as many of u know these last few months i have gone through alot. well its really having an effect on me and my family. i have never had my days and nigths mixed up so thos is new. i dont mind it but my mom hates it and seems determined to fix it. she is mad cause she thinks i can just change this patteren but i cant. it also doesnt help that i have had pleursy for a month along with other things causing lots of pain. i have never gone through a period like this before with my fibro. i have never had so many problems at once. i feel like i am dealing with it the best i can. i am trying not to complain and to just keep to myself around the house. i have tried to get better but everything i do just seems to fail. i want to get help and i have tried but all my mom sees is me in my room asleep. she has no idea that i was falling asleep as she ws leaving for work. and now she just doesnt seem to care. i wish i could b aanywhere else but here. i know the grass isnt greener on the other side i just cant handel the stress at home or the fact that everyone seems mad at me cause i am the only one not working.
part of me feels like a little kid who says they r going to run away cause they didnt get there way. but i do want to run away and i could but without money i am not going to get far. i know this may sound crazy but i have gotten to a point where i just want to b away from my family. they r making things worse by always making me feel bad about what i cant do.
i have tried to explain things to them so they can understand but it doesnt work. i am so sick of the drs around here. they dont seem to really care about helping patients. i feel like i am just a huge burden on everyone. i feel like the only people who care and understand me r those of u on this site. if only i had u for family.
Oh, poor EyoreLover!!!! I'm so sorry! If it helps to make you feel any better, your fight for disability should be easier now because SSDI has just accepted fibro as a disability. You have to meet the criteria they set but it's pretty standard for any fibro sufferer. Maybe you need to call your lawyer and ask about it.
I also think you may need to kidnap the car for a day and get yourself to a teaching hospital, even if it's several hours away. Call in advance and try to get either an appt or else some information on what they advise you to do in terms of getting treatment there. Also explain your financial situation. Are you on Medicaid? If so, you should be able to get are there.
Once your disability claim is approved, you CAN move out and get a little place of your own, hopefully. I don't know what rents are like there.
I also think it's time to get one of your doctors to write on medical letter head what's wrong with you and giving it to your mother. If she sees it in a doctor's handwriting, maybe she'll understand it and you better. If not, just think about the possibility of getting your own place.
If I feel better, I'll try to call you. I'm just not doing too well myself at the moment. Can barely see/read the screen and keep hitting the wrong keys. Big time fibro fog problem + pain.
But we're always here for you, and I'm always here for you. Just write away.
thank you for the information. i will call and find out what my lawer may need. we just filled the 3rd appeal and also to b seen infront of a judge. right now i have no insurance at all. i really want to move out not just to b on my own but also cause i really want a pet. i had a kitten who died right before i moved to where i am. my parents will not let me have another and that was even when i could pay for the cat.
i tried to figure out to get to the teaching hospital using the train but no train seemed to b the one i needed. i will have to call and figure it out. the problem with driving to the hospital is its in the city of chicago and u have to pay to park and its not cheep u can end up paying $15 a day in some places. its so bad that many people who live in the city dont own cars.
Hey girlie... I'm sorry you're feeling down. It's so hard trying to stay positive when you feel like crappy doo doo's.
When you're suffering that much and your sleep pattern goes out the window for a while it really messes your head up doesn't it. Then on top of that you have someone making you feel bad, its just a nightmare. Try not to get paranoid about it. Talk to your mum or anyone else directly and see if they defo do think bad of you at all. You will prob find its not as bad as it seems. I have to be direct with some people before my head explodes and I eat someone alive. We get so confused and sensitive that things get blown out of proportion really quickly. I'm not saying its in your head (because I am too young to die lol) but get things out in the open so you know exactly what you're dealing with.
Get all the information you need to find out what your options are too, especially regarding the housing situation. It is hard to make the change but many of us can cope living on our own, and learn to love it. We can do what the eff we want when we effing want to. We don't have to answer to or justify ourselves to anyone. And I get to watch as much Judge Judy as I want!! I love that woman - such a biatch but so clever and ridiculosly funny!!
Don't forget we're here too. I'm here any time you need me. You can send me your phone number and I can call you any time you need. It doesn't cost me a penny (or a dime!!) either. It's a shame we can't all adopt each other and create our own community. I would even build all the timber frame houses too!! (May need a little help though if you don't mind passing up a few screws...)
On that note, "screw" everyone else if they can't just give us a break or help a person when they need it. We have each other and we will get through the hard times together.
Can you qualify for welfare? I mean, you aren't working, so have no income, so should be able to get some help. If so, you might be able to move out on your own.
I'm so sorry you can't have your kitty. I know how important it is for me to have my dogs and cats with me, esp. when I'm feeling yucky. I totally understand your need and desire for a cat and it's sad that your mom wont' allow it. Hopefully your disability case will be decided soon and then you can move out and get your little kitten.
