Grrr. I hurt all the time, but getting into bed and out of bed are the worst times for me. I avoid going to bed because of that. But I need to get some sleep.
I too am hurting, even when I seem active and am out taking photos. I can hear the knees whining as I climb the stairs to the apartment. Fog is there too. Anyway, feel better in spirit so that helps
Oh thank you, Marilyn - I really needed to a place to vent today.
Let's see... my sinuses are getting stuffy again, my back and my whole body really is just killing me, I've got a weird twitch going on in my leg, I'm feeling extremely grumpy because I've been having a whole lot of bad interactions socially, and my kids have been complete brats ever since puberty hit about three years ago - and it seems to get worse day by day. Arrrrgh.
The only pain I have is in my neck - from a colleague....My goodness. Some adults are SO much more difficult to deal with than the 'at-risk' children I teach. Are there "at risk" adults as well? Aarrrrgggghhhhhh!!!!
I get to go to a German mall today. Not too many of them around. And this one is set up like an American mall. Hopefully I can get started on my Christmas shopping!
I have my nights and days mixed up 'cause of sitting up in pain. Kenny called me a bat this morning. I didn't speak to him 'til tonight. He hurt my feelings. He didn't even know why. When I finally told him . . . he laughed, said he didn't mean anything by it . . . oh well, it was quiet today.
my days and nights are always messed up the pain seems worse at night I think.My daughters back to her old self,unfortunately and I worry too much to sleep more than about 4 hours in twenty four.
having quite a time trying to learn the click-able link !
I have the code right I know it just turns it all into the words but no click no link
I like the idea of this. I hope all of you get better soon, though.
Today's just begun...I'm tired, but not too tired. Got a little homework that I /have/ to get done today, but it's not that bad. I'm really dreading our bio fieldtrip tomorrow. I don't want to pay $15 to go to a conference on genes where we don't even get /fed/. -_-; It's gonna be extremely boring.
thursday is friday this week ...I am getting 3 days off ..so its going good so far .... I am tired ..its been a hectic week and I definitly need some rest and shopping :-) its festival season here and lots happenning in city ...
Well, I'm moving around now. I can't believe I slept so long. Strange thing is that once I'm asleep, I sleep soundly. I don't hear hubby getting ready for work or leaving the house. But it's still not a restful sleep. It took me about 30 minutes once I was awake to talk myself into getting out of bed. Now there's a thought. I think the SS judge should come to my house and watch me get out of bed.
I like what you said in your last comment on here about letting others come and see what your day to day life is like but for me i would go one step farther if I had my way. I would let them live exactly the way i live as of right now for a week at the least and i promise you no one would last a day in my body let alone my house. Yesterday after i posted a coment to something you asked yesterday a nurse came in to evaluate my currant situationn to see if everyone was doing as they were supposed to and as luck would have it turns out the nurse is battling kidney stones herself and seemed to agree with me that my currante situation was not helping my kidney problem so I remembered when you used to say as well as you know who when I was told to start putting my needs first soi thnat my life did not end up hitting rock bottom as i have felt it had the last few months, So i took the bull by the horns so to speak and told the nurse I am ok with the service i was getting but considering the life i had now and havingf to live on someones time table besides Gods I told her to have my case managewr get off her back side and get me out of that bed pronto and told her if I had to watch one more eppisoed of a rerun of reba I had seen 20 times in the past 2 months I was going to start screaming. I also told her all this in a nice way but told her if I started sceaming shed be hearing me accross the United States because I was about to go public on line and write a exsposea of the way people like me get looked over and passed around like we are a desise just because we need a bit of exstra help and only get crums if it is conveniant to the our aside world who does not have to worry about needing vital help. And I meant every word of it. It is the first time I have seen saomeone new come in who was on my side and not putting me down for being fustrated for having to be flat on my back bowing down to others needs besides my own. Told her if i had my way I would want someone in 24/7 so I would never havec to lay down again. It is the first time I ever seen mom not call me down for speaking my mind in I guess 5 years or more. Maybe this forum of being able to have my say on my rants when I need them is going to be a good thing for me. But trust me I still am determined to have somethging good come out of my life even yet. You never can tell what I might be into next. As you well know me and I Know you do.
Good for you, Angela. You're right that you probably should have an aide 24/7. You deserve the right to be up and at your computer or going out into the world on your schedule.
I understand that one, Leah. In fact, I was just popping in to say nitey-nite. I'm shutting down. Shutting down, you ask? Yep. In 15 minutes or less I'll be sound asleep. It's what I do.
