Despite two back surgeries (a laminectomy and a fusion) he has permanent, inoperable nerve damage. This is why his leg gives out and why he has a burning sensation.
He uses a walker to get around.
He’s 39 years old.
He can’t bend over. I have to clip his toenails. He can’t pick up something he dropped. He can’t empty the dishwasher or empty the garbage.
He’s a candidate for a morphine pump, which will help with the pain, but not the nerve damage.
He won’t be able to play football with the kids.
He can’t take the dog for a walk.
Frequently he’s unable to do anything, so any errands that need doing or phone calls made, it’s up to me.
So, I’m sitting here at work, trying not to cry, because it’s very hard to work all day and then have to go home and do housework because Ivylad is incapable. Then I feel guilty at being so selfish, because Ivylad is in permanent agony that needs a pain patch (twice the dosage they give cancer patients) to manage.
So, be grateful you can walk and run and bend over. Be grateful your SO can empty the dishwasher while you vacuum. Be grateful the highlight of your day isn’t being happy you made it from the bed to the living room sofa.
I’m so sorry. I can’t imagine what the two of you must be going through. Can I urge you to take joy in what he can do, maybe petting the dog, if not walking it? I’ll certainly offer you a shoulder to cry on and strength. And love. That’s important.
This weekend I visited my mother-in-law at her (palatial) retirement community in Lancaster, PA.
We went to dinner.
Coming back we parked the car and walked to the front door of the condo building. Lying in the vestible was an elderly man. He was trying to get up and couldn’t.
I rushed forward and asked if I could help him. He said, “No thanks, I’ll be up in a jiffy.” But he couldn’t.
My MIL was a nurse for what she claims is two or three eons prior to her retirement. Ran into the lounge and got a chair and placed it near him. He grabbed it but couldn’t pull himself up.
The whole time I’m sitting thinking that maybe I should just grab him and pull him up. But I also know what a thin reed any man’s pride is. If he explicitly turned down the help I couldn’t just force it. I just couldn’t.
Meanwhile my wife is pulling both doors free to give him room to operate and my little girl is watching (she’s two).
His line, “I hope I’m not scaring the baby.”
After positioning the chair directly behind him I stood there waiting. He eventually said he’d take my hand and pull himself up that way. I did it and he did it. He sat in the chair for a second and then got up and walked off.
Apparently he’s got a muscle disorder that makes it difficult for him to go for horizontal to vertical. Once he’s up he’s fine.
But all I can say is thank God I’m healthy and active.
Ivylass, I’m so sorry, for both of you. Your dear SO for his pain and struggle, and you for having to handle so many things single-handedly. I know it’s very, very hard. With my husband gone, I am in sole charge of everything here, and it can be exhausting.
Are you able to get any help with household chores, etc? I don’t know what your financial situation is, of course, but if he is eligible for benefits, maybe you can get some household help built into the package? If you can get even a couple of hours of help each week, it could make a big difference.
I don’t have any household help, but my older boys have really begun to show some responsibility around home, and it’s made a huge difference.
I wish I were closer, I’d pop in a couple of times a week and do your dishes, at least. Barring that, I will send you good thoughts each time I see your name on the boards, okay? Please take care of YOU first–you will need to be healthy for your family, and sometimes that means putting yourself as No. 1.
Best,
karol
Ya know, I worked with a woman who had permanent back pain. She ended up getting this zapper thing installed in her back. With a remote control thingy, she could zap electricity to the problem and the pain would be gone. Jerry Lewis is doing this also. He credits it with saving his life. You might want to look into it. Your husband is very young to be so incapacitated. Good luck.
He has an outer one of those, but it doesn’t always work. It depends on the pain. There’s parts of his back where it’s completely numb, and other parts where you give it the merest brush with your finger it feels like a mule kick.
