so asking what i can do to make life more liveable
 

so as i read and what info i have already read about rsd, im asking you all, from a spouses point of view ( wife here) , what do you do to help with your spouce with rsd, how to make things better for them, with the frustrating times, the non sleep times- the medication making you feel weird times the pain is so painful they want to cut there limb off times you know give me some advice to help make it easier on them and it might help me as well ( does make me want to cry knowing what rsd does to a person):grouphug: as of now we are both disabled and home so i can help him thur out the day, maybe its just the frustrating time hes feeling inside his body and he cant do nothing about it i try to be understanding but im human we lash out at eachother at times we dont deal with stress to well both dealing with there own desases and our bodys feeling this n that inside we are both stuborn och bite my tounge lol , mabe i dont know what to be asking maybe just how another spouse copes-handle-with there spouse going to thru RSD?? (want to use the right word dont want you to think im not sensitve ) linda

I don't really have any ideas on the RSD part of it..

But relationship wise..maybe just going back to basics - why you are together in the first place??
Basic values, companionship, being together no matter what for the long term...

Any chronic condition is very stressful even if only one has the health problem, with both of you, it adds extra...

basics is true
 

hi Jo*mar. yep thats true the basics thats what we have, togther no matter what married 27 1/2 yrs now, theres more better then not just those nots creep in at times lol so i was just wondering on others but it will come back to is the basics of it all :), so theres my answer in just on reply lol...wow you guys work fast around here:wink:linda

Hi Linda

Im very very sorry you are going through this. I have RSD internally and am mostly bed ridden. My hubby has back pain issues and he is my care taker. we have moments of frustration...we try to laugh through them and remember that even though our bodies dont cooperate, we still love each othr and am glad to be together. I have had RSD for 5 years now and sex is out of the question. even though i offer to please him, because h isnt bad off like me, he just says no..its no fun if he cant make me happy too. So we try to find a few thngs to do together. in the nice weather we yard sale. i cant get out of the car, but we just enjoy being together. he i very funny, so he is always thinking up silly things to say or do to make me laugh. we definitely have our moments getting on eachother nerves, but i try to not be demanding of things i need, because he i mostly me legs and he tries to let me help where i can. like folding laundry or choping vegeltables when he is cooking. I know its hard, but try to make eachother smile. write eachother a love letter and try to appreciate the little things.
hope this helps a little
Lori

thank you
 

Thank You Lori, guess i was just frustrated and wondering what others do when there spouse is in such pain, but its true laugh together find the fun in things and we do just that , and i know some days are dimonds and some are coal and we do take the good days with the not, , your husband sounds like mine does try to help even with his pain and , and bravo to you both, maybe i should take my post off of here now i :p i got it reality put me back into my palce, theres no magic solution just us together being happy as you can toether and lori i give you points for saying outloud no sex hubby cant with meds and pain and it isnt any fun being in pain how can it be im understandable of that :hug: keep smiling .

You are a dear person Linda, you just get frustrated, we all do! How do you make sense of your life being turned upside down, that doesnt make sense.
I was going along minding my own business and had a gallbladder attack! I had emergency surgery and my world flipped upside down. I have been in pain and practically bed ridden ever since. I have been to 30 doctors in every branch of medicine you can think of. they could see how huge and swollen my abdomen was, but nothing really has helped the swelling and hey didnt know what was going on.

I found my answer on the Tyra banks show of all places. I young girl named Andrea was having a make over suggested my her Mom. She started to talk about her condition and it sounded like me. i looked her up on the web and emailed her. then i printed off a bunch of information and took it to my primary care doctor and he agreed that this is what i had. he put me on better meds and at least im not in constant pain as i sit on my bed, but i hurt when i go to move. But its my life and i just do the best with what i have to work with.

