I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Dry-Pack-Babe on February 25, 2011, 08:57:48 AM
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I have often wondered if dialysis has a negative impact on romantic relationships. Or friendships, for that matter. Well, I know from experience that the disease can ruin friendships.
Some people can't do the things they once did like skating, biking or hiking. Or getting plastered or gorging on Italian food. Most Italian dishes contains gooey, delicious cheese, which we're not supposed to have.
I'd imagine if a person is perpetually exhausted, they aren't interested in having sex, which is an important part of a romantic relationship.
So I wonder if an insensitive person would terminate a romantic relationship because a mate has kidney disease.
A so-called friend dumped me because of my ESRD. We used to hang out all the time, and he took a powder when I disclosed my illness to him. I wondered if he thought the disease was communicable. If so, how dumb. This was/is an erudite man, so he should have known better.
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My kidney failure has, over time, completely changed most of my friendships and redefined my relationships with family and my husband and son. Most of my friends want me to be who I was before I got sick - I can't be her. I'm not her. And, of course all of the work friends were gone when the job went. Being on dialysis is very isolating!!!!!!!!! Luckily, my husband is a trooper. But, I know he is very unhappy with the situation - not really with me - but with all of the negative changes in our lives.... It's the unspoken side of the diesease. A lot of people really can't handle it....
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I forgot to mention in my initial post on this subject that I met a lady at a former clinic, who told me that her mother blamed her for getting kidney disease. The patient has high blood pressure and her mother scolded her for neglecting it. "If you had taken care of your high blood pressure, you wouldn't have bum kidneys," her mother said.
Recently, her mother died and she didn't seem terribly sad about it.
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All chronic illnesses can and do affect relationships...how could they not? So does bringing home a baby or going through financial struggles or losing a child and so on and so on. In short, life affects relationships and many people can't or won't be able to stick around when things get sticky, difficult or sometimes simply different.
However, if we know this, then we can try to talk about important, life-changing events with our friends, partners, family members etc and hope that we will be lucky enough to have people in our lives who can weather storms and of course we must work at being able to do the same.
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ESRD is such a life changing event it is bound to change your relationship with family and Friends. A lot of people just can't deal with someone who is sick. Some are afraid you might ask for a kidney those who are actively looking. Some of my Friends didn't get in touch because too much time had gone by when I got sick that they were embarrassed to to see me. Mention blood and needles and see how that becomes a people deterant.
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Im 32 years old. Its been 8 month since I started dialysis and I started to date. Long story short, I felt to much of guilt if I ever pursued her. I never told her to the extent of my kidney failure. She knew I was getting treatment, but didn't know I was getting dialysis 3 times a week. I just kept putting it off telling her thinking I would ease it into telling her. The relationship slowed down and me being the guy should of pursued her, but I couldn't because of the fear if we ended up being exclusive and me telling her , I was afraid her telling me that I should of warned her. Kind of like telling someone about defected product. I always feel like there's disclaimer about me before I meet anyone now sad as that sounds.
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My father died about 9 years ago. A year later, my mother remarried; she married a man who she had known for many, many years. His wife had been ill for a long time and had died the year before. My mom and her new husband had visions of companionship and travel. They planned to spend their later years together. They were both in their 70's when they married.
Then my mom had to have an aortic aneurysm repaired, and the surgery destroyed her renal function. So, her life (and his) now centered around dialysis. They never got to go on their travels. I know my mom felt horribly guilty. Here she had married a man whose first wife had been ill for so long, and now this. I know he cared about my mom, but I think her dialysis was just too much for him, and I suspect that in the end, they regretted the marriage. I think he fled emotionally and left her alone. I saw it happen, and I prey the same thing doesn't happen to me. I had been married to my husband for less than a year before we found out just how bad my kidneys were. Talk about deja vu!
