Living with my wife's chronic pain
74I was inspired to write this by Jen's Solitude's post about living with MS.
I'll share the comment I left there:
Chronic illnesses are very difficult. Good for you that you can cope and can still laugh.
My wife suffers constant pain from degenerative joint disease, scoliosis and ruptured disks. As if she didn't have enough to bear, she has GERD and developed restless leg syndrome!
I sometimes feel guilty being healthy and pain free. I know it is silly, but sometimes I just put my hands on her while she sleeps and try to will her pain to myself; I want to take it from her, but of course I cannot. Magical thinking doesn't work, however much I might wish that it did.
I hate my wife's pain. I have a friend whose wife suffers from severe fibromyalgia and has had breast cancer. Like me, he's not religious, but he tells me that sometimes he finds himself saying "Dear God, #%^# you!". Being helpless against the pain of someone you love is truly maddening.
My wife is sleeping as I write this. I should put sleeping in quotes, because she doesn't really sleep well. She moans as the pain reaches into her dreams. She cries out often as some specially sharp bite hits her.
This is probably the silliest thing you have ever heard, but I love hearing her snore. For me, that's the sweetest music she can make because I know it means she is deep down, away from the wretched pain for a few seconds.
But that's all it is, just a few seconds. Then her face, the face I love, the face that melts my heart, that face, the face that should be smiling at happy dreams, that face winces and I know the pain has found her again.
When she does wake up, she will call to me. Sometimes she needs ice packs. Our freezer is full of those therapeutic gel packs. What a silly thing: sometimes I have to pack my wife in ice.
Only a few people know how much she suffers. To the outside world, smiling, happy Linda is laughing with them, always joking, teasing. She even dances sometimes, though she and I both know she will pay dearly for that. I hate her pain.
People ask what she "takes" for the pain. I have to bite my tongue because I want to scream "NOTHING HELPS HER. IT'S NOT A STUPID HEADACHE, SHE DIDN'T TWIST HER ANKLE, IT IS 24 BY 7 PAIN, PAIN, YEAR AFTER YEAR AFTER HORRIBLE YEAR!".
But of course I don't. They wouldn't understand. She has taken pain drugs, but all she uses now is Gabapentin to try to help her sleep. The pain drugs don't help enough to offset their side effects and health risks, so she just does not use them. They don't really work anyway, she says. The pain finds its way around them.
I think she is waking up. I'll go see her. I can't really hug her good morning, because even the most gentle embrace hurts her some. I just try to fold my arms around her without any pressure.
We'll be going to the gym today. That's another thing people don't understand. She NEEDS to try to keep moving. She NEEDS muscle to try to protect her failing joints. Yes, it hurts her, but she refuses to give in. She's not a quitter.
She is a fighter. I hate her pain.
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No, I'm the lucky one. Really.
But she will never get better unless some miracle cure comes from genetic research and that is far beyond unlikely.
This is such a touching hub. I am sorry for your wife's pain and for the pain it causes you. I know its probably not going to get better anytime soon, but she sounds like such a fighter. Thank you for sharing this story!
Thank you for your empathy. I love her so much, it is so hard to see her hurting and especially as it never stops and I know it never will.
What an amazing couple you are, a team in every sense of the word. I have rarely if ever been in pain 24/7. I can't even imagine how she deals with it and how you deal with having to watch her go through it. I know you both do it because you have no choice, but still it is amazing to read about.
I remember the first time my husband heard me groan while attempting to fall asleep during a painful nerve attack. I remember the look of helplessness in his eyes and how bad I felt that he seemed in more pain than I was in. Like you, he rushes to my aid when I can't think clearly enough to figure out how to get my pain to go away.
We, the chronically ill would be lost without caregivers like you and my husband. I know you don't need to be told this, but you are one of the best, keep up the good work and loving support, it truly makes all the difference in our daily struggles!
