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mlarie
01-26-2008, 11:11 PM
I feel like everyone that should try their hardest to understand what I'm going through just doesn't have the time to care. I'm beginning to feel like a burden on eveyone I love. I'm so tired of being sick! I feel like I try my absolute best to not let Lupus define who I am, but if I say one thing about it during a weak moment I'm perceived as a complainer or weak. I just feel like nobody understands how I feel, and it is nice to have people here to vent to, but at the same time it's depressing that complete strangers are more willing to be there when I need someone most than the people that are family. Thanks to anyone listening. The nights are just hard sometimes when I'm awake, alone, dealing with the pain. Sometimes I just feel awful because I resent people that aren't suffering. I know that sounds terrible, and I would never wish anything bad upon anyone, but darnit, I just want people to understand!

hatlady
01-27-2008, 08:10 AM
Many gentle hugs, Mlarie... we're here for you. We understand the long nights and the aching days, and don't judge when someone complains. A shoulder to lean on is so important -

May the morning bring you a brighter day - and if the day has clouds, know that you can say everything you feel here. And we will listen, share our strengths and share our comfort.

Saysusie
01-27-2008, 11:07 AM
I'm so sorry that you do not seem to be getting the support and understanding that you need from the people who are the most important people in your life. Either they don't understand or they are in denial. In either case, it is hard on you - I know.
Last night, I was in such pain and felt like I just couldn't talk about it anymore. I feel like a complainer when I have to say, almost every day, "I hurt..something on me somewhere is always hurting and I just want to scream or cry!" When my husband asks me how I feel, it seems as if I always have the same answer..."I Hurt!" People do not understand this constant pain that we live in, and even when we tell them, they seem to quickly forget that we are ALWAYS in some kind of pain. And if we are not hurting, we are so fatigued that we just can't move. The two together seem to never be understood by our loved ones. That is part of what makes this disease such a lonely one.
I know it is hard to reconcile the fact that we, here, understand you and support you more than your family. But, I hope that it is at least some small measure of relief to you to know that we are always here for you; that you do have somewhere to go where everyone understands and no one judges. Please know that we do care and that you are never alone.

Peace and Blessings
Saysusie

Oluwa
01-28-2008, 03:08 PM
Stangers are those who don't say Hi to you.

Hi Mlarie, how are you today? A hello is where it all begins my friend.

Please know, I do understand what you exactly mean and exactly how feel.

Hugs,
Oluwa

mnjodette
01-28-2008, 04:01 PM
Hello, Mlarie. Trust that we DO...really, really DO...understand. It's hard to feel like the only one in your circle who has to live their life with pain, fatigue, confusion, skin sores, kidney damage....whatever symptom lupus has chosen to bestow on us. But, it's good to know that there ARE others out there who 'get it' - and who can provide you with a place to vent or cry or ask questions. I've had many sleepless nights and I often stop in here to read posts (even old one's sometimes) or to see if anyone else is awake. You might try it. I think it saved me when I was first diagnosed. I was so scared and sad. I have a good support network (local support group, fairly supportive co-workers, an incredible husband) but the group of friends I have right here on this forum has done just as much to make this road easier for me. I hope you'll stick around and get to know this fine group of people. I'm sure glad I did. I'm sending you the warmest thoughts and a hope for a better day tomorrow.

Jody

vw
01-28-2008, 06:14 PM
I feel your pain- there are days like today when I am in so much pain all I want to do is cry -and sometimes that what you need to do to let it out. Lupus is a very complex disease - it requires a tremendous about of understanding and patience- I sure do hope you feel better - and remember take it one day at a time - as sometimes we just have to let ourselfs just be and take it easy

sick n tired
01-28-2008, 11:32 PM
Hi Mlarie,

I do understand what you are talking about. My family had a family meeting about me last weekend. When I say my family, I mean 3 siblings, their spouses and my mother. Their take I understand is that I need to move away from my spouse and kids for at least 3 months to be healed. I told my brother that I would have to invite a friend and they would be paying for the resort that me and my friend stayed for the 3 months. :lol:

I hope that today is a little better for you and that you are feeling the lifeline that this forum gives those of us who are lonely and in pain. Just a voice crying into the darkness made light by cyber friends on a forum of understanding.

