Chronic Pain Relationship Tips – Learn from our Mistakes! : CRPS Life Hack
Posted on April 4, 2019
*This is a transcript of the video interview from above

Kristi: Hello everyone, my name is Kristi Oen and I am a CRPS conquer and the founder of PAIN Help. Today we're actually talking about relationships and CRPS and ways for you to improve your relationship and for you to help to understand each other. Joining me today is my husband Justin.

Justin: Hello

Kristi: When we were coming up with some ideas for what to talk about here, the most important thing that Justin said was actually just for people to start to have a conversation.

He said it was actually really great for us to sit down and brainstorm how one person felt and how the other person felt about what you're going through. A lot of times you don't do that.

You don't have a real honest conversation about what's happening you just play the stories in your mind. (turning to Justin) What you think I have stories in my mind?

Justin: Even when you do have that honest conversation it is tough not to get defensive. We're human, at least I am.

Kristi: Nothing is perfect. But it's important to stay open and stay honest about it so that you can work through things with your partner and maybe even a caregiver, but this one is more specific to Justin was my caregiver as well as my husband. No?

Justin: Not your caregiver.

Kristi: You never took care of me? Well not anymore.

Justin: You wouldn’t let me.

Kristi: That's true. Even when I was really sick I was pretty stubborn. Sometimes I would rather sit in bed and almost starve all day then ask you to bring me food that's how stubborn I was.

It's not good for you to be stuck in that kind of mindset where you feel really bad for yourself or you are really angry that you can't get up and you almost resent the other person for taking care of you; when really they're just there to help you.

We came up with some ideas of what you can do to kind of help work with each other a little bit better and understand what's going on.

For the caregiver or the other person in the relationship I think the most important thing is for them to realize that the pain is real. Even though the person kind of looks okay it is seriously real and a lot of times it doesn't make any sense and day-to-day, moment-to-moment, hour-to-hour things can flip.

Right, Justin? 

Justin: Yes.

It's obviously difficult for Kristi or for whomever is suffering from whatever it is but it's also difficult for significant other, spouse, companion, child, whomever or whatever role you may be playing because one minute you could give your whomever a hug and the next moment if you get near them at all they get angry and expect you to know that something's going on.

And to not to take that to heart is hard for me it's difficult because you know two seconds ago everything was okay and often we think what did we do at that moment to cause this but it's usually not us causing it. It's whatever is going on and they're just trying to protect themselves and you're wondering what happened.

Kristi: That's really important to bring that up. It doesn't have to do with you and I think that's something that I said over and over to you but I don't know how much it got through until sometimes you're beating it into somebody.

It's about my CRPS not really you and you kind of blow up and get crazy. I remember when you used to get close to me and if you get close I have my hand out and I pushed you away and you be like what are you doing. It's just a defense mechanism because I don't want you to get too close but I didn't necessarily tell you that it’s a high pain day.
Justin: That's the challenge. Or they just aren’t telling or verbalizing my CRPS is bothering me. She doesn’t like to do that. 

Kristi: I don’t like to use the word CRPS or acknowledge my pain.

Justin: So communication…

Kristi: It’s huge. So we came up with different ways to do it. If he came home and said how is your pain today I would get upset because it would make me focus on my pain and like flare me up so instead…

Justin: Which would be my fault...

Kristi: So instead…it would be his fault, he should know better.  We talked about it lots of times. (laughing)

Justin: Yeah, why be concerned. (sacrasm)

Kristi: The way to say it instead, you know when you say those words like the CRPS and pain, they don't bother me so much anymore, but in those moments in that flare where I'm at I was like in a four year flare that was just kicking my ass it's more like how was your day is there anything I can do for you; as opposed to making it about my pain and everything. I don’t think that we ever became excellent at this. This why we're going back and teaching you guys a little bit to.

Coming up with some sort of code instead of calling it pain maybe you call it something else or you just say you know today is a chill day or back off day or something you know without using the word pain or CRPS.

Justin: That would be great! Instead of me having to be the carnival worker and guess.