Thanks for your thoughts, gang. I have been considering maid help. I was also considering a part time job to get the kids into private school, but after the weekend, where Ivylad slept all day on Sunday (the meds knocked him out) I realized the kids need me at home for supervision.
I know someone who has a same thing Kalhoun is talking about for nerve damage in the spine. It doesn’t make the pain go away completely but he was able to lower his dosages of pain medication quite a bit.
I am so sorry for what you two are having to go through ivylass. Please remember that if you don’t take care of yourself you aren’t going to be able to take care of anyone else for long either.
Ya know, I worked with a woman who had permanent back pain. She ended up getting this zapper thing installed in her back. With a remote control thingy, she could zap electricity to the problem and the pain would be gone. Jerry Lewis is doing this also. He credits it with saving his life. You might want to look into it. Your husband is very young to be so incapacitated. Good luck.
I was very sorry to read this, Ivylass. You truly have been given a tough row to hoe, to put it mildly. Maybe you should check into what Kalhoun is talking about. It might give you some hope, and it sounds like you could really use that.
Alternatively, is it possible that Ivylad could have the damaged nerves severed from his nervous system? It sounds like he would be no more immobile than he is already, but he would be able to function without constant pain.
I’m as concerned for Ivylad. What a hell he must live in. What caused his nerve damage?
Want to add one more thing after reading your post ivylass. My friend who got one of the internal zappers (I wish I knew what it was called) had an external one for years first too. It was not nearly as effective as the internal one. The internal one was placed exactly where it needed to go. In fact he had to have a second surgery to adjust it when it wasn’t placed exactly right the first time.
It wasn’t magical but it did lower the pain and allow him to take less pain medication.
That’s what the morphine pump is supposed to do…deliver pain medication directly to the spinal column. This supposedly will reduce his medication to 1/300th of what he’s taking now.
Lizard asked
It happened at work. He was a diesel mechanic and twisted and fell while working on a bus engine. This happened in October 2000.
Having lived through a lifetime of back troubles including a near total spinal fusion, I offer my most sincere sympathy to your husband and to you. I am so very sorry he is going through this. If you want to talk (or if he does), please feel free to e-mail me. suzette100@yahoo.com
I am fortunately not in the position that Ivylad is, but as a 32 year old who has experienced signifigant mobility issues and disability due to back problems, I can relate and will gladly lend an ear anytime.
Ivylass, take Ivylad to a pain clinic or pain control specialist if you haven’t already done so. These folks can sometimes do wonders. It’s not just a matter of doping him up better but also finding ways for him to function despite pain. He deserves to have everything possible done to make his situation better.
Maybe there isn’t anything more to be done, but you want to be sure about that. You don’t go to a dermatologist for a kidney stone, and likewise a orthopedic surgeon isn’t always the best person for control of severe chronic pain.
Meanwhile, don’t forget to take care of YOU. You can’t help Ivylad if you’re stressed out and exhausted. It’s time to ask for help, and not just for the housework. If you can afford a maid or housekeeping help that’s great. If you can’t – ask your friends, your relatives, whoever you have around you. If you can find a support group on the Internet do so - or if you can find one in real life. Take some time out during the week FOR YOU. If that means hiring a sitter to watch the kids because Ivylad can’t so you can get away from all this for an hour or two then do it. It’s not being selfish, it’s a matter of tending to your needs, too Don’t become a martyr (which is so easy to do, given society pressures on women with disabled husbands). I’m concerned about YOU as well as Ivylad.
I want to thank all of you for your support. It really means a lot. Ivylad is depressed at this news (to be expected, how would you like to be told at 39 years old that you will have to use a walker for the rest of your life) but I’ve told him we must keep our options open. Who knows what may happen after the morphine pump is put in…with the decrease in pain, he may be able to participate in physical therapy and get some more strength in his legs and back. (Losing about 30 pounds too wouldn’t hurt.)
I’m going to talk to him about getting some housework help in once or twice a week…we’ll see if our finances can swing that.