A Question for those in Relationships/Marriages- the "S" word!!
 

Hi Guys- this one's for adults only!

I've created a poll to get some idea of what kind of effect CRPS has on our relationships (particularly our sex lives), as CRPS infiltrates every part of our lives. I know that, for some of you, this will seem WAY too personal so I'm sorry if I've offended anyone by putting this out there. Please feel free to skip to the next post! I know it's a taboo area but I like to think we're all friends and we can talk about our CRPS here in ways we can't anywhere else.

Should you wish to respond, the poll results are anonymous :)

I've had CRPS for 9 of the 14 years my husband and I have been together and it's like having a third person in our marriage. I know CRPS can definitely be a marriage breaker- I wouldn't blame my husband if he left because this life is so hard, but thankfully he's able to see that I'm still in here somewhere and am worth sticking around for :p

One thing I struggle with is that, for instance, I might be up for something, ;) but if my CRPS is flaring up, me "wanting" to do something is totally irrelevant- the decision is taken out of my hands and put in the hands of my CRPS.

My husband is SO good in this area, so patient, but sometimes it all takes its toll and it's so difficult. I find it hard to separate myself from my CRPS- so if I can't do anything with him, I feel guilty, even though it's not like I've made a conscious decision to flare up out of control and rule everything out.

Some days I think we're doing really well to sleep together as often as we do, but other times I feel so bad that it's been so long. We try so hard to have a "normal" marriage, like other couples in their early 30's, but I think that's a very unrealistic goal to be honest, because we're not like other couples- I have CRPS and my condition and health and pain levels are worse than they've ever been.

So here's where the poll comes in.

I'm interested to find out how often other CRPS couples (meaning one partner has CRPS, not both) are able to sleep together and maintain that part of their relationship- if they can at all. It would be interesting to see the results and get a good idea of what effect CRPS has on this part of our marriages/relationships

x Kate

Hi Cake,

This is a terrific thread! Thank you for posting this.

I'm currently separated from my husband right now because of his work so I might not be the best gage of how intimate couple can be with one partner (me) suffering from CRPS. My husband is very good in so many ways. My favorite place in the whole world is to snuggle into his arms as we spoon together as we prepare for the night of sleep ahead. Of course I have to completely pad my entire rsd leg and left side of my body with pillows from any potential bumps or unexpected movements but overall we manage to do quite well at maintaining this level of intimacy.

You are so right ...there is a third person in our marriage and he often gets frustrated with that, so do I. I hate that I am consumed by the thoughts of how I have to manage my RSD every day, that it's always in every conversation we have. I try my darnedest to over compensate, even to the point of ignoring my rsd pain and hurting myself at times. When that happens I try to cover it up and not show the pain. Some days I try to shut out RSD and pretend it's not there (not easy) but a little extra meditation or medication can usually help.

More and more though I'm learning that it's not how the RSD effects me it is how I let it affect me. Instead if I focus on the smell of the flowers, the colors of the sky, the touch of my loving husbands hand on my cheek I generally can deal with the pain much better.

RSD has a bad way of directing us towards the negative so it takes work to focus on the positive, but it can be done.

Sexually - overall we have a good relationship but it does mean we both have to compromise to make it work.

I've learned that communication is the key. Sometimes less is more.

That's why I come here. I can talk amongst you all without feeling that I am burdening my husband. I know he feels my pain, each step I take or each breath that is sucked from my being when the pain becomes too unbearable.
At least here I can speak my mind without feeling too worried about how it will affect him.

Thanks for great thread topic.

Msl

I agree with you, Msl.

I find I often have to catch myself before I vent too much to my husband. He doesn't want to come home from a busy day at work (he works part time, two days a week) to hear me instantly grumbling and complaining or just talking about my RSD straight away. I tell him everything I feel of course, but I also rely on sites like this for understanding and support, so I'm not putting a bigger load on my husband. He has no one that he talks to about all this and worries enough as it is. So instead of me always being the taker and him the giver and me offloading everything onto him, I work really hard to make sure we're both putting in as much as we can and I'm keeping my mouth shut if I don't have anything positive to say about my RSD! I don't always get it right but thankfully he knows I'm doing my best.

Sometimes that means taking extra pain relief so we can spend time together, sometimes I'm so sore afterwards I end up crying. Most times I'm awake for hours afterwards because of the extra pain. But I'd prefer to be like that than to not do anything at all.

We also have our 3 year old in daycare one day a week, so we get a whole day (well, between 10am-3pm) to spend together and go out for lunch. I'm often a write-off by the time the evenings roll around, so getting the middle of the day to spend on our own is really important for our relationship and we both look forward to those days

If anything, RSD has made us have to be more inventive and creative in the bedroom so it's not all bad, lol ;)

I too think this is a good subject to post up. We are faced with a monster of a problem, and then to compound things the meds we take make it a bit more difficult. They take natural desire and suffocate it, making it that much more difficult to have those feelings or desires.

