View Full Version : Tired of being sick tired of the mess of my whole life
I am so done with this crap...i grew up in an abused home just to be ill in the second half of my life...what the hell, I have had no life...i am tired of the dysfunctional health system in the niagara region in ontario...i am sick of just trying to manage a day without being a dead person walking. I just can't do this pain anymore and i can't stand my life. This is not even life...oh you look good joanne, does anyone at all care that i can look good and feel like crap. Damn I am sick of convincing people...I just am so sick of it all...I just want...I don't know, I am even too sick to cry. This darkness is like wearing me out. sorry all...
I sent you a PM awhile back, I'm wondering if you got it? I moved this post from the "sticky" area to Lauri's Lounge. Almost nobody would see it in the sticky area. This way, you can get more responses.
I understand the frustration, and the anger with so called health care professionals. Leaf, I had some terrible things happen to me when I was a kid too. And now I'm dealing with not only Lupus, but MS as well. I don't know why these things have to happen to people like you and I.
I get the "Oh Rob you look so healthy" comments all the time. I try to take them in stride, and realize most people don't mean anything by it, they are just trying to be nice, and I don't think they know what else to say really. I gave up trying to convince others to take my problems seriously. If they don't, they are out of my life, and that includes Dr's and all the other specialists. Accept me, help me, otherwise I'll move on is my attitude now. I wish I knew something better to say to you. Just know that you are not alone.
tiggerlishus - Heidi
03-18-2009, 11:05 AM
leaf i'm soo sorry you having rough time i too had some stuff go on in my childhood it just seems to be never ending!!! but most of the time i look at as i was given all this for a reason to help other, educate others, what ever it is i know i'm strong enough to get throu it all and so are you!!! and its help know end with this place and people like rob!! you know we're here for you and sending you lots of virtual hugs xxxxx
03-18-2009, 11:58 AM
Gentle hugs to ya leaf
The pain and being tired all the time wears one out. People around me are so happy that I'm walking with out a cane now...pfft.
While I'm glad to be mobile with out the cane because it means I can walk with out passing out from jolts of pain, I still suffer. But they don't see that.
It gets very frustrating. Because I "look" all better they assume I'm not in pain any more.
Heaven forbid if I should drop something. I aint a pickN it up.
Well I wont go on about it. You understand. I just wanted to let you know your not alone.
They give us things to help "manage" the pain, but it barely scratches the surface.
I continue to search for things that make my life a little easier and fight the battle with hubbyman that clutter is NOT a good thing for me. I need to be able to move freely around and get to items I need easily with out hunting for them.
oops said I wasn't going to go on about that :)
Blaiming it on the brain fog.
One of the best things I found for myself is tensor knee braces. OMG I love them. They cut the pain in half.
Hope you find things to help you cope. You know we are here for you.
sick n tired
03-18-2009, 12:54 PM
Oh Leaf...I so feel for you. Like you I was abused as a child and teen in everyway possible...I hear the frustration that now this should be your time...the crap happened in the first part of your life so now it is like you have done your dues and it is time for the good to happen.
I wish that I could give you a magical answer, but I really can't. I survive with the knowledge that God is there...I can at least hang on to him and know this will not be forever.
I still have extremely dark days...like you and many others, lately on this forum. Some of that can be the disease talking...I would like at times to give up and die, but it just isn't time.
I also have the people telling me how wonderful I look/sound. Depending on the person, it is meant to be a compliment, or because they think I am whining or not really ill....try to consider the source and walk on. That is what I do now..I might answer, Really? and then say How nice that I don't look as bad as I feel, or I have learned to hide it...then with some people I just leave it at "really" and move on...they get the message. Those are the people that I never talk about how I am feeling. The most in depth I get with them is how nice the weather is and do they think it will rain.
The nice thing about this forum is it lets us know we are not alone...not glad that others feel a bad as we, but there is a comfort all the same.
03-18-2009, 01:28 PM
Hi Leaf...tight hugs...
For me, I find comfort in understanding why they don't get it and say you look well, you don't look sick instead of them trying to understand me with a disease.
I find I don't have to explain my disease to anyone anymore, because I know they would not understand or provide the deep empathy I feel I need because they don't have the disease. They have nothing to relate it too.
