Any advice?
 

I have been living with my boyfriend throughout my most recent CRPS flare up. Since the pain has basically taken over my whole body I haven't been in the mood to have sex with him because it hurts my body so much. He has become so distant towards me. He is always trying to get me to do things and complaining about how he is "frustrated" he no longer even cuddles me at nigh . I am suppose to be getting those back shots(sorry I suck at rembeeing what they are called) he is always saying once I get then everything will be "normal" again. He underestimates my pain. He does so much for me and I love hi . But he thinks his "frustration" is more important than my pain.
Any one have any advice?

Det him to watch this ad take the experiment https://www.youtube.com/watch?featur...9g&app=desktop
Also to read this
Please read my life with RSD/CRPS

These are the things that I would like you to understand about me before you judge me.

Please understand
that being sick doesn't mean I'm not still a human being
I don't feel well often times and I might not seem like great company, but I'm still
me stuck inside this body.
I still worry about my kids and work and my family and friends, and I'd like to hear you talk about yours too.
Sometimes I want to talk about my illness sometimes I don't, so please don't roll your eyes when I talk about my pain and please don't pressure me to "get it off my chest" when I just want to pretend it doesn't exist.


Please Understand
the difference between "happy" and "healthy".
When you've got the flu you probably feel miserable with it, but I've been sick for years.
I can't be miserable all the time, in fact I work hard at not being miserable.
So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired I may be in pain. I may be sicker than ever.
Please, don't say, "Oh, you're sounding better!" as if I'm healed. I am not sounding better, I am sounding happy. Tomorrow I may sound worse again.



Please understand
that being able to function for an hour doesn't necessarily mean that I can keep it up all day. Doing everyday things, that everyone else takes for granted, exhausts my resources and I need to recover.
Imagine an athlete after a race. They couldn't repeat that feat right away either.
With a lot of diseases you're either paralyzed or you can move. With this one it gets more confusing. Maybe today, I can handle work and home, tomorrow it may be one or the other but not both. There is actually a name for this it's called postactivity payback and it sucks.
So, please try to keep in mind that I don't function like everyone else and just because I can do it today doesn't mean I can do it everyday.



Please remember
that the above paragraph can apply to just about anything, "sitting up", "walking", "thinking", "being sociable", and so on it can apply to everything that requires physical or mental effort. That's what a chronic pain illness does to you.


Please understand
that chronic illnesses are variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen.
Please don't attack me when I'm ill by saying, "But you did it before!".
If you want me to do something, ask if I can and I'll tell you.
In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.



Please understand
that "getting out and doing things" does not make me feel better, and
can often make me seriously worse.
Reflex Sympathetic Dystrophy may cause secondary depression (wouldn't you get depressed if you were always in pain and exhausted?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - if I could do it, I would.



Please understand
that if I say I have to sit down/lie down take these pills now, that I do have to do it right now, it can't be put off or forgotten just because I'm doing something. RSD/CRPS does not forgive.



Please understand
that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well, But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better.
It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness. I will go about the business of living, but I won't necessarily be happy about it either so please try to understand that there is a reason I'm a little crabby sometimes. I can't just hide in bed with my head under the covers because I don't feel good everyday. But I sure have tried to do just that.



Please If
you want to, you can suggest a cure to me, but please don't act as if
it's going to be my salvation. It's not that I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest something at one point or another. Typically, it's just the same old snake oil in a new package.
If there was something that cured, or even helped, people with RSD/CRPS then we'd already know about it.
There is worldwide networking (both on and off the Internet) between people with RSD/CRPS, if something worked we would KNOW.
I'm happy to hear what you have to offer and if it's something that I haven't heard before, I'll take what you said and discuss it with my doctor.

Please understand
that getting relief from an illness like this can be very slow if not imposable.
People with RSD/CRPS have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.



Please understand
that if I pull away from a touch or a hug. Its does not mean that I am anti-social. Or that I don't like you. It simply means that my body's ability to enjoy touch has changed and I am unable to greet people in a normal mater because of the chronic burning pain that RSD/CRPS causes.


I depend on you - people who are not sick for many things. But most importantly, I need you to understand me.


THANK YOU!