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Well here goes.. for years now he's doesn't sleep at night. He sleeps on the sofa.I sleep in the bed. Recently the living room is becoming his "bedroom" in a way. It's easier on him to keep things in there. His meds, his pj's, and his clothes for dialysis mornings. He now keeps his sclae out in that area too. Things are being re arranged for a sick persons needs will say. He sleeps a LOT. We do somethings together like shop, but he can't do much physcial activity. I do go out with my girldriends from time to time. It's always the same old thing: "how was dialyisis today". How much did they take off?" "what's the matter, are you cramping?' "Anything good on tv tonight?" Well... I thinkyou get it. I am being drained more and more from living with a person with chronic illness. I used to fight the fact that things were not so good. Now I realize they really are. He's done the world for me and my children. More than probably anyone else ever would. Even with his illness we still laugh (not nearly as much anymore. He deosn't feel well a lot), and we are total goofballs lol. I wish things were so different I do. I know he does too. In the romance dept? Well I no longer even think about that. It's just not going to happen. Sometimes I feel like a "has been" at 46. I know, that's horrible. So.... there's my honesty on the matter. I'm tiring of being stressed out, cleaning, having "special needs"-medical crap all over the house. I want some normalacy and things they way they were. Whew....listen to me my gosh lol. Tomorrow will be a better day. I still DO have them! lol
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Yes, it is hard being sick AND feeling guilty for how your illness affects the ones you love. Sometimes I think it really must be easier to deal with everything alone. The guilt raises your stress level and affects your health even more. It is hard to be emotionally intimate with someone you are trying to protect.
It is also really difficult having to pretend to be nice and happy so that your spouse doesn't have to deal with your anxiety and your terror. It leads to a fundamental dishonesty that, while seemingly noble, is actually destructive to that emotional intimacy that is so important in a relationship. If I had a dollar for every time I've felt like I needed to act like everything in Mooseworld is fine and dandy, I'd buy this website.
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Oh please don't get me wrong Moosemom, I am always putting Mikes needs first. After all he is the one with the illness. Most of the stuff I said I keep to myself but I KNOW I am able to vent here.I have metioned several times in the past year of being here about how it must feel for the dialysis patient. He is not one too vent his concerns too much. Sometimes we talk through it nor is he one to pretend everything is just fine (except with company or neighbors etc..) and believe me you know it. Never was a yelling or complaining kinda person but he'll just sit there with is head hanging all day. When I ask him if everything's ok he says he's just tired which he always is. When I think of a person on dialysis I think: it must be scary because it is a life support. Maybe even feelings of regret that you can't do what otherwise healthy people do, not being able to fully take care of the needs of the home because of your illness, having to sometimes rely on others...the list goes on and on. Let's face and we all know this we hate dialysis. It is our way of life though and there is no turning time back. Life is also about making the best from unusual situations and learning from them. (I may have misread your post but I thought you're respnse was directed to me because mine seemed so "all about me-ish" lol. Sorry about that)
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Oh no, texasstyle, that wasn't directed at you at all! I'm very sorry if it seemed that way. I am acutely aware of how hard it is to be a caregiver, mostly from your posts, and I guess that is why I try to "protect" my husband from myself. The pressure on a caregiver is different from that on a patient, but it is still pressure no matter how you define or label it, and it is still hard. And there is nothing at all wrong with posting an "all about me" post; we all need to do that from time to time and thank God we have a safe place like IHD in which to do just that!
Henry, I agree with you a thousand percent; once I start D, I will do everything myself as much as possible and will ask my husband only to fetch me little treats while I dialyze! :rofl; Having to depend on someone else can be so hard like TXstyle mentioned, and I don't want to do that if I don't have to. Also like you, I hope I will be one of the lucky ones who will actually feel better on home hemo. I don't have any family or friends to approach for a kidney, so I don't worry about that sort of awkwardness, but I still hope for a cadaveric kidney. But I do understand you not wanting/needing to pursue transplant. I am sure your wife is so grateful to have a healthy husband despite/because of dialysis! You are blessed!
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Relentless - you've hit on one of the age old dilemmas of life - and something that is almost a FAQ on this forum - as in "When do I tell them?"
I've certainly been there a few times myself and it's difficult. I found some women could accept it, others had a hard time - and I've made mistakes. This one time (nowhere near band camp) I told a girl too early and she scolded me! Like "Way to go to sell yourself to me by telling me negative stuff like that!" - now she was actually willing to give me ago, but there were other issues that meant that thing didn't work out quicky. If my experiences have proved anything to me it is that there is no right or best time, and you have to play it by ear. I am still a proponent of telling sooner than later - I mean for me I have a dirty big fistula, so it's going to be obvious to ask "what the hell is that?" but also I don't think it's right to keep something like that from someone - and let's say you date for a month and don't say anything then she finds out - she could be justified to be angry for not being told earlier - and of course then it becomes a general trust issue - if you couldn't tell me that what else are you going to hide from me? That kind of thing can kill a relationship faster than high BP does a sick kidney.
