Medical Forum / Diseases and Disorders / Arthritis / June 2005
Spouse of AS,CIDP,shingles,lack of sleep sufferer
|
|
Thread rating:  |
K H - 03 Jun 2005 22:48 GMT My Husband is in pain almost constantly, he's allergic to NSAIDS so he's on the heavy duty stuff. He can only get a couple of hours a sleep at any given time. He Naps throughout the day and evening. He's 54, I'm 52, Our kids are grown and gone. I'd love to find a job, I've been self employed for 24 years, but we moved to a "Dry " State for his health, and now I can't find work. I'm in good health, and I'm going stir crazy,
We are in the process of selling our home to downsize, He's on disability. I love him to death.
We are not the "TV" Empty nesters that can just pick up and go. He never feels good enough to want to do anything any more and it's scaring me to death that I'll be sitting around cleaning or piddling for the rest of my life. I know you'll say get a hobby, I have several but you can only do that for so long too. I volunteer as needed locally but it's only for a few hours at best during the week.
Some days I just drive around, have a good cry and then come back home. If anyone can share their coping techniques I'd appreciate it, I'm tapped out. Kathy
Jo Firey - 04 Jun 2005 00:03 GMT > My Husband is in pain almost constantly, he's allergic to NSAIDS so he's > on [quoted text clipped - 22 lines] > out. > Kathy Well my sister works in the garden department of her local Wal-Mart. Just to get out of the house. And says otherwise she would likely kill her spouse. He's a nice guy and they get along great, but there is such a thing as too much togetherness.
If you can get him out of the house at all, even to just go for a ride, it would help you feel less trapped. It you can't, then you have to find things to do.
If you need to be home with him, then there is reading, knitting, the computer, gardening, coffee with the neighbors, etc. Extra long trips to the grocery store.
If he is truly home bound, you might even consider placing him in respite care for a few days once in a while and getting out of town.
May towns have Senior Centers that plan trips to gardens and wineries and casinos and such. He might be able to cope with that.
Also, get yourself into a caregivers support group so you will have someone to talk to in a similar situation..
If he is keeping you awake you will have to make it clear that just because he can't sleep doesn't mean you don't have to.
And get in to see the doctor yourself to make sure you aren't clinically depressed in addition to being tired. If you are treatment can make all the difference in the world.
Jo
K H - 05 Jun 2005 20:09 GMT Jo, thanks for all the great idea's, I never even thought of myself as clinically depressed. I just happen to be seeing my doctor this week, I'll ask her what she thinks! Kathy
>> My Husband is in pain almost constantly, he's allergic to NSAIDS so he's >> on [quoted text clipped - 55 lines] > > Jo Harvey R. Stone - 04 Jun 2005 01:56 GMT Hi Kathy,,, I just wanted to say that having the feeling and worries you have is normal. What kind of arthritis does your husband have and what does he take for it?
Harv
> My Husband is in pain almost constantly, he's allergic to NSAIDS so he's > on [quoted text clipped - 22 lines] > out. > Kathy K H - 04 Jun 2005 03:14 GMT He has AS (Ankylosing Spondylitis) He's had this since the age of 9 but was miss diagnosed as RA, until he was into his 30's, He can't take NSAIDS, or prednisone, so he's on Oxycontin and Ultram, with a host of other drugs for the other problems that he suffers with. With the autoimmune system being down he's now developing a host of other diseases. Thanks I know it's normal. Just some days I really think it's harder on me than him because I can't take drugs and nap! Nor do I want to. We already sleep in separate rooms because I'm a very light sleeper and every time he'd get up or come to bed he'd wake me up. This was affecting my health.
K
> Hi Kathy,,, I just wanted to say that having the feeling and worries you > have is normal. [quoted text clipped - 31 lines] >> out. >> Kathy Harvey R. Stone - 04 Jun 2005 13:44 GMT > He has AS (Ankylosing Spondylitis) He's had this since the age of 9 but > was miss diagnosed as RA, until he was into his 30's, He can't take [quoted text clipped - 8 lines] > > K Hi K,,,, You will see many posts in this newsgroup from Firechief,,,, AS. Retired, does not drive anymore but he square-dances and remarried a couple of years back. They have found Enbrel and Remicade to work really well for people with AS. The thing about RA and AS is what it takes from you,,, you can not get back. If your guy has passed the point with his back,,,, what he takes and how interesting life is in your hands and his own. I know that you could write a book on how to live with a person with AS. When it gets to you a little,,,, just come here and let it all go. Yes,,,, we have heard it all a hundred times before buttttttt not from you. You and your guy are why we come here to talk about life and how to live with what we have. Harv
K H - 05 Jun 2005 20:09 GMT Harv, your right about the book thing! I guess that I'm just in that place now where I need to get it off my chest with people who understand.
