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Derek1987

Has this disease hurt your marriage?

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My wife is supportive of my health but sometimes she doesn't understand. She asked me to hang a curtain. It probably took me a month to finally will myself to do it. She would get so angry about it. I tell her I'm sick but she says it's because I'm forgetting. Which that's probably true too but the main reason is my health. 

 

It's hard for me to get motivated to shower and shave. She also is complaining about cuddling. I get it. But my illness makes me suffer to do it. The heat from her and just lying motionless is extremely hard. I can't just lay down and chill. She just doesn't believe how hard things are for me. I'm suffering everyday.

And of course I haven't been on a date since before Sept 2018. 

 

Anybody else have misunderstanding spouses?

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Dear @Derek1987 - I totally get it! My husband - thank god - is a pro in living with a Potsie, so he does not ask things of me that I cannot - or should not - do. Hanging a curtain is too much to do for you for several reasons: standing and lifting your arms above your head. that activity could easily result in syncope, it would for me. I am sure it is difficult for your wife to understand why a "simple" activity such as hanging a curtain is so hard for us and she might blame this on laziness or procrastination when in reality it is simply not something that is good for you to do. Have you asked her to read our family guide? You can find it here: 

I understand that you have been referred to a specialist nd be hopeful that you CAN get better with proper treatment. Until then try to ask a friend or neighbor to do tasks that are not wise for you to do. And regarding a date:  how about getting the kids out of the house and ordering take-out and a movie? I used to rest up all day for a "date night" like that. And although I would fall asleep half-way through the movie it was till some "Us"-time and counted for a date. --- 2 years ago we celebrated our 25th anniversary and went out to a restaurant ( hven't done that forever ). We ate, had one drink and he practically had to carry me back to the car. It took me 3 days to get over it. So - being together, having a nice talk or sharing a joke or meal in good spirit is like a date for us now. And it is cheap, too! 

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It hasn’t helped. My wife thinks most medical problems are psychosomatic. One of her brothers had appendicitis and her mom had to take a shower before taking him to the hospital. Their attitude is just get over it or yourself. Add that to the list of clueless doctors and I’m on my own.

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16 hours ago, Pistol said:

Dear @Derek1987 - I totally get it! My husband - thank god - is a pro in living with a Potsie, so he does not ask things of me that I cannot - or should not - do. Hanging a curtain is too much to do for you for several reasons: standing and lifting your arms above your head. that activity could easily result in syncope, it would for me. I am sure it is difficult for your wife to understand why a "simple" activity such as hanging a curtain is so hard for us and she might blame this on laziness or procrastination when in reality it is simply not something that is good for you to do. Have you asked her to read our family guide? You can find it here: 

I understand that you have been referred to a specialist nd be hopeful that you CAN get better with proper treatment. Until then try to ask a friend or neighbor to do tasks that are not wise for you to do. And regarding a date:  how about getting the kids out of the house and ordering take-out and a movie? I used to rest up all day for a "date night" like that. And although I would fall asleep half-way through the movie it was till some "Us"-time and counted for a date. --- 2 years ago we celebrated our 25th anniversary and went out to a restaurant ( hven't done that forever ). We ate, had one drink and he practically had to carry me back to the car. It took me 3 days to get over it. So - being together, having a nice talk or sharing a joke or meal in good spirit is like a date for us now. And it is cheap, too! 

The thing is my wife goes to all my doctor appointments. She hears the doctors and even acknowledges my limitations. But she's always complaining about how much she has to do. And that's because I'm out of commission. So I feel guilty and it adds stress to me. 

 

As far as dates, the only thing we can do is watch movies at home. If I were to go out to a restaurant, I wouldn't be able to make it. The crowds, the noise, sitting up too long. If I somehow made it through, it would be torture and I'd be sick for a few days. 

She thought i might of gone to the movies with her yesterday. I'm like really? I barely survive doctor appointments. I think she knows my conditions, she's just unhappy with it I feel like. 