Anyway on another tack on this topic I also had an experience where the idea of dialysis seemed fine, but the reality killed things. During the first few years of my time on dialysis I was dating a girl. She knew about my dialysis in that I told her and she understood the general principles but she never saw it. We spent time as normally as possible - having dinner, spending time together etc, and that was fine. Then after several years she actually expressed an interest to SEE dialysis. So I dutifully took her along to the unit to have a look. As it happens the machine wasn't ready that particular day so she only really got to see the other patients hooked up etc. Well she seemed OK at the time and we parted company normally, but she seemed to frreak out after that, and broke up with me a few weeks later - unfortunately she never really explained why (this is a whole other issue) but that's the most significant catalyst that I could point to to why things went south. Now yes, I know that that was her issue, and there were probably other factors at work (and the fact that she couldn't even really tell me how she was feeling/thinking worried me too) but yeah.. it seemed like actually seeing what the deal was really affected her.
Some people are like that.
I think also it depends on the life experiences and understanding of potential mates - I mean I once got to know an ex-nurse... and she actually was pretty OK with the dialysis situation - I think because she had exposure to the medical stuff and understood that that doesn't define who a person is.. and was willing to give it a go.. but maybe others who have no exposure or understanding would be scared, or not wanting to get involved with a "broken" person or something.
And finally back to Relentless' point - I too had that problem when seeking to date someone new - not only the problem of telling them, but then the burden of not wanting to put all that stuff on someone like that. Relationships, at leazt initially, are supposed to be fun, not so serious, enjoyable etc.. but you put this heavy stuff on someone that would bother me too- when I cared about someone the last thing I really want to do is put more strain or pressure on them. So I totally understand that issue.
Yes, it's complicated.
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When I was dating folks I had a transplant and was healthy...I usually told people after a couple of dates that I was "sick". Being healthy back then the relationships ran their course over a couple of years and fizzled out due to normal growing up. But now that I am sick I realize now that those relationships would have NEVER made it....being with someone sick you have to extreme heart and strong will.
I agree with Henry that you cannot make your mate a 24/7 nurse. I try to shield Aaron from that and not to lean on him for every emotional need I have, but it is hard. I know their are times he wishes I wouldn't fall asleep when he talks to me about his days, felt more frisky, or would try to stick it out at my job but I have to do what is best for me. And I tell him he needs to do what is best for him...at the end of the day if that is not being with me then he should leave. I do try to keep in my head that I need to find a way to cope and hopefully thrive with this disease, but it is hard.
My brother told me something interesting once about dating...he said, "Rachel it is okay for you to be sick b/c you are a woman and a man will take care of you. That is acceptable in our society. It is another thing to be a man and to be sick. Women want to know that they will be taken care of and the man will provide for them." I know this is why he doesn't really date seriously anymore...makes me sad b/c he is the funniest person I know....
xo,
R
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I disagree with that. Women are a lot more caring than men. I have gotten more sympathy and support from women because it is more natural for a woman to be nursing and caring. I think it is more because of their Maternal instincts. Statistic show women also are more inclined to be donors than men.
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I met my BF when I still had my 1st transplant. After a couple of years together it failed. I was back on dialysis for 2 years. My BF stayed and was an excellent caregiver. He helped me with dialysis and cried with me on bad days. He went thru everything with me. He usually woke up with me when my PD machine would alarm.
The one thing I worried about was our sex life was a complete 0 . He never complained about that.
I received a 2nd transplant Oct. 2010. Things are starting to get back to normal. He confided in me that he still worries that sex will hurt me somehow. So we are working on it. ;D
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The problem is building up the courage to ask someone out knowing that you will have to have that talk with that person about dialysis. I could really care less if somebody does not like me because of my kidney. I have way to much pride to let that bother me, but it's just that talk abut it that intimidates me.
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The problem is building up the courage to ask someone out knowing that you will have to have that talk with that person about dialysis. I could really care less if somebody does not like me because of my kidney. I have way to much pride to let that bother me, but it's just that talk abut it that intimidates me.
I hear you brother!! I agree that if someone doesn't want to deal with us because of our condition that's going to be their loss and we need to accept that and try to not get too upset(though rejection always hurts, whatever the cause).
As for women vs. men being "better" caregivers. I think it's not very useful to have stereotypes like that because you can always meet/know exceptions to the rule. eg: I know a number of husbands AND wifes of various folks that I would consider to be awesome caregivers/supporters - and just as many who aren't. I think it takes a particular sort of person to be a good caregiver.
Having said that, I think that in general women are probably more nurturing, and with that in mind they would find it easier to accept someone who isn't perfect/strong etc to be with. I am not writing this well - I do not think it means that women are pushovers or automatically accept a "mothering" role or anything like that, just that I feel perhaps females can be more accepting - prefering to consider the all over person - rather than focus on prospective problems.