Is there any way that your mom can give you the money to park at a teaching hospital? You could tell her that a better hospital could help to clear this up sooner so you won't have to keep going back to the hospital again and again. Fifteen dollars is a small price to pay for your health. I wish I had it but I don't right now as I just paid my bills.
Are you feeling any better at all? Are you still in pain with the pleurisy? If so, how terrible. You have to get to a better doctor who can help you. Your mom has to see and understand that. Can you print out some info on pleurisy for her?
Keep us updated, Eeyorelover. Again, I'll try to call you later if I'm feeling okay. Might be tonight.
Well I just an ear full from my parents and it was all negative. I just sat and cried while they went on for almost an hour. I wasn’t able to say anything that mattered to them. By the time they stopped I was shaking in pain and I am still shaking from hurting so much. I am still having constant chest pain and the last few days a bad migraine too. I called my sister who is talking to my mom now after it took her almost an hour to calm me down. I wanted to take every pill I had but I knew that would not fix anything. Just as I was starting to get hope they tore it all down. I was about to have myself admitted if my sister hadn’t come. I just didn’t know what to do. As of right now things really r not any different. My sister seems to b the only one right now who will listen and who has any understanding of how I feel.
I will update u on how things go I have a bad feeling nothing is going to get better any time soon.
I'm sorry that your situation at home is so horrible for you. You must feel so alone, glad that your sister is supportive at least. Try to concentrate on what you CAN do. Try to prepare for the court hearing best you can. I know it must all seem so negative but there will be light at the end of the tunnel. Hopefully, your case gets heard soon. I know what that is like. I had to go whole year with no medical care when I was going through a work comp litigation. No one cared. I was caught up in the "system." One day you will have your kitty and this will all be behind you. And you will be a stronger person for it. We all care about you.
Glad that you ventilate to us, you need to do that.
Oh shizz! I hope you're ok on your end. I just tried to call you bout 15 minutes ago. No wonder you aren't answering.
Eeyorelover, I don't know why your mother is refusing to accept your illness. On the one hand, I understand that she sees before her a 30 year old woman who SHOULD be healthy and able to work - but you're not. Maybe she will never accept your illness. That's a sad thought.
Now, what about your sister? Does she live locally? Could you go and stay with her, at least until your disability case is resolved? You just don't need all of this stress on top of your illness. Do you think that a note written by your doctor would convince her? If not, you are going to need to leave as soon as you can. Instead of thinking of it being never, think about what you'll do once your disability case is finally resolved in your favor. Think of what you'll pack and what you'll need. Think of what kind of kitty you'll get. Try to think nice positive thoughts, like how nice it'll be to have a quiet, peaceful home setting where you can stay and rest all day, if you must.
Please get in touch with me if you can. I'll be on-line for an hour or so longer.
Hang in there, kiddo! It WILL get better. I promise you. Once upon a time, I lived in much the same circumstances, minus the illness. Things DO change - it just seems like they won't when times are tough.
PS: Eeyorelover, I think it's pretty much a given that most fibro sufferers have their night schedules turned upside down. Even when I'm not in pain, I can stay awake until 4:00 AM and I used to be a person who regularly fell asleep at 9 or 10 PM. You can't HELP that your cycadian cycle has changed. But it has changed.
P.P.S: Don't you DARE take any pills, Eeyorelover! We care about you here and I would be utterly upset if you were to do such a thing! If you truly and seriously think you might do something like that, call me right away or else call 911. You've got my number on your voice mail. I'm serious. Don't let your mother's pigheadedness ruin your life. We're here for you, girl!
Sorry you're going through such a rough time. I wish I had some good advice for you, but I don't. Just stay strong and don't let them bring you down. *hugs*
Sounds like you need your own place, I am glad to live alone, it does get lonely, but having anyone around that didn’t understand fibro… Well that would be so stressful and we all know the more the stress the worse we feel. That would be so hard to have to answer to anyone about why you had to sleep all day, it sucks enough that you had to be up all night. I feel so bad for you, what a horrible situation, my mother does not understand either, but she is 71 and she does try and understand, my daughter thinks she understands, but how can she, i don’t even try and explain it to my 18 year old son, he is just so busy with school, work, his girlfriend. Take one dat at a time, do what you can for that day and focus on trying to get ur disability, get your own place ,There are a lot of people who care about you.
Steph,
My heart goes out to you. Finding new temporary home with a friend or sibling sounds the best to me. That toxic environment isn’t good for recovery.
You’re a wonderful person and as my mother used to say, “don’t let the turkeys get you down!”
Just as I thought things could not get worse they did. On top of every thing going on I now have the stomach flu. The only good thing is my mom has backed off at least for now. My dad doesn’t know yet that I am sick he will find out soon enough.
Thank you all for your kind words, support, and encouragement. I feel like I have a family on this site and I would b lost without you. I will keep you posted on how I am doing. I have been awake for close to 36 hours so If u don’t hear from me its cause I am getting much needed rest.
Aw sorry sister. I hope you feel a bit better soo and can get some needed sleep. Stay strong and life will get easier in time! Trust in your family here xx