Kristi: I thought you would be good at it. You are a little intuitive; you got a little something there.

Justin: I’m sorry. I’m very sarcastic because I’m in a safe position to talk about it.

Kristi: Right now, because we are on camera.

Justin: Really, she's right I should and whoever's close to should over time become more aware. I think I have become more aware the biggest challenge is Kristi's getting better so again sometimes for longer periods times it's okay and you can do a certain things and then all of a sudden boom there's that flare up and not…

Kristi: It's not really that I get a flare and it's weird because Justin will ask me is it your CRPS and right now it doesn't bother me if he actually says that word where a year-and-a-half ago I would have been really angry probably cried and ran away from you. But the way it feels like I'm afraid like it's a Fear Factor like that noise would have usually throw me into a spiral that activity would have normally like blown me so I kind of am really cautious and he's…

Justin: It’s more of a preemptive...

Kristi: Yah, I’m like why you doing that and wait is it really hurting and no but I'm not…

Justin: You don’t want to take a chance.

Kristi: Let’s just not go there; let’s not do that, to try to just keep things down. It's been a long time since I've had a flare and I don't really feel like I'm going to get one again but just keeping things down so you don't have to worry about it. I remember when I was in my flares Justin used to get kind of upset. (Justin yawns) You okay honey, is it your bedtime?
KristiHe would get upset sometimes because my son I would allow him to hug me and touch me but then he wasn't allowed to and I didn't, a mother is sometimes going to do anything for her child but for her partner forget about it. 

You know the pain that I would endure childbirth etcetera and everything that I've done for my child it's different when it comes to a spouse so don't take it personally if the children are allowed to do things that you aren't. It does happen that CRPS is more in females than males so please don't take it personally when they allow… 

Justin: Hmmm…

Kristi: It is. That's what they say, at the statistics that I've heard. Also the way Oen would, that's my son's name, would hold me he like hug me around my hips which wasn't as bad as spot some of the worst places to touch me would be my shoulders are like giving me a hug or doing anything like that previously. Sitting this way next to him I would have just been dying you know a half ago with a little bit of rubbing, the touching, even wearing clothes and doing things, so…

Justin: Even if I wasn’t the one moving.

Kristi: Yes, He doesn’t have to be the one moving. It’s just being that close and then the fear of being touched and what will happen. 

Remember the fear is going to increase your anxiety that's why it's important to talk and tell them because you know he'll be trying to get closer and maybe just be there not really notice anything's wrong and you keep pushing away and moving the chair and then he moved the chair closer. And you’re like listen dude, I'm afraid that's going to hurt me.

Justin: Right.

Kristi: That’s what you need to say.

Justin: Use your words.

Kristi: Use your words.

Justin: She's laughing because I say that to her often.

Kristi: It was really tough to admit you're in pain and have so much going on and those of you that have children you might know like sometime they dump on you because it's a safe space and I feel like I know for sure I did that on him. You’re little more harsh on your loved one. I would never yell at a random stranger who accidentally touched me but when he accidentally would touch me and I would go into a flare, I would go crazy on him like you know better why would you even get close to me and just make things so much worse.

The good news was once we got that awesome Wellness device, if I did get touched I can get on it, crank it up and the flare would dissipate and now after being on it for almost 2 years now I can be touched.

I don't have to worry. There are times where I get a little nervous like you said but I haven't really had anything going on which is awesome.

Trying to be positive, on both sides, that's a real hard one but I think it's really important., even though things feel really dark and dismal for you.

Definitely one of the words I hated him saying was relax, it’s going to be okay. Like don't ever say the word relax to me ever again in my whole life we pretty much came up with. Talking to your partner about what words maybe trigger your emotions differently and what we can say and how we can work on it differently. We came up with let's meditate together, let’s do something together to help.

I definitely didn't say thank you enough.

Justin: That's on recording right?
Kristi: I resented being helped so much, I think I'm going to cry. You’re going to make me cry. It sucked.

Justin: Can I hug you? (hugs)

Kristi: It sucked.

