effects on marriages with lupus

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Anne092
Regular Member


Date Joined Nov 2008
Total Posts : 52
   Posted 6/8/2010 11:42 AM (GMT -7)   
Hi I have not written in a long time.  Having a hard time lately.  I have been very depressed lately with being sick.  Since I have gotten this illness I feel like I can't do the things I used to.  Everything affects me.  I am not able to the things I used to do.  I also have a 6 year old autisic daughter that takes what energy I do have away from me.  Three years ago I was taking care of a house, two kids, worked at night and felt good.  Now I am sick all the time taking care of the kids and have no job because I have no energy.  I am sick all the time with infections and something always bothering me.  My marriage is falling apart.   I think that is my main problem.  I know I am not able to do what I used to.  He gives me hint about my hair getting gray.  If I could dye it every month like I used to I would.  But know it bothers me to do it every month.  He does not seem to attracted to me anymore.  I don't blame him.  He says he loves me but I can tell it is not the same.  It seems like he is more intrested in **** magazines and films then me.  How is everyone elses marriages work with this illness?  I know my husband loves me but I don't blame him because I don't like what is becoming of me. 

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 6/8/2010 12:02 PM (GMT -7)   
My husband is wonderful about this disease. I think my almost dying a few times may have helped him realize that things like grey hair and me being unable to do all the things I used to do are unimportant. Odd thing is he never even looks at another woman let alone those sick magazines and movies. Has your hubby been to a doctor appointment with you and had your disease explained by a medical professional? Have you had him read the spoon theory? Have you actually had a meaningful discussion about his feelings and why he is withdrawing into ****? Have you considered having him dye your hair if it bugs him so much? My husband will help me shave my legs if it bothers him and I am unable to handle it myself (I shake a lot and truthfully bending that far over hurts like heck). Letting him vent his feelings might help, have you considered therapy for both of you together and alone? I have read about so many marriages falling victim to this darned disease that I want to do what I can to salvage the ones where love hasn't died yet. Also have you considered the fact that your opinion of yourself may be affecting your husband's and how you react to how he is acting? Just a thought. I really hope something I said helps. I also hope that you can find a way to recapture your marriage the way you want it to be.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 6/8/2010 12:08 PM (GMT -7)   
Oh Sweetie, I have been there. I can't say it was an easy road and can't say that my husband stayed completely true. Mine became very interested in certain websites as my energy declined, unfortunately, the interested he became in those sites, the less attracted I became to him. It was like a total turn off to me. I also let myself go alot. I figured, my hair was falling out, what was the point of getting it done? My face was round from pred, why bother with make-up? Well, this is not the way to go, sister. We lose ourselves to illness. We focus on our kids, they become the only thing we allow ourselves to put our precious little energy into, (trust me I have two boys 7 and 3) and we leave nothing for ourselves or our husbands. We need ourselves and so do our husbands. Believe it or not they really don't want anyone else and they truly are suffering with us. They do see our pain and as men it KILLS them that tehy can't do a thing to fix or even really understand it. We put so much distance between us that it eventually led to my husband having an internet fling with someone he knew from highscool and even sneaking off to meet her once. We almost split and destoyed our lives and the lives of our children. It has left some very damaging scars. I still struggle with trust issues and I know we both said a lot of really hurtful things that will take along time to heal, but we are working on getting past it. I let him help me more, I tell him what he can do to help me with the kids, I try to encourage more intamcy even when I'm tired. I try to be more sexy. I get my hair done, I wear makeup, I even get my nails done, so I don't feel bad about my red swollen hands. We try to find ways to please each other that may not take so much energy or maybe just snuggle and be close. We lost so much to that distance and we know the dangers of going back down that road. Many people here have lost there marriages to this illness, and you maybe able to find my very emotional post from last year. I hope you and your Hubby can patch things up and become stronger then ever and see that this is something that you both will have to bear together and as a family. I wish you the best of luck. Take care and please excuse my typos, I'm flaring.

Jennifer

Taking plaquenil, atenelol,  Flexeril, Claritin, Zantac ,Trazadone, Ambien, Prednisone 5mg a  day,Topamax 100mg, MTX 15mg a week, super B complex, multi- vitamin once a week, folic acid,  and Lortab 10mg 4 times a day, Imitrex for migraines.  Allergic to all NSAID's and Ultram.   Mom of 2 boys 2 1/2 and 7. 

Symptoms: Fatigue, joint pain and swelling,Raynauds,numbness,tingling,weakness, heat/sun sensitivity, mouth and nose sores, malar rash, migraines, awful hives, positive ANA, with speckled pattern, positive RF, negative anti-DSDNA, and positive for Sjorgen's Syndrome.

 

 


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 6/9/2010 11:37 AM (GMT -7)   
Anne,
 
Our marriage is stronger than ever but we are both about 70 and have been married for a long time.  Both of us have a commitment to each other and took the "for better or worse" part seriously.  Last fall my wife developed cancer so we have gone through 2 nightmares in the past 5 years.  Mine was terrible and I almost died and started 2006 as a quadriplegic and could not swallow after losing 40 lbs of muscle (polymyositis).  My main concern was the effect on my wife not anything else. 
 
