I hate that pain controls me, It never asks if it’s welcomed it never gets an invite. Pain does not care about your social life if you made plans if it’s your birthday or a huge event months in the planning process. It does not ask if you’re busy, happy or ready for the hell it brings. It is a part of you not welcomed by open arms but by tears and disappointment of plans ruined by its untimely arrival. You don’t control how long it will attack you, if you will be going to the ER, or what medications will work. It makes you woozy and exhausted from trial and error of pills you take just to be able to get out of bed. You sink deeper into depression over no control over your own body. You feel like a stranger to the world and your enemy dwells within you. This war is a private one and you fight every second of the day the war will never end until your body shuts down completely. Your body feeds the pain blood flows to it giving it life. Once I breathe my last breath finally I will be free….
It has come to my attention lately you have yet to live up to your status of my other half,soul mate,friend,companion. That the words in sickness and in health, I will take care of you baby,I love you,I wish I could fix you,Is there anything I can do? haven’t exactly been in your vocabulary lately or at all. You have made promises and broken them. You have lifted me up with your words then I have crashed right down when your unable to follow them through. I am here to give you the benefit of the doubt that maybe your stupid,thick headed or blind so I will write this letter directed to you so you get the bigger picture.
I AM SICK not with the flu though at times I feel flu like symptoms but think bigger !
I MAY NOT GET BETTER! It will always be a tough road to recovery but I may never get there.
I HURT DAILY 24/7 NOT A MINUTE LESS! I am always hurting and I will try to put it simply for you …..
I wake up in the Morning if I haven’t already been up all night and I am bombarded with pain,and thoughts “what will my day be like? “Will I be able to get out of bed”? “Can I get anything productive done”?”Can I eat and keep down breakfast”? “Will my clothes fit today”? All as soon as I open my eyes How nice it would be to stretch scratch my balls and get up !
I am confronted by many symptoms everyday Yes I may have good days but then I have to decide how to spend my energy Not waste it. I then have to decide weather its worth it? Do I go for that jog I have been avoiding? Do I clean out my closet and do the chores around the house ? Can it wait? Will it be worth being in pain for hours or days after? Can you Imagine not being able to do the simplest of tasks Brushing your hair,dressing,showering,Can you imagine having to decide what task is worth what amount of pain.!
I am exhausted before my feet even touch the floor ! I have to make decisions about things that others take for granted walking the dog,getting groceries,or the dreaded fulfill your needs!!We will get back to that one
I have to weigh out the pros and cons of all my daily tasks and whats expected of me all before my morning coffee which I cant drink cause it bloats me and causes inflammation.
I am expected to get up get dressed look presentable walk around head held high face the day BUT I am also facing the demons you do not see and tend to forget about!
The Demon Endometriosis I am at war with myself Think Braveheart,300,Black hawk down I think you get it! My body battles me everyday heart against mind,mind against heart! What I want to do and what I can do,Whats possible and whats impossible. It rages inside of me growing like a plague.Making its ugly self known and pretending to hide when I know its just waiting like a lion stalking its prey.
I then have to think about relationship duties things that other women can handle easier. I have to think about sex,pleasure,looking sexy enough,good enough,stay in the latest fashion,Keep my hair from getting grey though its falling out,Keep my nails done,toes painted,face piled with make up to hide my tired eyes. Keep in shape not too skinny not to heavy,try diet fads,drink smoothie cleanses, Shave my legs,and overall give the fake impression of perfect.
I am exhausted With the emotional baggage I must carry on my shoulders, I am depressed by the lack of support and the quality of my life,I am anxious about where my future leads,Will I have children ? Can I be a mom ? Will My relationships fail,Are my dreams over? The losses I have already suffered, Racing thoughts and the highs and lows which you reference to as CRAZY,INSANE,MENTAL,NEED HELP! Those hormonal side effects of the Endo are real and Not just inside my head. This is not a video game You cannot run around on the battlefield with a gun shooting at my Endometriosis ! I wouldn’t give you that satisfaction If it was even possible. I would be on that battlefield winning that war.
EVEN THOUGH I MAY LOOK HEALTHY,RESTED,FIXED I AM NOT It doesn’t go away It is on my mind and I wear it all the time, Its my second skin,I cant take it off hang it up or walk away. It is here to stay the question becomes ARE YOU?
