Feeling Alone

[kemcloney3]

I'm 27 years old and my boyfriend of 4 years broke up with me in the middle of a transplant appointment. He is a nurse and has always told me that he would never leave me because of my CF. I can't even put into words how hurt and lost I am. He did a lot of things for me like flushing my port and dressing changes. I come from a family that is in denial of how sick I really am. My mom thinks I am a hypochondriac and my dad has a new family with little interest in my life. I feel like I have lost my entire support system because his family was always there for me. I think that is why I hung on so long to a relationship that was failing. Have any of you felt so lost and alone before? How do I proceed from here?

My family keeps telling me to get out and meet people. How do I meet people when I don't even have the energy to go downstairs and do my laundry? My PFTs are around 25 and I'm in constant pain. Besides I don't know many guys who want to stick around knowing I'm going to have to have a lung transplant soon and they are going to have to support me fully for the rest of my life.

 

[Gorf]

I honestly don't know what to say. If you want to talk, message me here and I will give you my facebook. Oh, I am 49 year old male that has just went through his Transplant Evaluation at Mayo in Minnesota and waiting on there answer.

 

[LindaJ]

My heart goes out to you. I am a CF Mom of two. You will now be forever on my mind and I do hope all goes well. We have not had to face much lung issues, thankfully. I cannot imagine what you are going through and hope you stay strong.

 

[Helenlight]

Oh man, that sounds rough :-( Break ups are awful, even when you don't have other difficult things to deal with. I used to find that reconnecting with myself was important after that kind of event, and that often made me feel a lot better, realising that something more 'right' was ahead of me. And it's hard when your family doesn't really understand, sorry to hear that.

Do you have friends, or even old friends who you could call on to come and visit you? A chance to reconnect, talk, and hopefully have some laughs

I don't have CF, but my daughter does. I've certainly had break ups though and they suck! I was 26 when I had a significant relationship break up (4 years like you) and it took me 2 years to feel fully back to myself again. I was 30 when I met the right person for me, and we have a beautiful daughter now

If you want to talk or anything, feel free to contact me: helenwilliamson (at) outlook (dot) co (dot) nz
I'd be more than happy to chat.

All the very best,
Helen

 

[Mark_s83]

"...Besides I don't know many guys who want to stick around knowing I'm going to have to have a lung transplant soon and they are going to have to support me fully for the rest of my life."

It is possible that you won't need as much support as you think. My brother had a double lung transplant 7 years ago, when he was 57. He is doing well because his transplanted lungs were such a great match that he needs very little anti-rejection meds. He is married and his wife is very supportive but he was doing well before he knew her and has always been independent enough to take care of himself. Maybe this will be the case for you; maybe not. But at least it is a possibility.

Mark S

 

[TreasureGoddess]

That totally sucks. No way around it. BUT you do know that he wouldn't be there for the long haul. Hang in there and expand your friend base online since you may not feel up for getting out and meeting people (totally understandably). Possibly your cf team could have a meeting with your family and explain the seriousness of the situation and possibly they can be more supportive. Also telling someone I need this, this, and this (details) of a few ways each family member could help may make it easier for them to be of actual help. A generic call for help makes people think they don't know what to do and can't get started.

The experience that I've seen from local young adults and older adults that have had transplants were that it was rough to get through the transplant, but after they felt SO much better that they WERE able to get out, go on long walks, meet people and such. It's not the end of your life, it's the possibility of a whole new chapter of your life.

It's always hard to be alone, and I just want you to know you're not. Hang in there and please put yourself first.

 

[KrakenKrunch]

I'm 18 and never had a relationship, my family puts me down a lot and can be cruel sometimes, so I get the alone part. I'm Kind of healthy.. have really bad infections but am maintaining. I do have times where I can't walk around much at all. Oh and I have a port lol. I feel I can relate a little but maybe not. I don't have magic words of wisdom but I do know the people I know with CF myself included do know how to do one thing, and that's hold on and keep fighting no matter how shitty things get. Also we don't like a lot of sweets and need a fan to sleep. But we are there for each other and can lend an ear or kinda shoulder to cry on (Not literally because of the 6ft rule.) So if you need someone to talk to and vent with or just ask questions again I probably don't have all the answers but I might. I'm new to this website but if you can get in touch with me I'd be glad to help anyway I can.

 

[imported_MaggieB]

So sorry, sweetheart. Break ups SUCK. Can you still contact his family? I agree about the clinic perhaps helping you explain to your fam what's going on and what you may need. And I believe if you find the right person, they won't care if you're sick. I've been married for fifteen years, and when we first met, someone asked her if she wasn't thinking twice about being with someone with CF. She told them (I wasn't there), "It's honestly never occurred to me." Love is not blind, but it's accepting! Good luck! We're out here! and p.s. I flush my own port!

 

[smithhiles]

Being alone sometimes is good. It gives you time to think, to clear your mind and get a good feel for what you need, not what others want for you. Being alone all the time however is not good.

