Hi dnteach. I feel the same way that you do...completely understand. My husband (who I just married 1/5 yrs ago, been with for 6 yrs) has congestive heart failure. Although I understand that I will never know how he feels, I am the one he takes it out on every night he comes home and feels crappy. Because someone does not feel well and are sick, doesn't give them the right to bring others down with them. To me, that isn't love. (I had cancer 3 yrs ago, so I know what it's like to be sick and I wasn't like that going through chemo and radiation). I think some people just feel better if they can make the ones closest to them feel rotten along with them. It's sad. BUT, I understand where you are coming from and if you ever need to talk, feel free to email me.

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I feel like I am suffocating. I found this group because I was googling about chronically ill spouses.
My husband has chronic migraines. He has had migraines for years, but the frequency has increased over the past 6 months or so. He has at least one migraine a week, with the duration of each one lasting at least a day, sometimes three. Half his life is spent suffering with a migraine, completely incapacitated, and completely absent from our "normal" lives.
Half my life is spent picking up the pieces and carrying his share. I am so sad to see him in such pain. It is affecting our young son, as he often tells me he is sick or has a headache. I am also pregnant, so I am not sure how we're I'm going to carry the load when our baby arrives in a couple of months. At least my son is self-sufficient and is pretty helpful. Though, honestly, a lot of times I feel like my son and I are partners, not me and my husband. And that's not fair to a 7 year old!
I am also worried my husband will be fired soon for taking too much time off from work due to the migraines. He is missing at least a day per week now. No matter how good of an employee he may be when he is feeling good, that's hard to overlook. I work full time in a pretty good job, but I don't think that I can shoulder all the expenses myself if he loses his job (especially with a new baby and partially un-paid maternity leave coming up.)
He has missed my doctor's appointments because of migraines. He has missed our son's events. He feels terrible for days on end due to the headache, then has a day of recovery where he is not himself, and is usually moody and tired in the day or days preceding each migraine. Our whole lives are centered around this. I don't know what to do. We are still relatively young and our child is young (and one, not even born yet). I am so sad at the thought of this being our reality for the next 20 years or more.

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I am sitting here thinking "wow" as all of you could be writing about my life in some form or another. My husband has been chronically ill for the past several years. I can't being to cover all his issues here, but a synopsis: First they thought Lupus (I know, it's never Lupus), then he was diagnosed with Gout. Then he has chronic pain so they are now thinking RA maybe or some undiagnosed auto-immune issue due to the severe rash he gets on his face. But he's had 2 massive hospital stays (and about 25 mini stays) with organ failure (was on life support for a week in 2015). To add to the complexity, he has a past with drugs and alcohol which has taken a toll on his body/organs although he refuses to admit it. He was on prednisone (high doses) for nearly 3 years which caused deterioration in his hip and a subsequent hip replacement at 49 years old. He does nothing to help himself get better, only sits in our basement watching TV and complaining how bad he feels. We have no children of our own (all grown from separate marriages). He never wants to leave the house (I think he may have become a bit agoraphobic). I am flying solo to any event we are invited to. I am still young and attractive and feel like my life is passing me by. He was approved for disability (social security) last year so any thoughts of him getting back to work and a life outside the home are now dead. He feels because he's on SSD he's helping to support us. Not even close. While I do have a very good job, I am responsible for EVERY single bill, task, or problem that arises. He refuses to see a counselor (tried once but they were pushy religious). I have seen a counselor only to realize that I didn't sign up for this (we have only been married a few years) and their advice was to leave him. For better or worse they say. But does that mean I have to give up my life because he refuses to live his? There are so many people worse off than he is, but that's not how he sees it. At this point, we feel like roommates as he's not interested in intimacy due to his pain, but I am a human being, I have needs, desires and believe it or not, dreams of a happy marriage. But given all this uncertainty with his health, I have never felt so alone. I think I just need some place to vent that doesn't require a co-pay. I have looked for support groups in my city but they all are for specific illnesses; i.e. Cancer, alzheimers, etc.... There is no support for caregivers of undiagnosed but still chronically ill spouses that I can find. Would love to actually meet people and make some friends who understand what I am going through. My friends try to be supportive, but mostly they don't understand why I am still with my husband. Thank you for letting me vent this morning. While it won't solve our issues, it is nice to sometimes put down in words what is going on in my head.

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So I'm guessing this will be moderated before posted, which leads me to my question. I posted something a few days ago detailing what I'm going through with a chronically ill spouse, and I guess my post wasn't accepted because I don't see it on the thread. I was hoping I could find out why???

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Hi all
This is my first post so bear with me as I might ramble on.
My husband and I have been married for 35 years. We have gone through a lot together including raising 3 sons. My husband was an alcoholic, while my sons were growing up. He was good at hiding it from them but no so much with me. From this I believe he developed high blood pressure and then heart failure about 11 years ago. Since that time, his health has not been the same. Besides the heart failure, he has had 3 heart stents put in, prostrate removed due to cancer, skin cancer, and 2 kidney surgeries due to cancer. He now has about 1/2 a kidney. He has always been a glass half empty type of guy with little to no patience for much and since his heart failure has had depressive episodes. Most recently, he had 6 painful limpomas removed from his back...no cancer thank goodness.
He has been on disability for about 1 year and I am now the lone breadwinner. I am an elementary teacher with a ton of responsibilities. I carry the insurance at this time, do all the bills, talk with doctors because he does not ask the right questions and doesn't understand what doctors are telling him. He has lost some of his mental capabilities over the years.
Anyway, all of this has caused me to become bitter towards him. I do not show that bitterness to him but it is still there. First of all I feel it is his fault he became ill because of his drinking. His behaviors caused this roller coaster of bad health. That might not be true at all but it is what I feel. I also don't feel sexually attracted to him anymore. I seem to be the constant giver in this marriage and sex is just more giving which I don't have the energy for. Also as someone else mentioned he is all consumed with his illnesses and pain. He is always negative, never wants to go anywhere/do anything, and he barely talks to me unless it is about his illnesses. This is all making me feel lonely and frustrated, and as I said, bitter. I do love him and feel committed to him because of our Catholic marriage. I am a strong faithful person, but even a strong person can only take so much.

Thank you for letting me ramble on and thank you for this site.

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