The Ministry of Lisa Copen

Lisa Copen, Founder of Rest Ministries which serves the chronically ill, shares about mothering, illness, ministry and more.

Archive for diseases and conditions

Communicating with Your Spouse About Your Chronic Pain

This article is free to reprint. Keep everything “as is” and include the resource “box” at the end that refers back to Rest Ministries. Thank you! ~Lisa

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Communicating with Your Spouse About Your Chronic Pain

couple-cuddle“I feel like there are thumb tacks in my bed!” I say to my husband as he crawls into the other side of our bed. “I know there is nothing there, but I just feel bruised all over.”

“I’m sorry,” he offers with a sympathetic voice, but there is little else he can do.

“Actually, I sort of feel nauseous too,” I share. “It’s probably just the drugs. I wonder if I should eat something or if that would make it worse. I’m sure it will pass if I can just get to sleep.” I look over and he is already starting to snore.

For many of us, our spouse is our best friend. If our relationship is good, we want to share our feelings with them. Even if our relationship is hurting, we feel that by explaining our pain, our spouse may sympathize and be more loving toward us.

Although we don’t want to burden them by constantly sharing about our aches and pains, when we are hurting there is a desire to be heard and have our feelings validated. By talking out loud about what we are feeling, it somehow makes the pain real. It’s no longer “all in our head.”

Galatians 6:2 tells us “Carry each others burdens, and in this way you will fulfill the law of Christ.” At some point we must carry these burdens to the Lord, as well as a close friend, rather than just count on our spouse to carry the burden of listening about each ache.

Although your spouse may not be suffering from a physical ailment, there are still many losses that he is grieving. For example, it is an emotional thing to watch someone you love be in pain and not be able to fix it. He may be suffering as he watches you lose the ability to do things you love. He likely misses the couple outings you once took together when you could do physically active events, whether it was skiing, or just taking long walks together on the beach. He may be frustrated that even his hugs can cause you to wince. Counselors have found that there are three major areas where marriages suffer: money, time and physical intimacy.

Your marriage may be having difficulties in all three, specifically because of the role chronic illness has taken on within your marriage. Is it possible to “share our burdens” with our spouse without overburdening him and making him want to run the other way every time we open our mouth to share another symptom of our ailments?

Be a team with your spouse

It’s you and your spouse “up against” the illness. Although you may feel like your spouse is merely a spectator, intentionally make him a part of your team fighting the battle of pain, in whatever way he is most comfortable.

Ask your spouse if you can share some information about your illness so he has a better idea of what you are going through, but don’t overwhelm him. If he is willing to attend a few doctors appointments with you, let him, and give him time to ask the doctor his own questions. For example, giving him a brochure may be better than handing him a 250-page book. If he listens to podcasts, find some that would be beneficial for him to listen to. Acknowledge that there may be role or responsibility shifts in the marriage due to the illness. Be open about what you are struggling with and where you need help. For example, if you can no longer scrub that bathroom but, let him know before the grime gets out of hand.

Connie Kennemer lives with multiple sclerosis and she candidly shares that struggle that it can be to find the right balance and word. “I am not as mobile as I used to be and I often ask more of my husband such as ‘Can you work at home this afternoon?’ or ‘Why do you have to go to another meeting?’ How much should he accommodate me because my body is changing? He doesn’t always know when to stop and encourage me to try things myself. This is a constant challenge.”

Be reasonable in your expectations

We often marry someone who has our opposite personality style. If you need to read every article about your illness, but your spouse doesn’t, it may simply be because your spouse has a more laissez faire attitude, not because he doesn’t care. His response to a crisis may appear to be nonchalant on the outside, but it doesn’t mean he is not worried and concerned about you.

On the flip side, maybe you are emotionally overwhelmed the diagnosis and you need to just sit back and take it all in before you start doing research, while your spouse is spending hours at the computer finding out everything he can on the latest treatments, medications, and signing you up for the healing service at church. He may accuse you of being in denial about it all, since you aren’t showing as much passion as he is in finding out more about your illness. An excellent book recommend in helping you understand your communication styles better is “Men are Like Waffles, Women are Like Spaghetti” by Bill and Pam Farrell.

Have information about your illness available for when he is ready

If you are having a conversation and you want to explain more about how you are feeling, or details about the illness itself, you may want to have books with sticky notes on the pages you think he’s find most helpful. Or bookmark pages you can read together and then discuss. Connie says, “After ten years of living with MS, I am past the whiney stage, but Rex sometimes holds back; that’s when I need to ask him more questions about his feelings.”

Creatively keep him informed about the embarrassing parts of the illness

If your illness is going to cause you to be in the bathroom during eighty percent of the events you attend together, you need to let your spouse know that this is part of the disease. Health organizations have brochures on symptoms. You can say, “I’m dealing with some personal matters of this illness right now; I don’t really want to talk about them yet, but they’re in this brochure if you’re wondering.” Avoid sharing every detail if you can.

Look for other ways to vent besides always dumping on your spouse

“I realized that I held onto all of my frustrations of pain during the day and then ‘threw’ them at my husband as he came in the door,” shares Cheryl, who lives with chronic fatigue syndrome. “My actions set the tone for our entire evening and even though I felt better, he felt worse, and it lasted all night. He was beginning to dread coming home at night.”