If he doesn't change you are better off without him

I loved this so much :) thank you so much. I'd love to talk to you more!! Thank you so much for this!! Everything you said was so incredibly related able. And I wish everyone understood this.
I loved this video as well

Wow Kevscar,
Great advice you gave.
I think we all suffer from this lack to be sexually active, especially at times of flare ups.
If you don't mind me adding, I think for total understanding by someone requires the ability to let ones soul to leave feelings of one self. I don't mean to sound crude here. Just MHO...:hug:

Hi Jenna,

This is such an important topic, thank you for raising it. And, Kevscar thanks for the thoughtful response.

This illness is a big obstacle to intimacy on so many levels. We are effected physically, emotionally and cognitively. Sometimes we are crabby from pain and prickly towards our loved ones even if they did nothing wrong. We may feel emotionally vulnerable and our esteem may suffer. Medications may dampen our interest. Our partners may be fearful of hurting us. All of this has an impact on our relationship. Anytime there is a problem of this magnitude in a relationship it warrants open discussion. It is important for both of you to talk about your feelings and needs. I hope you beat this thing back like you did before. But you don't know when that will happen or to what degree. I hope your boyfriend is open to learning more about CRPS so he can better understand you. Don't be afraid of asking him to look at videos or literature. Sometimes people are more open to information in black and white or from "experts".

Right now you don't need the pressure of worrying about his "frustration". However, physical closeness may lead to easier emotional intimacy and tender feelings. Physical touch is an important part of human relatedness. And sex has benefits of decreasing stress, improving circulation, increasing "feel good" hormones, etc. There are a million ways to get creative about meeting our partner's needs (and our own). Many of which can involve minimal or even no touch. He's a big boy, he can take care of himself, but you can be present and be involved even if it is just with stimulating conversation ;). And who knows where that may lead for you...your brain might get more involved than you anticipate and distract you from pain.

I think it is important for us, the sufferers, to experience touch that feels good. That may be the Big O or it may simply be a gentle touch to a part of our body that doesn't hurt. Get what painless physical input you can if at all possible. It is healing and signals the brain that there are better things to focus on. I hope for your sake there is some part of your body that doesn't hurt. When I was in my worst pain I found myself craving gentle caress in the areas that weren't painful. A gentle hand through the hair is a great pleasure and this simple thing can make people feel closer and loved.

I am sorry that you're having to deal with this right now when you have such stress and pain. Your boyfriend's frustration is not more important than your pain. And In no way do I want to minimize your suffering. I am just hoping you can find a way around it!

Sending gentle hugs, :hug:

Wow!!! I don't even no where to begin with this one. The other posts here were so well done that I think I am going to just keep this rather short.

Intimacy is a tough thing to deal with when the pain of CRPS constantly gets in the way. My husband has been absolutely wonderful through all of this and has learned more about this horrible thing than I have. We have not had sex in, I am guessing four or five months now. He knows that I am in pain and understands that the pain quite often takes its toll on me and my mood. He know how to read me extremely well and can tell when and where he can touch me. We take each moment one moment at a time. If we are able to have an intimate moment, we take advantage of that time. If all he can do is wrap his arm around me or hold my hand, that's what we do. There are plenty of times that I want him to hold me, but the pain does not allow it. It is very frustrating for both of us, but we take advantage of the moment, even if they may be small, to enjoy each other. We know we love each other, but there are times that all we can not be close to each other.

Take advantage of the times that you do have. Cherish each moment that you can. I have heard the term Carpe diem several times in my life. Don't seize the day, seize the moment.
:hug:
Alaina

I wish he would understand this. Its like now that I can't have sex. Then he feels there's no point in cuddling because its not leading to it. I just gerl so broken by this. Its making my depression worse

Some men just don't get it, some do. If you feel that he is pressuring you and no longer feel he is capable of understanding that you both need to be patient and wait for that right moment when you are feeling well enough to be able to be intimate, that moment when you can handle his touch even a gentle one. If he is not willing to learn about CRPS and what it does to you and how you feel each and every day. If he is not willing to understand that CRPS can cause you issues not only physically, but emotionally as well, then perhaps he is not the right person for you. I hope he is willing to learn and perhaps you might be his best teacher. This is a lifelong situation and if he wants to be part of your life, he needs to understand those things.

