Friend with CF - how do I shake off the sadness?

[kilotron]

This probably seems ridiculous, seeing as I'm the lucky, undiagnosed one without CF, but I figured where else could I share than with a forum of people who understand the condition...

My best friend is 28 and has CF. She manages her condition well, exercises regularly, eats healthily, has her 'nib' when she needs to, and is currently pre-diabetic so is watching that as well. Being diagnosed as a baby, she has the most positive and glowing outlook to life of anyone that I have ever met, and has a fabulous attitude. In her words, she's lucky because she isn't affected by CF as much as she could be (I don't know if she plays down how serious her condition or her health is atm) and she happily answers any questions that I have about CF and we have often have a joke about the fact that I often remind her before she remembers to have her tablets when we eat together.
We've been very close friends for a year now and I find that sometimes I get into a sad, dark mood where I realise how serious her condition can become, and that she is likely to not make it past 60yrs of age, and all I feel like doing is crying, and giving her a huge hug and telling her how much I love her. Although of course, I don't want to remind her of her potential fate at the hands of CF, and I feel like my friends and family don't understand how close we are (and also how serious CF is) so don't have anyone to cry with. 99% of the time we have an amazing amount of fun, laughter and going on brilliant adventures together but sometimes (like now) I can't stop thinking about her diagnosis and feel completely helpless.
It's almost as if she's had years and years of counselling and support to help her deal with her condition and dealing with the emotion, and I've still got to come to terms with it when I get into one of these low moods.
How do I shake off the sadness for my beautiful friend who is always so positive, and usually if saw me upset would ask straight away what was wrong and try to comfort me? I don't want to turn to her for this, although I always turn to her for any of my other low points (as she does to me).
For those living with CF themselves - would you prefer to know if your friend was really upset on your behalf because of your condition? Or would you prefer them to continue being the live-every-day-to-the-max and stay positive type of person that they normally are?

And most important of all, apart from being her friend, exercising with her, and eating healthily with her, how else can I support and help her?

 

[beleache]

I would prefer honesty .. You said it yourself. She is up beat, takes good care of herself , etc. There isn't much more you can ask for than that !
You have be blessed to find such a awesome friendship with one another, so enjoy every moment. No one knows when they will die. You could be young & perfectly healthy & die in an accident.. No one is immortal (cept vampires lol)
Im not trying to downplay CF. It is a very harsh disease, but dont let it put a damper on a great friendship.
Im sure your friend has lots of uncertain moments about her life & what is happening w/ her health so maybe you could both share your feelings.. Its good to have someone to lean on, who better than your best friend ??
I was a late diagnosis so I didnt have CF hanging over my head my whole life. After i got diagnosed i was in hosp for a tune-up, on IVs , IVs caused kidney failure. After that I was living in fear for awhile but I realized that I was wasting precious time worry every day & not enjoying the time I had.
That was several years ago. I do worry from time to time but I have a great support system (thats where you come in <img src="i/expressions/face-icon-small-smile.gif" border="0"> ) Thank God for them .. I hope I have answered some of your questions.
Take care <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni

 

[MCGrad2006]

I understand what you are saying. Last year we lost my cousin "M" to cancer (and also my uncle, slightly different situation). Anywho...lately all I can think about is the kids (3 yrs old and 2 yrs old) that my cousin left behind. I think of how they will never know the wonderful person "M" was or just the general fact that they won't have a dad growing up. It absolutely hurts my heart for them.

I think that sometimes we let this sadness take over our lives and we can't do that. We need to live in the moment and enjoy what WE have been given. Being the one with CF, I think sometimes that is easier for me because I already know to do this every day. I don't take things for granted and if I can do something now, I do it because I know that later on in my life I may not be able to do that. With my cousins kids I know that they will be loved and cared for and I need to keep that in mind. I am NOT in any way saying that you don't "live in the moment"...I am sure you do and thats why you are posting here. I think that just being there for your friend when she needs you is going to be best for both of you. I don't personally like when people feel bad for me. I just like to know they will listen to me and hold my hand at any given moment.

Ask her questions. Educate yourself on CF and ways you can help her. See if there is stuff you can do for her. She will appreciate it, I guarantee it.

