Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Hi everyone........
Friday was my toddlers birthday and we spent the day at Disneyland...It was a wonderful day and celebration. His first visit ever....I woke up yesteday at 7:00am and had my neices birthday party that afternoon. Though the thought had crossed my mind that I may have over-done it the day before, I was hoping for the best..... After being at the party for an hour, the wave of feeling terrible came over me. I didnt want to talk to any of my family....was not my normal self. My toddler was just being a boy, my husband was just being a man....the next thing I know, Im being hollered at by 3 people to see where my baby cousin was (18 months) husband hollering at me for something.......and I BROKE DOWN. I am a VERY STOIC person and can usually control my emotions but I started crying and I sware, I had to hold back from literally sobbing. I spent the next 2 hours choking back tears, couldnt talk or be around anyone.....It was miserable. I felt miserable physically and emotionally. Like I could literally cry a river. Which, I probably just need to do. My husband was ticked at me that I just didnt say, "Lets leave...I dont feel well". He doesnt understand that I dont want to ruin my sons good time.....I do my best to give him a normal childhood regardless of how crummy I feel. I was surrounded by my immediate family and I just wanted someone to take me aside (like my flipping MOTHER or Father) and say, "whats wrong honey? Are you ok?". None of them get what I am having to go through...This is why I am a hermit and dont like to be around anyone but my son and husband.....I dont tell any of them my recent issues, the chemo drugs I am having to go on because quite frankly, they dont seem to care.............I just hate feeling sorry for myself but I do right now. My life is so unfair. I think I just need a good cry........
Just needed to express my feelings to people who understand........I am so thankful to have some people in my life who "get it", though I have to admit, it would be nice to be able to be face to face with you, get a hug, a shoulder to cry on, by someone who understands and is compassionate to what we go through....It is so hard when you crave something (understanding and a little sympathy) from people who dont give you the time of day.........All my selfish mother could talk about is her MAID needing to take her 4 animals to the shelter (which she had no business getting) and if I could help her with it....I just wanted to SCREAM at her....HELP YOUR FLIPPING MAID BEFORE ME, AS USUAL, MOM..... I wish I could tell my family how I really feel....At this point, I dont even care if I never spoke to them again. Just telling them what a bunch of selfish people they are would probably make me feel so much better....
Thanks for giving me a place to vent....My strength is at a low right now....Im just glad I have people here who understand..
Hugs & Love to all,
Melissa
Friday was my toddlers birthday and we spent the day at Disneyland...It was a wonderful day and celebration. His first visit ever....I woke up yesteday at 7:00am and had my neices birthday party that afternoon. Though the thought had crossed my mind that I may have over-done it the day before, I was hoping for the best..... After being at the party for an hour, the wave of feeling terrible came over me. I didnt want to talk to any of my family....was not my normal self. My toddler was just being a boy, my husband was just being a man....the next thing I know, Im being hollered at by 3 people to see where my baby cousin was (18 months) husband hollering at me for something.......and I BROKE DOWN. I am a VERY STOIC person and can usually control my emotions but I started crying and I sware, I had to hold back from literally sobbing. I spent the next 2 hours choking back tears, couldnt talk or be around anyone.....It was miserable. I felt miserable physically and emotionally. Like I could literally cry a river. Which, I probably just need to do. My husband was ticked at me that I just didnt say, "Lets leave...I dont feel well". He doesnt understand that I dont want to ruin my sons good time.....I do my best to give him a normal childhood regardless of how crummy I feel. I was surrounded by my immediate family and I just wanted someone to take me aside (like my flipping MOTHER or Father) and say, "whats wrong honey? Are you ok?". None of them get what I am having to go through...This is why I am a hermit and dont like to be around anyone but my son and husband.....I dont tell any of them my recent issues, the chemo drugs I am having to go on because quite frankly, they dont seem to care.............I just hate feeling sorry for myself but I do right now. My life is so unfair. I think I just need a good cry........
Just needed to express my feelings to people who understand........I am so thankful to have some people in my life who "get it", though I have to admit, it would be nice to be able to be face to face with you, get a hug, a shoulder to cry on, by someone who understands and is compassionate to what we go through....It is so hard when you crave something (understanding and a little sympathy) from people who dont give you the time of day.........All my selfish mother could talk about is her MAID needing to take her 4 animals to the shelter (which she had no business getting) and if I could help her with it....I just wanted to SCREAM at her....HELP YOUR FLIPPING MAID BEFORE ME, AS USUAL, MOM..... I wish I could tell my family how I really feel....At this point, I dont even care if I never spoke to them again. Just telling them what a bunch of selfish people they are would probably make me feel so much better....
Thanks for giving me a place to vent....My strength is at a low right now....Im just glad I have people here who understand..
Hugs & Love to all,
Melissa
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A friend sent this to me..As far as I can see, grief will never truly end.It may become softer overtime, more gentleand some days will feel sharp.But grief will last as long as Love does - ForeverIt's simply the way the absence of your loved onemanifests in your heart. A deep longing accompaniedby the deepest Love some days. The heavy fog mayreturn and the next day, it may recede.Once again, it's...
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theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??
"He who has a why to live for, can bear with almost any how."
-- Neitzche
"They may shine with the misinformation of the age, but they SHINE."
-- Salinger
I know I don't really know you, but I love you and I hope today gets better.
Love,
Shiree
I SO understand. It is so hard to "appear" normal for your kids and try to treat them normally like other kids. The truth is that we AREN'T the same; that doesn't mean we are WORSE than other moms. In some ways, I think we are better. I think I have spent more time sitting in bed with my kids working with them to learn to read, playing board games, checking their homework. Although I can't take my kids to the beach, I am THERE FOR THEM pretty much all the time. I'm not gone at a job 40-60 hours a week, putting them in to day care or the like.
