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ritzbit
12-20-2009, 09:44 PM
I went to the Zoo tonight with my family for the Festival of Lights. It was freezing and no one really seemed to care about the fact that I couldnt feel about half my body. They all said it wasn't even that cold and Im not supposed to be out in weather thats under 50. I was miserable the entire time. And by the end of the night I could barely walk right because I couldn't feel my legs at all from my thighs down. It was terrible. And then they tried to act like it was my fault for not dressing warm enough but they didnt warn me to pack extra warm clothes when I went to my dads this weekend. So I am just really bummed because I was looking forward to going and they ruined my night.

:hissyfit:

wolfwhisper
12-20-2009, 10:00 PM
I'm sorry you didn't have fun. It really stinks to watch everyone have fun while being miserable.:hissyfit: Maybe they just didn't know how cold it was going to be. Next time you should bring more jackets and pants even if you might not need them. At least then you'll be better prepared. I usually use my parent's clothes over mine when it gets too cold and I don't have enough to wear. Just a thought.:huh:

kim,l
12-21-2009, 02:37 AM
ritzbit i am sorry you had such a miserable time sometimes family just do get our limitations they just do not know or understand what lupus sufferers go through so they find it hard to relate i have family members who just think i should just get on with life and ignore the fact that i cannot go out in the sun i think they think i make something out of nothing i found i just had to stand my ground otherwise i was the one getting sick. i just had to let them know that i love spending time with them but there was just certain things i could not do because of my lupus and could we just come up with comprise that would suit everyone otherwise i was sorry but i just could participate that my health and wellbeing had to be a priority to me . now they try to do activities that accomodate my needs but we still have fun. hugs kim l

scubagramplit
12-21-2009, 08:20 AM
good advice Kim, thats pretty much what I do also, I try not to do what is going to cause a flare up.

abbasgirl
12-21-2009, 08:49 AM
Ritz...so sorry you went through that. Kim's advice is spot on! You have to take very good care of yourself sweetie.

ritzbit
12-21-2009, 10:44 AM
I'm planning on just staying inside the rest of the winter. Im cold enough inside as it is anyway. I walk around bundled up all the time. I just wish I could do the same things I do every year =(

abbasgirl
12-21-2009, 11:08 AM
Oh sweetie...you know we can relate. It won't always be like this. Hang onto hope and just focus on what you can do and enjoy doing for right now, okay? It's going to get better and until then try your best to make the best out of what you can enjoy while you take very good extra special care of your sweet self.

((((Hugs)))))

ritzbit
12-21-2009, 11:15 AM
Im trying. I just wish everything would go the way I want for once

capncrunch
12-21-2009, 11:36 AM
ritzbit,

i'm in the same situation as you. my family doesn't really see this as a big deal. especially my dad lol he's always like "your a teenage you should be tough like me and i'm old dont be a wimp cuddling in the blankets every winter" But, when my body is like half frozen i take slow jogs around the park to warm up.

wolfwhisper
12-21-2009, 01:02 PM
I have to stay inside too, although I'm more active during the winter. Wish I could jog to keep warm. For me, jogging and running cause major flares and makes my lungs burn. lol. It will get better with time. Well, you'll get used to it a bit more, anyway. Yeah, I get the same thing about the "I'm older...." stuff. My parents are like "We go shopping when we're sick or tired too you know" and "you shouldn't sleep to much. You need to regulate your body". It's hard to do sometimes.

ritzbit
12-21-2009, 01:07 PM
I feel like an old woman alot. lol I always have an ache or complaint about something. This cold weather is making my Raynauds freak out like crazy. It sucks.

kim,l
12-21-2009, 05:35 PM
ritzbits complain to us as much as you want i know i have been doing it a lot lately but you have friends here who understand you all have helped me this year through the bad times and i know how you feel i go to the shops and see women my age rushing around doing there shopping and i am on a walking stick having to sit down all the time and i have spent the last 3 days in bed because i am flaring up from being out in the heat last week i have no energy and ache all over i have temperatures rash on arms and face and feel nauseas lupus sucks i feel like i am in my eighties but this is the lot we are dealt and some how we just have to learn to adjust i scream into my pillow to release tension or i put on some nice calming music i also find writing my feelings down in a journal helps me hugs kim l

pandagirl
12-21-2009, 06:18 PM
At least we get it...I went one night last week to get the Christmas tree...it was in the 20 degree range...even my 11 yr old didn't want to be out..my tree is "interesting" looking....lol.. It was so cold and my husband kept looking at more trees. I was like...'okay that one is good'. I could not bear the cold and the tip of my ear throbbed all night.

scubagramplit
12-21-2009, 08:57 PM
yea check, LUPUS SUCKS BIGTIME!I think we all must be flaring right now. You are in our thoughts and prayers ritz. I sincerely hope you can have a merry christmas. May Gods love be with you! Jim.

AyahsClan
12-21-2009, 09:05 PM
Hi Ritzy! For me the most difficult part of chronic illness is that NOBODY truly understands what my body is doing to me because they just can not relate. It is what it is. Sometimes we have to be honest and set the boundaries where we need them whether they are empathetic or not.