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A lot of you seem to have big concerns about dating and not having anyone keep interest after they have found out you have kidney disease/dialysis. Well, I'm here to tell you that there is SOMEONE FOR EVERYONE. Of course it is somewhat different having the disease,or wanting to be part of the caregiving in a new relationship. I look at things differently maybe. I don't know. As we age we are all going to have problems arise and our other halves with have them to adjust to.It's just part of life and living. No one is perfect. If someone's body is in excellent health they may have mental issues. Kind of an unseen illness for a dater to first off in a person. Or maybe the person is over jealous and that could make difficulties in a relationship. So many reasons why it can be hard to date besides this.For you who are with kidney disease (I'm the caregiver) you still have lots you can do with someone. You're right Richard, it's their loss! If they only knew....
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Generalisation time but I think the concern is much more when you're younger (and yes TS my darling I know you're an 18 year old vixen!!! >:D >:D >:D) - I mean I guess it goes back to the primal urges that we know a mate will select the best option for them. When you're in a society that competes with others and there's choice, then someone will most likely go for a healthier option.
Writing more realistically I think really it comes down to that SOME people will just not be able to or want to deal with someone who has a chronic disease. Specially when you meet someone initally. It is a reasonable fear and worry to have - how can you get that p[erson to see the great person you are - to look beyond the disease. I have a double whammy in this respect given my poor eyesight and thick glasses, so it is often a case that I will be overlooked based on looks alone, and THEN they find out I have kidney disease? whoa!!!
I think though, as we age, things like superficial judgemtns become less relevant, because we've matured more, and experienced enough of life's ups and downs, and have our own issues that it's probably less of an initial turn off as it might be for younger people.
Again, just a generalisation.
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I don't hate dialysis - it keeps me alive so that Dave and I can still have a loving relationship for as long as possible. Dave has his own problems as he has a genetic disease that gets worse and worse. He has been on crutches for 14 years and he knows that he will be in a wheel chair one day as well. We still try to travel; him more than me. We both understand that he has to do things now (he is 43 and I am 66). I do twilight dialysis (5:30-10:30) and he tries to get out on nights I am at dialysis.
Every day dialysis keeps me alive to be with the man I love is a BIG BONUS!
I spend most of the night in a chair as I can't sleep very well in bed. We miss the cuddles and the closeness. We have trouble doing the housework and the cooking but we muddle through. It really helps that we are so much in love.
So, I would not choose dialysis but I can't hate it.
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My brother told me something interesting once about dating...he said, "Rachel it is okay for you to be sick b/c you are a woman and a man will take care of you. That is acceptable in our society. It is another thing to be a man and to be sick. Women want to know that they will be taken care of and the man will provide for them." I know this is why he doesn't really date seriously anymore...makes me sad b/c he is the funniest person I know....
xo,
R
Your brother may be right about the dating part, but it's the opposite when the relationship is already established when the illness hits. Men in general want fixable problems. If they can't fix a problem, they dump it and run. Women expect to be the nurturers and don't often leave when their mate becomes sick. Take a poll among the caregivers here and see how many of them are women caring for sick husbands versus sick women with nurturing husbands. There's a lot of women on IHD who were married and now have either divorced or have serious problems with their relationships.
I was already ill when I got engaged. He had a very romantic notion that "Even a few minutes with you is better than no time at all, even if it's cut short." Lovely. I was increasingly ill for a decade as my kidney function declined. When he left just after the doc had announced it was time for me to start D, that changed to "I didn't think it would be this bad for this long." Gee, sorry, next time I'll try to die faster so you don't have to put up with me for so long. :sarcasm;
I consider myself well-divorced!
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If anything, dialysis made our relationship stronger. We thought we were strong all along, and were actually quite ignorant when it came to kidney failure etc. Dialysis made me realise exactly how serious his condition was, and made me extremely scared to imagine life without him. Nothing got in my way of looking after him, and after the transplant that little fact still lies dormant.
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If anything, dialysis made our relationship stronger. We thought we were strong all along, and were actually quite ignorant when it came to kidney failure etc. Dialysis made me realise exactly how serious his condition was, and made me extremely scared to imagine life without him.
I would agree with this completely. We hadn't been married long and life had thrown us so much crap that the kidney failure was just the icing on the cake. But I know that because we can get through this - and still make each other happy - we can get through anything. I'm sure though, that for everybody like you and me, there's another who really can't cope with a chronic illness and just bails out (whether romantically or platonically involved.)
