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ritzbit
03-28-2011, 05:07 PM
I'm so frustrated with everything right now. I am trying, in just one day, to get back into the swing of things and everyone is driving me mad. I came home from school today and was exhausted. I wasn't home 5 min and my dad called to check in on me and my aunt wanted me to call her and everyone wanted to aske and million questions and I had a headache and wanted to take a nap. I know everyone is just concerned but how do you nicely tell everyone to leave you the heck alone for once? I feel like everyone is always up my butt about everything lately and Im sick of being asked how I feel and always having someone bugging me. I came home kind of frustrated with school today and am not ready to even look at some of the stuff I got today because my head still hurts and my mom is like come on if your back you need to start getting all this done. Its like give me a break today was my first day back and I was already surprised with a test in english over a book I havent finished ready yet, and give a million worksheets to do between AP english and AP spanish. Im feeling overwhelmed already and dont need to be reminded that I have a lot of work, you know what I mean? I will get to it when I feel ready but trying to force myself to do it when I know I cant isn't going to do anything for me. I wont get anything out of it and will just aggravate myself in the process. I can't just jump right back in like I haven't missed almost 3 weeks of school.

tgal
03-28-2011, 05:45 PM
I'm so frustrated with everything right now. I am trying, in just one day, to get back into the swing of things and everyone is driving me mad. I came home from school today and was exhausted. I wasn't home 5 min and my dad called to check in on me and my aunt wanted me to call her and everyone wanted to aske and million questions and I had a headache and wanted to take a nap. I know everyone is just concerned but how do you nicely tell everyone to leave you the heck alone for once? I feel like everyone is always up my butt about everything lately and Im sick of being asked how I feel and always having someone bugging me. I came home kind of frustrated with school today and am not ready to even look at some of the stuff I got today because my head still hurts and my mom is like come on if your back you need to start getting all this done. Its like give me a break today was my first day back and I was already surprised with a test in english over a book I havent finished ready yet, and give a million worksheets to do between AP english and AP spanish. Im feeling overwhelmed already and dont need to be reminded that I have a lot of work, you know what I mean? I will get to it when I feel ready but trying to force myself to do it when I know I cant isn't going to do anything for me. I wont get anything out of it and will just aggravate myself in the process. I can't just jump right back in like I haven't missed almost 3 weeks of school.

I know this has been brought up before but did you ever get a chance to talk to a counselor? I know you don't want to do it but maybe they can work out a disability schedual of some kind. I know there is a young man where I live who has cancer and they did it for him. It might help you from getting so overwhelmed which is going to make you flare worse.

I really hope you find a solution for this!

ritzbit
03-28-2011, 06:04 PM
I finally talked to her today and she said she can put me on some plan thing that would make my teachers put me on a grading curve of some kind and make me only do the work I needed that was critical stuff so I dont have to make up absolutely everything. And I can still go on home bound apparently and they'll send a tutor twice a week and if I have to miss school I can and it wont count against me. But as of right now none of that is in effect so I'm just stuck with all these papers that I dont have done and books that aren't read and all this other stuff. So frustrated with EVERYTHING right now. I really just want to take a nice long nap and forget about all this stuff going on right now. I dont know what Im going to do when I go to college. How am I going to take care of school stuff and myself without anyone to help me? I have too much on my mind today.

mountaindreamer
03-28-2011, 07:42 PM
hi ritz,

so glad that you talked with a counselor....i hope she can get these provisions set up very quickly...you need to be exempt from some of these assignments that are hanging on your shoulders.

as far as all of your calls from family, i can understand where you are coming from. sometimes, we just don't feel up to even talking on the phone. I tell my family that if i am in a flare and am in bed, that i don't answer my phone...i call people back when i feel up to talking, but everyone knows that i don't always answer. i know it is not that easy for you, because you are so young, and people are really worried about you. that is really wonderful that they care so much, but you really need some rest time.

hope your day is better tomorrow.

steve.b
03-28-2011, 08:34 PM
you can only do so much.
the more you stress, the less effective you will be.
start at with the most important paper. and do them 1 at a time.
if you dont finish them all............................ so what

it is not easy........but you need to take it 1 step at a time
do not try to do too much at once.

ritzbit
03-29-2011, 03:24 AM
I don't know if I'm going to make it through the day today. I've had a really bad headache since yesterday, and it was still there when I woke up. I might have someone come get me after a few periods. I feel like I'm sick with a cold or something on top of everything else.