A relationship is about caring, sharing and learning from each other each and every day, loving what the other loves, and living for each other. A relationship needs to be worked at or it will start to fall apart or become another boring relationship that many, not all, long term married couples fall into. It can be done through intimacy, but quite often it is not. Try to find something that the two of you can share together that you are capable of doing. If you are hurting too much, let him know that and perhaps he will do his best to keep you company and keep your spirits up. Even if it is just siting around and telling each other stories, jokes or anything else.

My husband always says he lives for dimples. I believe him. He tries every day to put a smile on my face. After being together for 9 years, he always finds a way of doing that many times each day, no matter how I feel. I hope your boyfriend is capable of finding a way of doing that for you as well.
:hug:
Alaina

Jenna,

Purplefoot has given sound relationship and self-care advice. Now I get to jump in with the fun stuff :).

Don't let limitations come between you. Your boyfriend's needs getting met does matter. They don't trump your physical needs but they can affect how close he feels to you and are potentially creating stress and division. Our partners can't experience our pain and needs are relative. His are not going to go away. Hopefully they can be reigned in a bit...

With your current condition you should be in charge. Do whatever is comfortable for you that allows you to help your boyfriend feel close and loved. By all means don't settle for no cuddling. Let it lead to something...just let that something look different and be something you can tolerate. It might require timing of pain meds, alteration of methods or doing something new and wacky. Now's the time to try new things! I will refrain from making specific suggestions...However, I encourage you to let your imagination solve the problem in a safe and creative way.

I believe it is possible to find a solution that allows you both some level of fulfillment while keeping you comfortable. Don''t give up on this. Sex can be a healthy, healing distraction from pain and help you strengthen your bond during a difficult time. And it can definitely contribute to happier partners...

Jenna.
Just wanted to say thanks for bringing this up. Thanks to all of you that have contributed so generously. I think this is probably a tough area for many of us and finding a balance can be difficult. It's something I struggle with and have not found my comfort zone so I have little to offer except my thanks. ~mac

Great topic and wonderful responses!

My husband and I have been together over 20 years. I have had chronic pain and health conditions for over 30 years. He never knew me when I was completely well. (I was less limited 20 years ago, I will admit. I would not marry him for the first 10 years because I was concerned he did not know what he was getting himself into. He still wanted to get married 10 years later. Many couples don't last that long, without the challenge of chronic pain/illness.) He's a gem. we are good to one another, always.

As Littlepaw mentions, while he needs to take my needs into consideration, I also take his into consideration. We have figured out what works for us.

I also make sure he is keeping his balance in life by ordering tickets to some of his favorite musicians, etc. If I can go, great! If I cannot go, he still goes and takes a brother, a nephew, a friend. He returns with his batteries charged and is in such a better place than when he tries to stay at my side all of the time when I am laid up for lengthy periods.

A truly important topic!
:grouphug:
DejaVu

This is not me found it posted a few years back saying anyone could use it.

Health Benefits of Cuddling...
 

Ten Incredible Facts About Cuddling...


http://www.lifehack.org/.../10-surpr...at-make-you-wa...

Jenn, Offer to show these to your loved one. You both can benefit from cuddling. If he won't cuddle up with you, you may need to get a dog to cuddle with? ;)

In Tibetan Buddhist medicine, couples/partners are encouraged to sleep together at the hospital when one is admitted to the hospital. This is because of the known health benefits of touch during sleep.

My husband climbs into the hospital bed with me, usually to get a reaction out of staff in the ER. LOL. The ER stretchers are a bit smaller than a hospital bed, so it gets very crowded.:eek:

I hope you feel better soon!
:hug:

Thanks everyone for these wonderful replies and advice. Itmy boyfriend hasn't known me with out this illness. But since I've known him up until about a year ago it has been tolarable enough to handle almost anything. But now tgatbit is my entire body. I just can't handle it anymor . I feel like I might have to stay with my mother until I get all the help I can to get back to normal life. Anytime I try bringing up whatbim going threw he just can't handle It. I've already caused his depression to come back. I feel like I am just ruining this relationship.I feel like a ruined him...idk. Sorry for ranting a bit. Just a lot of stress

Have Self-Compassion
 

Jenn, It's okay to take a step back, to decide if you need to do life differently for now, to stay with your mom until you get your own life in order.

We can easily feel like a burden to others, feel like we are causing them too much stress, adding to their own struggles with depression, etc.

