Dearest readers,
Now is my turn for Q and A. As many of you know, I struggle with my husband understanding CF - and trying to get him involved. He won't go to websites, he doesn't read this blog. So I ask you now, please, post an answer to my question. I might copy and paste some of the answers into an email to my husband, so you don't have to write directly to me, but rather just pontificate on the subject :) (pontificate is a good word, no?)
So, what is the one main thing you would want or expect someone who loves you to know or understand about CF...what do you think or wish people would "get" about this disease. If you read and don't have Cf, maybe what is the one thing you wish you could know or understand about CF?
Honestly friends, I am at my wits end with feeling that I get no compassion around here, so your answers might be able to shed light in ways that I can't.
17 comments:
I wish people would understand how tired I get with CF. My best friend couldn't understand why I didn't want to hang out a week after getting out of the hospital. I was on an IV schedule that meant I couldn't get 8 hours sleep all at once. I was also working. Even day to day stuff is tiring. After 8 hours at work I barely have the energy to make myself dinner. My apartment gets cleaned room by room because I would be dead tired if I did the whole thing at once. Laundry is the bane of my exhistance. Its so much work!!! I wish people would understand that I just don't have the stamina of someone without CF. I have ration my energy so that I don't run out half way through the day. So when I say I'm tired what I really mean is "I am SO exhausted that I may just fall over. I am tired down to my bones, even taking a shower is too much work so leave me alone to recharge!"
I would want people to understand mainly two things 1)things aren't as easy for me as it is for others.....ie when friends call around neb time wanting me to take off somewhere, I can't take off that easy because I can't skip the nebs but te treatment takes 2 hours, and I spend 4 hours a day doing treatments it's not just some random thing. 2) That I don't want sympathy, I want understanding, when people complain to me that they have a cold but then I ask for help with stuff like the laundry and they say, well it's just laundry..... yeah it's just laundry but it's heavy to me and the fact that i can barely breathe doesn't help and I'm already tired ALL day. Sometimes it seems like if you don't complain all day people don't take you serious but if you do complain then you're whining.... you just can't win!
Pondering, Shannon. I'll post something in the next few days if I come up with anything. I wonder if I can get my husband to write something to your husband? lol Maybe we would both get something out of it ;) .
Andee
I'm not totally sure what to say either. I have definitely gone through a similar thing with my husband though. When we met I told him about the CF but played it down as I always used to do. I *never* wanted anyone to think of me as sick, especially since I wasn't that sick back then. I could still do pretty much whatever I wanted, unless of course I was "sick, sick" or in for a tune up. But, I'd always bounce back so no one (including me) really needed to worry too much.
When I hit 30 yrs old, my health started declining rapidly, from high 70% range down to 36% in one year. You'd think everyone's perspective of my health would have changed at that point, but it really didn't. Eventhough the numbers were all waaaaay down, it still wasn't visible or understandable since I had always bounced back before.
From my POV, I think my husband was compassionate about it when it made sense to him or maybe even when it was convenient for him. For the most part, it was much too strange to digest, especially since when I felt a little better I could still do grocery shopping, take the dogs on a walk, laugh, and basically still just be myself. It's gotta be difficult for someone who doesn't "feel" what we're feeling to get it like we get it. The getting it part is that we're in a progressive chronic illness situation that can be very heavy on our shoulders and spirit.
Although we don't want to have everything hit the sh!tter, it most likely will and well before anyone wants it to happen. On the other hand, we have to prepare for it mentally and if we can physically be kind to ourselves in the meantime (do our treatments, not overdue activities all the time, listen to our bodies, stay away from sick people, etc etc.) that could very well PROLONG our lives here with loved ones. That could be true for anyone, but it's that much more magnified with a CFer. Once you're gone, you're gone, and unfortunately we see it happening with our fellow cystics here much too often! It's just a reality that we need to deal with.
One last thing....I can always talk your ear off, sorry. My husband did *finally* get it and ease off me about working more, and the whole go, go, go thing once I got sick enough. That is what it took for him, unfortunately. At the same time, I'm just so relieved that has gotten it now, b/c I have a new set of priorities and schedules throughout my days. I can't physically do what I did when we met, and he sees it. I think he 'got it' when my nurse told me that I should start thinking about 'slowing down'. Of course that day would happen, and it did. I'm just happy that something sunk in, better late then never.
Another thing my nurse told me, in relation to shedding light on the situation for my husband, was that in her experience and belief, Cfers are the hardest working people she knows. She said they work themselves into the ground partly b/c they *have to* try and prove to everyone that they're NOT lazy. No one likes the label of being lazy, especially when they're NOT but just dealing with health issues such as CF. That's a tough vicious circle.
