The worry of having a spouse in constant pain

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I turned to my husband and read aloud:

“Mostly, however, [they] are just immensely lazy. They spend up to twenty hours a day asleep, normally emerging to look for food just after sunset. They seldom venture more than 150 feet if they can possibly help it. This may be part of a survival policy for mortality rates rocket whenever they are compelled to migrate.” (Bill Bryson, “At Home“, page 287) *

And he said exactly what I was thinking, “It’s me!”

Yes. It is.

Rage Against the Minivan has an ongoing series entitled, “What I want you to know“. Last summer she had one that really hit home, “The Loneliness of a Having a Spouse with a Chronic Health Disability“. I’ve wanted to write a similar post since reading it (and maybe I will submit this to her as a guest post).

My husband is 38 years old and wishes he could die. (Read here for multiple posts about his pain)

We can’t pinpoint exactly when the groin pain started, but it was around 11 years ago. He had surgery, which helped for a while, and then things got worse. The doctor found a hernia so he had surgery again, which helped. Until it didn’t. He had an electronic device implanted into his spine. But it didn’t help. He went from not being able to go on hikes, to needing a walking stick, to the cane, then the wheelchair, now even the wheelchair is too painful to be in for more than 30 minutes.

The cluster headaches began about 12 years ago. Something you have to understand about cluster headaches is that un-medicated they are more painful than childbirth. On heavy, constant medication, they are reduced to the level of a bad migraine. Because my husband is now a “chronic”,  he deals with these 6-12 hours of every. single. day.

So I worry. Every day I worry.

Will he be able to sleep today at all? Will he sleep all day and not get up when the kids come home from school?

Will he wake up at all or will the pain and medication finally overcome him? Will he give up and end it?

Can he safely drive the kids to school? How much longer can he drive?

How many more Christmases will he miss the kids opening gifts because he can’t get out of bed?

How many more “family vacations” will he miss because he cannot travel?

Will the child-like faith he once had return? Will he be jaded forever?

Should we move hundreds of miles to be closer to family (we have none for 500 miles)? Should we stay and keep the doctors and friends that we have?

Will I make enough money to cover the bills? Will he get the disability that he applied for long ago?

If something happens to me, who will take care not only of my kids, but also my husband?

 

So many worries on my mind. Almost all the time. Sometimes the only relief I have from family worries is when I am at work, but then no one is home to help care for him or the kids. It is a constant balance of caring for my husband, caring for my kids, and trying to care for myself. And it hard. And I worry. A lot.

*And the creature from Bryson’s book that was so similar to my husband? The rat. He has become like a rat.

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15 Comments

  1. I have seen this with friends and my son’s girlfriends father is suffering with debilitating MS–there is no doubt this a tremendous burden for both of you. I wish you luck and grace as you navigate this path.

  2. I don’t think there are words that I can give to sympathize, empathize, reassure, or comfort. But I did want you to know that I’m thinking of you, your family, and your journey. Hugs!

    Carrie

  3. Sending a virtual hug your way. When I see struggles such as yours all around me, I’m amazed at the strength of the caregivers; but even the strongest need support. Thank you for sharing.

  4. We appreciate all that you give and give and give… 🙂

  5. Wish I could give you some advise, but I’m sure you have heard it all. has anything holistic–acupuncture, etc been helpful?….I will pray for you and your family. You are amazingly strong. Not sure I could be as resilient. The New Year will be better!

  6. In my thoughts and prayers! Heart-wrenching. Sending prayers for strength and healing your way. Best wishes to all in the New Year.

  7. Your family and your students are lucky to have you! Praying for strength, comfort, and healing.

  8. Anonymous says:

    Praying for you and your family!

  9. I don’t know how you do it all. Your strength, perseverence, and yep–even your sense of humor through it all–amaze me. Hugs!

  10. Hi,

    I just found your blog this morning–I’m considering pursuing a career as an SLP and am trying to read eveything I can find from people who are in the trenches to help me get a better idea of what it would really like before committing myself. I’m definitely very interested, but I’m a 40 year old career-changing mom of 5 and want to do my homework as well as possible.

    That’s not what I wanted to mention here, though. I haven’t read much of the blog yet, of course, because I just found you, but I have a friend who also suffers from severe chronic pain (hers is due to gastroparesis which developed after a partial liver donation). She went to a 3-week pain management program at the Mayo Clinic a year or two ago that was very hard but really life-changing for her. I apologize if you’ve already tried something like this or ruled it out for some reason, but I wanted to mention it just in case it might be helpful to your husband. It sounds excruciating to endure what he does, and I can only imagine how hard that is for you and your kids, too.

    Prayers to all of you, and thanks for your writing. I look forward to reading more and learning from the things you share.

  11. My husband is also always in pain. 2 artificial hips, 1 artificial shoulder, chronic nerve pain in his neck/shoulder…everything hurts, all the time. He takes pain pills every day just to function, and still hurts, but has to go to work and perform as a “normal human being.” And now on top of that, as an only child, he/we are now having to care for his Alzheimerish mother, besides working (he owns a small tv station, I teach school all day and then host a talk show on tv everyday).
    I wish there was a way to just erase all the pain… for all of us. (Cuz there is no empathy from him that I also deal with daily pain as well in my feet.) So… we trudge on. You are not alone!
    Robin Bobo recently posted…Southern Belle-ishMy Profile

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