's all that matters). You have proven again and again that you are not only an amazing wonderful man but a phenomenal and awe inspiring person period, someone who should be held up as an example of good heart and soul. I want to tell you how perfect you are, how much you have saved me, how much your love is the strength that gets me through day after day of pain and is the hope that keeps me going when it gets too bad to bear. I tell you again and again, but you never believe me, you don't see how you have done anything praise worthy.
I see you there, laying on the couch, finally resting, and I want to tell you how much you mean to me. I want to pour my heart and soul into words of gratitude and love. I want to tell you how much I fell like I owe you. How much you are truly my knight in shining armor. I want you to know how much you really honestly truly are all of the wonderful things that I say you are. I know you don't believe them and that you never will, it kills me. My heart aches that you can't see the amazing and true good that really does lie with in you. You may not be a perfect person, you may not have good towards everyone, you may suck in the empathy towards random strangers department. But, when you love, when you care, when you see that good in some one, you are truly an awe inspiring example of goodness and love. You forget that as much as you have been through, as much as you have been betrayed and hurt, that no one, not a single person would blame you if you didn't truly give a crap about anyone in the world but yourself. Your entire life has been watching out for you because no one else would, you always took care of and protected people who should have been taking care of and protecting you....at the very least in return.....and you've only ever been screwed over. You didn't even think you could love, truly love, again. But you did, you have proven it to me and two little girls again and again and again. You taught us how to love and to open up and let ourselves be loved. Somethings we never would have learned if it had not been for the blessing of having you in our lives. I want to tell you every precious good tender love filled emotion in my heart, but there are not enough words. I want to give you detailed examples to prove to you how much I love you and why, but it's every second of every day. Each breath you take is another reason why I love you, because each breath you take is filled with love for me and our girls. I want to prove to you that I love you more than you could ever imagine, but you won't let me. You don't see how it could be more than you could imagine when you already love me more.
I see you there, laying on the couch, finally resting, and I forget how stressful this is for you. I forget that I am not the only one who is a victim of this awful disease. That when this is all said and done you are as much of an endo survivor as I am. That as afraid as I am of leaving you and the girls to live with out me, you are the one facing the fight of keeping going with me gone. I forget that you are the one who is going to be waking up everyday with the gut wrenching breath stealing heart ache of knowing that the one person you loved most in the world is not going to be waking up with you, or waking up period. That even then, you are a survivor. That you didn't fail, the doctors didn't fail, I didn't fail. That the disease didn't win. That my soul found a way to escape the pain that my body just couldn't survive anymore. Remember that I don't hurt anymore. That I may not be my old self, but I am better than I was. Remember, that whether you believe it or not, I will be there with you and our girls every second of every day for the rest of your lives, watching you, protecting you, loving you. You are my one true love and I can't wait to spend everyday of the rest of my life with you. I pray that means lots and tons and and countless years, but in case it means less, in case it means I am going to be a part of the 20% risk they gave us, in case our kiss of good luck turns into our kiss good bye.... You really are my true love, you really have made me the happiest I could have ever imagined being in my life, you really made me feel things I never knew a heart could feel again, you really made me believe in happy ever after.... You loved me for me, my real true me. You are the only person who has ever done that, not even I could do that.... but you taught me to. You taught me more in the past year in a half than I have learned in 29 years. I know if I am gone, that I have broken your heart, and that kills me more than anything. That I have hurt you more that anyone else could have ever hurt you. So I will spend the rest of your life in limbo, guiding and watching yu and the girls, until I can hold you in my arms again and make up for all the pain I have caused. I do love you, and I just want you to know that. I want to tell you that it's all going to be ok, that I will wake up and you can hold me in your arms and I will taste your lips against mine, but I can't, because I don't know. But I do know that no matter what, you will be OK. I am counting on you to be there for the girls if I can't be. To love them, to raise them, to hold them when they cry for me at night, to be patient and understanding when they say that they want to come to heaven too..... You will be OK. You don't have to believe me, I just know.
You will never read this, unless I am not there anymore, then you will have the note that tells you where to look for this letter. I am praying now that you will never read this.... but if you do, if you have to, know I am so so so sorry, that you are an amazing and wonderful person, that I love you more than time and space, and that you will be OK and I need you to be there to make sure that the girls are too. Most of all, above all the world and anything else that may matter, I love you, I love you for you, and I know that you really tuly loved me too. I know that I am your one true love. I just hope that someday you too know that you are mine.....
Always and Forever,
No Matter What,
Hello there honey,
I know it's 2 am and you're trying to sleep, but you know what, SO AM I.
But I can't. Why you ask? Oh wait, you didn't ask. I'll tell you anyway.