hoping for a better day,

Karen

mlarie
02-04-2008, 06:14 PM
I haven't been on in a while, so I'm sorry it took so long to reply. Thank you so much everyone that took the time to try to make me feel better. It really is beginning to feel very comforting to have this group. I've just been so tired and depressed the last couple of months. When I first found out that I was sick I didn't really let it sink in, and now the reality of it all is finally starting to hit, and HARD! I feel so scared and so alone. I feel like I'm viewed differently by everyone now. I feel as if everyone is judging me in negative ways. Most people make me feel like I'm just faking being sick because I don't look sick all the time, and the people that know for sure that this is real make me feel like I should be handling the whole situation differently. It just frustrates me because they don't know how I feel and what I'm dealing with every day. I'm embarrased to go to the mailbox without makeup on because of my rash, what if one of my neighbors saw it, what would they think? I can't go out in the sun hardly ever because I get covered in hives for days. I just feel so very outcasted and alone. I just want to say thanks again to everyone that took the time to care about me. I just hope I can be as much a help to someone else here as you all have been to me.

rlbyler
02-05-2008, 09:41 PM
Hey girly.....
I'm going through the same thing. except with my employer. The last time I was in the hospital they actually called the hospital to see if I had indeed been admited and what room I was in. Most of the time, I think certian people around me think I'm faking everutying. I just want to stay home and sleep all day. I just enjoy crying and playing the pitty party card. So I difinitely know how you feel. Just remeber we're all here for you, some of us right where you are now, and some have a lot more experience then we do. Overall though, these lades, know what their talking about and are standing at the ready to ralley for you for encouragement and praise. I'll even lead....ha...ha...

I hope you continue to fight, and that you keep putting one foor in front of the other each day when you can.

Robin

mlarie
02-06-2008, 07:13 PM
Thanks rlbyler, I think everyone here is just wonderful. I'm going to make an effort to log on as much as I can because I think I just need more positivity in my life right now. Sometimes it's just so tiring to even take a shower, let alone find the energy to be on the computer. I have a two year old, and I think if I didn't have to get up for her every day that I would live in bed! Thanks for the encouragement.

Pearl
02-06-2008, 07:22 PM
Hi mlarie -

I just read your post - sorry my reply didn't come sooner. I remember one day when my arms hurt so badly I could not lift them in the shower to wash my hair. I just stood there and cried. This, from a woman who just three years ago, was riding very high powered horses, exercising, etc. My point is, I can SO relate.

Don't despair, my friend. There are better days ahead. Tomorrow might be one of them.

Hope you are feeling better soon. Take care.

Jana

onpointe
02-12-2008, 02:24 PM
Hi there,

I'm pretty new to this site and pretty new to Lupus. I understand how you feel though! I am new to "Lupus" in name only, looking back, I've had these symptoms I couldn't put together for a very long time! I think I was 13 when I started getting some of the symptoms and I'm 32 now and just diagnosed! all of my adult life I've been considered "sickly" or "depressed" or just a faker, so I know how it feels to have your own family label and judge you. At first my diagnosis was almost welcomed like a big "I told you something was wrong and I was right!!!" Now it's just starting to sink in how serious this is and I'm afraid, mad, sad, sick, all of it and I sometimes feel like no one is listening or cares. I too get sick of being asked how I feel when it's the same answer all the time...not well! I have a very loving husband who is trying to grasp this but even he gets sick of the "Lupus talk", I think it just comes down to this, if someone isn't going through this, they can't relate to how bad it is. It's really nice to have a place to go (here) where people are going through the same thing, so if no one else relates, we do! :) We need to be here for eachother, and I'm so glad that I found this place! Feel free to tell me all you troubles and I'll share mine, we can do more than sympathize, we can empathize. :D

rob
02-15-2008, 08:08 PM
Hi mlarie,

The people in our lives who don't understand what it's like for us can be a constant source of frustration, and sadness. The first thing I thought upon learning I have SLE was that I'll get through this, because the people in my life will have compassion and understanding. I was in for a rude awakening . Many people in life just don't care. They don't seem to be capable of any empathy whatsoever. But, there is a good side to this as well. Lupus has allowed me to see other people in a different way. The homeless man forgotten by society. The young man with Downs Syndrome who works at our local grocery store. The 80 year old veteran at the V.A. Hospital, who has been all but forgotten by his family. Lupus has given me a true feeling of empathy, and a genuine love for those people who struggle against adversity every day. People who I ignored, or just didn't want to see, now stand out in the crowd. I think you will find that you are blessed in the same way. Some people may never understand what it's like for you. Others will come around after learning about Lupus. Stick with the supportive people, and let go of those who don't. Be assured though, that you will always have unconditional support from the people of this forum.