She has her own disabilities as well. I'm always like hey slow down. That's enough for today. Did u take ur pain medicine? She gets mad at me telling her to take her meds. I bought her a tens machine, supplements, hot patches. I tell her no don't worry about cooking today because she's hurting. 

I don't think she realizes just how bad I am. I don't know. She understands more than anyone else in my family though. Nobody understands. The last time I went to the ER, I was explaining my story of being bed ridden since September. The nurse had a weird look on her face and said I just saw you walk. I tried to explain but I don't think she received it. It's hurts nobody really understands.

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Yes!!! Sorry I don't have alot to elaborate on other than it negatively affects my marriage, and my other family relationships. 

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14 hours ago, JimL said:

It hasn’t helped. My wife thinks most medical problems are psychosomatic. One of her brothers had appendicitis and her mom had to take a shower before taking him to the hospital. Their attitude is just get over it or yourself. Add that to the list of clueless doctors and I’m on my own.

Sorry man. Not fair is it.

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@Derek1987 -

7 hours ago, Derek1987 said:

The last time I went to the ER, I was explaining my story of being bed ridden since September. The nurse had a weird look on her face and said I just saw you walk. I tried to explain but I don't think she received it. It's hurts nobody really understands.

I get those looks too. Once I went to the ER b/c I could not walk without fainting. When I told them they said they wanted to see if I can walk b/c they thought I meant there was something wrong with my legs. I tried to explain but they insisted. So I got up, took a few steps and promptly fainted. I got hurt in that fall too - apparently they did not even catch me. 

Derek - I am really sorry about all that is going on. I think that maybe your wife might think that you can do more than you say but we here know that you cannot. It is the nature of the beast - that is why they call it the invisible illness. And she probably has been leaning on you a lot due to her illness that now it is hard to understand that she no longer can, at least not at the moment. And since you have been doing so much for your family that now it is frustrating and downright depressing that you cannot do the simplest things. I understand - I have been there. Both of you need to be patient and understanding of each other - I have learned that I cannot expect others to know what is going on inside me. She is always invited to ask questions here on the forum - we my be able to explain what it is like. In the beginning of my illness it was difficult for my family to "get it". But once I showed them a video about POTS and thy heard testimony from others it got better. I also had my husband read the dysautonomia project. It is one thing for your wife to know that you are ill ( as she knows from doctor's appointments ) and another to know what it is like or to accept the reality of you not being able to function. Hang in there - it is a strain on any relationship - you are not alone. 

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Hi Derek

I am sorry you are having a difficult time. This illness puts a lot of strain on relationships even strong ones.I just wanted to share how we worked things out.

 When I was at my worst and couldn't even stand up I felt guilty, useless, scared it would never get better. My marriage felt strained so my hubby and I sat and talked honestly how we both felt. We agreed to listen and not interupt each other, the biggest heart to heart we have ever had ! We both learnt a lot about how each of us felt about the situation but the most important thing I learnt was how frustreated my husband felt, firstly   he felt annoyed at himself that he couldn't make me  feel better and secondly  he was angry  at the medical system. Two years I waited just for myTTT and then Almost a year for pots cadio.I misunderstood this frustrationn and worrying for my safety as him being snappy towards me  and I came to understand that I was way too oversensitive.  I had terrible brain fog and he would shout stop because he could see I wasn't concentrating, I would get upset he had shouted at me , get the picture ? Very trivual stuff but when it's happening daily it can cause strain in the relationship. 

I spent most of my time trying to manage symptons and I felt overwhelmed,  what I didn't consider was how hard it was for hubby to see me in this state, fainting and hurting myself .

It's hard looking after a postie, he had to work more due to my lack of income and then start on everything at home .We spent a weekend rearranging our house ( well hubby did I just supervised!) so I could do little chores. It made me feel less useless and every little thing I could do made one job less for him.