 

[lilmac7]

Well to break it down from my perspective and opinion, she is that way because it's all she knows to be in life. Looking from the "outside" of living without CF or health issues to see what someone with one has to go through then yes you will think or feel how you do from time to time. The important thing is to keep positive and do exactly what you seem to be doing, encourage and motivate to stay active. I mean it REALLY can make a huge difference and impact. I remember many times of going through bad chest infections staying in the hospital for antibiotics/treatments and many family members and friends would be all doom and gloom with me, not necessarily intentionally but I could tell in their ways and worse my Mom is very Christian and would even have her church people that I don't know come by to pray for me and stuff like that to the point that as I got older and it aggravated me more I eventually would run them out at times...lost track for a minute ther, but what I'm getting at is that at many of those times it'w when there's too much "doom and gloom" around me that I'd do my worst and lose focus on getting better and taking care of myself. Couple episodes it would take my uncle or other friend who knows me a bit more and the resiliant no excuse attitude of a person I am to come and have a chat with me to say "Man what the hell you doing in here so long, time now now you stop loafing around, get your @ss in gear and be out of here back in the gym and what not" - at at the end of it once I snapped back to reality and my moral and will to fight is back is when things turn around and I really get better. I am not the type to like being babied and have the "doom and gloom" BS around me. If I listened to it all and what the statistics of how long CFers life span is I'd be dead already and that's the reality - I literally am not joking here. In 2002 I was down to 23% lung function and really underweight, was to be evaluated for lung transplant or get the process started and I was told then that due to my state of health at the time even if they had a set of lungs for me then they would give it to someone else cause they didn't feel I'd make it off the operating table. I was also told people in that state they rarely see ever get their lung function up out of the transplant bracket (above 30% I was told at the time) and are able to go back to much of an active life. I would've taken that as "oh boy I'm done, there's nothing I can do" and just throw in the towel. they wanted my weight up and for that to give me a G-tube, I declined and said I'll do it on my own and prove you all wrong. After the 2 week stay in the hospital, I pushed myself beyond what they were trying for me to do with all the physio and even getting myself on the treadmill and stuff and by the end of that stay I was up to 33% lung function. Since that I took up weight lifting/bodybuilding competed in 4 bodybuilding competitions and am still here and kicking 10 years later. Bottom line I'm saying is I personally do not like the sad doom and gloom stuff but prefer the hard, encouraging, proactive, motivational, positive attitude. In my opinion that will get you farther and possibly break any statistics that might be out there. So with that said in my opinion you just continue to encourage, motivate and assist her as much as you can with keeping on top of things like being her exercise partner and things like that and by doing that you are not helpless but instead being a BIG help. That's my thought on it.

 

[Swallowtail66]

This is a hard one and I have lived in on multiple sides. My kids have CF so I know what it is like to love someone who is sick. I watched their friends freak out when they found out and/or during an episode of illness. My kids hate that. They want to be like everyone else, but they aren't. My oldest complained about her teacher's "sad" eyes after I told them how to care for her. They want normal and it is up to you to love your friend no matter what. That takes great strength. I rarely let myself wallow in the self-pity of loving someone who may leave me. My healthy relatives may have an accident tomorrow. There are no guarantees. My best friend had colon cancer and survived 5 years and then had non-hogkins(sp?) lymphoma and has survived that 5 years. She was one of the originalchildren given a special heart surgery and is the oldest living survivor of that surgery. She has had two valves replaced and has had more heart surgeries than I can count. Get the picture? I never know when she is going to go so I just enjoy every possible moment I get with her. Every time I see her I know it may be my last so I squeeze as much joy andlaughter out of it as I possibly can. When she goes I know I will have been a good friend and she will have left me very blessed to have known her. My own husband struggles to keep it together when I am sick or when one of my kids (his step kids) are sick. (Our original husband/parent failed to keep it together.) He has to rededicate himself and plant his feet on his committment and it isn't easy to do. Love makes you very vulnerable, but without vulnerablity, love cannotbring the greatest joy. Talk to a pastor or a counselor if you are depressed, but you have to choose the depth you wish to love. If you do not risk the pain of your friend dying, you cannot gain the joy of your friend living. When you take control of the choice, you take control of the sadness.