SandyR
03-29-2011, 07:50 AM
Take it one day at a time. Yesterday was a really rough and hard day on your body. Today you might need to spend a little less time. It's like learning to swim again. You have to go in one toe at a time until you are in and comfortable and not try to jump off the high board on the first day. Eventually your body will adjust to the workload but for not be sure to listen to it as it is super sensative. I know it's frustrating to have everyone pester and smother you with concern and love but just remember that the alternative was not that long ago where you were practically screaming for your family to listen to you and believe in how sick you are. This is a huge step forward and since it's something new to everyone you really have to be the one to set the rules and boundaries. Talk to your dad and aunt and mom and let them know you need a little space. Let them know that you appreciate their concern but need a little mental break from talking about and living in this disease all day. Maybe some quiet time between 3 and 5 where you can just be you and do what you want no medical questions. And I am so proud of you for talking to the counselor. I know you really didn't want to do that, but as I have said in the past, it really is in your best interest right now and it will only help you when you are in college to have a plan in place now to get accomodations you may need later. If you didn't already get a chance, look up the state ADA Title 2 and 3 laws.

red246
03-29-2011, 10:39 AM
ritz - sent you a pm, (((HUGS)))

ritzbit
03-29-2011, 10:58 AM
I went home in the middle of the day. I wanted to stay for spanish because I knew we were doing a speaking activity today and didnt want to miss it. It was alot harder that what we did at the beginning of the year and she wanted us to record our responses right away and we only had 20 seconds and I was so overwhelmed with it and couldnt think fast enough and my friend kind of stepped in and told my teacher I wasn't feeling good because he could probably tell I was almost in tears from frustration. I went up to the nurse and signed myself out and cried with one of the counselors working with me right now. Its so frustrating to know I can do the work because Im smart but my brain just isn't working at all. I can't THINK. How am I supposed to do anything if I can't think straight?? I've never had such problems just doing my school work. I read through my original post on this thread and half of it doesnt make sense. What the heck. I go to my rheumy and shrink today. I could use someone to listen to me complain for an hour today.

magistramarla
03-29-2011, 09:49 PM
Hi Ritz,
Is this couselor going to set up any of those programs for you? You need a break!
Do you remember Ashley having some of these problems last year? The last time we heard from her, she was doing fairly well in college.
I think that if your docs can just get this all figured out and controlled with the right meds, you will be feeling better and less stressed.
You know that you are very capable of doing college work, and I think that you will thrive there.
Hang in there, honey!
Hugs,
Marla

steve.b
03-30-2011, 05:08 AM
i wish you the best.
i am almost 50, and i suffer from brain fog to.
i understand your frustration.

it is not easy, you need to start slowly.
it is impossible for a fogged out brain to do too much at once.

SandyR
03-30-2011, 10:28 AM
I went home in the middle of the day. I wanted to stay for spanish because I knew we were doing a speaking activity today and didnt want to miss it. It was alot harder that what we did at the beginning of the year and she wanted us to record our responses right away and we only had 20 seconds and I was so overwhelmed with it and couldnt think fast enough and my friend kind of stepped in and told my teacher I wasn't feeling good because he could probably tell I was almost in tears from frustration. I went up to the nurse and signed myself out and cried with one of the counselors working with me right now. Its so frustrating to know I can do the work because Im smart but my brain just isn't working at all. I can't THINK. How am I supposed to do anything if I can't think straight?? I've never had such problems just doing my school work. I read through my original post on this thread and half of it doesnt make sense. What the heck. I go to my rheumy and shrink today. I could use someone to listen to me complain for an hour today.

I find that inability to think one of the most frustrating things to deal with. Why won't my brain tell my body what it should already know to do? (((hugs))) it will come back to you. it just needs a little time.

ritzbit
03-30-2011, 10:58 AM
Not being able to think is almost worse than not being able to walk. I stayed home today. Because my rheumy increased my sleeping meds again and I was completely knocked out lol I stayed asleep for a very long time. I will have to take it earlier tonight so I can actually wake up in the morning for school lol Maybe sleeping will help my faulty brain.

mountaindreamer
03-30-2011, 11:10 AM
hi ritz,

i agree, the feeling of not being able to think is one of the worse symptoms that we have to endure. it is so frustrating. but, i do find that once i have the flare under control, my thinking abilities do return. So, hang in there....