Cheryl began to put aside the last two hours of her day to spend time writing in her journal, praying and doing something she enjoyed that calmed her. “Writing in my journal gave me the chance to express my frustrations, and then prayer really began to minimize the negativity too. My husband quickly noticed a difference and it’s made our relationship so much stronger.”

Find some ways to get involved in your community or a special hobby

What else do you have going on in your life, other than your illness? It’s easy to be overwhelmed with doctor’s appointments and just maintaining our illness, but it can result in a pretty dull life. Even if you have limited energy, do something you’ve always wanted to do that doesn’t have a deadline. Put together memory albums for your grandchildren, clean out just one drawer, find a new craft or hobby, volunteer to be on a prayer chain. Soon you will find that your illness actually is the last thing you want to talk about when you have had such more interesting events in your day.

Conclusion

So. . . How much is too much? It’s different for each person and each marriage relationship. Learn to look at your situation objectively. How many times are you bringing up your illness? How are you benefiting from talking about it more than necessary? Do you need understanding? Validation? Perhaps you need actual physical help with tasks. Ask yourself if talking about your illness could be a way of getting your spouse’s attention, and this seems to be the only thing he responds to? Regardless of whether it is attention, acknowledgment or understanding, how can you get this from God instead? How is it negatively affecting your life or those around you?

And then take a moment to really ask yourself “Is there a better, more creative way that I can create intimacy with my spouse, other than just complaining about each ache and pain? What activities can I still share that could help us grow closer together?”

And then when you want to share more about your pain or illness say a prayer first: “Lord, You know I don’t want to burden anyone else, especially when they cannot fix it. I really need a hug from you right now. I know that my spouse cares about me and wants to encourage me, even when he doesn’t always show it the way I want; please give me the wisdom to know when to ask for help and comfort from him/her and when to come only to You and ask you to fulfill all of my emotional needs.”

For more articles and important support while living with chronic illness or pain visit Rest Ministries so you don’t miss our fresh content and be entered for our monthly giveaway. Lisa Copen is the director of Rest Ministries, author of “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend” and founder of National Invisible chronic illness Awareness Week.

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Health 2.0 Why Twitter Can Help You Identify Causes of Pain

This article is free to reprint on your blog, ezine, web site, etc. Just leave everything “as is” including the resource box at the bottom. Thank you!

textingIf you live with chronic pain or a chronic illness you may have been requested by your physician to keep a diary of when you are feeling your best and worst. It may also be recommended that you write down your activities, your sleep patterns, and even your diet.

If you have attempted to take this on and do it thoroughly, you know that it can be an overwhelming feeling to keep track of all of your activities and still maintain a sense of normal life. It can be extremely helpful, however, to you and your medical team, to have a written record of your activities, diet, etc. to help discover what is it is causing you the greatest pain. Was that extreme flare caused by a minor food allergy, the weather conditions, or that you were up all night with friends?

It is ironic while those of us who live with chronic pain they find it challenging to write down what we are doing all of the time, what we are eating, and how we are medicating ourselves, millions of people are on the social network Twitter are recording what they ate for breakfast, the fact that they have a cold, or when they’re up working at 2:30 a.m. and on the computer. . . and they consider it fun!

Now is the time for those of us who have a chronic illness to let Twitter worked for us! This social networking tool has been used to help people with dieting, exercise, and even encouragement to stop smoking. But it may best benefit those of us with illness, who need to record enough of our life to figure out what is causing an increase in pain.

Here are 5 steps to use Twitter to understand the causes your pain:

[1] Create an account at Twitter just for your chronic pain logs. If you already have a Twitter account, make a new one, and let it remain private. If you look under “settings” you will see the option to make your account private, meaning that you will have to approve any followers before anyone can see your Twitter account. Since this is private medical information, we recommend not approving anyone. If you are already Twittering this can seem a bit strange because you typically want to increase the number of followers.

[2] You are now ready to start writing your posts. You cannot write more than 140 characters, however, this keeps it a simple task and not too overwhelming. Feel free to use it in any way necessary, for example, submitting more than one post to describe a special circumstance. You can send posts from your cell phone, not just from the computer, so set up this option in your account to make the most of it.

[3] If you are new to Twitter and don’t know where to start, it’s easy. Just post about anything you want in the box and click submit. You may want to began with events that are not part of your typical day and how your body has responded. For example, if you awoke with a lot of inflammation, you may ask yourself if the weather was unusual the night before? Did you stay out late with friends the day previously? Did you change your medication? What did you eat for dinner in the evening last night? Post any information that may be valuable to you or your medical team at any point in the future for your treatment.

[4] Before you go to a doctor’s appointment, log on to your Twitter account and print out the posts if your doctor would like acopy. Highlight any major changes in your patterns of pain.

[5] if you already use Twitter for personal or business use, consider using a service that can post a message to more than one Twitter account simultaneously. This way your regular tweets that include where you are or what you are doing are automatically posted to your pain diary that resides on Twitter as well.

The market for Twitter applications will continue to grow and there is no doubt that’s those considering medical Web 2.0 tools will come up with some fancy (and complicated) ways to record your pain levels. But for now you can have a thorough log of your chronic illness and pain levels in just minutes at no cost. You can’t beat that!

Lisa Copen is the founder of Invisible Chronic Illness Awareness Week held each year in Sept and featuring a free 5-day virtual conference w/ 20 seminars w/ 20 speakers. Follow Invisible Illness Week on Twitter for cool prizes and info. Blog about invisible illness on your site, be a featured guest blogger, meet others, read articles and lots more. Make a impact today!