Justin: It does suck. From my point of view, I've said this before, I'm a helping kind of person and when I go to help my intent is never malicious but sometimes it’s taken that way out of her protective reaction and if she takes it maliciously then it's that defense mechanism and then you know you both have a defense mechanism and hopefully one of you can just deescalate the situation. It’s a work in progress like any relationship or any marriage, be it you have any type of physical dysfunction, mental dysfunction, emotional…

Kristi: All of them blended together… CRPS really takes a toll on everything.

Justin: I’m not even going to say CRPS, life takes its toll. There's constant stressors and it’s wonderful you meet people and you think wow they've got a great, but you know there's always something that needs to be worked on, that's part of being human.

Kristi: Actually that's true and that's a good way to think about it that, as much as you've got going on in your life other people have something even though it's not always saying you can't compare apples to apples but it's just you have this thing that you have to get through and you need to rely on each other and work together in order to really make it happen.

Another huge conversation that you have to communicate about is money, is money spent and I've had trouble in the past with some relationships and you have to when it came to money and talking about it and working through it and having people who didn't want you to spend money on your health because I was dumping, I dumped over $250,000 in 10 years on trying to find a cure and even get diagnosed with CRPS and what was happening. Justin has always been extremely supportive but it is hard and we had to have discussions about things and when we are talking about getting the wellness device he researched the heck out of it for two months.

Justin: Well yah, like she said we had spent a lot of money so it's hard to put down a significant amount but as we found even before we purchased it did help some so and through the research the science is true. The clinical studies are there so you know it's going to work on some level so even if it's 5% on the positive side that's 5% more than you had so it was well worth it. But, it was hard to take to bite the bullet and do it.

Kristi: It’s one of those things where I dropped $6000 on 3 weeks of hyperbaric oxygen therapy that did nothing for me and I had nothing to show for it and it was just you do that that and it's done and sorry see you later and nothing's going on.

It's important to have a conversation about what are we willing to try where's the money going. It's a hard conversation especially when it comes to your health and you're chasing so many dreams of wanting to be healthy again. Our biggest mistakes made with that was where I just automatically trusted doctors remember when I was going to go, we won't say the name of where I was going, but you're dropping $800 for a half hour visit and then it's due this $5,000 test do this you know whatever and it was just okay let's do it let's do it I'm just doing every single thing that they're recommending without doing any of my own research or thinking about it or understanding what’s doing to me and remembering that I have CRPS.

So I always control them and slowed them down saying wait we can only do one thing at a time because I want to make sure, it’s like a true case study on myself. What is changing when I do just this one thing?

But then the problem is I know that they're introducing new toxins into my body or they're doing something else like it wasn't really great stuff for me but I was so desperate so getting back to more the holistic what's naturally going to help my own body work that's really important to think about. You want to get back to your body functioning not something else functioning for your body.

Justin: Not that she is giving any medical advice.

Kristi: Yes that’s right.

Justin: You need to do what works best for you. Be it stand in the sunshine for five minutes a day to whatever you feel comfortable and it's working for you what a doctor says.

Do what's best for you, do your due diligence, and do your research.

I mean being a healthcare professional you know I see people's lives get saved but in the process things are damaged in the body. Could their lives have been saved without doing the damage possibly but in an emergency situation or whatever situation it is it gets done. So you know really before you jump in headfirst and again my opinion if you want to jump in headfirst that's fine I have to be politically correct I can't tell somebody what to do but you know understand what's going on, understand the pros and the cons and the potentials I mean we see commercials all the time this will cause this, this, this, this, and this up to death. You know, anything can cause that. You could walk outside trip on a crack that could cause death.

Life is about risk the key is to reduce your risk as much as possible but have quality of life.