my dr. increased my migraine medication, and i have to take it early in the evening, or i sleep half of the next day away....can be so frustrating.

hope you feel better tomorrow.

ritzbit
03-30-2011, 05:53 PM
If I hear one more time that "you need to get working on stuff" or "its time that you get back into the swing of things" I think I just might kill someone. I CANT THINK YOU GUYS. I dont think going back to school magically changed that fact, in fact it just made it that much more obvious. I just about went off on my mom. Trying to do my homework is making me want to scream and rip my hair out, so no Im not going to do it just to aggravate myself even more. When Im having a good hour, half hour, whatever I'll do some of it then but when Im tired hot and have a headache I dont think thats the best time to try to tackle a book. I dont see how she doesnt get it when she's with me all the time. She's starting to sound just like my dad, and she knows how mad I've been getting when he says stuff like that. Im sick of hearing how I "just" lay around, as though Im being lazy. Excuse me if staring at the TV seems like a better option when my brain feels fried. Im not exactly proud to be on my butt doing nothing. Half of what I've been doing doesnt even really interest me. But its about all I can do right now. No one seems to get that.

steve.b
03-30-2011, 06:37 PM
we understand.
that is why we are here.

ritzbit
03-30-2011, 07:05 PM
If I didnt have you guys I would probably have gone completely crazy by now. I can't explain it to anyone and unless I break down in tears over anything everyone just thinks Im being over dramatic or something. Its ridiculous. Everything is just getting to me lately. I feel like I cant do anything. I feel like such a Debby Downer lately.

SandyR
03-31-2011, 06:33 AM
Sometimes it takes us being at our worst for others to see how bad things are when we are at our best. Try to remember - they don't really get it - they only see the lab numbers and the physical improvement that you are now more mobile. The brain stuff is really hard to see. I know you are (rightfully) frustrated and angry at having your parents tell you that you are being lazy but try hard to just sit down with them and lay it out. Explain exactly the way you did here about how you feel. Hopefully they will get it. If not, don't lose hope. You are doing the right thing by listening to your body. You're entitled to even being down on some days. It's all part of our normal. Not their normal so that's why they don't get it. In the end though you really do have to listen to your body so good for you that you are doing that. (((hugs)))

ritzbit
03-31-2011, 06:59 AM
School is just overall a big stress in my life right now, more so than it usually is. Taking 3 AP classes was hard enough without having all this going on too. And other people stressing me out more on top of how much I'm stressing myself out isn't helping at all. I hope I get approved for home bound so that I can work at my own pace at home for the most part. Because even being in the classroom is stressful because I'm never where they are all at right now, and then I'm expected to do the same stuff they are, but I'm really far behind them. I can't even get that much done at home because when I'm at home I want to sleep. I don't know how to get myself back to where I was. I don't understand why everything else is seeming to get better but the sleeping and thinking isn't.

SandyR
03-31-2011, 07:09 AM
I don't know why either but I know that it happens for me the same way. Physically I always look much better than I mentally feel when coming out of a flare. I also always feel worse before I look bad when going into one so maybe there's a reason behind it. The home bound school tutor sounds like a really good idea for you right now. I hope that comes through for you very quickly. I can remember how much pressure AP classes were in HS and that was before I had brain fog. I can only imagine how much harder they would be with it.

Nat
03-31-2011, 07:27 AM
Hey ritz
Sorry to hear you're feeling like this, I think its one of the worse things about lupus is everyone having an opinion of what you should and shouldn't be doing. When were sick most of us know how hard we can push ourselves but when u feel awful the last thing you want is people telling you you're lazy.
I have the same issue with the brain fog, I have a pretty serious job where I need to be on the ball all the time but the brain fog makes it hard. Don't know how I would have got thru my uni degree with it. All I can say is take it at your own pace and don't let others determine the pace you move at.
It's hard being young and seeing all your mates getting around with nothing as close to what you're dealing with, tests one thing I've struggled with! Hope you start to feel on top again soon :-)

ritzbit
03-31-2011, 12:47 PM
My teachers want my make up turned in by next Friday =( how am I supposed to get 3 weeks worth of work in 3 classes done in a week? I can't imagine what college and the rest of my life is going to be like when just finishing high school is hard. I want to be a doctor. I dont know how thats going to work if I ever have these kind of issues in med school. I hope that I can keep my lupus in check for oh say the next ten years? lol that may be wishful thinking but wouldn't it be nice.