I do at times with my husband, find myself explaining why I am in the stupid hole...
No matter what metaphors I use, they may understand it for the moment but to feel it, to know our daily struggles it doesn't happen. I ask, do I really what him too because it's so ugly for me.
I figured, within me, I don't want anyone to have the mental daily struggles about my disease in their hearts and minds. I don't want them to feel, feel it...get in my head to feel the icky. No way. It is too much for me and to share that..ugh...so I don't need them to understand it anymore.
I just request patience from him, them if I am tired, if I am in pain, if I want to stay home...it is the disease and not me. THat way no one has to own it. I made a promise to myself I will not take my frustration of my disease out on him, my husband or anyone with shortness, anger...I have to find ways to cope with it. I think the mental anguish is what I suffer most...what was.
I realize I can not base my whole spirit, my heart on whether they get it our not. Creates too much pity within me.
As I look back, when my Mum was dying of terminal cancer, I didn't get it. Though I felt great, great empathy..it ached my heart I never knew what she was going through..her thoughts of dying, leaving her family, her children, her pain, her depression...leaving her career early and her colleagues. Premature death. Changing.
I never labored over and over in my mind, day after day what she was feeling. I lived my life too. I worked, I shopped, went out with friends, took vacations...
I thought I was doing all the right things to comfort her. I'd cook for her, clean her house, massage and slather her with lotion, paint her toenails, drove all over looking for orange sherbet push-ups.....run errands..bathe her... I'd buy anything she mention in passing. I wanted to do all those things...
I know she like it..but now, not then... I know it wasn't enough. I know now the fright she felt, the depression, the drugs, changing, missing who I was...trying to be happy for everyone, getting frustrated and quick to anger.
I know all of us children, eight felt like we were on pins and needles at times because we simply did not know what to do...we didn't understand her pain, her broken spirit.
My Mum, she didn't look sick, not until the last fours months of her life..she fought cancer for 2 plus years.
Times I feel guilty for not "knowing"..but you know, I could have never known because I wasn't facing a life threatening disease then. I also try, still a work in progress not to let my husband ever feel guilty for not caring for me enough, loving me enough...showing his love. He has to life his live also, we are individuals.
Being married to me, means never dissolving your individuality into one another but strengthening the individuality of each other and by me not seeking deep understanding from him, about my moods, about my pain, about my mental plight I am better emotionally, stronger to understand why he does not get...
I've complained in the past, even as early as last week... about his attentiveness, but it isn't about the disease. For me, us.. it is marital issues and not about me with a disease.
I also know I forget too, the wonderful things he did last week. I forget especially when I am having a rotten day. I am learning to reflect and all the things he did, does and not just what happened or didn't today...
I wanted to share this because I thought it may give you a different perspective to help turn your darkness around. It helps me tremendously with family and friends...times I still fall in the hole but now I don't stay in there languishing for days and my trips in are getting fewer and fewer...
Sometimes we have to seek support outside the home, to get the person to person feeling of caring for our disease and for the abuse we had while growing up...in a friend, in a local support group, counseling.
I hope as the day progressed you were able to see some light...
It is hard to be positive, to find goods things in our day while in pain..but there is good in it...we just have to keep plucking at it..make changes, find ways to cope better...
tiggerlishus - Heidi
03-18-2009, 02:27 PM
oluwa i just wanted to say how beautifully put thank you for opening up!!! xx
03-18-2009, 03:05 PM
I am so done with this crap...i grew up in an abused home just to be ill in the second half of my life...what the hell, I have had no life...i am tired of the dysfunctional health system in the niagara region in ontario...i am sick of just trying to manage a day without being a dead person walking. I just can't do this pain anymore and i can't stand my life. This is not even life...oh you look good joanne, does anyone at all care that i can look good and feel like shit. Damn I am sick of convincing people...I just am so sick of it all...I just want...I don't know, I am even too sick to cry. This darkness is like wearing me out. sorry all...
It sucks, it really does. It is amazing how I have found so many people who I can totally relate to. I know exactly what your going through. I went through the same feelings and perspectives. I was also not only raised in an abusive home but a twisted damaging cult on top of it. It was a nightmare from birth.
