Sensitive subject but just wanted to know how everyone else deals with this. from all our posts of our little group we are all blessed with suportive partners but how do you all manage this one?

3.5 years ago I was 8 months pregnant on my little katie when i fell and i have to say that was the end of anything physical between me and my hubby. Now my hubby is great and never asks or even tries it on because he knows this body of mine is too wrecked with pain to even pretend. but i will say it is not something we discuss so my question is ..... is it an unspoken thing in ur households? should it be something i bring up? or should i just leave well enough alone?

i hope i have not offended anyone by bringing this up but being 39 years old i am just wondering is this another part of my life that rsd and my scs has taken away?

hugs to all

Hi Jenna,
Thanks for bringing this one up, it's a tough one. My hubby and I speak about it, he was afraid of hurting me after the surgery which is fair enough but..... I dunno, we definitely talk about it but yet unresolved.... I guess if you're up for it then why not just take one step at a time, personally i'm so tired after a day... maybe if an opportunity presented itself and it's only 3 or 5 in the afternoon why not give it ago. Get a babysitter for a couple of hours.
When was the last time you were able to get out? even for dinner, or would you be able to get away for a weekend without the kids, let what brought you and your hubby together let itself flouish/out (whatever the word is) again.
You could take it easy, maybe go for a massage (if u can, with crps does your skin hurt - I read the symptoms) together, relax and take it frm there.
Funny thing is I could do with taking my own advice here! No work for the last few months makes for a poor Sinéad! Everything is so expensive on one wage but hey if you can, why not, yee deserve a treat

Take care hun, I hope all works out soon, it's important that it does in my opinion.

Sinéad

Heck, this is a good subject that the entire forum of NT would probably chime in.....since most of us here at NT are in pain.
I know for certain the RSD forum would really jump on this with some helpful advice/suggestions (regarding our pain - in general) ....With the SCS added to the mix, certainly can make for an even tougher challenge. Maybe some points to ponder might be..
Has lack of sex put a strain on your relationship and/or do you feel you are slowly becoming more seperate from one another?
Does your spouse seem more angry/uptight/reserved than what you knew him to be?
Do you both still find times to have fun by doing other things, simple things like laughing together watching a funny movie? Or does your household just seem more 'cold' than ever before....
Do you 'bicker' and argue alot.....

These Q's don't have to be answered here, but just to ask yourself.

IMO I feel that intimacy is very very important in a relationship, yet it doesn't necessarily have to be sex. If you can honestly say that you are each other's best friend and you just like spending time together, then that's the bulk of it. If he needs 'manly' attention.... there are probably ways you can 'help' ifyaknowwhattamean....

To this day I carry a tremendous amount of 'guilt' around with me....not just on this issue, but pretty much on ALL issues! I just cannot be like I was before this @#$%^ came along.
I wrote something somewhere saying that "I've grown to hate life, because I can't 'live' it....motherhood 'hurts' too much cause I can't BE one....horseriding cause I can't DO it, and that I wish I never would have had the 'music' in me because it hurts too much now that it's gone.
Obviously I have yet to work thru some things.

It's been said many times before on this forum that we all have had to go thru a 'grief process' because it's like a part of us has died. Oh how i know.
The thing is, tho.....we really should do whatever we can to start from where we are right NOW and try to build upon that. Add one thing at a time and do it to the best ability you have. Don't compare it to what it 'used to be'.
Wow, listen to me preach We have no other choice really. It's up to us whether or not we want to live each day and capture the moment - did you hug your child today - did you make a baby smile - did you do a 'good samaritan' deed (oh how rewarding that is! No matter how small the deed, it's wonderful to see someone smile and know that YOU did that. Or, if you can't get out of the house, you can call someone just to make them smile, or send a note to someone....the 'old fashioned' way, lick a stamp! hooya

Anyway, sorry I went off on a rabbit trail there....

You've brought up a wonderful subject, Jenna. A very important one at that!
You are so young. I'll wager to say that it's probably a good idea to talk about it with hubby, let him know that you've been thinking on this and that it is bothering you. See what he has to say. At least you're showing him you care and haven't forgotten about this part of your marriage.

I hope more people join in and share on this

Rae

well Sophie and Rae what amazing words and advice from both of you. I did decide after a long hard and yet another difficult day to have a chat with hubby and god even when you think you know someone they can surprise you!

Tom said that sometimes its hard to 'love me in that way' as I push him away so much but he said that its not all about the physical part its about cuddling up on the couch , its about just being with each other!!

