Hi, my name is Irene.
My husband has Fibromyalgia.
I am a Fibromyalgia spouse
This is our story.
My husband and I have been together for thirty nine years. Twenty five years ago, he began to get sick. He had many problems that no one could figure out and just kept getting sicker, and then the panic attacks started and he had to leave his truck driving job. This is our story of how I became a Fibromyalgia Spouse!
We lived for three years on my small check because no one could find out what was wrong with him and disability needs a diagnosis before they can put you on disability. If not for my parents, we would have lost our house. It was some really hard times, but we managed to get through it and after disability’s doctor gave my husband a bunch of tests, he was accepted with the stipulation that I take care of the money they give him. I get audited every year and have to tell them what I do with the money they give him.
I am very grateful for that check. It’s not a lot, but it helps. He does not get any medical help, or food stamps, just a small check. Back in the day Fibromyalgia wasn’t respected as a disease. He left one of his docs, because he did not really believe Fibromyalgia was a true illness. My husband also has Spinal Stenosis, Degenerative back disease and the last three discs in his back are mush. SO, he’s a big ball of pain and some days he can barely walk.
Twenty five years of this have not been easy on either one of us. I’d like to say that I am a perfect wife who is always there with a smile and helping hand, but the truth is some days I just want to scream and scream. Everything is up to me, he used to take care of our cars, broken stuff, painting dump runs, snow blowing, etc, etc. all the man things. I do them now. I have always cut the grass in our big yard and took care of the gardens, but he weed whacked and trimmed the trees.
No more. As a Fibromyalgia spouse, I do it or pay for someone to do it if it’s something I cannot handle. I take care of all the laundry, mostly all the housework, he will do dishes if there are any when I leave for work. I work eight hours a day at a job that keeps me on my feet all day. I do all the shopping , errands, pay all the bills. He stopped going to the dump about five years ago after breaking his arm. I do it now. I actually like to. I bring my dog and we go for a run at the beach after. My life has changed so much I don’t even remember what it was like before.
We still, once in a while go to a concert, or a Cirque du Soliel, but not as much as we used to. We can’t make too many plans because he might be having a bad day, and we have had to leave Fenway park during a game because he was cold and could not stand the pain. I remember getting very upset because the evening had cost a fortune. Of course I feel ashamed that I got upset, poor man was suffering and all I could think of was that I didn’t want to leave. I do a lot of stuff alone.
I keep myself occupied and entertained. I ride my bike, take rides with my dog, walk her at all the pretty places around here, She’s my best friend. I belong to a gym, I go to the beach, all alone. My husband doesn’t come out with me most of the time. He sleeps till around 11 and goes to bed very late. I’m the opposite. I get up early on weekends, do my things and usually get back to get his breakfast. I get very lonely. I get invited places by my friends, but I don’t like to be away from home very long so I usually decline. I do meet up with good friends once a month for dinner. We have dinner, catch up on each others lives then go home.
One of the girls has a sick husband too, something different, but she understands my problems.
Being a Fibromyalgia Spouse, it is hard to admit that, Sex does not exist anymore. It hurts him just when I hug him. I cannot even scratch his back anymore. Thankfully I’m an older woman, 59, so I can deal with it. I feel bad for younger women dealing with this. My husband kisses me every night and tells me he loves me, that’s the extent of our sex life….for many years. I do whatever I can to help him, but it’s hard not to feel
I feel alone, I feel like I am the man and the woman, I feel like he is my child sometimes. I feel ashamed for getting angry at him sometimes because he can’t do the things I need him to. There are many days he does nothing but lay on the couch and I feel like he’s giving up or giving in to this illness. I’m scared for the future. He’s on so many meds, I’ve read they cause Alzheimer’s. He’s very forgetful, can’t remember anything I tell him, ever and I wonder if it’s starting or this is just part of Fibromyalgia fog.
I’m scared I’ll die first and he won’t be able to take care of himself. I worry he’ll get tired of living this way and kill himself. He has enough meds to kill himself ten times. I love this man and would never leave him because of any of this. I married him for better, for worse, for richer, for poorer, In sickness and in health. Sometimes he cries, he is in so much pain, and I wish at that moment God would give me the pain and give him a break. I am wondering if any other women out there are dealing with this. I’m wondering if they know something that I don’t , I would love to hear how they feel.
Am I being a drama queen or does this really suck? I’ve always wanted someone to write an article showing the Fibromyalgia spouse’s side and today someone did, but from the healthy husband taking care of the sick wife. It didn’t fit me. He said his wife didn’t show her pain. I see my husband’s pain. He doesn’t hide it, he can’t. It’s too much. The article didn’t fit because men and women are different.
So here is my side of it. Thanks for the opportunity to write it.
Irene Lima – March 2016