Also, never take down your post, your post will help people that may never speak up, so please leave it so others can learn too. every little bit helps when you are confused.
Thank you for friending me :) You can never have enough friends who understand what you are living with!
Blessings
Lori

Your sweet lori and thank you for taking me as a friend yahoo yes we all can use as many friends as we can have never to many and especially when you find such compassionate people on this site , See it pays to watch tyra , so what was it that you found out you had if i may ask, and now it turned into rsd inside your body so your whole body is in pain? and yes its what we got selected to tag alone with us and all we can do is the best of what we have to work with absolutely true, and so happy we can say on it but it sucks sometime lol and then move on and joy our life ..

Making the best of our trials
 

;)Dear Linda,
This is the kind of trial that can make you bitter or better, and better is a much better choice. You have less trials because bitterness makes every issue a trial. Responding in love when the going gets tough, draws you closer. I try to set myself up with a space of my own, when the walls seem to close in on us. I used to take two or three vaca a yr to visit my sis'. Or just take off for a couple of days to the lake and watch birds. Now I'm very limited physically and by the meds. But my husband still needs his space that sometimes doesn't include me.
So I have(and am refining still) made myself a room where, if he slid me some food under the door, I could stay and keep amply occupied for a couple of days. I can study, meditate, pray, correspond, sleep, read, and thanks to a very generous
Christmas gift of an IPad I can follow my friends on here,
facebook and a couple of other places and play some cool
games, and all my photos are loaded on here. The point is our
time together is more enjoyable because we both realize we
need a bit of space. His willingness to expect less now that the
RSD has taken up residence than I would have contributed
before is an amazing gift. I'm a different person physically, and
we are learning to walk this path much slower, but much more
in step with one another. He is making a lot of sacrifices and I
try to recognize that fact.
We have fun saying we each have have half a brain/memory and together maybe we can remember the important stuff. Two years ago he suffered a TBI but he's good at reminding me
where the conversation was going when I just forget,
midstream. And if all else fails we round up a few of our ten
g'kids for entertainment. Many good scrabble opponents as long as I supply some snicker doodles .

The adjustments have been difficult, but we are learning to live within our new boundaries.

Remember, and this too shall pass. Tomorrow is a new day.
Twin g'sons are the entertainment tomorrow, age 11. They can play the video games as long as they play a Scrabble turn!
Have a great week end!
Pat e

Hi you are a very kind spouse to look into this. I am not married but with my mom who is the closest person to me it has been a long road of trying to find what works and does not. It changes as well. First I feel for you that you need to take care of yourself. You can't be there for your wife if you are in a bad mental or physical place. When I first got dx my mom I would sya for 6 months life stopped for her. She barely did anything but cry from me crying in pain. She reasearched for hours and hours. Anyhow as time as went on and she has begun going with friends,take a hobby class what ever I think she copes with me better. So I encourage you to do the same.
Now what helps me is for people to check in with me and say how are you even? To not judge or tell me what to do with my rsd. I think suggesting for ex to see a doctor or go for a treatment is fine. I have a family member though who tells me cause I don't do X is why I am not better etc and that really aggrevates me, Try to have things you can do together that is not health focused. If it is going for a drive even together. I remember after so many months in bed with this at the start I was at my moms and we watched a comedy show. I laughed for the first time in months. It lifted both of our spirits. This takes such a mental toll that even 5 minutes of a break can really help. To me so much is a build up of this. Ok sorry to write a novel. You both are in my thoughts

The girl had RSD. her name is Andrea, she sometimes comes to this website.
I have internal RSD caused by being cut during surgery for the gallbladder. then 2 years later after countless doctors and getting sicker...a plastic surgeon thought it might help if they cut off all the swollen tissue on my abdomen...its gross..they cut me hip to hip, removing 25lbs of tissue. he tried to do this horrible operation as an outpatient!! everytime i tried to stand up blood leaked everywhere...so they finally decided to keep me...later that day when they put me in a room, i tried to stand up and get to the bathroom with the help of 2 nurses...then i passed out and went code blue, i died , then they brought me back. if i would have went home, i wouldnt be here now. i spent 1 week in the hospital recovering. after that surgery, i became diabetic, high blood pressure, my period stopped, i got horrible acid reflux, SO much went wrong in my body from all those nerves being cut on me side to side....it was devestating. I just found out 6 months ago that i had RSD after seeing Tyra...if she didnt have Andrea on that day, i still wouldnt know what i had.
I hope some day that there are more TV programs that discuss this illness, so many more people have it that are undiagnosed!
we just have to make the best of each day.
Hugs
Lori

gramE, I just have to say........awesome way of expressing it. This is a signature worthy quote.....