I agree with Kate that the earlier in the day the better. If you wait to long you get to the place where the "S" word is the last thing on your mind, and just about everything else you might want to do physically is nearly impossible.

Thankfully my wife understands, and tries her best to be there. She takes depression meds, so she also has problems getting in the mood. We make a great team LOL!

Early on in my new RSD life I told her I wouldnt hold it against her if she wanted more out of life than what I was now capable of. She let me know right then that her life was going to be "us", and it would never get bad enough for her to have those kinds of thoughts. It was a great relief for me, and a comfort to know I have someone in my corner.

Being open and communication is the key to all relationships, and not complaining to our loved ones so much that we drive a wedge into our relationship is key. This forum has helped sooo much in that I can come here and pour out my heart, or read where others are having the very same troubles causing me to rethink just how bad I have it. Even causing me to want to reach out to help those that I now call my RSD family putting my worries and troubles far behind me. This really puts things into perspective, making it hard for me to be self centered or completely focused on pain.

You also might find that just giving your undivided attention to your partner will help over come a multitude of problems :winky:

Good subject!
I agree with Allen (not that I disagree with anyone)!
I think that our communication with our partner has so much to do with how this will work or not.
That is, "UNDERSTANDING" being the keyword.

This is difficult on ourselves to get a handle on all this pain. For seven years I was just frustrated that medicine hadn't caught up to what was wrong..... yet.
So, how could my spouse/partner?

My first wife never went to any doctor's appointment with me, she was not very understanding. In any way.
My second wife did and was more understanding, then she went through a depression, and I got my tbi. She became angry, violent, lying and thieving. I stopped liking her.
(I find if you don't "like" someone, it doesn't matter how much you love them, it's doomed). I remember when I was in my early mid 20's, a gentleman much older than me got talking, and he was telling me just that. It's more important that you like the person, love will come and go. But, if you genuinely like the person, you'll get through a lot more. I think he was right.

I remember my first in-laws. Nice people. Father in-law was made out to be a kook, by the mother. She never looked at him with any love-light in her eyes, it was more like "you bastard, you wrecked my life, you didn't make enough money!" And, of course, her daughter soon became that way. My Brother in law, would stop by my house often, and say dammit, there is no love under that roof! I can't stand it. (Well, he waited to move out, until he found a high paid Nurse that would marry him) He didn't love her, I'm not sure he liked her, but he had her income counted!

I've done so well in this department, (when I was younger), and have been beaten so badly later in life, that I don't know if I can really answer this question.
I should have married my HS sweetheart! (My mother died when I was 15, and I was probably carrying a bit of anger).

Personally, my 2nd wife was much more "loving" than my first. And, for the sake of my own enjoyment, I'd put off my last dose of methadone. It was "too" numbing before, and helped after...
(There's the technical side).

More recently, I had a nice girlfriend, who came with a nice mother who came with a cocktail constantly. Too complicated.
I've got enough to deal with, and can't really do that well...
With my tbi, I don't really care about it so much.

But, where there's a will, there's a way!

pete
asb

The Hubby and I have 2 dogs 3 kids in a very small house. We cannot blame RSD on our lack of intimacy. I used to work for an adult party company and have learned that there are sooo many was to be intimate besides intercourse. We had to learn to be very creative long before RSD took over my life. If you get a chance to go to an adult party, it is a lot of fun and the presenter is trained to help anyone who wants to spice up their sex life or find alternatives if you have a disability. It is not gross or dirty because they have really fun ways to break the ice. There are several Christian websites that can help married couples too. Either way, you can go to a party and feel the intimacy with your partner by just having a little fun out of the ordinary.

I had to quit because I just couldn't keep up with the parties, plus the inventory I had to lug around. I would love to do it again if my RSD gets under control. If you want information to a website just PM me.

This is a really great post!:)

Good subject
 

I love how you said that having RSD is like a third person in the marriage, I totally agree.
My husband and I often struggle in relation to staying intimate. We have been together for 7 1/2 years and I have had RSD for 2 1/2 of those years. After the RSD began our sex life decreased compared to my pain free days. It bothers him as he takes the decrease personally, and then I feel guilty. Honestly, on average we are at once a week. My RSD is in my legs and often doing the deed gives me a flare. I would love to be with him more often but I hate having the flare ups. Its a double edged sword.
Jer (husband) is very understanding (he goes to Dr. appointments with me and takes care of me after I have procedures) and yet somehow even with all this love and understanding we both find ourself frustrated when it comes to this subject.
If anyone has any advice on ways to prevent the flare while maintaining a healthy marriage in relation to this subject, please let me know.

Just a question,

Has Anyone, spoke to the doctors about this?
Any good advice?

I'm gonna change the subject of this post, NOT the thread now...

I'm going to hafto.
This is most embarrassing, but, what the heck?

While with "wifey", and shortly after my tbi, I was on strong meds, lots of them, the pain so unrelenting, and the comotose feeling as if I was on the verge of death.

