what would you want your spouse/SO know about CP and you

[Mark N]

One of the problems with chronic pain is our spouses or SO have to live with us or leave if they can't deal with it. What do you do to get your spouse to understand things you do. For example, my wife has always pointed to our pictures to show I wasn't happy but real reason for my face is the severe pain I am going through. One thing I have done to get her to understand is when she is in pain ask if she is angry or not feeling good. It finally sunk it to her that pain makes you look like you are angry.

Another example is when my voice sounds like I am angry with someone. I have learned to let my family know when I am in bad pain so they know that my voice isn't about being angry with someone.

One more example in my life is why I talk about things that aren't big issues. It took a while to get my wife to see that I am lonesome because I am not interacting with others for many hours or even days. She just couldn't get it for a long time but now she sees that coming down to the family area to do a chore or read really helps me from feeling so separated from her and the family. Chronic pain can really isolate us from people because we can't get out to see people many days and often we are sleeping when people are around. For spouses that don't understand it is easier to ignore us than to deal with the face we have or the tone we have when in bad pain.

For those that have been around for a long time know that I have had a bad time with my wife the past few years but I want to say that things are much better now. It is as if we are back to the beginning of our time together. My wife is now understanding many things about what pain does to me and she now does things to make me feel better as a result. I hope people can post about things that chronic pain had done in their life especially but not only if you have found a way for others to understand what you are going through.

[alex44]

Hi Mark - I totally understand about the anger thing - when one is in pain, one does not look happy and I guess it shows. Me and my SO - we are both disabled and a lot of time on small things, i will just go along to get along - maybe not the best solution, but somethings she just does not care to discuss - I respect that.
Blessings
A.

[Beader]

Hey Mark,

Thank you for this thought-provoking topic.

More than ten years ago I lived with a very active guy, one who had been a serious jock and worked an outdoor job. He knew about my CFS/FMS when we started dating, but we certainly had no way to determine what myriad effects it would have on our lives together. It became a learning curve for both of us.

One thing I was able to get thru to him about was how much stronger he was than I'd even been in my entire life, which he'd heard from others since he was such a powerful man. I explained to him that I could get things ready in the house before we went on a vacation or trip, but that it cost me a lot to pack the car -- something which cost him very little. Ditto for driving. I might be able to make the party and hang out for hours longer if he drove both ways while I put my feet up on the dash. He liked that because he's a musician and nothing gets in the way of their partying. He once slung me over his shoulder and carried me up a steep hill while I screamed in fear and embarrassment.
[Note: under the right circumstances, this is an amazingly hot romantic gesture.]

More problems arose under the emotional tent. He was out almost every single night with music practices and teenage son visits, and his absence started to take a toll on me. I missed him as well as the company, and was getting jealous of his time away. The holidays are always tough, and one Xmas/New Years I was going thru a bad flare. We negotiated a compromise where he'd go to the pre-NYE event without me if he promised to come home before *insert very late time* and then we'd go out for NYE together the next night. It didn't happen and I suspected sabotage. We had a dreadful resentful NYE together -- not what I'd been hoping for. I guess he wanted to have all the cake all the time.

The other rough area was not being able to predict when I would be sick and in pain. Crystal balls just don't work for this. Disappointment on both sides. I was sorry that I didn't know in advance or couldn't curtail my limited activities sufficiently to make the flares stop. I probably still don't know and can't predict.

So these are my first thoughts. I may amend them later.

[alex44]

Beader - Me and my S\O went through a lot of what you are going thru. we are both on SSI, no other income, makes it tough, would be tougher except my parents left me a house. Still not a piece of cake, Maintanance is a b----. However, it sounds like you and you Husband are working it out - talk to each other. Mark gave you some excellant advice, as have others. Communication is VITAL - me and my S/O have 20 years together and the first 5 were a little rough but now it is much better. sometimes we just agree to disagree.
Blessings
A.