This is the kind of trial that can make you bitter or better, and better is a much better choice

Thank you for your post
 

I met my partner in a dating for disabled website few years ago. Its been a long road, full of love and mutal learning. And i believe this will be a work in progress untill our lives end... we are a very young couple, he is kidney transplanted, has cataract and corneal erosion on both eyes. i have neuropathy,RSD, all the side effects and emotional issues that comes with our condition. He deals better than me with his health but today we respect each other and never underestimate each others health. Theres no worse or better, we all have our weakness, and healthwise theres no place to comparisons. we sum our strenghts and share to make our life a happy one as much as possible. Dividing tasks, taking care of each other in what is needed, finding a different ways to have a pleasurable intimate life, having a good laugh, wipe the tears on those bad days and having our own space... all this together help to manage stress. Argues are rare nowdays, sturboness never win, we have to find a point of mutation, where we can agree. One like red, and other blue, that has to be fine. Diversity and differences can make life more interesting and richer, when we leave the heart talk and put the ego to sleep. I try to find a point to replace boredom, frustation with understanding, gratitude and excitement in little things in our life together.
Its not simple to be a disabled person and a carer of our loved ones, but inconditional love guide us. Patience, creativeness, willing to support and respect. And fundamentally having knowledge about the other condition; theres no need to be an expert, just knowing what is, symptoms can explain a lot and bring us confidence.
I hope you and your loved one find your way. Yes life can be more liveable, believe me
lots of love
Carla

Hello everyone...
 

It's what is in your heart that will get you thru..That love runs deeper than no other and no matter the depth of our pain, the type of day we are having or what ever tomorrow brings..if you rely on the simple heartfelt love..You will make it..oh yes, and with the complications of RSD and life ..we all need to have something solid to lean on.. a sure bet! Bless you all..find the peace in your hearts.. and stay strong, as we all need that.. Thank you for all of your kind words!!

Hugz, Kathy:grouphug:

your a blessing
 

Hi Lori your a blessing to be here today after all that and code blue your supose to be here on this earth , to show what strength is - kindness-and caring to others.:)

Hi Daniella
 

Hi Daniella, thank you for your novel i enjoyed it all-:) im the wife whos on here and asking what can i do to help hubby with rsd, im selected with myasthenia gravis 37 yrs im doing pretty good and hes been taking care of me for 27 yrs of our marriage so its my turn to help him the best i can, and him being a man feel useless not beable to use his left hand-arm, but now im his left arm and happy to be here to help the best i can, this is just a down right hard disease rsd is , you keep on laughing Daniella, and i see on hubby what a mental toll rsd take on a person, i try to speak potivite with hubby thinking that mighht help but untill we are in someones else shoes that may not even help at times..but i shall keep smiling as well..

HI CarlaDanDan
 

EXCELLENT!!!!!

i acutally feel foolish submitting that post now, it was just a day now it passed or maybe its from reading all these great post , and yes sturboness never wins , very true... i very much enjoyed your post, you are a kind caring person and with a great positve attitude which i have most everyday that day i posted must of been one of the Not so days. but im on track now.. thank you .

Linda
im delighted to here that you are on track now! We all have those lousy days when its difficult (almost impossible) stay positive
Its never a foolish thing write in here, I found loads of support here too. From time to time i've read few posts wrote by me/and others. Re-reading to "re-charge my batteries":D we are on the same boat at end of the day.
Thank you for your friendship.
lots of love