I'd like to think that if I was the one with ESRD, Blokey would stay with me; hopefully we'll never have to find out *touch wood*!
"Rachel it is okay for you to be sick b/c you are a woman and a man will take care of you. That is acceptable in our society. It is another thing to be a man and to be sick. Women want to know that they will be taken care of and the man will provide for them."
That's terribly sad that your brother thinks like that ... I hope he finds a wonderful woman one day. As for being provided for - I can't fault Blokey in that regard. He is the perfect provider and is always taking care of me (perhaps more-so because of the ESRD.)
;D
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My husband falls outside that stereotype, happily. He knew about my transplant early in the relationship, but I don't think he really understood what could be and ultimately was in store for him. However, I did not really know myself and had never really taken kidney failure seriously. When the time came, he did everything for me that I needed. I often secretly worried that if our roles were ever reversed, I would not be up to it. I hope it doesn't happen, and I hope I'm wrong if it does.
Gwyn does like to fix problems, but that's OK, because I like to have them fixed. I've never understood the line that "men want to fix everything, women just want to be understood". To hell with that bollocks, if you can solve my problems, speak up! I like sharing ideas and trying to come up with a solution - I would be lost without a plan. People who just want to complain and do not want their problems solved get nowhere with me. I just don't get it when individuals seem to want to hear "You're right, that's an insurmountable problem. I pity you."
When I read jbeany's story to Gwyn, he shook his head. He does not relate to men like that.
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I've thought for a long time what jbeany posted, that it seems that on IHD, the caregivers who post seem to be mostly women. I can think of one IHD member (Zog) who is caregiver to his wife on D. But then I thought that this data may be skewed because I have a feeling that most men who may be caregivers may not the the kind to post on forums like this about their feelings.
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I've thought for a long time what jbeany posted, that it seems that on IHD, the caregivers who post seem to be mostly women. I can think of one IHD member (Zog) who is caregiver to his wife on D. But then I thought that this data may be skewed because I have a feeling that most men who may be caregivers may not the the kind to post on forums like this about their feelings.
I think you're absolutely right.
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I'll grant my perspective may be a bit skewed...but I have seen the same trend among my friends with other illnesses as well. It is, of course, a generalization about the male approach to problems and why we so often seem to miscommunicate between genders. But we generalize things because they are true more often than not....
It might also be a generational thing as well - I see it more with those my age or younger, and not always just the men leaving. I had a friend who was misdiagnosed with a fast-moving cancer and given 6 months to live. His then-fiancee informed him that she had no intention of wasting 6 months of her life when he was just going to die. Welcome to the ME generation and all that! (Good riddance to bad rubbish and thank heavens the test was a lab screw-up!)
And yet my dad stuck out every last painful minute with my mom when she was dying.
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The day my husband asked my Dad could he marry me, and the answer was yes (of course), my Mum asked hubby did he know what he was taking on - that I was sick and would have health issues? I remember being mortified but am proud of my Mum now for bringing up the issue. At the time Dad was doing home haemo and Mum was his carer, so it's no wonder she asked the question.
My hubby is my rock. He loads up my PD machine each night as I really shouldn't lift the 6L bags of fluid. He empties everything of a morning for me, except for my porta potty - I do that myself. My sex drive is almost nonexistent and hubby remains undemanding but attentive and affectionate.
We live on the land and my biggest fear is that my health will eventually mean a lifestyle change for us. We are 400km from the nearest D unit. I think I would have so much guilt if that was to happen, and that maybe hubby would not be happy.
This is a good thread - it's great to talk about this kind of thing.
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jbeany, I don't necessarily disagree with your perspective, but despite the fact that many generalizations do seem to have a kernel of truth to them, we should be cautious when indulging in them.
Interesting point about differences in generations. Maybe some of our younger IHD members could comment on that as I am far too old! :rofl;
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Well i have only been on it for a Month....it hasn't really affected my relationships too much..honestly i haven't told any of my friends and family members the extent of my disease..lucky/unlucky for me most of my friends and family don't know too much about Dialysis..my best friend's brother does Home Dialysis...but she lives here in North Carolina and he is in Pittsburgh and she doesn't really talk to him much to know the real deal about Dialysis...honestly i am still in Denial myself that i even am suffering from Kidney Disease..and have just been able to "type it out loud" lol in the last week or two (thanks to this site)
I do not want to upset any of my friends and family and i really don't know how to sit down and explain the situation to them....i am thinking of going out with my two best friends this weekend, sitting them down, and really giving them information about my illness...but then again i don't want to scare them
the only way i can say KD has affected my relationships is that lately i have been a little distant from my friends..but this is also a result of me being kinda tired too as a result of just starting Dialysis..the last 4 or 5 times they asked me to go out i have had to politely decline or come up with an excuse as to why i can't go out.