My best wishes to both of you!
I wish people would understand that I can't do everything I was once able too. It's very hard to have a life when you work 40 hours. There is NO way I could be a mom of 3 kids if I worked what I work now. I can barely take care of myself.
I can't come out every weekend. I can't hang at the bars. I can't stay up to the wee hours of the morning. I can't work all day and be expected to socialize after. I can't drop everything and run off to the mall at the drop of a dime.
It gets frustrating when people harp on me about my social life, or lack thereof. Or when they tell me I am a loner and don't like to do things. I used to LOVE to do things and I still do. But I can't. During the week I relax after work since I get up so early and on the weekends I like to relax so that I am not completely exhausted for work. Or I do laundry, clean, food shop, run errands. That doesn't leave time for socializing. It's a never ending vicious cycle.
since I was diagnosed after I had already started dating my husband much like you I think it makes it harder bcause I was 'healthy' when he met me......so my thoughts on that.
the first one was 'grossting out'
I started coughing more because I was doing treatments my hubby would be 'grossed out' and one day I just pulled the car over and said "look this is NOTHING compared to what its going to be, I will do this and much much more very day of my life and I need you to understand that, if this is not ok than later will not be ok and I understand its gross it is to me too but if you cant get over it let me know NOW because I need to not feel like I am disgusting you"
our next big one was help/support
and that was long drawn out over a long time but what I really want him to understand is that when I dont say anythign is wrong he has no idea, when I tell him waht is wrong its whining, I may say things alot but that is because I want him to know what I am going through and understand if I am not up to something etc or if I need extra help, sometimes I wish when I said I didnt feel well he would start trying to help me more or let me take a nap. If I ask/demand a nap then its given but its not the same. I dont want him to be a mind reader just more helpful during hard times. When he is sick I bend over backwards to do everyting, I realize I am sick more often but a portion of that would be so helpful...sometimes I get it and sometimes I dont.
An example I have is I was telling my husband how horrible I felt one winter and it was just sort of like 'yep' and then the next day I started coughing up blood and was hospitalized and THEN is when he 'gets' it and does all the things I wish he would do when I tell him I am sick....its like he needs visible proof. Same reaction when I get a fever, the I am sick otherwise I am just 'cf' or something.
I liken it to being pregnant bcause for alot of guys they are sort of excited when you are pregnant but they cant 'see' it so its not real and thye arent really much into 'doing' things for it like we are and dont have that bond made like we do its only when they can SEE something they start to 'get' it at least that is how I feel my husband is.
I have been very honest with my huband that we want to ahve a second child and tehre is 100% no way I am willing to work full time if this is the route we take. This has been a long time talking for us because he doesnt understand that but I just know I will be spread too thin. We have made drastic sacrifices to pay off all of our bills to ensure I could do this but he still doesnt like it and is just 'placating it' and truly hoping it doesnt come to pass and I sitll work full time. I wish he understood the value I put on having time with our children and that it is EVEN MORE important to me because i dont know how much time I will have with them. I more than anythign wish he valued that, I can always pay someone to help me around the house.
There is more but that is it for tonight. Take care and I wish you the best.
A couple great books that have helped me are 5 love languages and proper care and feeding of husbands as well as men are like waffles women are like spaghetti.
take care
sorry that is Nicole i.e mom2lillian cf2chat
Hi Shannon, I've been dealing with some of the same things you are - reduced capabilities and endurance because of CF. I was only diagnosed with CF recently (Mar 2008), so in many ways my CF was even more 'hidden'.
It took my husband a lot longer than me to come to grips with the diagnosis and really understand what it means. Actually, we're still coming to grips with the whole CF thing. He doesn't want to hear about it, talk about it, read about it or anything. He just has to ignore or maybe internalize things and mull them over himself to come to grips with something. A full 9 months after my diagnosis he didn't even want me to mention CF in our Christmas newsletter we send out with the cards. It will be going in there this year though. I on the other hand need to talk talk talk about it. I need to read all those medical journal articles, google all the terms and watch videos online of lung transplants. Hubby walks ot of the room when they show any grossness or guts on CSI, NCIS or heaven forbid House! Thank heaven for the online CF community. :)
At one point we finally did sit down to discuss our differences in dealing with my diagnosis. I was interpreting his silence as not believing, not worrying, not being engaged. He thought I was pushing it way too much, making it the center of our every conversation etc... We finally agreed to each cope with things in our own way. I've since come to realize that much of his reaction (or lack thereof externally) was out of fear. Not because he wasn't interested or was in denial, or didn't care, but because of that stupid male ego, macho, show no emotions thing.