Yes Sophie its wonderful of you to find out about RSD and your right my skin hurts so much sometimes even showers hurt as my skin is so sensitive so a massage is out of the question but you know just talking to him felt like we got closer again.

since my journey started with this pain 3 years ago this last month has been the worst. Mentally and physically this has been the toughest. I cannot cope with the pain levels at the moment and really even struggling to stand on my feet for more than a few seconds. This week sees me sitting the first of my exams which i am dreading.

I did tell tom how down i was last night and let the tears flow after reading rae's post as I feel all of those things and it just does seem impossible to find a way to climb out of this painful sad place i find myself in. I think he knew but he did not know how bad it was right now as i hide everything from him as he already is copping with enough, anyway He is making me finish off this final two weeks of clollege work as he knows how hard i have worked up on till this moment. After that he says we will sit down and make a plan or talk to dr but for now i have the worst 2.5 weeks to crawl through and then i can try and tackle the next bit. all of ur support and comments mean so much to me what would i do without you all!

Pain, the killer of life in the chronic sufferer. That which saps the very essence of participative longing from one and tends to isolate...... Pain. Yes, it imprisons and takes away, bit by bit the life enjoyment we have known.... well, in part. The pain sufferer need be neither one gender or the other, as the partner in life will sense the tension pain produces in seeking control of the very inner person, sealing doom to those it can trap. It was for this reason, and this alone, that I started the Blessings thread, for I have long wrestled with pain and have become utterly hateful toward it. I am the enemy of pain.

You notice I speak of myself as being the enemy of pain. Why? Because in this way, I am looking at that which robbed me of bits of my life willingly and determined, NO MORE. Rather like that of Gandalf in the Tolkein trilogy shouting to the Balrog "YOU SHALL NOT PASS." So, I took another look at pain in my life. If I claim pain is my enemy, I am yielding to its power over me. If, rather, I claim to be the enemy of pain I am accepting POWER in my life to FIGHT for that which is mine, and fight hard. Therefore I AM THE ENEMY OF PAIN.

Oh, so simplistic, one might argue, but if I am taking ownership of my life, then I will take EVERY aspect of the pain issue and restyle its discussion in the wake of the words I AM THE ENEMY OF PAIN. Applied to Jenna's VERY timely and appropriate topic, I can approach Cleo with each aspect of our shared lives and address positively that which I CAN AND WILL DO. I master pain, it does not master me. I can hold hands with my wife. I can hug my wife. I can kiss my wife. I can take her for special times just the two of us enjoy, knowing that in the doing of it, whether it is to ride as she loves in the country to see beauty here and there, or to lay side by side talking, laughing, touching, or holding, I am mastering pain and respecting that one human in my life who is more important than any other. Truly, there are THINGS I cannot do purely due to physical limitation which were formerly parts oif my life. I can no longer lift 300 lbs., gyrate with abandon whether skiing or something else, but there is a safe limit to my physical involvements which bring a smile to my dear wife's face which is so precious that I love to behold it.

Seek out those safe limits in your own life, and you will thrive in the release blessing others brings to you "although you will continue to suffer some pain." Think back to the paperwork any of us had to execute prior to an implant surgery, and each will recall that no representative, whether manufacturer or medical, will promise ALL pain will be abated or that life restorative pleasures are absolutely within our grasp. BUT, we may take tiny steps to pleasure and fulfillment, perhaps expanding on them so as to bring joy to ourselves AND to others. For Rae, it is magically pulling a whatzit out of her magical left pocket, for me it is in the doing of some simple little thing which affirms to others they are valued. No, I can no longer ski. I may not hunt in the wilds with backpack and rifle and my knowledge of the environs to guide me. I may not be the envy of the dancefloor as I step, swing, and swirl Cleo as before, but I do know I can do some of it with her. She becomes my cane, the steadier of my body since I no longer feel below my knees. We can still do a bit of swing, waltz, foxtrot, although the other steps will let me fall to the floor.

Eat an apple one small bite at a time and soon its core is revealed inclusive of life giving seeds for more to come: push it into your mouth all at once and whomever tries such an exercise is bound to choke and die. Intimacy? No relationship thrives without the smallest of steps which can bring pleasure to each partner respecting limits which might exacerbate pain.

Explore. Respond to the needs of the love of your life. Let them know you have limits and the limits must be respected. Give and enjoy, for in the giving, beauty is fulfilled, joy is experienced, and the bond is ever strengthened.

Another Hero of my life, especially since my body is no longer the picture of strength it once was, is Joni Erickson Tada. She was a great athlete injured in the blossoming of life. Her life became MUCH for limited, and yet, in the limitation, she bloomed to the boundless joy of giving in ways that are fulfilling despite body limits. Discover your gifting of others in joy. Then you may be posting more on the Blessings Thread.