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Aw... :cuddle;@ Dom. It's hard to know what to do...you don't want to scare away your friends, but you shouldn't isolate yourself, either.
I don't know your friends, so this may be stupid advice, but do consider telling them. If they find it frightening, well, so what? It's not like you're contagious. It's not like you expect them to DO anything. Give them an opportunity to give you some support. It's not that hard to have a kind word for someone who is suffering. Hiding your feelings about something this life changing is hard work, and you shouldn't have to burden yourself with more hard work because dialysis IS your hard work for now.
If you do tell them, let them know that you are new to this, too, and are still getting used to it all. They probably won't know what to say or how to react, but that's OK. They have to get used to your new reality. As for how to tell them, just give them the fundamental facts, that your kidneys have failed and that dialysis does just a bit of what native kidneys do. Explain that you are often tired and that you don't always feel like having wild nights out on the town. You might mention that you have to follow a certain diet and have to restrict your fluid intake (this might be useful for them to know because most of the time when people meet up and go out, eating and drinking are involved).
Be straightforward with your information, keep it simple, and if you feel like it, explain that this is a bit scary and shocking. It's not a crime to allow people to see how you feel. If they care about you, and given some time to take it all in, they will be understanding and supportive. Friends will help you keep a normal life. There is no need to suffer in silence when you have friends that can remind you that there is life outside of the clinic.
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yes knowing my friends they definitely will treat this with an openmind and i don't think it will scare them..if anything i think they may become over protective or motherly..especially one of my friends who is already like an overbearing older sister (but in a good way ;D) lol....the main thing is i don't want people treating me differently ....i already have a boss at my job who usually treats everyone(including me before my illness) like crap...however ever since i told her about my illness she has been really nice to me(almost too nice, sicking-ly nice) i mean i appreciate the thought..but honestly i just wish she would yell at me once...so it would feel more realistic, lol :stressed;
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They may treat you differently at first, but as time goes by, they'll largely forget and will go back to treating you "normally". But if they are a bit more "gentle" with you, well, there's nothing wrong with that. We should probably all treat each other a bit more kindly, no matter our health status.
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Personally, I find the change in relationships to be the hardest thing to deal with.
I've just turned 26 but I may as well be 126. I used to work for 2 major record labels and I'd travel the country going to different gigs, the concept of a weekend at home was unknown to me and going to bed before 2am was also completely alien. Even when I quit that job and stuck to my office job, I'd still travel every weekend and meet up with friends during the week for dinner and drinks.
I don't see any of my friends any more. They don't know how to act around me and I don't know how to act around them. I don't have anything interesting to talk to them about. They will talk about their latest holiday, what's happening at work, a gig they went to etc whereas all I have to talk about is needles, machines and illness - hardly a thrilling topic of conversation. They expect me to be the energetic, happy girl I used to be but that's just impossible. I know things will be different in the future but that's not much help now. I keep in touch with people via text, email, twitter and facebook but that's because it's easy for me to put on a mask of bravado and not tell them depressing tales of dialysis and dying. I can't keep up with them anymore anyway. I've tried joining people for dinner but the dietary restrictions end up drawing attention back to the illness - besides which, I'm so tired each day I end up spending the evening yawning and that's just rude.
My boyfriend and I have given up making plans. I've lost count of the amount of times we've had to cancel things at the last minute because I'm not feeling up to it. I feel incredibly guilty about this and it makes things worse. I'm lucky that Rich is so easy going, he doesn't mind staying in and watching a blu-ray rather than going to the cinema. I still can't help but feel he'd be better off without me though. He's 26 too and should be out enjoying his youth, not stuck indoors with his sick girlfriend.
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Romany, I don't know what to say to that. It's just all so unfair. It must feel like everyone else gets to live their life but you don't, that they are just going on without you. And frankly, that does seem to be what is happening.