[Beader]

Hi Alex,

Thanks for your kind words. However, Tree Guy and I broke up over seven years ago and he has been with the same woman ever since. I feel like I broke him in for her since he was so adolescent when I met him. He is basically a very very nice guy but his emotional palette only stretches from pink to yellow. That can be frustrating if yours is more nuanced, especially in the darker colors. My sister is still PO'd at me for not marrying him, altho' he never asked.


This may sound odd, but I can't really imagine being with the same person for over twenty years. I've just never come close to five...

[Mark N]

Alex and B, thanks for answering. It is always good to see how other get through problems or avoid problems with CP. We all including our SO go through a lot
because of the CP. One of the things that B brought up is one of the big things that makes it tough for both people is not being able to plan on when we can do something or when we are in too much pain. Alex, must be really hard with both of you having CP. One good thing is that both of you should know how the other one feels in bad pain. But it doesn't always work out that way. B sorry your guy is gone except is seems you are happy he found someone out. Each of us is different and even though I waited until I was 29 to get married we have been married for 26 years and she is the only one I want despite have a really bad decade as she struggled with my disability and her changes as going through the change of life but we stuck together through the problems are doing very good now. I don't think it is all that strange to seeing only staying with someone for five years. I was like that until I met my wife and then it changed the way I thought.

Hope others come around and add their ideas.

[Lil E]

Hi Mark and Alex, welcome Beader!
I've been very lucky, got a great guy. My issues started after we'd been married three years and escalated from there. Hes never said anything except we knew the job (marriage) was dangerous when we took it! It was his first my second. Sixteen years in he had a stroke. We just take what comes and try to make the best of it. Twenty years this year.

My family has always been supportive but didn't fully understand until some of them went through something similar. I think what they need to know the most is that yes it is possible to hurt all the time regardless of how you look or why you were able to do something the other day and today you can't move or that a hug can cause you pain.

[Mark N]

Lil E, you said a lot when you write "it is possible to hurt all the time regardless of how you look or can do something one day and not the next". It would be nice if we could understand why our pain reacts this way much less get others to understand. You are very fortunate to have a guy with the approach your guy has and he is fortunate to have you. I hope he hasn't suffered from any long term issues from his stroke and has fully recovered. That is the part of our CP, we don't recover from it and it often keeps getting worse. Wouldn't it be great to have CP get treated for it and return to the lives we had before? People, including us I think, have a hard time understanding chronic is a lifetime condition. There is no getting better unless we have some miracle in our lives or science comes up with a breakthrough on treating pain. Thanks for your response and bring ing up your ideas.

[LindaQuilts]

I certainly don't understand why stress can trigger pain or make it worse, but I wish my husband would understand that it does work that way. Sometimes I wonder whether he doesn't want to understand. That said, when he knows I'm having a bad day, he offers to get drinks or a something to eat for me.

[Diandra]

As Mark and Alex said, anger and looking pissed are a hallmark of chronic pain. I find I have a very short fuse when my pain is high and when I lose my temper or yell , I try to apologize right away and say, "I'm not mad at you, I am having alot of pain right now...sorry I yelled." I really hate to see that hurt look on my loved one's faces when I yell. I especially feel bad for my elderly mother who has memory issues....she asks me the same thing over and over and over and them I just snap and feel terrible.

I try to do nice things for my loved ones when I am feeling better, like I will make my husband a sandwich with a drink/ chips and bring it to him for lunch and he will be so surprised and I explain, it is so often when I can't do that, I rather do it when I can. He really likes that...he said it makes him feel loved. I often do that in the evening when watching TV, bring a dessert or cookies to my family while they are TV watching. I also do this same thing about love making and being intimate. Sometimes just receiving a hug is painful so when I feel better, I do try to show affection since most of the time it is difficult. Give a light backrub or footrub if you can or simply take one of those heat packs you put in the microwave and go put it around the shoulders of your loved one. During these cold winter days, even if your loved one is not in pain, a warm wrap around the neck feels great during the cold weather. As loving and understanding as our partners can be, it is no fun to give, give all the time and be the caretaker and get very little in return.