Keeping the fun alive is so important.  I would sleep in the afternoon so when he came home  I had energy to talk to him, watch a film together and i often fell asleep! . Having a cuddle was difficult some days as my body was so painful so we held hands and we used pillows for me to lean against him.we had a marking system 1 to 10 for how I was feeling so I didnt feel like I was constantly moaning, he also knew from that what I could do that day. 

I think we both have learnt so much. I do know we had got into the rut of blaming each other rather than working with the new life.   I also have ended any relationship that was causing me stress and I have to say it has made a hude difference to me. 

POTS has changed our lives dramatically but now we are working with it as best as we can, it's been a hard journey but our marriage is stronger for it 

I hope things improve in all aspects for you.

 

 

 

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@dancer65 - thank you for your response - that is powerful testimony and I am sure it is familiar territory to many of us! Again - thank you for your honesty and sharing your story!!!! 

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My pleasure I just hope it helps someone who maybe feels that it only happens to them .

I can remember complaining  I miss the old me and he replied so do I but I still love the new you just as much. That day was a turning point in my approach to this illness, I realised he missed me as a friend and a lover and we needed to find new ways to enjoy each other ! 

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18 hours ago, Derek1987 said:

Sorry man. Not fair is it.

Life isn't fair. Never was, probably never will be. Choose well.

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My whole life has changed but I try to remain positive.  The only real date nights my husband and I have had in the last 6 years or so were the times that he drove me to the Cleveland Clinic or Vanderbilt or Johns Hopkins and we had to book hotels to stay for several days of testing (I can't fly - get sick for 2-3 days after).  Instead of being depressed about things, I tried to find something fun I could handle for a bit in each place and pretend I was on a vacation.  For instance, we went to the Rock & Roll Hall of Fame and saw the Christmas Story Movie House & Museum in Cleveland.  We went to the Johnny Cash Museum when we visited Vanderbilt - and my hubby got a kick out of the Cooter's Museum and seeing the General Lee from the Dukes of Hazzard in Nashville.  At Johns Hopkins we drove past the big Frank Zappa bust near a library and took pictures with me in front.  This weekend I'm attending the Dysautonomia Conference in Philadelphia.  I bought a ticket for myself and my husband will probably just catch up on zzzzzzzzzzzzz's in the hotel and watch movies.  As warped as it sounds, I found fun during these road trips but being so ill does cause a lot of issues.  Thankfully, my husband is a slob and has low standards so he's ok if the apartment looks like a bomb dropped.  Now that my kids are teens, I have less responsibility so that helps but for a while it was a real strain seeing how my illness affected my kids - especially my youngest.  My older one wants to be a doctor and understands what I am going through - she can actually read subtle signs when I'm ill and I can't hide anything from her.  She's a big help.  As for my husband and youngest, I can be in a tachycardia or confused because my blood sugar is so low that I need assistance from someone and sugar because I'm in danger, but they are just oblivious and can't tell how I'm feeling.  My youngest resents that I'm "always sick" but I do the best I can.  I've missed a lot of their activities, all their races when they were on a track team, field trips, etc. but I pick and choose and get to things like music performances, etc. and now that they are older they need me less.  My family has wanted to move to the suburbs and buy a house but I can't because the commute would kill me and I would have to quit my job and we need my salary but I do feel guilty about that (there's a lot of crime recently where I live so my kids can't do all the things they want to do).  Sometimes when I get upset and cry because I can't take it anymore my husband will say "well, at least you don't have cancer"  It is well-meaning but sometimes I think that, yes, I don't have cancer, but my friends that have had cancer have suffered for a year or two and are in remission, living normal lives but I can't even make the commute home or get through my niece's wedding without nearly collapsing and causing a scene.  I know my husband also feels guilty because he doesn't make enough money to support me and is always telling me to try to stay home and collect disability, but he's not realistic and we couldn't survive on that - we would have to move in with family.  I'm really sorry your wife/family isn't so understanding.  It must be rough for them as well, seeing us like this and not being able to do anything to really help, watching all the money spent on doctor appointments, etc. 

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