23 Tips for Supporting a Partner with Chronic Pain. ~ Pete Beisner

Via on Apr 17, 2013

Old Couple

My wife is a kind and creative woman who suffers from chronic pain following a crippling car accident.

We will be celebrating our 14th wedding anniversary this week, and I can say without a doubt that despite the problems that come with periods of joblessness and raising two kids to maturity, the thing that has had the biggest influence on our marriage has been pain.

So, I have two sets of tips. The first set of tips is for supporting someone you love who has chronic pain. The second set of tips are practical suggestions for how to support a woman in an episode of critical pain, like just after she has had major surgery or a serious injury.

1. I think that it is important to think of pain as your common enemy, not as a part of your wife or baggage that comes with her. It is something outside of both of you that impacts both of you and that can kill your marriage.

2. If your wife is anything like mine, she will try to hide her pain from you. She does it for two reasons: one, she does not want to be a wuss or a whiner. Second, she knows that her in pain is distressing for those that she loves, so she hides it from us.

3. Because women in chronic pain have to be good at ignoring their own pain, their maximum sneaks up on them and on you. Trust me when I say that you do not want to be surprised by your wife’s pain. The wall of pain will hit her hard, and if you are lucky she will end up snapping at your or the kids. If you are unlucky, she will collapse into sobs that will break your heart to hear. Before I learned to read the signs in my wife, it would seem like her breaking point would come out of nowhere. We tried to get her to tell us when she was coming up on her limit, but she only notices about 30 percent of the time, and that is after years of coaching and encouraging.

4. To avoid a pain-storm, be on the look-out for non-verbal clues of increased pain. My wife who is normally a font of cheerful patter gets quieter the further into pain that she goes because she does not want her voice to betray her pain. She holds her body more rigid, trying not to limp and holds her breath, taking one long rasping breath for every three that I take. There is also a look of grim determination that settles in her eyes, even if she is smiling.

best-chronic-pain-supplements5. When you note the non-verbal clues of increased pain, reflect them back to her. Ask that she put her pain on a scale from 1-10, but make note if she tends to tip to one side of the scale. My wife has had a C-section without anesthesia, so that is her 10. She rated a compound broken bone where I could see a jagged bone tip protruding through the skin of her ankle as a five. So know how she rates things. When you determine that she is in rising pain, encourage her to move towards a place where she can rest and take medication. Remind her how much the pain storm will cost her. If it is worth it for her to continue, then so be it. Do what you can to support her.

6. Chronic pain does not mean that the person has the same level of pain every day or even at various times in the day. So encourage her to put the fun stuff first. If she has enough energy and pain relief to do a quick trip out and about, encourage her to go someplace fun rather than the grocery store

7. Don’t let her “should” on herself—beat herself up for what she cannot do. Argue back when she expresses guilt or sets impossible expectations for herself. When my wife tells me that she is a bad mother because she couldn’t stand in the rain beside a soccer field, I remind her of all the other ways that she has been there for our kids. Encourage her to tell significant people in her life such as her boss and co-worker that her life is significantly impacted by pain. Remind her that stating the truth is not the same as complaining and it does not make her a whiner.

8. One of my early ways of dealing with my wife’s chronic pain was to encourage my wife not to do things that caused her pain. Then I realized that if she avoided all activities that caused her pain, she would never do anything. Let her grit her teeth and get through pain for things that are important to her, even if it kills you to watch her do it. And trust your wife if she says that she wants to have sex even while in pain. Sometimes and in some women, arousal can do wonders to offer temporary relief from pain.

9. Women in chronic pain are used to working through pain, distracting themselves, minimizing etc. They play mind games that help them get around it. But this means that they pay less attention to their bodies than other women do. In some cases, this makes it harder for the woman to get aroused. In my wife’s case, it makes her really really clumsy. I used to try to help her by saying things like “Your toes and nose should be pointed in the same direction as the location you are placing an object like a glass.” That really isn’t helpful. We have compromised: for things my wife knows are important to me, like lifting and carrying food, (I love her cooking and when it gets spilled all over the kitchen floor, I am in pain) she agrees as a favor to me to allow me to do those things. And, I keep plenty of Band-aids, ice packs and other things for the rest.

10. The key thing to remember is that pain builds even while you are managing to ignore it. The longer your wife is in pain, the more of it she experiences and the less she can block it out. So what would be an objective level 5 pain your wife can block out to make it a level 2. But when she is no longer able to block it, it will come back as 6-8. Beware of this whiplash phenomenon.