I am in excruciating pain. I am doubled over, throwing up, crying, in the
worst pain I can ever remember being in (since last month around this time
at least) and you're being an asshole.
I'm writhing around in pain and you wake up enough to say "what the fuck
is your problem?" I tell you I'm in severe pain and beg you to make it stop.
You responding with, "what the fuck do you want ME to do about it?"
I'LL TELL YOU WHAT I WANT YOU TO DO ABOUT IT! DON'T BE A JERK TO ME!
I wake up with you when you have a cold, or anxiety attacks, or just can't
sleep...and you're going to cop an attitude with me when I feel like someone
is stabbing a knife into my uterus every 30 seconds?
I know this gets old, believe me, it gets old for me too. You think I enjoy
not being able to sleep at night for a week out of every month? You think I enjoy
taking so many painkillers that I'm nauseous and dizzy ALL the time, but yet they
do NOTHING for my pain? I DON'T! I WANT YOU SIT UP WITH ME, RUB MY BACK, TELL ME IT
WILL BE OK! IT'S PRETTY SIMPLE REALLY, BE MY HUSBAND AND NOT A JACKASS.
I know you're sound asleep again by now, forgotten the tearful exchange I just
had with you, while I'm out here at the computer, barely able to sit up.
(But not for long if you can't learn to accept this and help me through it)
i understand you must be angry with me. i understand that you must feel like i'm faking a lot. how many other students keep emailing you and apologizing for missing classes and say that they weren't feeling well... i'm sure you're sick of the dr's notes too. i'm sure you're also sick of the request for extensions that i've been asking for my essays.
what you don't understand is what i'm going through... how not only my pain is like a knitting needle is jabbing at my cervix or i have a dull aching in my uterus that is often punctuated with sharp spasms, but this is coupled with my anxiety disorder and the fact that i'm on anti depressants to just and give me "breathing space" so i can calm down and at least try and get some motivation back to doing work.
if you knew what i'm going through, you might understand. however, i highly doubt you understand the extent of what i go through each day, and how difficult it is to push myself out of bed every morning. the pain is worse in the morning and sometimes walking can feel impossible. would i rather be in your class, or at home curled up wishing the pain would go away? to please you, i'll be in class. but not often. please extend some sort of compassion my way. you being rude isn't helping me.
your student... with endo.
xposted to endometriosis
dear ignorant student,
last night during my seminar you told me something that left a ringing in my ear i was so angry. last night you told me something that felt like you cut a whole in my heart, my soul, and left me there to bleed. if you had been to every other of my presentations, you would understand that the comment that you made -- specifically to me -- was utterly and totally unacceptable. you would know that even though it may be something simple for you to say, that you can come outside and have a cigarette with me and then act as though you were just talking to one of your other friends, that you should not be saying this to me. you should not be complaining about what you just complained to me.
when you say "i have such horrid cramps it's ridiculous. but, i took a tylenol so i think i'm ok now. so how was your weekend, how is your project going?" you have no idea what you said. i just nodded, speechless. you say horrid... you have no idea what horrid is. you have no idea what horrid means. for you, horrid is taking a tylenol and going about the rest of your day, without a second thought. you experienced 20 minutes of a cramp that for me would be a picnic, a relief that the pain isn't so bad that i can't function.
horrid for me is when i can't move. when literally from going from sitting up to laying down is difficult. where i contemplate whether or not it's worth it to go to the emergency room. where i'll pop 2 tylenol 3s with codeine and i'll still be in as much pain. where it's hard to breathe. where i can only think about the feeling that a fire poker is being jabbed into my body, that my ovaries are bursting and the pain radiates through my whole body. where i get a headache so bad i see spots and become dizzy. when my body feels like it's failing me, and the only thing i can do is to cry and just beg "please make it stop, please make it go away."
you do not fear your body like i do. you do not sit in class feeling the twinge of pain and suddenly stop breathing because you're scared that it's coming back, that it's going to get worse, and the fear that you have no control over it. you do not feel like your life's dreams have been diminished, are out of reach, are impossible because you don't know what will happen in the future. for you, you take a regular pain killer and it helps you. do you know what it's like when only a shot of morphine will take away the pain? or that your only hope is to take a drug that will just knock you out so you can't feel it anymore? you can complain about your pain because everyone experiences pain like you. when i tell you what it's like for me, people grab their abdomen and make a pinching face and say "ew... oh god that sounds awful." this is not comfort.
until you know what a real cramp is... don't say this to me. and don't expect my sympathy when you say this so half-heartedly, without realizing who you're saying it to.
your fellow student.... with endo.