posted
I would just like to know of the individuals who have Lyme and are married, how many of you have the support you need from your spouse. I don't mean support like driving you to appointments but the emotional support that a person needs at times to avoid severe depression. My husband comes with me to many of my doctors appointments but it seems like he is in another world when it comes to dealing with this. He has never come home from work and cooked dinner, even when I was on I.V.'s and he seldom calls during the day to see if I'm O.K. He has immersed himself in things that have nothing to do with me=computers, music, baseball, etc. and it is ruining whatever is left of our relationship.
When I speak about this he tells me that he has to have certain outlets otherwise he can't be strong for me but if he's totally distracted when he's home, where is the strength that he is giving? I am not feeling sorry for myself and am pretty independent when it comes to other issues but I don't know what behavior is normal anymore. I don't expect him to discuss illness 24/7 but the help in researching different treatments when you feel so sick and overwhelmed would be appreciated from him. What ideas do you have/ Thanks!
Posts: 425 | From NY, United States | Registered: Mar 2005
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posted
I'm the spouse of a Lyme sufferer so I think I am qualified to speak for 'the other half'. I know that LD is really terrible for those suffering from it - but mentally, I think it is almost as hard for the partner. I give my husband as much support as I can - he says he would not survive it without me so I think he appreciates it.
To give you some idea of what it is like, I would describe it as going through a parellel hell with him. I cannot feel what he feels, but I live with seeing him suffer every day. I have had severe weight loss, wicked headaches and insomnia. I have felt fear, anxiety, guilt, depression, helplessness and loneliness.
I go to work every day because I can't afford not to go but I worry every minute until I get home again. I phone several times a day to make sure he is OK - and when he has been really bad, I have left work and gone home. I never leave the house without him except to go to work. Time for myself, my hobbies and my friends has totally disappeared. Most days, I just want to scream at the world about what we are going through. Tears are never far away.
I do research, I read boards like this one, I ask questions for him, I keep his symptom diary, I fight and argue with doctors, I go with him to every appointment.
I don't think my husband really knows how this is affecting me - because I hide it all. He has enough to cope with without worrying about how it is affecting me. So I smile, try to make things as normal as I can and just try to be there for him all the time.
Sorry for turning this into a rant - but he has been my solemate, best friend and lover for 17 years and this hellish disease has robbed me of all of that. To get back to the original question, I see my supporter role as a full time job - if I didn't do it, I could not live with myself. I will fight for him until I get the man I married back.
From speaking with my husband, who has been distant since Lyme has taken hold, I believe that men ( like mine) have a hard time not being able to fix something! They look for immediate hard and fast answers and there aren't any with Lyme- not to knock you guys at all-
In our situation, it has gotten a little better since he has had a role- now that he is giving me injections - he feels that he is able to do something constructive towards the healing...
Just a suggestion- give him a role in the healing somehow?
Hope that this helps- I'm sure that many of us are in the same boat!
Sarah
Posts: 119 | From new york, NY, USA | Registered: Apr 2005
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This is one topic I feel very qualified to participate in.
I was diagnosed in 2000 and have been in treatment since early 2001. I went for at least 6 years before I was diagnosed.
My husband has been there for me every day and in anything he can do. I know I sometimes complain, but I feel I could not have come this far without his help.
He took the time to personally put together a program that he is presenting to civic groups in our community (He did this without my knowledge) has been to every appointment with me - and will do anything I ask him to to help.
You have to know that prior to my getting sick, he never cut the grass, did any painting, wallpapering, home repairs, etc. I did it all. Now I can't do any of it. He takes care of the outside of the house and I have to have help come in to take care of the inside. I just can't do it anymore.
I hope this helps some - I worry about him because I don't want to burden him more than necessary - sometimes I pull away too far because I don't want to worry him.
There is no way I could do this without his support - yes I still get upset when things don't get done and it bugs me when he sleeps and snores throughout the night and most of the day when he's at home. But - it's a small price to pay for all hes done to put up with me.