I will fight with you,Hate you,Yell,scream throw an occasional dish,I will Have bad days, sad days, mad days, happy moments, ups, downs, comings and goings. I will cancel plans,trips expensive or not,I will not show up, I will not get out of bed,I will not do the dishes, I may even close up shop for sex,I will wear sweats,cuddle my heat pad more than you,I will cry laugh scream maybe all in a row.I will be strong be weak I will fall but I will get back up again. I will need time and space patience,kindness,romance,understanding,I will need you to be mom, dad, maid, nurse, Fashion consultant,make up artist, I will be lazy,unmotivated,I will not take the blame, I will not fight about whats wrong with me? and what did I do now? your basic statements. I will not hear about how your horney,you are tired,You are fed up,You are drained,You are hungry,Your board,Your wanting more. I will not feel bad when I cant be with you,spend time with you,make you my priority,I will not blame myself for not being in the mood,crying after sex,not feeling pretty enough or good enough.I will not hate myself more than I might already because I cant make you dinner,keep you entertained,be your everything. Maybe its time you become mine!
You need to be just as strong as me, a warrior like I am everyday you need to help me fight this battle where is my solider ????? If I run around all day and find the strength to cook,clean,organize,shop for food,look nice,and ask for you to help me lift something or help me with tasks don’t complain and grunt! I am asking for your help maybe something I don’t do often since I struggle alone at times so when I reach out for you don’t turn your back on me. I may have a hard time asking for help and taking on too much at one time but its up to you to be the rock and show me I can count on you. If you decide to fight with me not against me then this is your fight too, This is you just as much as its me. We are EndoStrong together but If I am EndoStrong alone then I have no use for you and you will just slow me down.
Will you be all the things I need you to be ? Will you be the man the solid foundation my soft place to fall ?
You need to put yourself in my pretty shoes and not be selfish there is no place in ENDO to be selfish It affects everyone.
I am trying my best and I need you to as well and I cant feel alone while your right there. I cant forget so I expect you not to forget that this exists in me and it wont be leaving anytime soon.
My physical symptoms are real not for attention or bragging rights. I have symptoms you are not even aware of and yet you come to me saying why do you look so sad,gone,lost,lonely,emotional,depressed, Is it me ? is its something I did? No Its not always about you Its about the constipation,bloating,diarrhea,migraines,stomach issues,tension in my whole body,burning and a feeling of heaviness resting on top of me. Feeling gross and toxic, feeling a million emotions at the speed of light I lose my balance from the racing thoughts and spinning room. The nausea,vomiting,bleeding,the crushing ripping taring of my insides at every breathe at every step. The exhaustion of chronic pain and sleepless nights The mind battles,the body failures,
I will not go into very much more of my symptoms because you could be here all day and we know the attention span is sometimes short ! Its ok mine is too …..
I will in closing of this direct scripture written just for you will state I AM NOT OK, IT MAY NEVER BE OK, YOU CANNOT FIX ME BUT
Stand by me in the darkest hour, Hold my hand through the fog, lift me up to the sunshine and lead me when I cease to lead myself.
I may not know you well at all,I may not have even met you,I may not be blood related or even know your name but I am connected to you through this disease that will never go away.I am beside you when you need a friend,behind you when you need a push and in front of you when you need a little guidance.I am your ENDOSISTER AND WE FIGHT TOGETHER XO
I am never not in pain though I hide it well but its getting worse and I AM TIRED OF HIDING IT I may not be able to go out as often walk as long do certain activities i am sore all over like having the body flu 100 times worse you need to understand that just because i look ok on the outside my insides are all stuck together so sometimes going from sitting to standing causes a ripping an actually ripping try to imagine your bowels getting stretched or torn away from you belly button or pelvis or stomach. I have webs connecting my organs and simple twists and turns fast movements even going over bumps cause things to stretch and pull and tare. I feel everything more extreme hear things louder see things more smell things more feel things more, I get severe anxiety depression worry stress my mind even fights my body My body is a war within itself I am suffering alot neven. I cant do the things i love I cant go places cause i worry about pain, pain is my enemy and it rules my world right now. I am trapped in a broken body that fights me with even eating a simple food. I have to constantly be aware of my body what i feel will i feel am i going to be ok if i do this if i have a big day today i will have a bad day tomm is it worth it. I have to balance the pros and cons to everything its not as simple as getting dressed and going. I fluctuate in weight im bloated full heavy or no weight and thing and to thin everyday is a struggle im exhausted even when i wake up because imagine your body fighting a war every min of the day and night never getting a break can you imagine how tired your mind and body would be. I stress a lot worry a lot and having 0 communication and a horrible relationship on top of it is worse. I cant fight on top of fighting, I cant yell on top of screaming at my own body to move! I cant worry more than i already am I need someone who takes charge! I need someone to not pass judgment and make me feel bad about being sick or throwing it in my face I am really aware of things i am doing and unable to do
I know whats going on im living it
I know theres wasted money and wasted plans and time getting ready but that’s my life. I have spent countless hours getting ready and 15 min before I get sick or headache or i don’t feel pretty I feel fat!
I need someone to lift me up not drag me down
I don’t feel pretty perfect or attractive with a illness attacking my inner body ! WOULD YOU?