Wonder what an employer would do when I told him/her I was shutting down for a few hours? Just because my body said so.
You know...when I remember (help me with this one, okay?), I need to write up a new resume. One that shows both my attributes and my illnesses and symptoms. Or better still, I need to write up the perfect job description for the job I need. You know...starts when I am able, allows me to nap at will, etc.
Okay, I'm really shutting down now. I'll be back later, folks.
Wow. I was kind of depressed about me and my husband waking up every morning and having to clean the urine and feces off of my disabled father. And get him up out of bed. And feed him breakfast. And clean him again. And having my aunt call to see why I don't bring her brother over more. And hear one of my five siblings call and say how that they are going to come help me one day. And then having to clean him again. And having my other aunt call me to tell me that it shouldn't embarrass me to see my fathers private parts. She wouldn't have a problem doing it. But, of course, she never does. And having my sister call me and ask me to go somewhere when she knows my husband has a doctor's appointment and somebody has to stay with Dad. And having my brother call me and tell me how I ought to do this for Dad and that for Dad, when I'm doing everything I can with all my might. But now that I've read other people's problems, I realize that my life is just a walk in the park.
I think now you can see a bit of my problem from before andc why my life has always seemed like I let others run my life and maybe I have i am still trying to sort that part of my life out but untill others really see that they are making me bow down to their convieniance and not my own and do something about my problem and noty use my disability against me to get their way as they have the last five years or longger my life will not get any better and it is up to me to get my life back and I intend to do that and hopfully this time I will not mess anyone elses life up. i think you know what i am referring to. But I can truly say messing up others lives has never been anything I have ever set out to do, ever, not even on a diliberate scale. Maybe my writing and filling in others on my life on here can make people understand and see me as I really am. My life is no easy picknic and never was. It is just as I grew older it got more complacated to figure out how do juggle being sick and trying to have a personal life too. Even i mess the simplest of things up in my personal life. Lack of having a personal life does not help things eather, But it does make you wonder on where the line of being able to have the personal life and not seem selfish is to the line of where the line is that is is alright to be selfish is. That is the side of life at being disabled is that I have not mastered yet. Would you like the challenge of helping me find out that part? look at it this way it is the only real big challenge I will ever ask of this forum such as it is.
Bethany, I'm sorry you're dealing with that. I lived with my parents for about 18 months. My dad had Alzheimer's and Parkinson's and my mother was supposed to be his main care giver. I kept telling my sisters that they both needed constant care, but they didn't really hear. I guess having me there was convenient. But when I moved out, they discovered for themselves. My baby sister ended up with them both at her house for a while. She knows what it's like to have to take care of a dad like you are. Bless your heart. I only got a small glimpse of that, since Dad was still doing well with the meds when I lived with him. But there were times...times when he insisted that I come and look at his poop or his bottom because it was sore.
Perhaps there should be classes somewhere (are there books?) to help us cope with taking care of our parents. I do know that if you are the constant care giver for anyone who is disabled, you need some relief. If that doesn't come from family, then you need to contact United Way or Social Services in your area so that you can get a break now and then. It's important for you. And it's important for the person for whom you care. (I read somewhere that elder abuse happens in families because the caregiver feels trapped.) Most places have adult day care and many are not very expensive. Where we were in Michigan, they would have picked up my Dad (and Mom too if she wanted to go) and taken him/them to the senior center each day, if I wanted. Mom would have none of that, though. The bus would have been $2 if we could afford it, free if not. The sr. center only charged $3 for the day and that included lunch. They had people on hand who could handlel everything that one might encounter in seniors.
Angela, you do deserve a life. Just as I told you before - your mom also deserves some time away from being a constant care giver herself. But you deserve the chance to get out into the world if you desire. I still think you need to contact the Center for Independent Living in your area to find out what services are available to adults in your area for learning to be more independent. Nursing homes are looked down upon when they keep residents in their chairs too long during the day or in their beds too long without being in their wheelchairs. We call that abusive. I think when the same thing is happening in one's own home it is also abusive. You are not a vegetable and should not be treated as such.