You TRIED to do what you thought was the right thing. You just underestimated the amount of strength you had left. There are some things you'll know from experience will ALWAYS exhaust you---Disneyland is one of those things. Never go to another event the day after a Disneyland like day. It's just too damned hard for any of us to do. You're not alone here; I know I couldn't have done Disneyland and gone to a family birthday the next day.
I think your biggest problem is not wanting to say no. You want to make everyone happy---your child, your husband, your mother, your sister, your sis-in-law---and you can't. You need to choose. My hubby and kids always come first for me and they probably do fr you too. Remember to PACE yourself and recognize what you can and can't do.
Men don't know what to do when we cry. I'm sure that your hubby was scared, freaked out, and a bit embarrassed when his strong wife broke down like that. We all know you were trying. But sometimes you have to SAY NO and not try. Send a gift to the birthday girl and make an excuse. Lie if it makes you more comfortable (something we've discussed on another post). We shouldn't have to lie, but some times that's just easier than dealing with people who don't understand how we live. Some people will NEVER understand. They just won't so don't bang your head against that wall, you'll just hurt your head. They won't change.
Keep your head up! We are there for you.
Tracy
You can't choose your family, but you can choose to avoid dealing with them, when you are at a low ebb. There's nothing wrong with just sending a gift or making a phone call....You won't change their behaviours or personalities, but you can change how you let them affect you. Sometimes retreat is the best form of defence.
Thanks for sharing your feelings with us. It serves to bring us closer together, despite the miles that separate us. You are a strong, loving member of this community...don't ever forget the high regard we have for you...as always my wish for you is love, light and peace.
Wishing you a better day.
Jessi
Your story struck a chord in me although my experience is slightly different. My family used to travel together when the children were young. We had timeshares in orlando and went there every year. I would always be the one who would hang back and let my sister and brother take my son and the other children at the break of day. Of course they had to be the first ones at the park. Well, it was not for me and I knew I'd never be able to do a full day although I really really wanted to. My parents and husband would hang back with me and we'd go sometime in the afternoon. We'd also have to plan which days we'd be going cause they knew I'd have to take a day off. I used to feel guilty and I hated that I couldn't go all day but I guess it was wasted emotion.
We can't do what other people can and when we don't pace ourselves, and believe me I've done that, I am so miserable I snap at everyone around me. I snap other times too, but especially when I've overdone it! I'm sorry you don't have the support from your parents, who should be ashamed of themselves, but you know where they're coming from and you have to accept it so they can't hurt you anymore. You have to be grateful for your husband and son who love and accept you as you are. And by the way, it is so okay to break down once in a while. I'm on antidepressants that I swear stop me from crying. I definitely think I could use a huge sob once in a while but it doesn't happen.
I agree how nice it would be to actually come face to face with someone who truly understands. My whole life I've never been friendly with anyone sick no less with lupus or kidney problems. I guess this board will have to do and thank goodness we have it!
You take care and kiss your son and husband Try to keep your distance from your parents, and if you can't, don't allow them to push your buttons. You can take away their power to upset you. It can be done!
Dale
I'm sorry that they made you feel bad, I would have felt bad also, but I probably wouldn't have been as nice as you. It is so hard when you feel terrible and the people that you are closest to has no empathy. I wish you could tell them how you really feel also. You are a caring and loving mother, at least your son will never have to feel the way that you do right now.
I hope the venting made you feel better and we do understand and care so much for you. Get some rest and I know this may be a new concept for you, but please take care of yourself first. I can't give you a real life hug, but many cyber hugs your way!!!
I guess you are a great example of that -you offer so much on here, and I'm sorry that it's your time to feel bad .
Tracy is right of course you have to learn to say NO .
- I used to find that so hard to do - but at last it's my new favourite word . I have even learned to do it without feeling guilty LOL
It was you who suggested the best course of action for your situation, so I hope by now you have had that good cry.
Research now reveals what we already knew instinctively - crying releases stress hormones.
Take care hope today is a little brighter for you
Thank you all so much for picking me up when I was down....I am so thankful to you all.It means so much to be (life saving really) to have you all that completely understand my emotional breakdown and remind me of the same advice I always try to give to others when they are in the same position as me. Dont know what I'd do without you guys and my PAXIL :)
I am much better now. emotionally and physically. My husband took my toddler to my in-laws (we still have their house even though they passed away) Sat. night and spent all sunday there. I went to bed at 8:00 sat. and rested sun..Amazing how some rest can make us feel so much better. One day you feel like your dying, the next your back to feeling what is "normal" for you. Im very thankful that my husband has no problem and encourages doing this for me.
As for my family. None of them called me yesterday to see how I was feeling....No surprise there. You all gave me the advice about them that I needed to hear again. I can control how I allow them to make me feel. It is something I have struggled with for so long. Im just done with it. I sware, I truely believe that repressed emotional feelings and cruddy childhood experiences can cause many auto-immune disease's. My mom has always been a "mother" in name only. Same as my sister and father. The thing that gets to me is that I try to be the best person possible. So much more giving and caring then them. I have given back so much to society with my animals and caing for them. Yet I am the one who has all the problems...It doesnt make sense to me. I am very very thankful though that I have broken the mold and KNOW that I am the best mommy/person I can be. My son will never know what it is like to feel sad and lonely from the lack of nurturing parents..
Enough about me now :) Im ok....I will take all your wonderful advice and try my hardest to stick to it. It was all amazing advice which I just needed to be reminded of.
Much love to you all,
Melissa