no longer independent | Arthritis Information

 

Do any of you have the fear that you cannot take care of yourself?  My family does so much for me.  Brett and Colton are out of town and I just have Kelsey for a week.  I have to beg her for help.  My back is better but I am still staying on a heating pad.  I am supposed to go to my family's this weekend.  They do not realize I asked to come up as I do not feel like I can take care of myself.  I was soooooooooo independent.  I have decided this is the worse of my ra and fibro.  The fear that I cannot take care of myself.  Do you go through this? 

Oh Yeah!  My 15yr old son is a wonderful help to me and I know that one day he will have his own life to live.  Hubby is great but the only problem is that he is working by day and volunteering at the jail by night.  I don't mind having my son but do hope that he can see that he needs to be home more as our son grows up.  When I receive my SSDI award hubby could go to part time work but for now he has to work all that he can.  He is an independent contractor and holidays and weekends really mean nothing more than another day to work but we are blessed that he has so much work.

I hate being stuck needing something and must wait until someone gets here.

Aw Roxy, that is always a very real fear, and one that I think a lot of us have, but it's just one of those things that those without a disabling condition just don't get!!  I think that's one of our biggest obstacles - the "others not getting it" thing. 

And then there's the other side of that - we don't like getting told "you shouldn't be doing that" -when we either know very well it's something that we can do safely, or it's just our sheer bloodymindedness trying to prove something to ourselves (and then we pay for that one - big time)!!!  Can't win.

I'm also a very independent person, on my own, although my son and his family live not very far from me, and they're great. But it's still hard to ask for help!! 

I manage really well at the moment, since I finished working full time,I am learning to pace myself - I have much more energy and can think again!  But I still worry about the "what if"  and What about when" though.  Especially when things aren't going well!

I really hope that you have a comfortable weekend with your family and are able to enjoy the change of scenery.  Take Care.

I try not to worry too much about being dependent. Everybody needs some help now and then. I am concerned about it though, and I too hate to ask for help.

I still have hope that your disease and mine will be under control and we will not end up so helpless as to get stuck in a nursing home or ruining someone elses life because they have no choice except to be our care taker.

Roxy, being alone i fear that i'm losing being able to care for myself much longer. i love living by myself and don't want to bother anyone to help me. i might have to end up selling my home of 20 years and move to appartment or something else.be glad u have someone to help u there I live on my own & worry constantly about losing my independence.   I have a daughter who lives not so far away but I dont get a lot of help from her.   I am in the process of looking at retirement home brochures - I am not in that age group and they are so expensive - probably why I am depressed & grumpy today. It is a very realistic fear & for me it is worse than the pain,
just feeling you have no option but to cope & that no one understands this disease. It is so wearisome. I
seem to just get in moods where some days I feel like you are now but then they pass - could be part of a flare.   Just hang on to the hope that you could improve or go into remission - it does happen for some people.
I am hoping when Deanna is up to it she will be able to write something that explains RA so well we will be able to hand it over to friends & family & they will at last get it.   You may need to explain your fears to your family Roxy & they may reassure you about your future.
Good luck.

Yes, Roxy, I feel like that all the time. I have a wonderful husband who loves to take care of me, but I was the one who always took care of everyone else, when they needed it...even sometimes when they didn't need it. I just enjoy taking care of my family.

But my Sweetie says that I took care of him for 25 years, it's his turn to care for me. Bless his heart, he even goes to all my doctor appts., tests, etc. He's always on the alert for anything that might make my life more comforable, or new treatments, meds, etc. I sincerely appreciate him and love him with all my heart.

But, I miss taking care of him! I don't feel like me anymore. I was always busy. Now, it's a big deal if I do the laundry (that's the one thing I can still do, if he takes it out to the laundry room for me).

You're right, Roxy. I do think that this loss of independence is the worst thing about this horrid disease. But even if my RA was suddenly gone, there is still the OA, Fibro, Neuropathy, DDD, etc. to deal with, just like many others of you.