I wanted to respond to your comment about the indipendent living places I have checked in to the places unbeknowns to my mom I sent a few online inquiries and I got a letter back that she has no idea I sent and got a reply back on and they still say as before if i am not able to transfer on my own in and out of bed even with only a biyt of assistance and cant use a lift because of the rod in my back as i have told you about prior to this post they still will not take me. Yes it is true that my mom right now can not lift on me because of her surgery and I am not recommending that she do as i am sure you agree with me on this part but I tend to think that this time it is the system that is abusing me this time I saw last night a movie called First Do No Harm my question is this if doctors take a oath to fist do no harm then why cant a care giver placec like my mom is trying to fight to get us a aide in here to help wqith us better why can they not have to take the same oth as any doctor and be made held accountable here and why is it ever time I say to my mom we should sue them for violation of my rights and hers why is it that she seems to think the peoplew are so suie happy that we would be laughed out of court I am just trying to fight for a effective way to get my rights met without more harm being done to myself. If you will sis there not a pattition being cerculated to get things like this changed and if there is can send me the site because i will gladly put my name to this to get things fixed. Heck if i even have to be a onbe woman army to get things like this canged I will do it. I just need the right site toi know how to do it. I have tried looking on my own and cant find a thing yet. maybe you know a site I do not.
Hmmm. I'm still not sure we're talking about the same thing, Angela. The Centers for Independent Living are not assisted living centers. They are places that help persons who are disabled - in any and every way - learn to be more independent. They're all over the country. The one in Midland, MI helped me. Here, the lady who was the leader of our fibro group went to work with the Center for Independent Living in downtown Cincinnati. There are no residences there, just all kinds of help, resources, counselors, whatever - and lots of disabled volunteers too - to help people who are disabled become more independent...and to know their rights.
I am going to put this comment on this one sence we started this conversation here but we may be talking about different places so to lear it up I will tell you what I have in mind that I want to do that I am looking to find a way to do. I am looking to find a way that I can afford on what my check brings a month and still live on but at the same time have someone come in help me get up in the mornings 7 days a week and still pay my monthly bills and will be able to help me back to bed at night and maybe do light house cleaning and help with my laundery. Mom says on what I make a month I can not afford to because it is a rather small check a month I do addmitt that. Butr still to have a place on my own to get out of this racket at the house I would give anything to get that peace and quiet and no I mean no disrespect the way mom seems to take it but even my doing this has been a sore spot with her sence I was about 19 when I first brought up the idea to her to do this. H eck I even had told her at one time I would move in a place that was close by her if that would make her feel better but she pitched a fit and I never brought it up again untill 2004 when everything hit the fasn that I know you know about that I will not bring up here. But I think you know the insident I mean from 2004
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Comments: 30
Let's see... my sinuses are getting stuffy again, my back and my whole body really is just killing me, I've got a weird twitch going on in my leg, I'm feeling extremely grumpy because I've been having a whole lot of bad interactions socially, and my kids have been complete brats ever since puberty hit about three years ago - and it seems to get worse day by day. Arrrrgh.
... I feel better now sharing that.
having quite a time trying to learn the click-able link !
I have the code right I know it just turns it all into the words but no click no link
Today's just begun...I'm tired, but not too tired. Got a little homework that I /have/ to get done today, but it's not that bad. I'm really dreading our bio fieldtrip tomorrow. I don't want to pay $15 to go to a conference on genes where we don't even get /fed/. -_-; It's gonna be extremely boring.
its festival season here and lots happenning in city ...
Wonder what an employer would do when I told him/her I was shutting down for a few hours? Just because my body said so.
You know...when I remember (help me with this one, okay?), I need to write up a new resume. One that shows both my attributes and my illnesses and symptoms. Or better still, I need to write up the perfect job description for the job I need. You know...starts when I am able, allows me to nap at will, etc.
Okay, I'm really shutting down now. I'll be back later, folks.
And having my brother call me and tell me how I ought to do this for Dad and that for Dad, when I'm doing everything I can with all my might.
But now that I've read other people's problems, I realize that my life is just a walk in the park.
Perhaps there should be classes somewhere (are there books?) to help us cope with taking care of our parents. I do know that if you are the constant care giver for anyone who is disabled, you need some relief. If that doesn't come from family, then you need to contact United Way or Social Services in your area so that you can get a break now and then. It's important for you. And it's important for the person for whom you care. (I read somewhere that elder abuse happens in families because the caregiver feels trapped.) Most places have adult day care and many are not very expensive. Where we were in Michigan, they would have picked up my Dad (and Mom too if she wanted to go) and taken him/them to the senior center each day, if I wanted. Mom would have none of that, though. The bus would have been $2 if we could afford it, free if not. The sr. center only charged $3 for the day and that included lunch. They had people on hand who could handlel everything that one might encounter in seniors.