I think one thing that really was an Ah Ha! moment was just this past weekend. The home health care company delivered Oxy for me (for use when I exercise) but also a pulse Ox meter. I had just run upstairs for something, then Greg and I went downstairs to the basement together - that's where I keep my exercise bike and the concentrator etc... I was demoing him the pulse Ox meter and my sats (normally 94) were at 89 after one flight up and 2 down. His were 99. OK, so whatever, he totally didn't get that. But what he did notice was that my heart rate was over 100 and I was clearly out of breath with just that little bit of exertion. His was in the 60s. Maybe since he can relate, feel, experience heart rate, it drove the point home. Whereas reduced oxy sats on someone who has never experienced it is not something you can grasp. I don't know. But his reaction was one of those eye opening moments. I think I had some flippant reply to him at the time like "what did you think I was faking this stuff?" Oooh, that was mean I know, but still... With CF you don't *look* sick. But as your lung function drops it just permeates everything.
..continued...
We all have lives and priorities and things that have to get done. It gets to the point where some of those things have to go un-done. That puts the burden of those things on our families. Usually they're the mundane chores that nobody wants. Unfortunately work often takes the prime time. Other functions, volunteer work, even activities that were once hobbies and fun just go undone. It's hard to give up those things permanently (that would be admitting CF has won that round) so we try to hang on as best we can to them, even if it sometimes means skipping them more often that we'd like or should. But it's a daily struggle to not give in. I mean we have to keep up this can-do attitude in order to keep up with our treatments and everything (for me the big bug a boo is exercise... Bleugh!)
It can be hard for someone who doesn't have lung problems to understand the fatigue. Couple that with the fear of the next exacerbation, or catching H1N1, wondering when our regular lung bugs will flare up again and wondering just how long we'll be able to go before thinking about the *T* word... CF is like the big elephant in the room. It's there, we know it's there, we try to pretend it's not there, but sometimes it just squishes us up against the wall and we need to regain enough energy to push it away again.
I hope that some of this rambling will be useful...
Haha...my response is too long, so I'll have to break it into two :)
Shannon:
First of all, I'm sorry that you are going through this. I know that relationships are hard in general, and then CF adds a lot of complexity to it.
For me, when I first met my husband, he was pretty secretive about CF...secretive is not really the right word, but it's the best I can come up with right now. He didn't really want to talk about it and he didn't want me to talk about it. I did some research, but honestly there wasn't a ton at that time that I had access to (circa 1997). So, we both just sort of lived in denial. I mean, we knew he had CF and he did regular CF stuff, but we didn't talk or think about it too much. We were young and in love...Actually as I think about it now, I am amazed at how I just accepted things as "normal" and went on. I mean, he would cough up cups of blood and then we would go out to dinner. Strange, I know.
Anyway...as things have progressed, I have gotten more involved with CF and that has fundamentally changed things. I am not sure exactly how that happened, but I think that I stumbled upon the websites and then Gess wanted me to get more involved, and the two just sort of converged.
Now, I am super involved, know more about the latest research than he does, etc. And things have changed a lot.
For what I know that helps, one thing is just the whole lung function thing. For me to think of my husband as only having 43% of what his lung function should be amazes me. I don't know how that would feel, but I imagine it would really suck. In fact, I can't imagine how he is as active as he is with that.
We have been through lots of discussions and even fights about CF and how one of us is feeling about stuff. And what has worked for us now is to just be really blunt and direct about this stuff. We talk about it and say how things make us feel. Sometimes I will upset Gessner by something that I say and I have to just say "What did I say that bothered you." And we discuss that and sometimes realize that he was being overly sensitive or that I was just not paying attention, or we were in bad moods, or it was a Tuesday.
cont...
One of the things that you mentioned was about his knee and diabetes. The only thing I can say about that is that comparing illnesses or issues is probably never a good idea. I know that there are times when I feel like nothing that happens to me health-wise warrants complaining because my husband has CF. But...then I realize that no matter what, it sucks to be sick. So, while my flu is not even in the same solar system as CF...I can still feel crappy and complain some. If I try to tell myself that I am not allowed to be sick or complain about it, that just makes me annoyed because I feel like I have to overly edit myself.
If your husband is telling you to stop complaining about your CF, well I'm not sure what to say to that, because that just seems very insensitive. Do you know if he feels like you complain too much? (Not implying that you do--just thinking "out loud"). There are times when it seems like my husband is complaining a lot, and I will admit that it gets annoying and I have probably not always responded in the best way. But I do try.