Sorry I went on and on, just to answer your question

Please try to enjoy your week-end. Maybe you should let your family know how you feel.

Gentle hugs (almost  typed "jugs"

Nini

 

It would not be so scary if I were not a newlywed.  Also my family just does not "get it" and my daughter can only do so much.  What is scaring me is so far all the worst doctor's predictions are coming true.  I can only make tv dinners for myself.  I can only stand short periods.  House cleaning is in short spurts and it never gets done.  I have nightmares about a nursing home and I am only 51.  If I go in a nursing home, Kelsey goes back to mental hospital.  My life is changing from bed to recliner.  If I did not have my pets, tv, and aquariums I would go crazy.  Even though my family does not voice it (or at least not often) they resent doing everything for me.  I am down to folding laundry.  I have to be sitting.  I am scared.  I hate to be the downer on this board and I have been and I sincerely apologize but I am scared.  I don't know where else to turn

I haven't been able to do housework for about 5 years. Oh, I can wipe down the sink, but not really scrub anything. My husband used to do it all, but I couldn't stand to see him doing everything I used to do, and all his chores, too. So I hired a housekeeper to come in every other week to do the big cleaning, change sheets, etc. She has been with me for about 2 years, now, and is wonderful!

I have no qualms about leaving while she's here, I trust her completely. If you can possibly afford it, I strongly suggest it for you. I pay my lady every time she comes. It's a small price for having my house cleaned like I used to do it!

I only do frozen, prepared food, too. My sweetie has become a wonderful cook! And he loves to do it! Yes, I do know how luck I am

Try to keep the faith, Honey! I know you are going to feel better. Are you on an anti-depressant? If not, you might want to check into it. I don't know if I would be able to function without mine.

Thoughts and Prayers are with you,

Nini

I have appts. with all my docs hoping for answers.  My health is definitely going downhill.  I would be in agony if I were left alone.  If I have to do it myself, I pay for it.  Thanks for letting me know I am not alone.  Roxy, it is the thing I fear the most and the problem I have with RA. The
unpredictable part of it is always foremost in my mind. I fear that I will
become dependent on my family and they will get sick of me wanting help
and throw me into a nursing home. I work around people who end up in
nursing homes and while I know they are not all bad, i still do not want to
ever end up in one. I should not have to think about this at the age of 46
but when you get a disease such as this, it is hard not to think about the
future. I am independent now but who knows what tomorrow will bring.
Lets hope a cure is on the horizon.lorster39137.9312268519Lorster,  I just got back from a family visit and was pretty much told that if Brett ever leaves me - they will put me in a decent nursing home and visit often   I am only 51.I am so sorry that they said the to you. Well, sorry and mad is more like
it. How is it that the people who are supposed to love us the most can be
so nasty!!

Don't let them get to you.

BeckyWhy would they say that to you? Were they joking? I think I would cry if my
kids ever said that to me, joke or not. Sometimes people don't know how
cruel their words are until they, themselves are in a situation of potential
dependence on others. I know there are good places to go, but I see people
discharged to nursing homes all the time at work and more often than not, it
is a very negative situation. Maybe I've been a bit over exposed to this
scenerio. I'm sorry they said that to you, it was very insensitive and
thoughtless.Roxy, I'm so sorry to hear that things have gotten so bad! Hi Roxy,
While i am still new on these boards, just wanted to let you know that i have just resigned from working in a Nursing Home. The people that live there are so lonely, and the staff are all to often too run off there feet to give proper care. And also well underpaid for such a tiresome job. Those workers need a good pay rise. I was on the hospitality side of things, my job was sooooo easy, with so many thankful residents hugging me everyday. It truly broke my heart to leave them. They truly understood my aches and pains and tiredness. I just couldn't be on my feet for the 6 hours my shift required. I was walking the entire time i was there and when i got home i would take heavy pain killers and lay down not able to do anything. I would do this 2 days in a row then have 2 days off. The 2 days off were spent recovering, in the end i just couldn't recover. I am still recovering.. That was last Monday. I resigned and cried and cried and cried. Am still crying. I too have become dependent, just like the people i cared for at work. I am 41! I have been i think in a continual flare because i refused to give in to the pain monster. It finally got on top of me and i resent it sooooo much. My daughter gets so cranky with me when i try to do housework. It made me cry again yesterday that i couldn't do what i wanted to do.
We just have to slow down is my guess.
Hope things get more tolerable for you.
I hate that fear it hides in the deepest dark recesses of my mind and every once in a while it gets out and wants to play but I have decided that even though this is something very real I will eventually have to face I don't have to face it right now and make it go back - hang in there - new things are coming.  Hugs and good vibes. 