Linda...maybe look up stress and pain and printout an article for your husband. It is a mystery to me too but my pain doctor actually makes me rate my stress along with pain at each visit and says it is a major factor.

Also, when my pain is very bad and I am not being very pleasant, I do lock myself away in my bedroom or another room and just tell everyone I feel like crap and it is not that I don't want to be near them, I just rather be alone but if they are going to sit and have a meal, to come get me and I will at least have tea.

Also, and this is pretty mean actually, when my husband has bad back pain or a flu, I say, I feel like that every day and it never goes away. Like I said,
it is means but the point is well taken.

Sher...I can sure relate to having an active partner. Packing the car for trips sure is a deal breaker for me too. I also will drive only at the beginning of a trip because after a while in the car, I am often not able to drive and need to lie down.

Lil...I am so glad you have good support. I do think we try hard to not show we hurt all the time and maybe we do too good of job. One day I just started crying in front of my husband and he was shocked...he said he had no idea I was in such pain and I was surprised he could not tell. He said I push myself too much to do stuff when I feel bad. I said, If I did not push myself, I would never do anything. I keep a little daily date book where I write down what meds I took and when and if my pain is bad or unusual that day, I make note of it (mainly because my pain doc asks) and I told my husband he can look in that book anytime. I keep it at my bedside and I do see him checking it once in awhile.

Good hearing from others about what they do...thanks Mark. Diandra

[Mark N]

Diandra, thanks for the good points you make as it is clear you deal with pain every day and try to keep from hurting those around you. I especially like your idea of doing special things on the days or even for the hour you feel better and are able to do something special. I have tried to do that with my wife but find I have fewer and fewer of those days any more. It does make me try harder the times I can do something for her though. Don't feel bad about explaining to your husband when he doesn't feel good that you hurt like that and it doesn't let up. I have done that a couple times just so my wife equates how bad she feels with the pain I suffer through each day. She has had some lumbar problems keeping her home from work so he has gone through the pain and I try hard to care for her and get her the things she needs when she can't get up and about.

It is a tough relationship when you live with a CPer. For those of us that still have our spouse or SO next to us we are blessed even if they aren't as loving and understanding as we wish they would be. Just dealing with the life disruption and the painful attitudes we have is doing a lot. For those that have loving spouses on top of having them stick with us are doubly blessed.

[marijo]

I have taught myself to compartmentalise, and separate my pain, so I generally don't get bad tempered, but I do have a cross sort of face, and I have constant pain all day, and sleep very badly also. I think I have severe adhesions from all the surgery, and my spine continues to degenerate at c level, and L level, but you can't bore people with it all the time, so if someone asks me how things are I just say, fine. However I lost the plot at my GP last week, after a really bad night. I could barely speak, and she ended up offering me morphine on top of the tramadol slow release which I currently take, and topamax. I declined because I don't wish to go town that road. I would prefer some action re adhesions. I'm also concerned in case its anything else. I think she is just fed up with me having problems. Pain is awful, as you all know. Now, although I am able to walk reasonably well, not far though every step is painful, and my arms and hands hurt. Sorry just having a small vent.
Hi Mark, Long time no see, and everyone else. Its freezing over here. Its raining and then turning to ice, so lethal outside, and I have to take the motor out later.
Bye for now. I'll be back!

[Mark N]

Marijo, I understand what you mean about compartimentalize the pain otherwise it consumes our thinking. It is difficult when others say you look good or sound good while the pain is ready to blow your body up. I guess we get to be good actors about our pain so others aren't dealing with it all what time even when we do.

Rain turning to ice isn't a very good driving condition so I hope you had a safe trip into town. It has turned cold here after a mild Winter but it isn't too cold just not pleasant like last week. Take care of yourself and I will be looking for you to come back soon.