I don't know what you can do to change that. I would like to say that perhaps you could arrange to have an early dinner out with just one or two of your friends and keep it sorta low key so as not to tax your energy. Or have a friend or two over for a movie night. I would like to think that one or two of your friends could understand that just because you do not have the energy you used to have doesn't mean you are doomed to be a hermit. But at your age, I don't know how many people could be that empathetic. I would like to think that one or two of your friends could amend their expectations of you to something that you can more realistically live up to. Are you absolutely sure that they "expect" you to be your old self under these trying circumstances? Are you absolutely sure that their expectations can't/won't change?
We'd all like our old lives back. Some of us may be able to achieve just exactly that. Others of us will be able to find simple pleasures in our new lives.
One thing I have learned...people usually do what they want to do. If your boyfriend didn't want to be with you, he'd find a reason not to be. I doubt you are forcing him to stay with you.
:cuddle;
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I said earlier that I lost most of my frineds, but what I did not say is that I have found some new friends and they are a huge blessing to me!!!!! Maybe that's life regardless of health. We change and grow. Some frinedships last, others don't and some relationships happen because of the new changes... Just trying to put a more positive spin on my earlier post.
And - I will say that some of the people who I used to spend a great deal of time with I have left out of my now because they were takers. When I was healthier I had time and energy for takers but now I don't. I don't spend time with anyone who pulls me down. My choice. When you have limited energy you get pickier about who you give it to. At least I did! And I don't regret it!
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It's been a double edged sword. I am the caregiver, my husband has now been sick for 12 yrs or so.
His friends ran away when all of this started. It was heartbreaking for me to see him calling a long time friend and never get a call back. We then took the stance that we should be grateful that they left. The new friends he has made while he's been sick are people we're closer to than family. Sadly, we can't depend on family for anything at all. Trust me when I say, it's better that way.
The good part is that this has brought us closer together. Don't get me wrong, I hate, hate what this disease has done to him and our relationship, but I still have him. We have learned to appreciate the small things in life that we'd never noticed before and we're more vocal about saying I love you or thank you. The two huge phrases.
There's a lot of arguing especially on dialysis days, he gets highly agitated and I think the fact that he depends on dialysis to keep him alive irritates him terribly and because I'm closest.... I tend to be quiet on those days but if I had to rate it overall, I'm beyond happy that he's still here with all of his problems. I don't know how he does it with everything that's happened and keeps on going!
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And - I will say that some of the people who I used to spend a great deal of time with I have left out of my now because they were takers. When I was healthier I had time and energy for takers but now I don't. I don't spend time with anyone who pulls me down. My choice. When you have limited energy you get pickier about who you give it to. At least I did! And I don't regret it!
very good point. I think a key theme here is that those "friends" we lose when we have a chronic disease aren't really friends in the true sense - they're the "good time" friends (or fair weather if you like) and/or takers. When you can't give as much because of your own circumstances, they'll go leach off someone else. Good riddance I say. You can certainly soon tell who your real, dear friends are - they're the ones who are still there, who you KNOW actually give a damn and want to support you - even if they can't actually do much.
In a way it can also be a blessing in disguise in terms of our disease. Weeding out "friends" is something that is in the longer run probably very good for our emotional health. Yes, it hurts n the short-medium term, but down the track it is probably worth it and the bonds you forge with new friends will likely be stronger and more genuine.
Those that can look past the disease and stuff and see see the wonderful person there are the sorts of friends you want in your life.
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Romany, I don't know what to say to that. It's just all so unfair. It must feel like everyone else gets to live their life but you don't, that they are just going on without you. And frankly, that does seem to be what is happening.
I don't know what you can do to change that. I would like to say that perhaps you could arrange to have an early dinner out with just one or two of your friends and keep it sorta low key so as not to tax your energy. Or have a friend or two over for a movie night. I would like to think that one or two of your friends could understand that just because you do not have the energy you used to have doesn't mean you are doomed to be a hermit. But at your age, I don't know how many people could be that empathetic. I would like to think that one or two of your friends could amend their expectations of you to something that you can more realistically live up to. Are you absolutely sure that they "expect" you to be your old self under these trying circumstances? Are you absolutely sure that their expectations can't/won't change?
We'd all like our old lives back. Some of us may be able to achieve just exactly that. Others of us will be able to find simple pleasures in our new lives.
One thing I have learned...people usually do what they want to do. If your boyfriend didn't want to be with you, he'd find a reason not to be. I doubt you are forcing him to stay with you.
:cuddle;
I'm such a different person now than I used to be. It's not so much them expecting me to be the same, it's more that they can't believe how much I've changed. I've gone from being vibrant, energetic and adventurous to being tired, moody and reclusive.