He has to listen to me "vent" because I put on the fake smile, etc. when I have to go out. Without his support, I know I wouldn't be here now. The road has been long and I can understand that some people can not take the stress
Thanks for giving me a chance again to realize how lucky I am.
Rhonda
-------------------- RCS Posts: 140 | From Fayetteville, GA USA | Registered: Apr 2001
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posted
Dear Brodie, I was really touched by your reply. You sound like such a wonderful person and your husband is very lucky to have someone with your depth of understanding and unselfishness. I am showing my husband your response so that he can learn from it-hopefully. Thanks again.
Posts: 425 | From NY, United States | Registered: Mar 2005
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
So sorry to hear your marriage is not going well for you, amk! I think a long-term crisis brings out the weaknesses in a relationship.
Could the two of you see a therapist together? Perhaps there you can both better define what you are missing from each other, and work toward healing the rift. Find a counselor who has dealt with the chronically ill -- perhaps an oncologist can suggest someone.
I went to someone with my bf of 5 years. It did not repair the relationship, but helped make it clear that the relationship could not be saved.
Feel free to email me if you want to talk.
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
This topic has really hit me hard. amk, I appreciate you bringing it up and also all the replies.
My s/o has been really amazing since my dx. I had been pretty sick for 2 years prior to dx, and those times were tougher, because we had nothing to explain my generalized pains, and lack of energy and enthusiasm.
Now that we know what's wrong, it's been different. There's been a lot more patience and understanding.
We try to talk regularly and honestly. I do the best I can with stuff around the house (not much). Honor social commitments when I can (not often).
Still, there are huge financial pressures, lack of understanding from some friends and other family members, seemingly constant pain and residual fear. Not easy stuff to deal with.
I see a therapist, primarily to b+++h and whine to someone else. My s/o and I try to have regular "date" times. I've tried to get a network of people around us to help pick up some of the responsibilities, allowing us to pursue some separate activities and relationships.
According to my s/o. the hardest part of all this has been seeing someone once so active and full of life suddenly become almost completely debilitated. Just like you said so eloquently, Brodie.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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lyme_suz
Unregistered
posted
Hi AMK,
Well, I'm sorry for all you are going thru. Being frustrated and unhappy in marriage makes everything worse.
I have been married 16yrs, lyme 5 yrs, treated 6mos. I had no idea that "for better,for worse, in sickness, in health" would apply to us. Or maybe when we were 70, not 40.
Marriage is precious, but will take much adapting and patience.
My patience is not so great with feeling so sick. I am emotional and have had some out there thoughts about my husband. I never could understand how couples could divorce in the aftermath of cancer, birth of handicapped child, etc. I looked down on them.
Now I understand more that marriages get strained by illness beyond human endurance.
Don't you think that there is a tempation to change SOMETHING in one's life when so much is out of their control. Also, at at times people are willing to pursue some pain to distract themselves and make dull by comparison the chronic pain and disappoints.
When situations are unbearable, we can seek and find help from above. I am a selfish person and boundaries like marriage save me from myself. I have probably had some of the same thoughts as you and it is so hard.
I hope that this is not coming across pious. I really relate and feel for you.
My 2cents, even though I've already said a lot..
Why be hasty? Give God time to work on hearts and circumstances. those married many years would tell us that they endured intense ups and down. And when we persevere, marriage tends to closen and grow. This is our experience. Not to be harsh, but the separating option is always there so unless this man is wearing you down as a person or harming you, other than enduring some disappointment and aggrevation; it shouldn't hurt in the big picture.
Could he be suffering from depression? Maybe you also? Depression and anxiety can lead you to escaping behaviors: TV etc. Also can make me very RASH. Has kept me in past from seeing the awesome qualities my husband does have. Constant struggle, but I think that given the situation, it is not so uncommon. Perhaps others could comment more encouraging on this because I can be demanding.
Hope this wasn't too much. You struck a nerve. I am praying for a good sign today.
posted
Unless I missed it I have not seen any husbands reply so I'll have a go at it
My wife has been suffering for about 6 years now...been diagnosed all different sorts of ways. I found this board about 3 weeks ago and we now have a doctor's appointment in MO with Dr.C.