I am doing better Thank God.  Go to PCP today.  Trying to change pain meds.  I worry about my liver and all the percocet I take.  You know, the truth is, I think my brother is concerned that HIS children will have to take care of me.  I would rather go to a nursing home.  The good news is my marriage is well.  We stuck it out and worked on it, and our marriage is better than ever.  2many and all, I know - I should not focus on this or even bring it up.  I was just wondering if it haunted you.  The truth is I have been amazed how quickly my RA has progressed but I am adjusting to my new life and being grateful for good days.  I have to be good about pain meds because if I take them late, I cannot cut the pain.  So I am just learning to be responsible with the pain and keeping faith that maybe "something new" will improve my condition.  Only a few weeks until I see rd.  I would like to try Humira.  I am a chicken about new meds

Jennee - We just have to be tough.  It is amazing how few people realize how devastating RA can be.  I came home the other day when I was at my families after being out two hours on my feet shopping.  I was crying, in so much pain.  Stupid I did not bring pain meds.  My family was amazed.  Anyway, there was a large family gathering that evening I was unable to attend.  I am trying to accept - I cannot handle two hours on my feet.  You did the right thing leaving your job but I hope if I end up in a home, I get people as compassionate as you.  The one thing Kelsey and I have going for us - is we take care of each other.  I have a lot more support than other people.  I AM blessed.  I just need to come here once in awhile and let out my grief over what an evil monster RA is - and feeling sorry for myself how fast it has progressed - then I move on. 

 

roxy39140.5330671296I love how you express yourself in words Roxy, I can't seem to get it all out like you do. I feel exactly like you do. I have an 18 year old daughter living at home, (a month ago she brought her boyfriend home and he just kinda moved in!) and my 15 year old stepson. My stepson is my muscles, he does so much for me, i want to make him stay with us forever  But i know i have to let him grow up and move on. I fear that day. I fear the next winter,summer for us at the moment. If i have progressed into so much pain in summer what will winter bring, i am so scared. I might of done the right thing for me leaving my job but what about for everyone else that i am now dependant on. It must really suck for them as well. I have never been dependent on any one and now i just feel so much grief like you. Good to know we are not alone in these feelings. Reading the posts here reminds me that i am going through a common grieving process.       Worrying about the future wastes the present.  My mother used to say that alot. I found out the hard way when my husband died when he was 49. We spent alot of time planning, preparing for the future. We  saved money for our great retirement which will never happen. I worried about all kinds of terrible things that could happen to him( he was an alcoholic who was 10 1/2 years sober.)  Since then just more & more bad things keep happening to me.  Being alone I do fear the loss of independence--I lost my job last year; then had to give up my home and move to a townhouse---couldn't afford the high taxes and to pay people to do outdoor work for me.  I miss my privacy very much. I guess I'm saying the old "One day at a time"---that is all there is.    I may never need " care"; I may die first, or Better Drugs  will come along--no one knows.  Lou

ONE DAY AT A TIME -  I think it is the best advice for all of us

You know I am glad my brother told me that.  It was honest.  He adores his children and he does not want me to be a burden to them.  I do not blame him.  Who knows - maybe we will form an RA home where we can help each other
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