Sorry your day was ruined.

brandichi
12-22-2009, 06:43 AM
Hey Ritzbit,

I'm really sorry that your family doesn't get it. I know how frustrating that can be, especially when you have a setback because of it. I hope somehow they reach a point that they truly LISTEN to you and understand that this is really affecting you when they make you do things you aren't able to do. Has your doctor talked with your parents? If not, you might ask them to come with you to your next appointment - if they won't listen to you, they will probably listen to your doctor!!

Remember that all of us DO understand completely, because we're all living this life every day too. And I understand all too well the anger and resentment at not being able to do the things you used to do, and still want to do, but can't because of lupus, Reynaud's, and everything else. It's really really hard. The only thing I found that helps me is to find substitutions that I enjoy. Maybe not as much, but still. Next year, will your parents let you stay home instead of going with them? And if you stay home, what can you do there while they are gone that would be fun? Bake cookies? Make a gingerbread house? Decorate your bedroom window with that fake snow or lights and make a Christmas scene?

ritzbit
12-22-2009, 10:52 AM
Thanks you guys. Im very grateful to have you all to talk to. The only person who actually seems to almost get it is my mom. Everyone else acts like they do and then pushes my limits with things. I really doubt I'll be going out to do anything next year that involves being out doors. But I'll find something else to do. I hope you all have an awesome christmas =)

abbasgirl
12-23-2009, 08:26 AM
I'm so glad you've got someone that gets most of it.

Merry Christmas sweetie!

ritzbit
12-23-2009, 09:24 AM
I had the worst night. I found out I was scheduled to work on Christmas Eve when I didnt think we'd be open so I didnt ask off. And they said they're going to write me up if I dont come even though I probably wont even have a ride becuz my family will probably be going to church and then straight back to our house becuz we're having our family party at our house this year. And I explained that to my manager. Who basically didnt care. And to top it all off my mother decided to nag me about it when it was very obvious I was in a really bad mood. And she screamed at me for saying I was pissed off? and told me to stop cussing at her. And I told her I wasn't cussing at all and she was basically just trying to make her point that its my fault I have to work and Im not dumb and I realize that but she just had to keep pointing it out when I was already upset. Then we were fighting and screaming and she smacked me and I was up crying and no one would talk to me. Im sooo tired. I've barely slept in 3 days. Mostly becuz I've been getting up early to HELP HER watch my little brothers and clean her house. Might I add all she's been doing the past few days is nag about how Im not doing enough. So Im pretty much just really upset and tired. I need a break. This is SUPPOSED to be my break. I get away from school and now my family and work is stepping in to stress me out. Sorry for the long message.

capncrunch
12-23-2009, 11:02 AM
welcome to teenage life, lol.
i do the same things too, but my parents owns a restaurant so i have to be there

DrinkofWtr
12-23-2009, 04:08 PM
Sorry your night was ruined. Isn't it something how the blame is put on the one who has lupus?

scubagramplit
12-23-2009, 08:10 PM
Yes we do always seem to recieve the blame and that is why we all post here so we can talk to someone that understands. I do consider myself blessed due to the fact that I have my family that supports me, and even if they do not understand exactly what I am going through they do try and they do love me and I love them and with that and more importantly with Gods love we will all make it through this. Ritz I wish you the best and we will be praying for you. God bless, merry Christmas, and take care. Jim.

ritzbit
12-24-2009, 11:39 AM
I just love getting written up on Chrismas Eve. But whatever. Im not going to let it bother me lol who cares about a part time job at McDonalds lol

scubagramplit
12-24-2009, 12:54 PM
I don't care what any one says either, you deserve a break today( haha a little humor from days past ) I wish you a merry Christmas and some peace and quiet and some well deserved and needed relaxation. God Bless, Jim.

mountaindreamer
12-24-2009, 02:36 PM
hi ritzbit,

i am so sorry for what is happening to you. Yes, you might get written up, but that does not mean that you are fired. The polite thing to do would be to tell the manager in advance that you can not be there because you will not have transportation. Don't worry about the job, you will be ok.....your health is the absolute most important thing in your life. You take care of you.

i hope your days get better, and i hope you have a nice christmas. Give yourself the gift of peace....just for one day.

scubagramplit
12-24-2009, 07:45 PM
hi ritzbit,

i am so sorry for what is happening to you. Yes, you might get written up, but that does not mean that you are fired. The polite thing to do would be to tell the manager in advance that you can not be there because you will not have transportation. Don't worry about the job, you will be ok.....your health is the absolute most important thing in your life. You take care of you.

i hope your days get better, and i hope you have a nice christmas. Give yourself the gift of peace....just for one day.

Amen to that mountain dreamer!

ritzbit
12-25-2009, 06:38 PM
I had an awesome Christmas!!! I got a new camera! =D

Im about to put up new pics

scubagramplit
12-25-2009, 08:42 PM
That is cool, sounds like you had a good Christmas:) I will be looking forward to seeing some new pictures. Hope you have a good weedend. God bless, Jim.

ritzbit
12-26-2009, 09:58 AM
I just put up some of my Christmas pictures =)

Im in love with my camera lol Im still trying to figure it out though

abbasgirl
12-26-2009, 11:42 AM
I'm so glad you got such a cool toy for Christmas! Your pics are great, Ritz!

ritzbit
12-26-2009, 12:39 PM
Thank you =)