Post-surgical or other high pain events:

1. If at all possible prepare ahead of time. Nursing a person in pain is more than just sitting beside them; there is a lot to do. If you are organized, it will help a great deal. Here is what you will want at a minimum:

 >>Pre-made shakes that come in individual portions like Slim-fast. The reason is that narcotic pain medication must be taken with food or it will cause severe gastric distress. In the middle of the night, this is the best solution because it is readily available. Also, the fiber in these drinks will help with the constipation caused by narcotic pain medication.

>>A thermometer to look for any fever spikes

>>A notebook to record pain levels, fever and time of pain medication. Don’t be ashamed to tie a pencil to it. You would be surprised how chaotic it can get.

>>A minimum of two ice packs. I prefer to use the old-fashioned round and floppy hot water bottles because they are strong, but you can use Ziploc freezer bags if you wish. The mixture that I like best is two parts water to 1 part rubbing alcohol. I am told that in a pinch you can use 1/3 cup of 80 proof vodka for two cups water, although I have never tried that. You want those frozen in advance.

>>Ask to get her prescriptions for pain medication before the surgery that way you are not having to leave her to run out and get them. I nearly totaled my car trying to get my wife’s pain medication, and that delay meant she went into one of the most frightening pain storms that I have ever seen.

>>A timer or alarm clock. You think you will remember when the next dose will be. But don’t trust that.

2. Advocate for your partner even before she comes home. Do whatever you need to to keep her as pain free as possible while she is hospitalized. Make sure that they don’t send her home in pain, otherwise the trip will be hell. And be sure that you understand the discharge instructions thoroughly. Put the number that she is supposed to call in case she has problems in your cell-phone so there is no mad scramble trying to find the phone number.

3. Your primary job is to help your partner avoid a pain storm. They feel unmanageable and you can do nothing more than watch helplessly as your partner writhes in pain. Two secondary jobs you may want to take on are helping her groom to whatever extent makes her feel better and monitoring medication side-effects. Narcotic pain medication makes many people extremely constipated. During the fuzzy days immediately post-surgery, your wife may not notice and it could end up being a week. You don’t even want to think about how that kind of constipation is resolved. So, keep that on your radar.

4. You have two weapons to help you keep a pain storm at bay: controlling swelling and managing pain.

5. You control swelling through ice and by religious use of whatever anti-inflammatory her doctor prescribes. This will be something like a high dose of ibuprofen and will be prescribed in addition to a narcotic pain reliever. Many people mistakenly think that the only purpose of this anti-inflammatory is so that they have something to wean themselves onto as they get off the narcotic pain medication. It is very important to give this medication on time and every time. For the first three days, every time you are awake, rotate ice twenty minutes on and twenty minutes off. This will make a world of difference.

6. Set an alarm for the middle of the night and give your beloved her pain medication then as well. I had thought that obviously my wife needed her rest and I could just let her sleep until she woke on her own. The problem is that what wakes her is pain, and it usually takes almost two hours to get her pain down to a tolerable level if we deviate from the prescribed schedule.

7. Doctors are not prescribing real pain medication that much anymore, so you may be tempted to skip doses during the early days if she is feeling better. I do not encourage this. It takes twice as pain medication to get a person out of a pain storm as it does to prevent the storm from happening.

8. Here are a few things you should know about post-surgical pain. It is always worse at night than during the day. It peaks the evening of the second day you come home from the hospital. Coincidentally, that is the time when most of us expect to feel better. So this huge disparity between what we think we should feel and what we actually feel can make a person recovering feel that desperate and hopeless. It helps a lot if you can remind her that this is the worst it will ever get.

9. I hope that you do not reach a place of un-managed pain, but if you do, here are some tricks that I have learned for helping a person get through the worst part of a pain storm. What you want to do is temporarily flood her nerves with other novel sensations that make it harder for her brain to record all of the pain signals. You have to change the sensation at least every twenty seconds for it to have any impact.

10. My wife usually has surgery on her lower legs, and here is the routine that I use if she hits a pain storm: I squeeze spots higher on her leg until I hit the same nerve that is screaming further below. You know you have found the spot when for about five seconds she experiences less pain. On that spot, I alternate between a firm grip, running the tines of a comb or a fork in swirls and light slapping (the latter was at her insistence.) Occasionally, I will mix in a few seconds of ice if one of those has lost its edge. This is rather exhausting, since you must change every 10 to 20 seconds. But it can help bridge the time between the onset of severe pain and pain medication kicking in.