Our story is long He's had AS since childhood, of course if was misdiagnosed for a long time but by then the damage was done. He's 55 this year!
I will use this site and vent or seek support when needed. Thanks Harv! Kathy
>> He has AS (Ankylosing Spondylitis) He's had this since the age of 9 but >> was miss diagnosed as RA, until he was into his 30's, He can't take [quoted text clipped - 22 lines] > and how to live with what we have. > Harv d'huit - 04 Jun 2005 07:35 GMT > My Husband is in pain almost constantly, he's allergic to NSAIDS so he's > on [quoted text clipped - 22 lines] > out. > Kathy hi kathy! sounds like you have the time on your hands, but not the opportunity to do more than you are doing. i think i'd suggest that you start making friends with neighbors and with other volunteers. you could use some girlfriends, girlfriend! go out to lunch once in awhile with a girlfriend. also, this might set up a networking kind of thing for you, as one of these friends might just know somebody who knows somebody who needs somebody with your job skills.
if hubby can't go out, considering his condition and his meds, maybe something like hosting a weekly or monthly cardgame/scrabblegame/boardgame at your house, with another couple (maybe neighbors) might help both of you have something to look forward to together. make it pot luck or just after dinnertime for dessert.
checking out the local senior centers has been mentioned, but there is also county parks and recreation centers that have outings/daytrips you can go on and classes in new and interesting things, not just hobbies, as well as exercise programs.
if you do happen to be depressed, which would be normal and typical in a situation like this, there are many effective ways of handling it. there are varying degrees of depression. everybody's different and people find different ways of coping and dealing with and facing situations like this. however, the least effective thing to do, about it, is to do nothing.
hope there's an idea or two on this thread you can make use of, kathy.
kate
K H - 05 Jun 2005 20:03 GMT Thanks for the suggestions, you mentioned a few that I hadn't thought of! Yes I do need girlfriends, When we moved to Phoenix I worked in our home office for 5 years and now it's hard getting to know people. I'm working on that now!
Kathy
>> My Husband is in pain almost constantly, he's allergic to NSAIDS so he's >> on [quoted text clipped - 53 lines] > > kate firechief - 05 Jun 2005 03:17 GMT > My Husband is in pain almost constantly, he's allergic to > NSAIDS so he's on the heavy duty stuff. He can only get > a couple of hours a sleep at any given time. Except for the allergy to NSAIDs, you pretty much described me. I was diagnosed with AS in 1976-77. Took up square dancing for exercise until I had to stop driving. During that time I had a THR which eliminated the waking up every 1-2 hours. Now I sleep through 6-8 hours and I've been back to square dancing since 2001.
You didn't mention WHERE your husband's pain is. Back? Hips? Shoulders?
You also didn't mention your location, so we may be able to steer you to some suppost group(s).
In the meanwhile, you could visit http://www.kickas.org and http://www.spondylitis.org.
... LET THERE BE DARK! No, that's not right.
K H - 05 Jun 2005 20:03 GMT We Moved to Arizona in 1998, from the Midwest, St. Louis, The dry desert air is fine, his pain is in all area's hips (one replased in 2000, shoulders (has had 3 surgeries) back - upper Middle and lower, Knees. Hands etc. He played racketball but can't do that any longer because of the hip replacement. has reverted to walking the dog an a little bike riding.
If anyone knows of a group in Phoenix area who likes to "Do Lunch" let me know! I have visited these other websites but not recently. Thanks for the reminder.
Thanks Kathy
>> My Husband is in pain almost constantly, he's allergic to >> NSAIDS so he's on the heavy duty stuff. He can only get [quoted text clipped - 17 lines] > > ... LET THERE BE DARK! No, that's not right. firechief - 06 Jun 2005 06:23 GMT Kathy wrote:
> If anyone knows of a group in Phoenix area who likes to > "Do Lunch" let me know! Okay, where's Anne? She's in Phoenix. Didn't want to receive e-mail.....but.
Meanwhile, I'll check around some more.
... I don't eat snails. I prefer fast food.
|
|
|