Then a 16 year abusive marriage.
By the time I was free from the mind control of the cult and my ex, I was too sick to enjoy life. It was so wrong! It is so wrong. I struggled for years to make sense of it all. How do you process this much pain?
"But you don't look sick" I'd be surprised if there is anyone with lupus who has not seethed with frustration after hearing these words. My mother, who I took in and care for told me once "I wish I could lay in bed all day". We should not have to defend the disease that is causing us so much pain!
Anger, frustration, pain, depression, isolation of body mind or spirit, and feeling unloved and uncared for are common feelings dealing with any form of chronic illness.
The reason for my telling you this is to assure you, you are not in the darkness alone. I think I speak for most of us when I say, we understand. We are here with you if only electronically, we are still real humans who care and understand. All is not lost. I have had to learn to find joy in the small things in life just to maintain a little sanity. We can still experience joy. Tomorrow might just be better than today.
Don't lose hope.
03-18-2009, 04:42 PM
Sending you gentle hugs.xxxx
03-18-2009, 05:43 PM
wish i could make it better.
03-18-2009, 08:52 PM
03-18-2009, 09:43 PM
I feel so much love and caring for you as I read these words from Oluwa...Ayahsclan...Rob...everyone. They all sum up the same thing....YOU ARE NOT ALONE...We, all of us, understand better than anyone else in the world possibly can, and we are here for you to unload every bitter feeling, every disappointment, all the unfairness.
I am sorry that so many people have let you down in your life....it's terribly unfair. I hope you know that all of us here will never, ever do that. We support you with open arms and open hearts of understanding.
I only wish one of us were closer, so we could come over and give you a real 'hug' and let you lay your head on a shoulder to cry....
Please do not give up hope for tomorrow...
You are in my prayers.
03-19-2009, 06:12 AM
i woke up thinking about you today....hope your day is better today.
Hi again Joanne,
I hope you are doing OK. Stop back and say hello, when you are up to it. The words on these two pages are real, I know the internet can be so impersonal, but here, we have a little island of real people, who really care. So many of your words ring true with so many of us here. I hope you know that there are others who have a very good idea of how you feel. I mentioned before that I had some terrible things happen when I was a kid. I was a scared, tiny, defenseless little kid, with not a soul on my side to help me.
Now, I'm a pretty big guy, and I certainly can defend myself from any sort of attack or assault from another person. Then, almost like life knows this, I get assaulted with not one, but two invisible enemies that I sometimes find myself defenseless against, MS and Lupus. No amount of physical stature, or self defense knowledge can help me fight them. It's so damn frustrating that sometimes I yell in anger at it, like it can hear me, or even cares. I went through all that crap as a kid, survived it, and learned to deal with it and move on. Then, these stupid damn diseases show up and try to take away what was supposed to be the good part of my life.
They took away so much, but I won't allow them to take away everything. Somedays they have me beat hands down. Others, they are sent to the furthest reaches of my mind, and my life, and I feel good. I forget about them, but they always come back. But, the point is, some days, I win. Some days are good, even great. Those good days can help us endure the bad ones. Knowing that you still have more good days ahead, can give you so much to look forward to, and it can give you hope. I know you still have alot of good days ahead of you Leaf. Don't give up. Don't let the damn disease beat you. I was all alone as a kid. But now, I have dozens of people on my side, and they are right here ready to back me up at a moments notice. We fight a common enemy. But we don't have to fight it alone.
I hope today is a better one for you than yesterday. Say hello when you can, and don't forget that we really do understand.
tiggerlishus - Heidi
03-19-2009, 09:06 AM
Once again rob put soo beautifully sorry you went throu what you went throu as a child!! but your right we're here for each other no matter what time of day theres someone on here soo leaf hope your having a better day today and you get back in touch soon soo we know your ok xx
02-22-2010, 04:14 PM
Please read all these posts.Many people care so much about you and we all will support you always.Lots of love Amanda/xxxxxxxxxx
03-15-2010, 05:09 PM
Just to say im thinking of you and hope you are feeling a little better everyday.We are always here for you.
lots of love