Sorry, not writing a book here,
Cleo says sometimes I run off at the mouth [or the keys],
She is right,

Mark56

Amazing posts by all!

I am very hopeful that in the near future T and I will find a way to rekindle some form of intimacy! for now the chat we had has us at least looking at each other differetly and much to my daughters amuzement a lot more kisses been given to little old me!!

I am glad i brought it up here, i keep pushing hubby away too afraid of the additional pain it will bring now. but i have learnt that intimacy is a lot of things and i am looking forward to holding my hubbies hand a bit more and trying to find a way through this other part of my life!

mentally i am having a good day but i cant even go out to the loo today as the pain is so bad my legs are frozen into a strange poistion and every little movement is like spazms of burning pain clenching my legs and hips! wish i could call someone to help me!!!

Hi Jenna,

My thoughts are with you, I can't imagine the pain you must be in when even a touch of your skin hurts like crazy, it must be terribly difficult at every level, even to give your two little ones a hug!

I hope ou're exams go well and you get through them as painless as possible - take your meds it'll help you think better!

Tom is right I never looked at intimacy that way either.

Take care hun,

Sinéad

you know jenn, i wasn't aware of what rsd was, i too had to look it up and boy was i really taken by surprise with what you are dealing with. jenn, you talking with your hubby was a brave, bold move yet it was exactly what i would have suggested you do. communication is key, in all aspects of life. any conflicts, even intimacy, can be managed if both parties are willing to open up and a) admit there's a problem or atleast something that need to be discussed, and b) be willing to laugh at yourself, admit you've been feeling the same way too. our partners are our lifeline, although i am saying this to you jenn, i am talking to myself. we must allow them in, let them know what we are feeling, how bad it is today, and last but not least, let 'em know we need them so much. we gotta open up, because if we don't, whose to blame when things cool off to the point of being cold? Hang in there, and keep those lines of communication, OPEN!

thank you for posting! i am blessed with such a great support network and hubby has never ever asked when will this end as i think he knows that unfortunately the chances of a miracle for someone like me are slim!! we are best friends and i did wonder why i never or he never brought it up but your right i need to keep those lines of communication open and hopefully when i get through this recent increase in pain which i hope settles we can see can we address these more. I am so glad to read your posts today of how well you seem to be doing since surgery i really hope that your recovery keeps going to plan but take it very slowly and just because people see you moving more easily does not mean you are able to do much my dr will not allow anything until 16 weeks post surgery. and i guess 16 weeks is nothing towards the years of pain we have endured. i had great results from my scs and was begining to get my life back but this horrible rsd has decided to spread to my right leg so as much as my back is still great my legs are in 24/7 burning pins and needles pain. anyway hoping for something or some relief next week. thank you again for your post and look forward to chatting to you soon

xx j

YES JENNA, that support from your most intimate of friends, your spouse is absolutely vital. Cleo and I, too, are Best Friends and her tender care and understanding has been both balm and salvation to me through the terror of unrelenting pain. She has seen me thrash on the floor of our bedroom gnashing my teeth attempting to grit through a pain spike pre SCS and even pre surgery of any sort. She has always been alongside praying with me through this. She inspires me along with my other Best Friend,,,,, God.

Although in agonizing pain, any of us can do the simplest of all things that any married or significant couple in relationship may do, and that is the reaching out to touch, whether holding hands, just laying together and murmuring words of love and encouragement, or other things that come possible to our being assure our partner, our best friend of the enduring importance of their closeness, their intimacy, their love is for us. Of course!!! I became incapable of performing as once before because simplest movements for me produced agony, and Cleo saw it if not in my body in those eyes of mine which will betray if I was trying to fake that I was OK.

Ours has most assuredly become a far deeper, more emotional, strongly enduring relationship and we are bonded TIGHTLY together, woven with the threads of a love relationship that is of God. Do I still hurt? ABSOLUTELY!!! Even now, we had to return home from errands because inexplicably my body betrayed me with a spike of pain, and my only solution is to TURN UP THAT SIGNAL and retreat to my bed. This is one of those paralysis inducing crank up of the stim situations, and dear God it hurts, but as I spoke to a store clerk friend a few minutes ago, she was sharing with me how in the community here I am an inspiration to people because they know how I fight NOT to resort to breakthrough meds. I had no idea this was a community observation. I was astounded. Humbled. God showers us with blessings such as those kind words when we need them most.

Each of us has an innate abiding care for those most deeply close to us. If we can manage to share with them, however intimately, our responsive ultimate love for them, they will know, they will observe, they will appreciate.

I am so blessed. I guess I should have written this on the Blessings thread.

Maybe later,
Gonna check out for a while,
Love,
Mark56