This disease
So, today I am highly unmotivated but still - I feel compelled to write this journal entry before I head off to make a small attempt today at some uni work =) I'm almost 1 week infront! YES!!
This disease is torturous, not only to me but to the people I love.
I have to put up with people not understanding - those people utterly annoy me, frustrate and anger me. YES I do hurt, YES it does stop me from being me, going out, having fun! YES, I do love to go out, party, enjoy myself but I am not sorry to you for what this disease does to me, giving me the inability to not be who I am, because it's not my fault! If I had cancer, if I was dieing, you'd be terribly compassionate, do I need a death sentence for you to care...or, is it only with a death sentence that you pretend to care?
I have a wonderful partner who I cannot believe I am blessed enough to have. He does everything for me, and I don't mean just look after me. He takes on all the workload I do when I am not well, he takes days off to care for me, and he is willing to not have fun just to look after me. It hasn't been easy, it's taken a lot for us to get here...he wasn't always this way, but he has taken the time to learn that what I am going through can be as painful as I am telling him it is. He has seen the pictures, seen the doctors, seen the info. He's watched what he does to me, and now we are at a stage where he realises I don't want to be this way, it depresses me, and he does everything to be my rock.
I have wonderful parents who would drop everything to come to me, to loan me money if I need it for appointments, to just 'help out'. You know it's even taken them years to get to this point. So Kudos to my partner for getting there early.
This isnt who I am, this disease doesn't define me. Its just changing me, I don't like it and I will fight it. But some days you know, I just can't. Some days I just give in, because I am exhausted. I could have travelled somewhere amazing with the money I have spent on doctors over the years. Instead Im still battling my health. Sometimes it IS hard. I am glad I have amazing people around me, and oneday I hope to do something amazing for them in return.
I'll never be 100% but I plan to be better, I will fight for it. I will be positive, and I will make a change in myself. But I won't ever be sorry, because this is something I did not ask for, or plan for. I will not be sorry because it is not my fault. I will not be sorry to those intolerable people who think I make things unpleasant for them, or I am a burden, or I am 'always sick' well I hate to tell you, I don't get time off from this disease, I don't get to pick when it will hurt me, or for how long or for how much, I have no say, and you either accept me as the person I am, or I don't need you around. I try really hard to participate in life, but sometimes I can't. I don't need your demeaning attitudes, your degrading looks, your dissapointment. I am amazing, I just have something inside me I can't control.
If you're my friend, my family, you will accept me, the way I have had to accept myself. It isn't easy, but I know I am worth it. And, the people who matter to me know it as well.
(there's my little rant to the world! around me, off here).
Thanks for listening =)
Tate
XOX
This disease is torturous, not only to me but to the people I love.
I have to put up with people not understanding - those people utterly annoy me, frustrate and anger me. YES I do hurt, YES it does stop me from being me, going out, having fun! YES, I do love to go out, party, enjoy myself but I am not sorry to you for what this disease does to me, giving me the inability to not be who I am, because it's not my fault! If I had cancer, if I was dieing, you'd be terribly compassionate, do I need a death sentence for you to care...or, is it only with a death sentence that you pretend to care?
I have a wonderful partner who I cannot believe I am blessed enough to have. He does everything for me, and I don't mean just look after me. He takes on all the workload I do when I am not well, he takes days off to care for me, and he is willing to not have fun just to look after me. It hasn't been easy, it's taken a lot for us to get here...he wasn't always this way, but he has taken the time to learn that what I am going through can be as painful as I am telling him it is. He has seen the pictures, seen the doctors, seen the info. He's watched what he does to me, and now we are at a stage where he realises I don't want to be this way, it depresses me, and he does everything to be my rock.
I have wonderful parents who would drop everything to come to me, to loan me money if I need it for appointments, to just 'help out'. You know it's even taken them years to get to this point. So Kudos to my partner for getting there early.
This isnt who I am, this disease doesn't define me. Its just changing me, I don't like it and I will fight it. But some days you know, I just can't. Some days I just give in, because I am exhausted. I could have travelled somewhere amazing with the money I have spent on doctors over the years. Instead Im still battling my health. Sometimes it IS hard. I am glad I have amazing people around me, and oneday I hope to do something amazing for them in return.
I'll never be 100% but I plan to be better, I will fight for it. I will be positive, and I will make a change in myself. But I won't ever be sorry, because this is something I did not ask for, or plan for. I will not be sorry because it is not my fault. I will not be sorry to those intolerable people who think I make things unpleasant for them, or I am a burden, or I am 'always sick' well I hate to tell you, I don't get time off from this disease, I don't get to pick when it will hurt me, or for how long or for how much, I have no say, and you either accept me as the person I am, or I don't need you around. I try really hard to participate in life, but sometimes I can't. I don't need your demeaning attitudes, your degrading looks, your dissapointment. I am amazing, I just have something inside me I can't control.
If you're my friend, my family, you will accept me, the way I have had to accept myself. It isn't easy, but I know I am worth it. And, the people who matter to me know it as well.
(there's my little rant to the world! around me, off here).
Thanks for listening =)
Tate
XOX
Replies
Tate, you are right .. you are amazing. im so glad you wrote this, it made me cry because it how most if us here feel, we go through life getting told we look fine, even we we are not, i know even as you wrote this you were in pain as i am reading it, our body aches and we suffer terribly, but we do have hope, everyday we come here or say hello to each other truly hoping were having a good day or at least one if us is, it gives us such hope. I support you and you know you can tell me anything or just cry if you need to, i truly get it hun...I love you and big hugs to you, you have such a beautiful soul and im so glad i met you.. xoxoxo soft gentle hugs to you
Thanks gorgeous girl!
You are an amazing beautiful woman! =)
Always here for you too =)
Lots of love xoxoxoxoxo
Taters, I\'m so grateful you wrote this.... had me in tears since I understand what it feels like to have people around you be frustrated, judgemental, and lack understanding, just because we may look ok. Makes one wonder, if we looked like cancer patients, would people be more understanding? They can\'t see through our skin and ever understand what it\'s like to have horrible pain on and off.... and how much we do suffer from this awful condition. But, you are a such a strong source of inspiration and I admire your desire to keep positive outlooks. Even though, many of the times, it\'s all so frustrating and seems hopeless..... your little light inside of you keeps shining bright. I truly understand what you typed, and I\'ve got your back. Always on here for you.... and even if it isn\'t much.... we are winners and you\'re right, this disease never should define us, and never will.. We do our best, even though it may not be as much as we\'d like to do sometimes.... we are strong. And to those who do discriminate, judge, or belittle us because they aren\'t well informed, or just plain ignorant, well, God will deal with them some day! You\'re a lil\' blessing in disguise, and I\'m sending my love and hugs your way. xoxoxo *Cheers to hopefully better days*
Thanks hun! =D Im glad it touched you =)
Im always here for you also!
and I second that *cheers to hopefully better days*
*BIG HUGS!* xoxoxo