Living with someone living with chronic pain

Miscellaneous and Personal Stuff I Must Share
1

Ivylad has a fucked up back. He’s had cortisone shots, a laminectomy, a spinal fusion, and a morphine pump installed. He’s had a procedure to scrape away scar tissue from his nerves. It didn’t help much.

He’s facing another surgery, this one in his neck. He’s somehow got it in his head he won’t survive this surgery. It’s been five years since his accident, and the pain has gotten worse. His leg gives out on him and he falls, sometimes hitting his head. His hand shakes uncontrollably at times. He’s lost the sensation of a full bladder, except when it’s (almost) too late.

He’s 41. He needs a walker to get around. We have a permanent handicapped sticker for the car.

This is a man who played football in high school. He used to lift weights. He used to like to dance (although the man, bless his heart, has no sense of rhythm.) He could work on cars or fix the plumbing. Now, he has to leave his sneakers tied because he can’t lean over to tie his laces.

As you can imagine, such constant pain can be very debilitating, both physically and emotionally, and I don’t know how to help him. If I could wave a wand and take away his pain I would have done it already.

Today was a very bad day. I feel so helpless in the face of his pain. I searched Google for message boards dealing with chronic pain, and I left a message for his doctor.

I wish I could help him, and I don’t know what to do.

2

Aw, Ivylass, I’m so sorry. I’ll keep you guys in my thoughts.

3

Wish I could get a magic wand for you, dear. You and Ivylad are in my thoughts.

4

Wow, if I had a dollar for every time I said that about MY husband…!

My husband was born with spina bifida and has chronic pain, too. Has had it all his life, to one degree or another.

Please feel free to e-mail me. We can prop each other up in private, because, frankly, I don’t feel like discussing all the ramifications of chronic pain and disability in public.

5

I’ve got some extra T-shirts if you want 'em. I don’t know how many times, over the past ten years, I have walked outside, away from the house and into the woods and screamed at the elements: “Give me my wife back!”
I can tell you that hasn’t produced any positive results.

Good days, bad days and going half mad days…

It seems that there’s nothing that can be done. Every New Medicine produces little good and horrible side effects. On and on it goes!!!

Do take care of yourself. The only thing I’ve found in this whole situation that helps, only helps me, and perhaps helps her as a secondary effect.
Three or four times a year, I’ll have some family or close friends visit for a few days, I’ll make sure the bills are current and the freezer’s full, and I go walkabout. Maybe alone, maybe with a buddy or a small group of friends.
I’ll go see some new places, hear a good band, have a few drinks, a few laughs, a few dances and come back renewed and able to continue to deal with the situation.

Whatever you like to do, try to schedule a little time for yourself; give yourself a short break, so you can continue to provide the support and help that you have to provide.

Best wishes.

6

I’m very sorry that you and your sweetie have to go through this. You’ve talked about it before and I can’t even imagine what it must be like. John Carter’s advice on taking a break when you can sounds wise.

I’d like to ask a question, and if you don’t care to answer it, that’s fine and we’ll pretend I didn’t ask: What was the nature of his accident?

Best wishes to you both.

7

I had back pain very briefly; I don’t wish it on anyone. Not only is it taxing on everyone in the family, it’s difficult to face all the skepticism about just how bad it really is.

Here’s a link for the American Pain Foundation; they have an online support community. This one is to the Nat’l Institute of Neurological Disorders; lots of links and resources there. I hope he gets some relief soon.

8

As the disabled chronic pain partner in my marriage, I thank all of you who stick with your mates through the hard times. Blessings on all of you.

9

Keeping you all in my thoughts. I’m looking at a possibly similar situation in my own life, and I have to say it’s not a terribly comfortable subject so far. I still find it hard to overcome the skepticism myself. :frowning:

I wish I could be more helpful. I want a magic wand too. :frowning:

10

It was an on-the-job injury. I can’t more detailed because we have legal representation and workers comp is continuing to cover his medical expenses.

He did check out one of the message boards I gave him, and he called me and told me he was posting on it as he spoke. It may be helpful to provide support to others in his condition as well as receive support.

Maureen, it doesn’t look like he will get any relief. This is his life. I’ve sent him the links.

Check your e-mail, Broomstick. Thanks.

Normal stuff can be fixed. The roof can be repaired, the children’s performance in school can be dealt with, the dog can be spayed. But chronic pain can’t be fixed. It must be lived with.

11

I’m sorry, I didn’t mean to ignore everyone else who posted. I thank everyone who took the time to share your prayers and thoughts.

Take care of your back, folks. It’s not an easy piece of machinery to fix.

12

I’m so sorry you’re going through this, it’s so hard to watch someone you love in pain.

I can relate to your post as I caregive for my Mother in Law who was left paralysed and with Neuropathy after a devasting stroke. She is rarely comfortable. Every touch reads as pain in her brain the poor thing.

I second the ‘take some time for self’, that’s good advice to be sure. I’m sure all the people in this thread have had ‘balance’ preached to them. I’m five years in and just when I think I’ve found some it slips away.

Two things that I have found helpful waging a similar battle at my home, maybe they can help you.

Not that it will decrease anyone’s pain, and not to be dismissive of that pain, I have found it helpful to remind my MIL that I feel she is a doing a wonderful job of tolerating all of her trials. It’s seems most important to do this when the reverse is true, for some reason. I tell her I admire her for it, and that it impresses me, all the while acknowledging you are aware of how much pain it must be.

Secondly, I found it hard not to take her complaining to heart, to feel we weren’t doing enough or weren’t doing it well enough. I used to tell her, ‘it will only be a few more minutes till we’re done, there is no other way for us to do this, blah, blah, blah’ all explanations. Day after day the same. Then one day I took a different route, I took her hand looked her in the eye and said, “I know that you understand that we are doing our very best, that it’s all we have to give, etc.” Of course she did understand, but just as quickly it would slip from her brain and we’d be back where we started. But I discovered that the affirmation, “We’re doing our very best”, was incredibly restorative for us. Something about saying it out loud. I’m sure it benefits MIL as well, but the real surprise was the effect it had on the two of us. Find a place to work it in to your daily conversation that both of you are doing your very best, out loud. It’s very restorative for both parties.

I can’t claim to understand why these things seem to help us, but they do. We just stumbled into them both. I sure hope it helps.

Keep up the good fight, sending you a double dose of lovingkindness this morning.

13

I have worked (as a psychologist) with chronic pain patients. I highly recommend the book Mananging Pain Before It Manages You. It is a paperback, so it isn’t expensive and has lots of good information about coping with pain.

My heart goes out to you, your husband, and the others in this thread who are coping with pain or with a loved one in pain. Having seen it close up, I have tons of admiration for you all.

14

I’m sorry you’re dealing with this, ivylass. It must be very hard.
You’ll be in my thoughts - hang in there, sweetie.

You have my email if you ever want to talk.

15

I think part of his problem is how he was raised. His father, RIP, was a big man, a manly man, no crying, no whining, suck it up, that type of thing. So, Ivylad feels like he’s less than a man because he’s weak and can’t fight the pain. He’s sick and tired of feeling sick and tired, you know?

Again, I appreciate everyone’s help. I’m off to look for that book, Brynda.