We are with you.

sits_inthe_corner
02-17-2008, 05:15 AM
Just not the ones you want to! That's what makes this board so important. My husband likes to thing everything is just ducky. He's in complete denile about what's going on with me. I've stopped trying to get him online with what I need to do. I just find away to get what I need. Dont get me wrong...he loves me and if I ask him to do something...he will. But he doesn't understand that the normal day to day things I do...cost me big time.

I've rearranged the house so I can get to things easier with out causing to much pain. I've given away things that we dont ever use that make moving around the house more difficult. He just ignores that I've done this. I dont think I'm explain it well, but it's like living a lie. I dont want to be babbied ... but I do need help around here and that's not going to happen. So we just keep our mouths shut...and keep going.

jesseyleigh
02-17-2008, 11:24 AM
it took me a long time to find the people i knew i could count on! But once you find the people who understand that you may have to cancel plans last minute and their first words are "what do you need? how can i help" they do exist. Its a matter of going through a lot of not so great friends to find the amazing ones. Sure with significant others it wears very thin because they simply want to fix it and dont know how can you imagine being in their place and seeing you struggle every day and not being able to help.

browneyedgirl53
02-17-2008, 02:45 PM
My oh my Mlarie,

Look how loved you are!! I apologize for not jumping in sooner...I have been feelin' the exact same way. I had just lost my job a couple of weeks ago; and the employer said "well, now you'll be able to go off and have a brand new start"....like having lupus is like putting away the laundry. Gosh darn it!

But in the midst of my tears, it has dawned on me that we live in a world these days where the pace of life moves so fast, most folks don't slow down long enough to think about anyone else for any length of time (not to be mean), it's just we fill up our time with "things to do", instead of "people to enjoy"...and thus there are those of us who live with a disease that is not only difficult understand...but we all look so normal; the book my old doctor had written "but you don't look sick"...is such a true statement; I was anguished with the same feelings that you had until I suffered a heart attack, kidney failure, and stroke-like events...my mom and my sister stayed for nearly a year with me. They walked a mile in my shoes...and now they know how devestating this disease can be on your relationships.

I can only share with you what I have done for myself and hopefully you will find a way to communicate with those whom you love the most; how important their contact, relationship, and help is needed when you are not feeling well. It was a very difficult change in my life, I was always a "go-getter" and lived on high-octane burnin' both sides of my tennis shoes and having to slow down and learn that taking your time in relationships is like money in the bank....the interest builds and bonds are stronger.

Stay in touch, stop by often....and know EVERY DAY, we hold you in our hearts and prayers and will looking to hear from you. You are not your disease, you're a beautiful courageous individual that has potential to live your fullest life and to fulfill your dreams....NOTHING can stop you from inviting more friends into your circle, more meaningful communication with your family and loved ones!! Ask for what you need; don't let it eat you up inside....it benefits noone...and only hurts you. You are empowered to seek the peace, joy, and happiness you so richly deserve.

Hold on and hang in there, friend.

Much love,
Browneyedgirl

1roswell
02-18-2008, 02:07 PM
I'm a newbie, undiagnosed, and know exactly how you feel. I have those moments, times, and nights... I can hardly remember sometime what it's like to sleep in my own bed,unless it's a nap in the afternoon.. I sometimes wonder why we have all the luck! ha! I'm 47,female, don't expect to have a long life, Father died at 44 and brother died at 49,from cancer,both. Father of my 3 children died at 39 of cancer.. He we are just muddling thru; but, Thank God I have you.. to talk to!!

UR new friend :wink: [/i][/b]

sits_inthe_corner
02-18-2008, 03:59 PM
That sums up my husband right there. If he could "fix" this for me he would. But because it's not something that he can make go away, he's at a loss and tends to shove it off to the side.