 

[windex125]

Well his timing really sucked, but you need to move on if he was that heartless to do this breakup now he is not worth a second thought of your energy. I am sure you are feeling at yr. lowest. But please find the strength to move on. Remember we must take care of ourselves first. I am older than you and have been married for a long time. Sometimes being alone gives us new direction to realize how much we must love ourselves first. I know you are missing his care giving esp. how he flushed yr. port. I have one as well and have a nurse do it for me once a month when not in use. What did you do before he took on such a big roll for you? Do you have any girlfriends to talk with? As for yr. family I am sorry they are not being supportive. but they are not walking in yr. shoes as the saying goes. and with pft at 25 it is extremely hard. Are you on 02 24hrs? I am very independent and have always been. I read a lot of self help books for encouragement over the years, pray a lot. Never really had a support system, my friends bring me their problems which I am finally starting to realize I have to cut them off. Have you thought of therapy? That helped me for awhile with some medication. Please try to be more positive, it's important for yr. well being and esp. once you get those new lungs you will be a new person for sure. You will have a whole new life ahead of you, than think of a relationship? I wish you well, this site is a great place so write when you need to. Pat/CF and a whole lot of other stuff...

 

[LittleLab4CF]

I am finally at an age where I've seen how relationships are tested. For some, the relationship doesn't even withstand the typical problems of life together. The stronger marriages are having a child or children and when parent's say nobody is in the slightest way, prepared for children. Many relationships break up over the added pressure and obligations that children bring.

Then there are relationships where that "for better or worse, in sickness and health" clause gets put to the test. I've never checked divorce statistics with regard to chronic illness but I've seen enough to never be surprised. I've known 11 couples where one developed MS or ALS. Eight couples divorced within five years and every one of them said they just weren't going to become young caregivers.

There were real and irrational fears that most couldn't verbalize. It was part anger that their spouse was was sick and some couldn't convince themselves the illness was real and nobody wanted to live in a helpless limbo of not really being able to help. The worst is nobody felt strong enough to be supportive. Most expressed a dread of melting into a less than helpful ball of sadness and greif.

A boyfriend bolting only describes half the population. More women stay as caregivers with a fallen mate, but there's not a large percentage. Most people, possibly like a nurse and boyfriend who declares his lifetime love is trying to convince himself that he won't bolt. I am certain if my wife and I went to my first lung transplant appointment, she would be the one needing oxygen. Sometimes the reality of something like a DLT hits when a trigger or timetable drives the reality home.

People josh and hustle about while preparing for a wedding yet when those vows are spoken, the bride and groom are like zombies mouthing their vows thinking I'm getting married, I'm getting married... Sometimes people feel they must be selfish and it's time to move on. This is cold and either your boyfriend has been living with a lie or he's terrified. I'd give it a little time and see where he's at. Just don't involve him in your transplant. You cannot afford to risk being jerked around again especially as the date nears.

I agree with the prospect you not only will have a stronger better feeling body but you'll be twice the catch once your strength and resilience return. I join in sharing my hopes you are on a wonderful transplant journey.

LL

 

[kemcloney3]

I'm sorry I haven't replied before now. Time seems to sneak up on me sometimes. I want to say thank you for all of your kind words. I also want to give yall an update. I've decided to move on! I have so much pure love to give that I don't think God wants me wasting it on someone who doesn't realize what real love is. I'm currently in the hospital. I got admitted on Tuesday. I was feeling pretty exhausted and short of breathe. My family is starting to come around. My mom actually drove me 3 hours to the hospital and then stayed the night! To many people this is normal but for me this is a first. She is also staying the night tonight. It's hard because I don't have my ex's family visiting me but I try to stay occupied. Anyway, I did PFTs on Monday and my FEV1 was 31%! I think that is pretty good for feeling so crappy. They told me I would have to stay in for 7 days but it may be longer if they want to do some testing for my lung transplant.

 

[LKBamberg]

Hi.

I'm 27 as well. I've dated several girls, (maybe too many

I also have this theory that the relationships have failed in one respect or another because of my CF. At times I was depressed and they couldn't handle it, other times it seemed like they were depressed because of my low lung function and life expectancy.

I don't know if this is the answer you are looking for, and it may not be right fore you, but I gave up the idea of finding "the one" a long time ago. These days my relationships are hard and fast, passionate and impractical, and many times overlapping (as I usually refuse to be exclusive).

Anyway, my point is cf can be a blessing or a curse, and sometimes you just have to work around it. I've learned to love fully but...honestly, temporarily. Feel free to reach out.

If you need help meeting people I've got some tips too!

 

[little debbie]

I am 49 but wasn't diagnosed until I was 42. I was married 21 years when diagnosed with 2 grown daughters and thought we were in it for the long haul. Couldn't have been more wrong! After 3 years of dr and hospital visits and falling really ill quickly, my husband decided it was too much to take care of me. Even tho I took care of him for 22 years, doing everything for him except wiping his butt! I became so I'll in March of 2012 that I was put on a ventilator and my daughters were told I had a slim chance of making it. I spent almost 2 months in ICU and my husband came once to visit which was only to sign some papers for an emergency trach if it was needed. After barely escaping that I came home on oxygen 24/7, a feeding tube and a new port to do home anti-biotics. Well 3 months after that my husband left and moved out of state. People say it's because he couldn't deal with the thought of me dying but I think he's just a coward. It was a blessing in disguise because I'm so much happier without him and enjoy my life so much more. I'm still on oxygen and the feeding tube and Iv antibiotics because of MAC, and a FEV of 38%, but I'm truly happy. My daughters have distanced themselves from their dad and I know it's crushing him because he was a good dad to them and close to them but oh well. He made his choice and now has to deal with it so oh well. You are young and have so much to look forward to and when you get your double lung transplant, your outlook on life will seem so bright. I'm glad your family is coming around now, things can only get better! I'm sending healing thoughts your way and hope you get that call for new lungs as soon as your listed. You will find that special someone. You have to kiss some ugly frogs until you find that prince and I'm glad you are now not wasting your time and energy on him! Good luck!