I wish there were something helpful to say here. As you know, there really isn't. I do think it's good for people to talk about living in chronic pain, though, because I think far more than we tend to realize live with it. My mother lived with Rheumatoid Arthritis. Now my kids' father lives with it. I just keep hoping it doesn't get any worse too fast, because as it is has stopped him from getting a good night's sleep for a long time now (and he works during the business week, so he lives with exhaustion on top of everything else). Like your wife, he's reluctant to take medication for it because of the potential problems medication that powerful can cause.
Pcunix-we've written before about the commonalities between your wife and me, but after reading this hub, I know she has a far harder time of it than I.
I am so sorry for you both having to endure this terrible pain. I know that it is shared; I see the look on Anthony's face when I take a wrong step. He knows.
Please send her my well wishes and take care of yourself, too.
Thank you.
Chronic pain is relentless and Linda is a very strong person to be living with such pain and saying no to pain killers. I can't say I blame her. When my two ruptured discs play up I opt for acupuncture which relieves the pain I'm in. I hope one day Linda finds something to ease her pain, which in turn will ease yours, Pcunix. Take care both of you. xx
Read The Mindbody Prescription by Dr Sarno. Nobody needs to put up with long term pain.
I'm sorry - Joint degeneration can't be fixed by wishing it away.
pcunix- I know we don't agree on much politically (via themanwithnopants comment section) so I decided to actually visit you in your hub land. This hub is probabaly the most we have in common, well, I have in common with your wife. Although I have Rheumatoid Arthritis and pain, whew, pain seems like such a plain word to describe the intensity it is to someone with a chronic illness. I never imagined my life at age 34to filled with more pain than most 90 yr olds have experienced. I was diagnosed last year and within 2 months of that my joints and body were so swollen I could no longer dress myself or drive, thankfully my husband helped, but I finally started taking a steroid medication. I also have a 3yr old to take care of during the day. Sleep, God, that was the worst. Sometimes my pillow hurt or the blanket. I do feel for your wife and as you know (by my political debates with you)I'm a fighter too. Your wife is an inspiration and you are doing the best thing for her- realizing that when she dances, as you were saying, or gives more of herself, she will pay for it later. So often people don't realize how much of us we are sacrificing to just do some ordinary things for them or with them.
I am sorry for your pain - it is beyond most folks understanding.
Your wife might like this story (The Spoon Theory)- it is about a woman with lupus, but very similar to what your wife and I go through. http://www.butyoudontlooksick.com/articles/written
Thank you - I think she will indeed.
Truly INSPIRATIONAL ... it is so touching to feel the love you have for your wife through your words.
Thank you Pcunix for sharing a spouse's viewpoint ... it has helped me to better understand why my beloved husband insists that 'he ain't going anywhere' without me as I have questioned him many times over the years as to why he doesn't just leave and live a 'happier' life away from me and my pain-demons.
I'm sure he feels just as I do. She is my friend, my love and my responsibility.
It's hard sometimes. But I'm not going anywhere either :)
To be honest, I am still trying to swallow the burning lump in my throat. As someone with a chronic painful disease, I feel for your wife. And to you I commend you, dealing with someone in pain I could imagine is rough, as lack of a better word. I know some days I do not wish to talk to anyone and I have found myself pushing all close away, to prevent them further pain. I will pray for you both, someday soon maybe we will both have a cure. Until then I hope each day has those precious moments that take the pain away even if just for a spell.
Thank you, kalyan. We are not religious, but I appreciate your kind thoughts.
You and your wife are just like us. I curse God also. I offer to take the pain for a day....sometimes I wonder how can a all loving god put such a wonderful creation of his in so much pain for so long? Is there a god?
Well, we are atheists, so we know there are no gods to curse. My friend is the one who does the cursing, and he knows better also.