 

[LittleLab4CF]

Your looking for bad luck and knocken on wood. CF is as much attitude as it is presentation, or in other words severity. CF is both variable fron case to case and variable over time. A common thread in CF and other chronic diseases is the physiology of constantly fighting it. "What doesn't kill you makes you stronger" sounds good unless "it" wins. A number of CFers are dealing with intractable pain,constant immune battles etc. This causes our engines to run hotter, faster and seemingly boundless. Life is more real, defying death is almost symptomatic of many CFers, we live like there is no tomorrow. Don't rain on her parade.

My 10 year old niece came home from school, only to find her mother dead. For the next three years, family, including me, always found a way to turn conversation with my niece to her mother. Friends, and parents of friends consantly tried to elicit emotions from her. One day around the 3rd anniversary I was bantering with her about how thing really were back when. She turned and screamed she was sick of being hammered over and about her mother. I thought for a moment, apologized, and asked if I was so infuriating. She said, it is everybody and detailed the constant drone about her, her mother and her death... I worry which you needs the hug. Live in the present with her if this is where she wants to be. And I believe most CFers do want to be treated as normal. We know no other way life is,we were born with CF and aside from medical maintenance, we just want normal lives. Sometimes a sensitive friend is needed but I think you want to feel her pain when you can't. I suspect she already knows you feel sad, if you want to float a trial balloon, have her blow it up. I am guessing you don't want to hurt her. Question your motives first. Do you need this?

 

[kilotron]

Thank you for your responses so far. I think I didn't explain my questions very well.
I was trying to ask firstly, how do you shake off the sadness you feel on behalf of someone? (ie. she's still here, she's healthy, she's living life! It's obviously my sadness and mine alone that I need to deal with it. 99% of the time I'm fine, but sometimes I can't stop thinking about the reality of this diesease and what it may eventually mean for my friend. And so I get upset...).

Secondly, for those with CF I was asking if there was any place for a heart-to-heart with someone you're close with on occasion to talk about THEIR sadness over YOUR condition. I suspect not....

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>BelEAche</b></i> You have be blessed to find such a awesome friendship with one another, so enjoy every moment. No one knows when they will die. You could be young & perfectly healthy & die in an accident.. No one is immortal (cept vampires lol) Im not trying to downplay CF. It is a very harsh disease, but dont let it put a damper on a great friendship.
joni</end quote>
Thanks Joni. You're right, I am VERY blessed to have found such a great friendship with such an amazing person. And we will continue to live life to the fullest. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[kilotron]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>MCGrad2006</b></i> I understand what you are saying. Last year we lost my cousin "M" to cancer (and also my uncle, slightly different situation). Anywho...lately all I can think about is the kids (3 yrs old and 2 yrs old) that my cousin left behind. I think of how they will never know the wonderful person "M" was or just the general fact that they won't have a dad growing up. It absolutely hurts my heart for them. I think that sometimes we let this sadness take over our lives and we can't do that. We need to live in the moment and enjoy what WE have been given. Being the one with CF, I think sometimes that is easier for me because I already know to do this every day. I don't take things for granted and if I can do something now, I do it because I know that later on in my life I may not be able to do that. With my cousins kids I know that they will be loved and cared for and I need to keep that in mind. I am NOT in any way saying that you don't "live in the moment"...I am sure you do and thats why you are posting here. I think that just being there for your friend when she needs you is going to be best for both of you. I don't personally like when people feel bad for me. I just like to know they will listen to me and hold my hand at any given moment. Ask her questions. Educate yourself on CF and ways you can help her. See if there is stuff you can do for her. She will appreciate it, I guarantee it.</end quote>

Thank you for your post... Great advice!

