In Sickness And In Health... Mostly In Sickness.

This is a first post for me; I ask in advance that you forgive any rambling. I'll also attempt to keep this from degenerating into a meta-post about posting things.

My wife and I met and fell in love like a lightning-strike. We've been happily married for 3 years now. When we met, my wife was always on the go; between school, work, and even volunteering she was a force of nature when it came to doing. The arrangement was short lived; an accidental fall from the back of a horse triggered her first flare of Fibromyalgia and CFS (side note: I cussingly hate horses now [side note to side note: I made the word 'cussingly' up I think. You can use that].). She has been, regrettably, grinding closer and closer to a halt ever since.

You're all likely familliar with the feeling of conflict that seems to hallmark this situation. I swore my life to this woman, the woman I love. Athough nothing changes my deviotion, there are haunting feelings I experience now and again. I feel ripped off sometimes (and there goes the guilt-fist punching me in the soul-sack for even typing that. Good times!). Where once was this dynamic, take-no-prisoners, brilliant type of woman there is now a slowed, achy, foggy, frustrated woman who seems closer to 80 than 30. I WANTED A PARTNER IN SHENANIGANS, DAMMIT! (sorry for the outburst. it's just... you know.)

I've taken a long time to not feel that way. It's not like it was an insidious plot; life happens and people end up in lots they never expected. Hell, if she had her way SHE would work and I would be a house-husband! I full realize that my frothstration (that was a typo, then I realized 'frothing frustration'. i'm keeping it in.) is a mere raindrop against the ocean compared to what she feels on a daily basis. It's as if she has literally been locked down by her own body. Any trouble I have accepting it is a mere shadow of what she's feeling.

I suppose that's why I'm here.

I don't really have anyone out here in meat-space to discuss this with. Our friends are sympathetic ears, but lack the experience of living with/near someone in this condition. I can't really (in good conscence) discuss this with my wife; she'd just feel guilted or like a burden (I know because I've tried to express myself to her delicately to let her know how I am affected. No faster route to a snot-slicked tear festival that ends with everyone feeling guilty than that conversation). I feel sad for watching her suffer; I feel guilty and impotent to stop it; I feel angry that life was switched from happily ever after to... whatever you call this. I feel guilty for feeling angry. I feel frustrated at the guilt I feel at my anger. (EMO-CEPTION!).

I've adapted to this lot with humor (as best I can).
Psyshade Psyshade
31-35, M
7 Responses Sep 17, 2012

Psych - I hope your wife is feeling better since you first posted this 3 years ago. I hope you have found an outlet for your frustration. I try to go to the gym. That worked for a bit when my wife could still go. She would use pool or whirlpool and I could get my own workout without feeling guilty for leaving her to workout. My wife has mixed connective tissue disease-- meaning she has both lupus and fybro. On top of that she is about to have her third surgery in three years for her spine. I am lucky to have three great kids to keep me sane. Trying to find activities we can all participate in is a challenge. But it is important for everyone in family to participate in life. Isolation isn't healthy.

Wow. Reading that was like someone writing down my thoughts. My husband is only 30, the adventurous "never stops" guy that everyone knows. Before we were married he got injured on the job. Two weeks ago he re-injured it and it made it worse and a week and a half ago he was let go because his injury makes him disqualified for the position. We've been married three months and if one more person asks me "so how's married life?" I'm going to scream at them. Except I don't because I know they don't know better. And no one ever knows what to say when you lay that on them. Makes me cry for all of you, too. I hope there are answers or at something that somehow makes sense of the mess. And maybe redeems the pain as crazy as that sounds.

Thank you for your humour in this very difficult situation. You are very courageous to bring humour in when everything around you is falling apart. I can relate to your experience. My husband is suffering terribly from chronic pain and I too feel like I do not have anyone to talk to about it, or maybe I sense that no one wants to hear about it anymore. I experience the guilt about wanting to escape this nightmare and leave him but my soul would probably never recover if I left him alone with this. Anyways thanks again for your humour and honesty. I hear you.

Thank you for your humour in this very difficult situation. You are very courageous to bring humour in when everything around you is falling apart. I can relate to your experience. My husband is suffering terribly from chronic pain and I too feel like I do not have anyone to talk to about it, or maybe I sense that no one wants to hear about it anymore. I experience the guilt about wanting to escape this nightmare and leave him but my soul would probably never recover if I left him alone with this. Anyways thanks again for your humour and honesty. I hear you.

I just found this web site and am so glad I did. Thank you for your honesty and sense of humor. My husband (who I am still deeply in love with) suffers from chronic pain and I have had the same thoughts and feelings you have. I want my partner back. I am not dealing well with the reality that he will not be coming back the way he was. I see his pain as a third entity in our marriage. An unwelcome guest he is forced to live with and I am forced to comply with. My heart goes out to you.

Thanks for sharing your story, it's such a relief that someone else feels the same way as I do.
I've been married to my husband for 13 years now, he was diagnosed with CFS just two years into our marriage. I have spent so much time feeling guilty for those 'haunting feelings' and for feeling 'ripped off'. Here am I healthy (well physically at least!) and my husband faces day in, day out of constant pain and yet I feel ripped off, what is wrong with me? And what do you do with those feelings, because they just won't go away.
I want to be the perfect support for my husband, but I feel such a fraud when I feel so angry inside (sometimes at him even though none of this is his fault).
It's just good to know that I'm not alone in the way I feel, it somehow makes me feel a little less alone.

Psyshade,

I completely understand where you're at right now. My husband and I just shared our 4 year wedding anniversary. When we first got married, he was the "life of the party"... So outgoing, the funniest guy you've ever met. He has a fantastic sense of humor and can connect with anyone. Not a year into our marriage, he ended up having a spinal chord fusion, which quickly progressed our down hill cycle of never ending narcotics and doctor's appointments. He has pain all the time now, and we have lost all our friends. They're at different stages of their life than we are and can't relate to us anymore.... I mean, who wants to hear about you being in pain all the time. That's all people know about him anymore and it's the only thing they'll ask about. People can't relate to us! We can't even get out and go to dinner his pain overtaking him... It's awful. I would never wish it on my worst enemy!

With all that said, I understand where you're at. I always thought I could make it through anything because there is always an end to everything. But I don't see the end to this! I feel bad going out and doing things by myself because I want my best friend with me and he can't be there. It's a never ending battle. I know your pain and understand how you're feeling!

Thanks for reaching out! It makes me feel slightly less insane. It's difficult watching someone you love lose their substance (in a way). Others have the option of saying "oh that sucks..." and that's it; they don't know what it's like to have agony all up in your face 24-7 or the strange choices it forces you to make. would you like resentment, sadness, or anger today? you MUST pick at least one; free guilt with every purchase! I actually started writing here to try to find a new way of coping. The old way of coping mostly came in a bottle and helped nothing (spoiler alert: attempting to drink away a problem that will never go away is unwise at best). Thank you for choosing to share with me; I feel understood in a way I VERY rarely experience.

I get that! That's the whole reason I found this site too. I wanted to see if there was ANYONE who could relate to me... I guess there are, but they're few and far between. We've gotten a lot of the, "oh that sucks" comments... A lot of people move on. I think we feel stuck. We haven't found anything that helps us and we can't get ahead of it all. We're feeling like the rules for normal people don't really apply to us at this point.... Kind of a strange place to be in. Don't really know if that makes sense!

Makes perfect sense. I've had to get used to the new 'way it is'. We both keep searching for a way to have just a little of what-could-have-been if not for nasty stuff and things. Perhaps that's what's so exhausting.