Man, I am long-winded. Maybe what you can do is to ask yourself what "getting compassion" would look like to you. Then talk to your husband about that. Here's an example that we actually had. I want to have kids, it no secret, and there are times when I get really upset about not having kids. Seeing pregnant people can sometimes be one of those times. So, we are in a book store and there is a pregnant lady in front of us rubbing her belly and it made me incredibly sad. I thought "Man, I wish that Gess would notice that and how I feel and make some gesture." There have been times when that would have made me more upset, wanting Gess to read my mind and know exactly what I needed. But I realized that was not reasonable of me. So, a couple days later I say "Remember when we were in line at Barnes & Noble..." and he was like "Oh, yeah, the pregnant woman..." Which told me that he had actually noticed. So, I told him that if he noticed something like that it would be nice for him to just squeeze my hand or something. He had no idea that I would want something like that, but understood when I told him. So, maybe if you just tell your husband exactly what you want/need, then he might start to understand. Maybe not, but might be worth a try. I know for me it is hard to say "I want this" or "I need this"...not sure why it is so hard, but it is. I don't like having to tell Gess that I want or need him to do/say something. But, it has really helped us.
The bottom line is that there is a lot about CF and how it affects Gess that I don't understand, so I need him to tell me.
Anyway...sorry for rambling so much and really sorry if it doesn't help. Seriously, email me any time or have your husband email me if you think that I can help in anyway.
Lisa
Okay...and I still have more :)
Reading the other posts, and it really is hard for us non-CFers to understand how tiring CF is...I mean I really don't understand it and I don't think that there is a way that I can truly appreciate it. I mean, I know that when I am sick, I am tired. But the whole concept of being like that every single day is really hard to comprehend. So, for that, we just have a lot of conversations about it and when in doubt, he has to tell me.
And I will confirm that it is harder when things change. It is hard for me to know what I am supposed to do now that things are more difficult for Gess. I know that he doesn't want me to limit my life, but I also don't want to "leave him behind" so that is something that we struggle with. The things that we do together are changing. We haven't hiked in a couple of years, for example. But I still want to hike and he says he still wants me to be able to. So, I do other things with him and hike solo or with friends. So, its a compromise and again, a lesson in talking and talking and talking about things.
I want people to understand that cf makes me tired and that staying well rested keeps me healthy.
I want to be told they appreciate everything I do to take care of my cf.
I want direct interest in my symptom development. And interest in medical breakthroughs.
If a person does not have these interests/concerns then it's hard for me to believe they really love me.
I'm sure there's more but those were the issues that were top of mind.
My husband gets it, but the rest of my family doesn't. I don't just have CF, I have other medical problems too--and they just can't understand. I argued about the lack of understanding with a friend once. She yelled at me because I got snippy. I juts looked at her and said, "I relly hope you never have to deal with cystic fibrosis. But I HAVE to; my life isn't horrible but it is hard." She then did some research to find out what I was talking about and she doesn't talk to me anymore.
I wish I could tell you what to say to help him understand, but I don't even know what to say to people myself. I just wanted to post and give you my support...
Hey, it's monster from cf2chat.
I wish people understood how unpredictable CF is. I can have a long run of good days and be practically normal and keep up with my peers, and then out of nowhere get totally slammed with some infection and my productivity drops to nothing. I think it is this inconsistency that a lot of people have a hard time understanding, and why so often when we are sick it can be mistaken for laziness or lack of integrity by others.
As far as my husband goes, I make it a point everyday to tell him, "I'm tired today because I don't feel well." Usually just once or twice in an assertive way gets the point across. Because he doesn't feel how I feel, it is easier for him to 'forget' about it. I think it helps to have that daily verbal reminder that I can't do as much as he can.
I was thinking about this and wanted to add one thing when I saw he has diabetes and knee issues. While you cant compare apples to oranges there is something ot be said for this. Are you supportive of his disease, do you read up, do diabetes walk, help count carbs, help prevent keto-acidosis when he is ill etc?
I once told my nurse I felt like such a loser coming in sick and being at 90% lung function and 150lbs and seeing others who were "truly" sick. She told me this is NOT true. Whatever you have experienced is the worst you have experienced end of story if its bad to you then its bad and this made sense.
She said she first got mad when her friend compared a minor outpatient surgery to her double breast cancer masectomy & reconstruction but really her friend was trying to relate not to say they were =....maybe that is what he is trying to do?
also one thing my husband has told me is that he has to relate the way he can and that he cant come to sites and chat and read all about what might happen he needs to deal with it as it comes but he has had talks with me and he does understand where this will go and what will happne. He is a 'take it as it comes' guy and not a 'read/plan/ and obsess about everything' guy so for him this sort of thing doesnt work, it would depress him.
anyway just additional thoughts I realize they arent completely coherent but I have to get off I hear a certain kiddo calling
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