Honestly? I watch my husband for signs of depression. When I see those signs, we have a talk, again. We talk about what he needs to regain his balance and we arrange for his needs to be met, immediately. He is a very sensitive, empathic man. He will get depressed watching anyone else go through long episodes of pain. He needs me to help him to stay in balance and he needs me to tell him it's fine for him to do what he needs to do to regain his balance.

At the same time, I also need this. I sometimes need space. We allow for this.

If you need to be with your mom, it's fine. It may even be best for now? You know what suits you best at this time. Sometimes, trying to carry on a relationship is too much when challenged with so much pain and trying to focus on recovery.

Have compassion for yourself, too, Jenn. Consider your needs, too.

Separations can be helpful in many different ways.

Think through how you can best recover, as this is vitally important.

We are all here for you.

:hug:

Jenna,
Everyone here has offered excellent advice. One thing that stood out to me is Deja's advice.
It sounds like Deja and I have husbands with similar personalities. I was in the hospital for two months while we were married in college, and nearly every night he slept in the small hospital bed with me. Also very similar to Deja and the others that posted, I always try to be very aware of his needs, physical, emotional, all of them. Sometimes I feel like he just needs my sincere gratitude even though he has never said it I feel like he needs to hear a sincere "thank you for this........" He always is happy when I'm appreciative. We were best friends for 4 years before I would commit to dating him, and I've been sick the entire time. Being sick is a part of life for some people, but it doesn't make us any less of a person. I always tell our four children to date and marry people that love them unconditionally. In the vein of what Deja was saying, even as a grown woman I still on occasion go to my mom and dad's to have a slumber party with my mom, and give my hubby a night of respite. His dad lives on the beach, and he occasionally with my persistence will go spend a weekend with his dad, where they stay up late listening to music and spending the days in the ocean. That is my husbands happy place. It is very therapeutic for him. My point is both of you do things that will take care of yourselves, and then encourage one another to do those things. As many others have posted, open communication between a couple is essential. You never know.....it could be something very small that you talk about that produces the biggest outcome. Sincere best wishes.

Sent from my XT1028 using Tapatalk

Hi Jenna,

The most important thing is taking care of you and getting yourself as well as possible. If staying with your Mom gives you the support you need and less stress then it certainly sounds like a good, viable option. You don't need additional stress. It impedes healing. Your Mom has been through this with you and understands what is happening.

It sounds like there are other issues besides a change in your sex life. Having stress in the relationship, feeling that you don't have support and feeling responsible for your boyfriend's mood aren't helping you get better. Our stress does have a big impact on our condition. Stepping out to your Mom's may be a big relief. Then you can just worry about you for a while and maybe your boyfriend can process what is happening a little better when not faced with it all the time. You two can go forward from there and see what works.

Choose the solution that optimizes your recovery. You deserve peace and well-being.
:hug:

Wise women have spoken about caring for yourself and choosing what is best for your recovery. Your recovery must come first and the relationship will either weather the storm or he is not the right person to live with someone that has a chronic pain condition. Go where your heart tells you it is there you find comfort and peace. ~mac :grouphug:

I would like to add something here if I may. Just because we have CRPS doesn't remove the fact that contained in these body's of ours is either a man or a woman, each with our own needs, wants, and desires in relationships. So, in any situation, it is not just about her understanding him or him understanding her. Intimacy is an US issue a WE issue. And one thing is for certain. The moment that the needs of one or both are not being met, the relationship begins to come loose at the edges and the couple begins to separate. So, when a terrible disease like CRPS comes along it is like throwing a monkey wrench into an engine that was working before, but is struggling to fire on all cylinders now. CRPS changes everything, so it must be discussed as to how the disease affects the intimacy and the needs which a man and a woman still have in the midst of a disease that has changed the way things used to be. So sitting down and truly talking about this disease and how it affects our needs as men and women can truly become an instrument to strengthen intimate relationships and further our growth as people. And the end result can be a beautiful experience for both.

My Goodness DejaVu, you are one gifted and wise woman. WOW.. I have tremendous respect for you. Spot on! WHO-WAH

Hi Spike, I am blushing, from head to toe. :o
Thanks for your compliment. I've made many mistakes. I just keep on trying and eventually find what works best. :) I have almost as many opportunities to get away as he does. Much like "Still smiling," I also go on brief trips with friends, etc., when I can do so. When we go our separate ways, we enjoy getting back together and sharing stories and pictures, etc.

Warmly,
DejaVu