Frustrated and Feeling Guilty

I have been married for 15 years and 10 of those years my husband has been suffering with chronic pain.

The chronic pain comes from a spinal birth defect, so he has had a number of surgeries to help, but none have taken the pain away completely.

So that is the basic background. Lately I have been feeling so frustrated.  My life revolves around his pain level and I have lost myself in the process.

I have no friends and everyone in my family have given up on me except for my mom.  I am not even sure I would know how to make friends even if I had the chance to.

We also have 2 dd.  One is Aspergers and the other ADHD so they also take alot of my energy.

I am feeling so frustrated with my life, there is nothing left for me at the end of the day.  Then I feel so guilty because my DH has it so much worse than I do.

Anyone else out there feeling the same?




lonelygirrl lonelygirrl
8 Responses Dec 20, 2008

I feel your pain. My husband has chronic pain and is very much in a bad place. I also have a daughter who is profoundly deaf, still lives at home and is a full time student. I feel like I am being pulled in so many directions..It's overwhelming :(

I know exactly what you mean. My wife suffers from chronic pain which also causes a series of emotional outbursts, hyper-anxiety, depression, etc. and it often gets directed at me because I'm the only one here. No children (which may be a blessing in disguise, as horrible as that sounds, but I would hate to subject them to what I'm going through) I feel guilty also because I know everyday is a struggle for her, but there are times where I just can't take the emotional stress anymore. She accuses me of being manipulative, controlling her life, being a dictator, etc. when she tries to do things on her own but just makes the entire situation worse because part of her illness includes a type of "brain fog" that basically strips her of all logical or reasonable thought. The latest example being that she tried to open a bag of dog treats (which could easily have been opened by a fork or butter knife) with a kitchen knife with a 12+" long blade, subsequently causing her to nearly slice her finger off. There are days that I feel like I work hard (currently at three jobs) while going to school full time and all I want to do is be able to come home, do my homework, eat dinner, and relax with my wife. But day after day it is battle after battle. I should rephrase as a "battle" infers that there are two sides fighting with one another, when the more accurate statement would be attack after attack. Everyday I am bombarded with her negative verbalizations (sometimes aggressive, sometimes self-destructive threats and guilt) when I should be focused on my studies, my grades have suffered term after term from her barrages. Lately my only prayer are the peaks that dot the landscape of her illness which looks much like a stock-market tracker when it comes to the good days and bad days. I feel incredible guilt for wanting to take some time for myself, even to the point of wanting to just get away from her for a few moments of peace so I can hear myself think and give my heart a break from the constant barrage of hurtful things she thinks/feels during these spells. There are days I just can't take it and I feel so lost about what to do. This is actually the first time I've actually sought out a support group. I never even knew there was such a thing until I Googled it out of desperation. It feels a bit better to be able to share my story with you all. It's reassuring to know that I'm not the only one that feels the way that I do, that's experiencing what I'm experiencing, it's actually giving me strength to know that I'm not alone, because there are times I feel so utterly alone. Thank you for letting me share this.

What do you all do when you feel guilty (or are made to feel guilty) for enjoying your activities outside of the house? <br />
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I love my job, love teaching at my church, and basically love being out doing things. My spouse cannot, either due to his pain, fatigue, or depression. I don't want to leave him at home, but when I stay home with him, he's either out in the garage messing around, or watching TV, and doesn't interact with me anyway. I tried just sitting on the bed next to him while he's watching TV, but it's so difficult for me not to interact with someone. I am a talkative person by nature, and when the only responses are "uh" and "mm", it shuts me down. Rejection is my number one issue to deal with, and when I get it every day, it wears me down. <br />
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Thanks for letting me vent.

I can relate, too. It's so hard when the chronic pain from disease or illness just stretches out in front of you, since there's no end in sight. Guilt is a huge part, and in addition to the disabled chronic pain spouse I also have a son who's got ADD and struggles with major psychiatric issues. It's hard some days to keep going, and the loneliness and isolation, lack of physical contact can be overwhelming. In my life, it really helped to get a dog. Anytime I come home, the dog's overjoyed to see me, is always in a good mood, and thinks I'm the best (probably because I feed her, but I'm okay with that). Maintaining the energy for friends is difficult sometimes, but I find doing things alone is positive, even if it's going to a free activity, the library, a walk outside, going to sonic for happy hour soda, whatever. It helps me to get out of the house, which feels like a "black hole of negativity". It's sometimes hard to breathe when I'm here. Hang in are not the only one.

Yes. I can totally relate. My wife has been in pain for half of our 15 year marriage. When it hit, I was in my mid-30's and completely unequipped to deal with it emotionally, spiritually and economically. And, it has ravaged what was once a very loving and vibrant marriage. Now, life is small, filled with guilt for not doing and having done more. Wondering how long the marriage will last. Wondering what the impact is on my children. And wondering what to do from here. I think what you are describing are feelings of helplessness, overwhelm frustration and loss. If that is true, yes, I'm right there with you.<br />
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To ejs2009's point, I couldn't agree more. The invisibility of pain is insidious. I've noticed over the years that new people coming into our life are compassionate to one degree or another for about 6 months, then they want it to be over and for things to be normal. I've stopped trying to intercede. I've come to accept that, for the "average" outside person, six months is about all they can take. My mother in law is consistently there for me as is one long time friend. Others come in and out of my life for varying periods of time depending on how I am doing with "it" at the time. Lonliness is a constant companion.<br />
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I don't know how many times I have heard people tell me that I need to put myself first, and I agree, I would be able to cope better if I took better care of myself. And, it feels impossible. Anyone have any strategies on self care that have worked and benefitted them?

I feel you guys. It's so hard to be the strong one all the time and it's nice to know there are others out there who understand me.

I have a similar story, but my husband's chronic pain is due to arm paralysis caused by a car accident from about 25 years ago. It has steadily gotten worse over the years, and as a couple we have experienced many of the text book problems and frustrations that come with a spouse with chronic pain. He has not been able to hold a job for much more than 15 months and financially it has felt a lot like the first year of marriage for 20 years. In the last few years, his sleep patterns have continually gotten worse, so if he has a bad night or two during the week, I can pretty much count on the weekend being a wash and him sleeping and resting on the couch all weekend. Because of the ups and downs of unemployment and increased pain we took precautions to not have children. Sometimes that makes me sad, but mostly relieved because it would have been a lot like being a singe parent. <br />
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For me, a large part of my frustration is finances and location. I have great family (mom and brothers) and friends, but they are all 300 miles away in my home town so when he is having a bad weekend, I have nothing to do while he needs rest. Financially, at best we can afford about 4 driving trips a year to my home town. <br />
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I never cease to be amazed at the lack of compassion from other people. Because he doesn't look "ill" he is presumed to be fine. One time when my husband tried explaining his pain to someone, he was told, "At least you don't have cancer." <br />
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I hope that by having a place to vent, it will help me cope a little better than I have in the past.

I have felt like you with wifes pain, but feel guilty for not supporting her enough