Kristi: I was going to say, when the doctors said here go on thyroid medication that’s going to help you. I just started doing it. I didn't even understand the different kinds of thyroid medication and with a synthetic vs. the animal vs. whatever and they never told me that once we put you on this you're on it for life. They didn’t tell me, the next year when I came, they said we have to up your dose. And I wanted to know why do they have to up my dose, basically because they're giving me thyroid medication my thyroid isn't going to be making as much because it's like hey there's lots of stuff there. So it just put me in this perpetual loop that I didn't know I was getting into and then I was trying to get off it. And they said you can't get off of it well I did get off of it and not have to worry about it. That was my goal; to get off at off my 30 some medications which was $1,000 a month and $1,000 worth of therapies a month.
 
Money is a huge one. You have to talk about it. You have to be open to it, the other person has to understand where you're coming from and you have to make realistic plans and goals.

Don’t just do everything, make sure you research a little bit more and understand, of course you can do what you want, but I would recommend thinking about it a little bit because it's hard when you really don't know what's going on.

Justin: Now you remember, you always know your body better than anyone else.

Kristi: Anyone

Justin: And with my patients, I tell them that. Tell me what's going on, I want to listen to what's happening to you and as we're going through whatever we're doing let me know how you feel because you know that's the key you know yourself better than anybody and if whatever professional whoever you're going to does not listen to you, take that to heart, you know there's people out there that are exceptionally, exceptionally intelligent but may not have the best bedside manner or personality. That poor bedside manner and personality will affect you negatively. Understanding you know yourself the best.
Be aware of what your body is doing, like Kristi said, even with healthy people it's a challenge with a relationship. Being aware of what's going on, being aware emotionally of how things affect each other but the key is to hopefully grow together and learn.

Kristi: The other challenge we really had was when I was really sick and you were pretty much taking care of me, now we have a whole new dynamic of kind of little issues and tiffs because you want to still take care of me or you think I'm going to hurt myself.

Justin: Right.

Kristi: And sometimes I do.

So what we have right now is let me ask for help. Instead of you always did everything for me, give me the opportunity to ask.

The little problem we have is once again a communication problem where sometimes I don't want to admit that I might want or need help when I'm doing things because I'm pretty much really doing awesome and so I like to try to do as many things as I can but sometimes it kind of hurts me a little bit. So we're still working on that balance. Communication is really important.

In the beginning you would take a laundry basket out of my hands and just take it away. To me it felt like you were trying to control me or belittle me or you know like it was just taking things away from me so I need to realize that he was just trying to help me.

Now we have to ask each other, let each other know what's going on and how I'm doing and even say today is a tough day or today is a really good day or today you know you can touch me or not. We have a lot more good days, I can’t even remember the last time I had like a bad pain day it's been so long. Just working together and focusing on communication is so helpful.

Do you want to talk a little bit about how me getting better changes everything for you? Like all the rules got thrown out the window.

Justin: I really feel there are no rules. The rule is what Kristi says.

Kristi: That’s a good rule, I like it.

Justin. Yes, it’s a great rule. Since she's gotten better, it's hard to describe because you know she had her moments of good times which were less frequent in the past, much more frequent now so you know I'm always hopeful. The challenge right now is in the past I was to a point where I had a fear of touching and a fear of doing whatever and now I still have that fear even though I want to and she wants me to and I don't know. So again communicate, hint… hint…

Communicate. It's more I need to know how she is feeling because she knows how she feels I cannot guess because like most people with CRPS or lot of things they look okay.

It's better to communicate and say something instead of me coming at her and scaring her because there's still that fear even if it's not that pain because it's been for 30 years that she's had to have that protective space.

Kristi: Yes.

Justin: The differences you know me understanding that she's feeling better but letting my guard down a little bit until she says that no because I know it's it hasn't been as bad as it was in the past so whatever she may feel if she does will be a lot less but still I don't want to cause any problems.

Kristi: I don't know what it is, maybe it's a female thing but you just really want them to read your mind and for them to know exactly what you have going on inside. You feel like you're giving all the signals in the world that it's okay to be around to be touched for anything to be happening and it's just not always being picked up so you've got to make sure that you do communicate which it seems so simple and yet it is so hard.

Like you said it doesn't even matter if you don't have CRPS for couples to just communicate; talk about money, talk about boundaries, talk about your pain talk, about the things that are going on, that's the key. That's the key to every single relationship that you have caregiver, husband, wife, child, whatever it is, talking through it and being respectful of each other.