I feel not good enough and fat and bloated and my hair falls out
I need someone who doesn’t call me pet names and cute like im a baby and a sick baby at that it makes me feel less than and makes the endo win! I am not an Endo BABY I am a warrior !
I sometimes don’t want to tell you i am sick I thought you know that I thought you see small glimpses into the pain and know that its there daily
I thought you know I have endo and its chronic pain
Look up what chronic means
I don’t want to tell you I don’t feel well to hear we paid we traveled were losing out and fight over endo cause than it wins I just suck it up but that’s not fair you see my hands sweat you have to see the signs of pain my body lanuguage will tell you
Your so busy looking out into the world your world you don’t actually see me you see my boobs my make up my body but not really ME
You see my smile my laugh but not my silent cries
You think everything is fine but how could it be I have endo
Its not going away its actually getting worse
I cannot fight and battle I already do that and have been since i was 12 years old …
I need a relationship that is strong supportive
if we were one a strong couple one unit we wouldn’t fight over the dum things we fight over if we were one body one soul you wouldn’t push me because you would feel what I feel
WE are not those things and that is why this happens
we are two strangers
living 2 worlds
stop being a child for once in your life this is above you and you cannot fix me you cannot write anything that makes your point there is no point there are times in life when and if you know nothing about something you need to shut up and listen
you dont listen I have been fair I have told you all these important things and all i ask is you to read them
stoppppppppppppppppppp (he is typing as I am typing clearly not reading what I am writing)
wait until I am done so you fully get what I am saying
dont waste my time with you who cant handle this and let me find someone who can
This is your last fucking chance I have told you about endo sent articles wrote what you could do
this is hopeless
ill talk to you later when you want to listen instead of beat me with this too
I feel defeated as I am typing trying to express myself and tell him ways to help me he is typing away as well so were both typing him to probably defeated his actions instead of listening to me. Or trying to beat me to the punch since I guess he has endometriosis too so he knows what to say.
I have sent articles, clippings, stories, If he doesn’t know about what Endometriosis is then he is not listening is just a boy or his life take care of everything so he can do what he does best which is nothing… I have never met someone so self absorbed so lazy unmotivated such a boy!
You need to go back to the life you had before me smoking pot drinking and letting mommy and daddy do all the work!
WAS READY TO GO OUT BUT OF COURSE ENDO WINS AND THIS IS THE UGLY SIDE OF THE DISEASE
God This disease is so lonely! No one knows what I go through almost daily No one gets what its like to wait for the pain to hit you like a ton of bricks. All day sweating or freezing feeling hopeless and helpless. Having 0 control of when it hurts 1 min being ok to the next crawling to your bed.Feeling intense anger sadness dis pair lonely all in the same emotion. Feeling so sick of being sick you cant stand yourself or others. The others that want you need you to be ok so they feel better more at ease !SO there off the hook and you can not only loose control of your life but try to control there life. To be the strong one the powerful one the leader because without you everything in there life would fall apart. They dont no how to live or breathe without you telling them what to do. SO you pick up all the pieces as best you can grab hold of some reality even though your going insane inside your head from the raging thoughts and emotional wreck you are. People ask to much of people who look ok on the outside but are strong enough to hide it. I cant take on what furniture you want,your clothes or what to watch on tv when I can barely stand long enough to inhale,
I am strong enough for myself but not for everyone else to dump on.
I cannot give you anything when I have nothing more but chronic fatigue and pain I can offer you that but I am sure you would decline.You cannot pretend to know what I go through everyday praying I can take a shit without passing out or peeing without hot pain in my ovary cutting into me. You cannot pretend to know How much it hurts to get dressed suck it in smile and walk around with everyone else and look good in every ones eyes. You think a ohh poor you it will get better will help me or does that help you? Does that make you feel like your doing something ! Take one for the team and fuck off…….
YOU take for granted the simple things bending over tying your shoe,getting dressed cleaning your house,standing ,sitting it can be so painful for me it pulls me to the ground but of course I cant show you that !
I hate living in a world where I must deal with everyone else’s bullshit I cant handle anymore being thrown at me! Do you ask a women in labor to fix a light bulb,wash clothes,for relationship advice why ask someone in chronic pain anything all they hear see feel smell is pain
People get used to how you react in pain if your not on the floor dying screaming begging for your life people simply dont care! They see you as fine as ah she will get over it ,it will pass. Well guess what its here to stay and I am in pain believe it or not!
I am so tired of being the way I am……..
My body this body I was given doesn’t work! Doesn’t do what I tell it to do It is a constant struggle to get it right.
I am so good at pretending everything is fine as my body is dying inside.
I am brave enough to wake up to a new day but my body lay there fighting a battle with my head !
I am strong enough to carry the dead weight and pain my body fails me and drags slowly one step behind.
I am stable enough to sit with my racing thoughts my body shuts down
I am in powered to walk tall and smile head up while my body reminds me every step that it wants to stop.