I agree with the poster who said guys have a hard time because they like to fix things. That is absolutely true! For me that is even harder because I am a police officer so I fix numerous things on a daily basis. It is frustrating to me.
I have taken Family Medical Leave for 2 months to be with her and take care of our 2 kids ages 6 and 21 months. I do all the housework, yardwork, and play with the kids. I do more work at home than I do at work
Now I say all that not to boast but I get really exhausted from this and taking care of her. We had a blow out a couple of days ago but we talked about it and we are ok. I would not trade her in for anything(even though I joke that her warranty has expired).
Point is guys handle things differently and I used to do what the original poster's spouse does. I would pretend nothing was wrong and everything was going to be ok. I was like that until a few years ago when a different hardship struck our family.
I find it is best for my spouse and I to talk about what is going on and tell her how I feel. She is not the only one going through this. I have lost a very active, fun loving, thrilling seeking wife to what I feel is this disease.
I do have a geeky outlet though -----I play Xbox after I get everyone in bed with several friends online. Yeah I know I'm a geek Posts: 82 | From Summerville, SC | Registered: Sep 2005
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
I have a sad story to tell. We used to love each other, have two teen children together. When I got sick maritial troubles have started. My wife refused to acknowledge my illness for over a year. She kept nagging me for hours each day about being lazy and not bringing income while there was 'nothing really wrong with me'. At the time I suffered immensely from various overwhelming pains that I am sure were full equivalent to pains in spread cancer, spent most of the time in bed and deep fog covering my mind. She unnecessary burdened my parents by telling them how lousy son they brought up who has become a free rider. Further more, to motivate me to work she overspent our savings by buying unnecessary expensive items such as new furniture for our house, fashionable clothing, exotic travels or gadgets. She has burdened me with duties that I couldn't perform; for example she left in my hands responsibilities for paying monthly bills. It didn't bother her that I had missed 60% of all payments because of my foggy mind and inability to plan or remember. We had to pay hundred of dollars in penalties or interests for late payments; our phone got disconnected because I forgot to pay a bill. She insisted that I do my own driving (such as pharmacy or doctor visits) in spite of my obvious mental limitations and decreased alertness. At the time I kept forgeting if Green light meant 'go' or 'stop'. I have caused three car accidents during last 12 months (previously I had clean driving record) while doing these necessary medical trips. All of them were my fault. One of them was very serious; two cars were totalled. Costs of the accidents wiped out our savings clean. Not even once she showed interest how I felt, it was only her to be the victim. Didn't want to know anything about LD.Told me 1000s times how I have wasted her life and also used our children to create pressure on me in order to get me up from bed and go to work.
She fed me but bought the worst and cheapest kind of food she could find assumingly to recuperate the costs of my numerous errors and accidents. She herself dined in restaurants and bars.
Today I cannot divorce her because she earns money for my food and has a darn good employment insurance that pays for ALL my medical bills no questions asked. At present the most binding thing in our marriage is her medical insurance as without it I wouldn't survive for more than a few months.
Today I am on my way to full recovery and don't know what I have to do with my marriage when I recover but I don't see a good proseprous life together.
[ 24. September 2005, 02:13 PM: Message edited by: Areneli ]
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
I dated my husband for 8 years before we were married, and have now been married for 3 years...
I have been sick just about the entire time I have known him.
I feel very lucky that he is incredibly understaning of the disease and very supportive..... He goes with me to dr's appts and has educated himself quite a bit on Lyme. He is also supportive of alternative things I want to do as well.
I'm not saying its all roses.... We have hard times. Especially when I am in a slump and cannot keep up with errands/house etc...it definetly puts extra pressure on him. I also have a tendency to complain a lot about how I feel. He has never said anything and is always supportive, but I know it gets to him after a while.