I've put on about 30lbs of weight which is partly down to my diet (I pretty much live on bread) and partly down to me now living a fairly static life. I never have the energy to exercise, even walking around the supermarket wears me out. I'm so pale that none of my make-up matches my skin tone anymore and my hair is falling out. I don't want people to see me like this which is another reason why I don't see my friends. I went to visit my best friend a couple of weeks ago and she was shocked at my appearance.
I don't feel like a valid human being anymore. I don't have anything to contribute to society other than draining the NHS of resources. I used to have a fantastic job, lovely home and a ridiculous amount of disposable income. Now I'm unemployed, living with my mother to save on rent and I rely on my boyfriend for money. It's a complete u-turn and I feel that people won't want to spend time with me because I have nothing to offer them. I know that's not how my friends feel but the idea won't leave my head.
I hate to sound like I'm living in a world of self pity, that's really not the case. The staff at dialysis are always commenting on how cheerful I am (even if it is usually just bravado) and I'm always hearing "I can't believe how well you cope with things, I'd be a mess if it were me". I have an lovely boyfriend, my mother is giving me a kidney, I have the most gorgeous miniature Dachshund and I've discovered that I'm an exceptionally good cake baker. I guess I just find it hard to interact with other people at the moment.
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I am so sorry, romanyscarlett,
I do hope you feel better soon.
Best wishes from Kristina. :grouphug;
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Romanyscarlett, I really hope when you get tht kidney from your mom that you don't let it go to waste and don't forsake it. I know whn I get transplanted tht I will be living my life like it was my last day not just for me but for everyone here that went and goes through the same pain I go through. I truly beleve that you will get to tht happy part of life tht you were once at.
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I don't feel like a valid human being anymore. I don't have anything to contribute to society other than draining the NHS of resources.... I have nothing to offer them. I know that's not how my friends feel but the idea won't leave my head.
I hate to sound like I'm living in a world of self pity, that's really not the case. The staff at dialysis are always commenting on how cheerful I am (even if it is usually just bravado) and I'm always hearing "I can't believe how well you cope with things, I'd be a mess if it were me". I have an lovely boyfriend, my mother is giving me a kidney, I have the most gorgeous miniature Dachshund and I've discovered that I'm an exceptionally good cake baker. I guess I just find it hard to interact with other people at the moment.
I know this may seem like a small thing, but every time you post on IHD, you've offered something. The very fact that you've posted this simple comment has made someone realize, "Someone else feels just like me!", and that can be incredibly uplifting. This forum gives us all the opportunity every single day to tell people that it is OK to feel like this and that there is no shame in feeling emotional pain.
I really despise the whole, "I can't believe how well you are coping...I know I couldn't do it." It's BS. It stems from this unfounded belief that God/the creator/Fate/whatever gives you only as much as you can take, and since I couldn't possibly take it, it won't happen to me. And then we put sick people on a pedestal and declare how "brave" and "strong" they are when it is all bs and we're just as scared as anyone else would be if they were in our shoes. People who say such things don't see you at 4AM when you're lying awake, wondering what the hell happened to get you to this place, to this time. Perhaps the next time someone says that to you, you could sneeringly say, "No, I expect you couldn't..." I've never said that and don't really recommend it, but boy, have I been tempted!
If you don't feel like interacting with people right now, then don't unless you really have to. Don't add burdens to yourself. You have enough on your plate already. For right now, just do what you have to do to carve out some pleasure in your life. Spend your time baking renally friendly goodies with your bf, keep yourself healthy so that you can enjoy the kidney your mother will give you (and do take a moment to enjoy your great fortune. So many of us do not have a live donor!), and when you are ready to get back out into the world, whether that is before your transplant or after, you will know it. I am looking forward to hearing from you when that day comes. In the meantime, IHD is a good place to be!
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what a wonderful place this is to be so supportive of one another and our feelings....I LOVE IHD!!!
I think dialysis takes a bit to get use to mentally and physically...after 8 months and quitting a job, I feel like now I am coming back to my old self. Yeah do I hate dialysis still? OF COURSE, but I am able to mentally come to terms with it. I think many of us get washed over with the overwhelming feelings and guilt associated with dialysis. We are swimming in a pool worrying about our friends seeing us different, our lovers not be fulfilled, low self-esteem, and not having the energy to work and process all that is going on....it is no wonder that people have a hard time getting over the mental exhaustion that goes along with this disease.
Everyday we must pick ourselves up and keep treading this pool. You begin to realize which friendships and family members are in it for the long haul....keep those people close to your heart. Cherish them.
xo,
R