11. Encourage her to make whatever sound she needs to make or approximate that breathing women are supposed to do in childbirth. Anything to keep her from holding her breath. When she holds her breath, her body tightens in on itself and that increases pain over the long run.

backpain12. Above all, don’t be shy about calling her doctor. And be willing to do the talking. Many patients are anxious telling their doctors about their pain and will suffer rather than pick up the phone.

13. Control access to your wife based on your wife’s wishes, and especially her level of introversion or extroversion. My best friend’s wife is a social butterfly. So when she recently had a mastectomy, she wanted everyone there. When my wife is in pain, she doesn’t even want her own mother in the room. She wants me, a firmly closed door and darkened room. My job is to not allow her to guilt herself into allowing visitors when she is not up to it. Here is the tricky thing: If you are new to the relationship or if you haven’t been that close lately, your wife may want someone else’s care. It sucks, but suck it up and be there for her in whatever way she will allow.

There is nothing that makes me feel as helpless as watching my wife suffer. I would far rather just absorb the pain myself.

But I have discovered that while going away physically or emotionally may be less painful for me, it is selfish and actually adds to my wife’s suffering. Being strong for her does not mean hiding my feelings. In fact, my tears of frustration and pain often give her validation or permission to express her own emotions. All that being a husband and a good man requires that I stay by her side in body, mind and heart and that I do what is within my power to ease her pain, offer her comfort and support her.

 

 

Pete Beisner is a father, husband and veteran who works in the field of information technology. He has a bachelor’s degree, two master’s degrees and hates writing.

 

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Ed: Kate Bartolotta

 

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10 Responses to “23 Tips for Supporting a Partner with Chronic Pain. ~ Pete Beisner”

  1. I am a woman with chronic pain. My mom is. Her mother was too. I have watched, for 30 years as one of our three husbands or another wiped a colostomy bag, positioned a foot on a wheel chair, cheered a step with a walker, slept in a hospital bed, carried lists of medications and medical information, fixed a bad perm, straightened crooked lipstick, balanced ah unsteady hand, argued with doctors, made emergent trips in all hours and weathers, and worst of all, sat speechless and helpless as we vomit and shake and cry and writhe in our skin. I have known three men who could have written this list besides you. That makes you four on a very short, and honorable list.

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  3. Chris PM says:

    Thank you for this! I am going to forward it on to my husband! :)

  4. Stacey says:

    This works for wives of husbands in chronic pain, too.
    Well done- although I'd be more comfortable with gender-neutral language, although I understand you are speaking from your own experience.
    Thank you.

  5. Xerxes says:

    Staying on top of the pain is very important – absolutely agree, that is why pain meds were prescribed. I hear what you are saying about being there. There aren't many of us who actually have the balls to stick it out. Still, I must emphasize to caregivers that you must give yourselves periodic breaks. You are no good to your loved one or yourself if can't keep it together, and you must take care of yourself as well.

  6. Kellie says:

    I just wanted to thank you so much for writing this article. As someone who struggles with severe chronic pain, and at a young age (26) this article said everything I wish I had the words to say to my loved ones, so I will definitely be passing this on. The world needs more men like you. So many would fold at such struggles, but going through these struggles is just what makes your relationship so much more solid. I am so lucky to have one of the few great men by my side as well.

  7. gavin bailey says:

    i.m a male of 37 who has been in constant chronic pain for the last 7 years, I have a daughter who is 9 and I live wih her and my carer, lover, daughters mother, she is an amazing women who puts up with all my whinging and is there when i'm writhing in agony recently we moved into a bungalow because I simply can't get up stairs, I can not begin to describe the guilt I feel for making them both move, so has anyone any ideas how I can say thankyou to these 2 amazing ppl in my life that without I really don;t know how I wood cope, I have very limited funds because of benifits but just saying thankyou to them doen't seem adequate, they know how much I love them both as i tell them every day so any ideas will be greatly appreciated

  8. Janna says:

    I have participated in my husband’s chronic pain for over 10 years. Words cannot express how difficult it is and we who walk this journey need lots of support. This is an excellent article and I will share it with some of my friends in my same situation where our significant other is of the other sex than the author’s. The experience is the same. Thank you for writing and sharing this article.

  9. Alicia says:

    I have been in chronic pain for 5 years.

    Ive had a lot of procedures and surgeries without any support.

    It is so nice hearing a husband that cares for his wife the way you do, instead of causing more problems and severe stress for the spouse in pain.

    I hope this has found all in the best of spirits,

    Alicia

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