Anyway, she was not a woman to wait.:mad:
How do you "rape" a man?
Well, not to give away secrets, but, this one particular time it was, start while I was asleep. (on the floor, of course)..

Hey, I was just layin' there.... (as usual).:cool:

I apparently didn't have a strong well, erection. (it was workin for me):winky:

But, somehow, in a woman's way, she "broke me". (I will not get too graphic, but, it wasn't anything unnatural going on). She got to about the middle floor on the elevator, and leaned back or someway, SNAP, crack, and they COULD hear me Screamin' a Mile Away!
Straight intercourse.:o
OUCH!~~!!!!!~~~~~~~

Black and Blue wasn't quite the words~!!!!!!!! :eek:

Well, that wasn't the end of me.

But, I'm gonna hafto see one of those specialists, (I did go to the emergency room, what a fright that was!) :rolleyes:
Po' little fella gettin' hisself ultrasounded and sich! Oh!

Ah sure learned abit about a man's anatomy that day.
It seems that an "E" word, is like two oblong balloons inside, well, one leaked, (I don't know that I'd call it a blowout). Not covered by AAA. No Spare....

I'm figured I'll need an operation, and of course my testosterone jacked up, due to the tbi, and I'm constantly thinking....
I want to design my own 'Scar'. :cool:

Any suggestions would be 'pprreciated! (bumpier the better?):)


If you're wonderin', I am still able....


fergeet my name....:confused:
Story shortened, for fittin' in sakes.

Sorry for the graphic nature, and nasty subject... these things happen, it's OK to laugh, I do!

Grrrrr.

xo

What's a Fortnight?


pete

From good old wikipedia

MsL

Thanks, MsL!

That makes total sense!

Hey, didja see what I did there?
Drew attention from my prior embaressing post.....

:cool:

I wasn't ignoring your other post but heres something to give us a laugh

That was a tuff story to tell....
Tuffer to have happen, but, it still hurts to think about.

That's why, I gotta laff.

You are all such wonderful folks here, and my friends too.
Thanks for all your kindness!

pete

ok..I'm sorry, but I'm laughing. Only because of your description. :eek:. i'm glad you are ok tho. don't know what else to say. :D..sometimes things happen, and you really need a partner who is sympathic.

Hugs
Maary

I hate to get back to the subject here. However I was in a very loving relationship for about 4 years with my boyfriend. Then I was dx's with RSD. To make a long story short it did not take him a long time to find a reason to end this so called loving relationship! To make matter's worse this was after two failed marriges! Also try to find a new relationship when your on SSDI,food stamps,etc! Also in your mid 50's! I am not trying to play pitty party. I am very blessed for what I have in life! For you that are in a good and strong partnership please work so hard to keep it that way! For this terrible disease that we have is sure easier to handle with two people in the picture! :hug: Love To All! Breezy :heartthrob:

Breezy,
you're right! Unfortunately, many humans are rather selfish. Not all, but, I think something is a 'little funny' with this last generation, after the Boomers.

My first wife, came up with the brilliant exclamation, that she didn't want to be married to a "drug addict", when I was put on methadone. I said, that's OK, I don't want to live with pain, and You are one! (I didn't really say that, I was just awestruck by her thinking).
2nd wife, stole everything I had, and my parents had left to me and my children~ (I never worked for anyone in my life, except my parents, or myself), after my TBI. I didn't expect to live, honestly, I was in such a 'walking coma' for several years, kept awake with provigal occasionally. That accident happened 11 years ago, and I'm still up to my ears in litigation.. And,, my children haven't spoke to me in 5 years. (because, I think, they told me it was coming, they could see right through her).

Breezy,
I know you, and lots of us here are alone.
But, there is still a future, and if you want a partner, you will find one!
Just because some jerk didn't or couldn't see the value that IS intrinsic in you, doesn't mean that all are like that!

Be well!

Pete

Poll Observation
 

Kate,

I would think that most people who were inclined to vote in the poll have already done so. I have discovered that in my job as well, that the vast majority of responses occur quickly.

That being said, I am looking at the response numbers. 25 people responded. Of those, 80% (20) are intimate less often than once per week. 52% (13) said less often than once per month. And 20% (5) said they no longer are intimate.

I do not know what averages are considered “normal” but I think these numbers are huge! I have to believe that a normal relationship is intimate at least once per week. (Normal meaning there are no outside factors like medical conditions or work schedules that affect intimacy.) Does anyone have access to statistics like that for comparison?

It would be great if we could get a bigger number of respondents. Generally speaking, the larger the sample, the more accurate the results, as long as other issues do not affect the poll.


Mike

Or to put it bluntly, the substantial majority of us are alienated even in our marriages.

To any former sociology majors out there, I suggest that the RSD/CRPS community would have given a field day to Émile Durkheim. http://en.wikipedia.org/wiki/%C3%89mile_Durkheim But then, some would sadly note, it already has.

Mike