I just have to say this all made me cry! My hubby goes though the same thing with me! I have the degenerated joint disease and two herniated disc's, I also suffer from scoliosis! I take no meeds ( hate them) I stay up long nights I do drink beer to help me this is the only thing I have found to help, not good for my health! I have to let you know not sure yet if it is going to work but there is a place close to me in Dallas that I found today that you can look up @ zerospinepain.com I am waiting to talk to them I will let ya all know
Just a FYI I have found another place to maybe help it is called the minimally invasive clinic
18 months ago she was a passenger in an automotive accident. She was banged up pretty badly and her condition is much worse since then.
We have not sued. I'm quite sure that they'd fight on the basis of preexisting conditions and who knows - she might have been this bad now even without the accident.
I can't help feeling anger, though. She is so limited and so unhappy now. She cries often and I just hate it. Money wouldn't change that, and as noted, the accident may not have caused her to get worse, but dammit I feel like she deserves something! I don't mean millions or even tens of thousands, but SOMETHING. Something to bring a little joy back into her life even it is is short-lived.
I have just been diagnosed with degenerative disc and joint disease its mild the doctor says its in my neck. I am taking glucosomine, a steroid pill put on for 2 weeks, inflammatory pill, and a pain pill for at night so i can sleep. My arm and hand tingles all day. I was just wanting to no is there a cure for this or am i doomed for the rest of my life. Im planning to go see a chiropracter this week. I was also told i have arthritus in my neck as well and im only 38. Guess this disease attacks at any age not sure how to deal with all of this before the holidays coming up. So sorry to hear about your wife. If you have any advice for me I would like to hear it Thank you for your story.
I wish I could offer something hopeful, but my wife has just gotten worse and worse. I hope you are more lucky.
I clicked on this because I wanted a glimpse of the other side. I have fibromyalgia and chronic migraines. My spouse is awesome and it does many things to help me out, but I wanted what price he pays for having a spouse like me. My FMS does not bother me much, it flares something awful randomly but normally it is just a baseline pain I get used to. The chronic migraines on the other had are horific and crippling. I am trully thankful to have a spouse like mine, because I know it is not easy.
It does have its light side..
Thursday was a really bad day for her. She had doctor visits and we had to walk too much. We had to fight traffic coming home and then she couldn't get comfortable on the couch. At one point she stood up, frustrated by her inability to sit when she was so tired.
I stood up to hug her gently - almost an "air hug" and, being very tired myself, said "Honey, I wish you were a better person".
We both burst into laughter. Of course I meant I wished she felt better physically. My slip up lightened the mood for both of us.
Pcunix-
Reading your Hub has given me a great sense on how much my wife needs. Thank you for sharing. You are a true inspiration to us on the other side.
Truly the most inspiring story. I too clicked to read how spouses handle disorders. I had a stroke 30 years ago that left me with epilepsy, After learning to do daily things again, the seizures started tearing things we take for granted. 4 shoulder repairs and numerous abdominal surgeries. The biggest struggles have been Interstitial cystitis, pfd, Fibro and degeneritive disc disease. We are constantly fighting a battle with pain. I hurt physically and my husband hurts emotionally for me. He bends over backwards to make me comfortable and I see the stress it puts on him. You both are an amazing couple. The pain is intense, I no longer take good days for granted. they are too far and few between. When you said you touch her to try to will the pain to yourself, I cried. it is not silly. None of what you said is silly, it is the most awesome display of real love I have ever read in my life. People just don't understand all of the aspects in our life that changes when disorder after disorder piles on and makes everything worse. Everything changes at the drop of a dime. I woke up the other morning with my husband wiping the sweat and tears off of my face as I cried. 7 years ago, we were newlyweds, All I could think was how did we get here? Thank you. You've helped more then you know. thank you.
Sharing our pain does help, Janice. Thank you for your story.
snehal welde 22 months ago
Very touching article ...linda is a lucky woman to have you as her husband .I hope she feels better soon .I know how it is to see your loved ones suffer and how helpless one feels when you can do nothing about it .my mother passed away at the age of 53.she had multiple problems including brain cancer.we as a family were nothing but helpless witnesses to her endless suffering .I have written a hub paying tribute to her .maybe you could have look.