There were a lot of times I was in so much pain and my life was a living hell but it also made his life a little bit of a living hell. I don't even know what you were thinking, you married me sick. What were you thinking? I remember being in the wheelchair, you doing all those things for me, you loved me and cared about me despite all of the crap that I brought to the table and it was pretty much just dumped in your lap like here take care of this permanently disabled person.

Justin: No.

Kristi: You don’t feel like it was that way? I brought something to the table?

Justin: Yes, I mean you brought yourself.

Kristi: That was good.

Justin: I mean you brought yourself.

Kristi: I guess I sometimes think about it, I sometimes wonder, why would you take that on?

Justin: I think if you're…you got me a little weepy…I think if you're a good human being you look it you look at the big picture you don't look at a disability, you look at what the whole person is.

Kristi: Yes, but knowing I'm permanently disabled have an incurable disease, you're not occupational therapist who knows that and still. What is that nurse, Florence Nightingale syndrome? Did I catch you?

Justin: No, I don't think so. I am a caregiver absolutely but it’s because I love you.

Kristi: I love you too.

Justin: You’re going to pay me for that later. I'm not a paid actor.

Kristi: Communication, super key! You can have a relationship sometimes it can really suck because you've got to make sure that you get out of your own head. I really think separating what's happening with the illness and feelings is really, really key to not take it personal.

Justin: Try to find things you can enjoy together, even if it's just sitting watching a movie or going outside and sitting or meditating or whatever you can find no matter how mundane it may seem if you can enjoy it together that's really important.

Kristi: That’s worth it.

Justin: There are a lot of people out there who are wonderful and deserve to be loved and have companionship and you know it's important. Some people may not want it that's fine but you know there are a lot of people out there who feel like they don't deserve it.

Kristi: It’s a very isolating disease and you feel like you don't want to be a burden to other people and you don't really feel like you deserve anything with all this stuff going on with you so I think that is really important to look yourself in the mirror and know that you have value.

I mean even just a few seconds ago when I was asking you that question, I was really doubting myself, asking you what the hell were you thinking. Would I take on that?

Justin: Would you?

Kristi: If it was flipped around would I take on that responsibility of somebody else?

Justin: Would you?

Kristi: Well, if it was you of course. That's a tough thing to even think about but know that you have value and know that it isn't necessarily the life sentence that we thought it was going to be either. We've been out of my flare and all that crap for over a year now with continual Improvement things keep getting better and working for me so you can do it too.

Justin: You can. It does take work; I mean nothing is perfect, except for my wife.

Kristi: That’s usually what I'm telling you.

Justin: That you're perfect.

Kristi: Yes. Keep working at it, it is worth a relationship, you are worth having everything in the world, it is worth you taking the time, the money, whatever you need to do to make things better for yourself.

We hope that you got something out of us sharing some of our…I was going to say deep dark secrets…

Justin: Quirkiness. You know it's just relationship building just anybody needs it. It's really important.

Kristi:  Whatever you can do to help each other move along that path but its communication open, honest and you really have to believe them. You actually believed my pain when a lot of doctors a lot of other people didn't so that first hurdle is getting them to believe it so if you need, they need to call and talk to Justin they can – your spouses.

Justin: Whoever watches this feel free to contact her and she'll give my information or whatever I have no problem doing my best to listen to see if we can figure things out together as a whole because the bigger the group the better solutions you're going to find I think.

Kristi: Absolutely, having different perspectives understanding what it’s like to be the spouse as well as or the caregiver whatever you want to call yourself as well as the person who's in pain and having someone else who hears and understands that.

So we're here for you guys plugging along on our journey, I'm hopeful for and waiting for your conquer story too.

We hope to see you guys again soon, bye bye.


Kristi Oen
CRPS Conqueror
kristioen123@gmail.com
630 740 0312

Facebook group:  PAIN Help for CRPS and Chronic Pain Conquerors 

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