One thing that works for us is giving ourselves personal space.... For instance my husband has his annual snowmobiling trips, or getaways with his brother, and I have my getwaways as well with my friends... It has helped to keep us healthy mentally so that we are not always stuck in the sickness part of it.
Its a tough road with a Chronic illness, but even tougher with one that is not "accepted"
Posts: 437 | Registered: Sep 2004
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posted
CGooge - I just read you rpost and my hubby is a police officer as well and has said many times to me that the worst part of my illness is that he cannot "fix" it b/c that is what he does for a living....
Posts: 437 | Registered: Sep 2004
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Yep...We go to work, someone has a problem, we respond, we fix it, and then leave. Cops have a very different mindset...sometimes that works against us. I HATE not being able to make my wife better. I just have to remember that God is God and I am not.
Posts: 82 | From Summerville, SC | Registered: Sep 2005
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posted
Thought you'd appreciate this. Just got home - we drove separately today to dads house because one had to go to get the car fixed. Slept mostly at dads, mepron has wiped me out, I've never had the fatigue like this ever. Plus monthly cycle, my second day, which is the worst, nothing crazy as far as lyme symptoms.
My husband has gone to doctors appt.s with me when I ask, will listen about treatment when it changes, answer when I ask him questions, but has never taken the initiative to show support. I love him much and know that he'd do anything for me, but I'd be shocked if went on lymenet himself to post a topic, ask a question, or showed that maybe he might have had a recommendation toward treatment, how to handle the stress... He's such a great person, has been there for me through so much that this dishes out, but feel so alone. Just got back from dads - I was so tired I asked my son to keep talking to keep me awake. We separated after the first light - never slowed down to see where I was, drove all the way home, but at least waited for me in the car so he can carry the wash up. I appreciate that, but if he just would have said are you ok to drive, it would have meant the world to me. If he sees me work, function, converse, I think he thinks that I could do that, I'm ok. He doesn't know how I'm doing what I do. I feel like I live on borrowed time with this illness, mentally and physically. Taking pills to mask the symptoms isn't recovery, it's covering it. Hopefully the antibiotics are working too, it's hard to tell when you're taking pills for symptoms and are on treatment. I guess we have to thank God when we have a good day - and know that good intentions are there even if they're not shown. Doctors don't acknowledge the severity of this disease, family and friends, distant and immediate don't understand it, so it's kind of put on the back burner and our lives go on every day. Just because we function and don't show ill, people forget. We can't - we've seen hell, take a pill to hide it and pray that some combination will work to get a life back that you feel is lost. It feels like it's forever when things are bad, but when it's better, you get a glimmer of hope back. My husband was a cop till he retired a few years ago - he deals with black and white, not the feelings this thing could do to you. I understand your feelings and I know you understand mine.
Cigi
Posts: 320 | From Upstate, NY USA | Registered: Dec 2004
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
quote:Originally posted by sarahinnewyork: Hello,
From speaking with my husband, who has been distant since Lyme has taken hold, I believe that men ( like mine) have a hard time not being able to fix something! They look for immediate hard and fast answers and there aren't any with Lyme- not to knock you guys at all-
In our situation, it has gotten a little better since he has had a role- now that he is giving me injections - he feels that he is able to do something constructive towards the healing...
Just a suggestion- give him a role in the healing somehow?
Hope that this helps- I'm sure that many of us are in the same boat!
Sarah
Sarah. Excellent post. Your situation sounds just like mine. I'm doing everything I can for my husband. Checking out different doctors and feeding him full of Vitamin C until our appointment this week.
Hang in there, girl.
Posts: 1366 | From Southeast | Registered: Sep 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Bodie; I am so sorry to hear the hell you are going thru.I am the lyme patient and my hubby is the caregiver as much as he can you are so kind and empathetic ,you deserve a medal. My first husband left me because he couldn,t take the chronic illness.I was touched by your life but a little scared too.I hope i am not inflicking this kind of pain on my husband.I try to act as normal as i can and try not to talk too often.He doesn,t like to even hear about it ,for His on protection he is on the road to denil. take care and God Bless you you are an angel. dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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