Marriages are strained and sometimes spouses act like they are the victims, ignoring that it is their spouse that is sick and needs your help and understanding.  I am sure it is more difficult with younger people but I work with disabled patients and have seen some great marriages even under the duress of illness.
 
Suggest that you seek counseling and also take your husband, if possible, to your doctor appointments.  I went to all of my wife's appointments for cancer the past 9 months so I could understand things better and help her get through it.  She did the same for me in 2005-6 when I was in trouble.  It is a little uncomfortable at first but in the end it is a good practice.
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 6/9/2010 5:36 PM (GMT -7)   
I hope you're feeling better today, Anne.

Jennifer

Taking plaquenil, atenelol,  Flexeril, Claritin, Zantac ,Trazadone, Ambien, Prednisone 5mg a  day,Topamax 100mg, MTX 15mg a week, super B complex, multi- vitamin once a week, folic acid,  and Lortab 10mg 4 times a day, Imitrex for migraines.  Allergic to all NSAID's and Ultram.   Mom of 2 boys 2 1/2 and 7. 

Symptoms: Fatigue, joint pain and swelling,Raynauds,numbness,tingling,weakness, heat/sun sensitivity, mouth and nose sores, malar rash, migraines, awful hives, positive ANA, with speckled pattern, positive RF, negative anti-DSDNA, and positive for Sjorgen's Syndrome.

 

 


CelticCail
New Member


Date Joined Jun 2010
Total Posts : 8
   Posted 6/19/2010 7:42 PM (GMT -7)   
It's hard. I'm not the person he married. My illness stresses me out and costs us a ton of money. He hangs in there, but sometimes, I feel like maybe we'd both be happier if he didn't.

Whatever happens to your or my marriage though, we'll get through it. All of us with these illnesses are SURVIVORS.

purplerose652
Regular Member


Date Joined Mar 2006
Total Posts : 124
   Posted 7/27/2010 11:46 PM (GMT -7)   
Hello, my marriage has been greatly effected by this disease. I dont think my husband understands what kind of pain I am in....and I think he resents the fact that I am not the same person he married. It just seems to get worse and worse....I dont know if we will last...:(

Take Care,
 
Renee
 
"Grace by which I stand."
 
Fibromyalgia, IBS,Gerd, Scoliosis, & Costochondritis, Lupus
 
 


jdrea
Regular Member


Date Joined Aug 2010
Total Posts : 124
   Posted 8/14/2010 8:59 PM (GMT -7)   
I think it affects everyones marriage. My husband is great but like purplerose said I don't think mine realizes what I am going through and how bad it hurts. Sometimes I think that he seems to ignore my disease because he is afraid if he sees it then it will be real. I have three kids in the Autistic spectrum. I can completely relate to Anne. They function some, each one in their own way and some days better than others. Their ages are 11, 14, and my 17 daughter. They are able to participate in school activities like band. So there are times that I find myself running at full speed and then it time to be mom and wife. I am not sure somedays hw I do it. I cry then I force myself to move. My husband has been working out of town for two weeks and so it has all been on me. This is why I believe that he chooses not to see the illness because if he sees it then it will be real to him, and he wouldn't have the woman he married anymore. I choose to think that because I know he loves me. I pray for all of you out there with this disease that you and I can continue to do what we must and be who we really are and not what the disease is trying to make us. Hugs to all of you.

louise47
Regular Member


Date Joined Feb 2010
Total Posts : 138
   Posted 8/17/2010 4:51 PM (GMT -7)   
 Actually I am only about 9 monthes into this. However I started getting sick way before I went to a doctor. My husband is great! about it. He is a dissabled Vet He has had way!!!! more problems for a much longer time then me so he is very understanding. We take care of eachother and if we both feel bad we just lay around an be misserable together. I am so sorry you are going through this and the rest of you too. I can't imagine not having my husbands support. Sometimes I feel like he's all I have.
Cymbalta,tramadol,tylonol 4, nexium,verapamil,325 mils of asprin,multi vit,duloxetine hcl,vit D,vit b-6, and simvastatin

High blood pressure,high cholesterol, Carpel tunnel synd,acid reflux,insomnia,fibromialgia, High ANA possibliy Lupus ( no diagnoses) Vitamin D defficient, arthritis in most of my joints.

jdrea
Regular Member


Date Joined Aug 2010
Total Posts : 124
   Posted 8/19/2010 11:56 AM (GMT -7)   
louise,
I'm so glad that you have someone. But I wanted to add a great note in credit to my husband. He came back from out of town on Sunday. He realized how much I have been having to do and he saw first hand how hard it has been for me to drive with my vertigo and my eyes are at it again. He caught me washing dishes with my eyes closed because they hurts so bad and I can't hardly see anyways. He has been going through the house cleaning places that I have almost forgotten about cause I can't see them anyway. He has been so much help this week. I know he loves me and I am glad for his patience. I hope that all of you out there are doing well or at the very least headed down that road.
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