 

[kilotron]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lilmac7</b></i> Well to break it down from my perspective and opinion, she is that way because it's all she knows to be in life. Looking from the "outside" of living without CF or health issues to see what someone with one has to go through then yes you will think or feel how you do from time to time. The important thing is to keep positive and do exactly what you seem to be doing, encourage and motivate to stay active. I mean it REALLY can make a huge difference and impact. I remember many times of going through bad chest infections staying in the hospital for antibiotics/treatments and many family members and friends would be all doom and gloom with me, not necessarily intentionally but I could tell in their ways and worse my Mom is very Christian and would even have her church people that I don't know come by to pray for me and stuff like that to the point that as I got older and it aggravated me more I eventually would run them out at times...lost track for a minute ther, but what I'm getting at is that at many of those times it'w when there's too much "doom and gloom" around me that I'd do my worst and lose focus on getting better and taking care of myself. Couple episodes it would take my uncle or other friend who knows me a bit more and the resiliant no excuse attitude of a person I am to come and have a chat with me to say "Man what the hell you doing in here so long, time now now you stop loafing around, get your @ss in gear and be out of here back in the gym and what not" - at at the end of it once I snapped back to reality and my moral and will to fight is back is when things turn around and I really get better. I am not the type to like being babied and have the "doom and gloom" BS around me. If I listened to it all and what the statistics of how long CFers life span is I'd be dead already and that's the reality - I literally am not joking here. In 2002 I was down to 23% lung function and really underweight, was to be evaluated for lung transplant or get the process started and I was told then that due to my state of health at the time even if they had a set of lungs for me then they would give it to someone else cause they didn't feel I'd make it off the operating table. I was also told people in that state they rarely see ever get their lung function up out of the transplant bracket (above 30% I was told at the time) and are able to go back to much of an active life. I would've taken that as "oh boy I'm done, there's nothing I can do" and just throw in the towel. they wanted my weight up and for that to give me a G-tube, I declined and said I'll do it on my own and prove you all wrong. After the 2 week stay in the hospital, I pushed myself beyond what they were trying for me to do with all the physio and even getting myself on the treadmill and stuff and by the end of that stay I was up to 33% lung function. Since that I took up weight lifting/bodybuilding competed in 4 bodybuilding competitions and am still here and kicking 10 years later. Bottom line I'm saying is I personally do not like the sad doom and gloom stuff but prefer the hard, encouraging, proactive, motivational, positive attitude. In my opinion that will get you farther and possibly break any statistics that might be out there. So with that said in my opinion you just continue to encourage, motivate and assist her as much as you can with keeping on top of things like being her exercise partner and things like that and by doing that you are not helpless but instead being a BIG help. That's my thought on it.</end quote>
Thank you for sharing! Great to hear your amazing results! I will continue to do so when I'm not in one of my rare 'sad moods'!

 

[kilotron]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Swallowtail66</b></i> Love makes you very vulnerable, but without vulnerablity, love cannotbring the greatest joy. Talk to a pastor or a counselor if you are depressed, but you have to choose the depth you wish to love. If you do not risk the pain of your friend dying, you cannot gain the joy of your friend living. When you take control of the choice, you take control of the sadness.</end quote>
Thanks for your post... that's an interesting way to think about it. I'm not sure if I understand what you're suggesting though... controlling how much you love a person?

 

[kilotron]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LittleLab4CF</b></i> Your looking for bad luck and knocken on wood.
This causes our engines to run hotter, faster and seemingly boundless. Life is more real, defying death is almost symptomatic of many CFers, we live like there is no tomorrow. Don't rain on her parade.
I worry which you needs the hug. Live in the present with her if this is where she wants to be. And I believe most CFers do want to be treated as normal. We know no other way life is,we were born with CF and aside from medical maintenance, we just want normal lives. Sometimes a sensitive friend is needed but I think you want to feel her pain when you can't.
I suspect she already knows you feel sad, if you want to float a trial balloon, have her blow it up. I am guessing you don't want to hurt her. Question your motives first. Do you need this?</end quote>
Your post was a bit confusing... but what I've pulled out from it was confirmation of what I'm already doing - living life to the max with my friend just as I would with someone else with a positive attitude and appetitie for trying new things and creating great memories - and not let on to her at all when I sometimes get down about her condition considering she is the one who has to deal with the pain and discomfort, and I'm the lucky healthy one... is that about right?

 

[LittleLab4CF]

It is so painful to watch and wonder why and how to deal with a loved one potentially followed around by suffering and death. "From the instant of our birth there are patterns...." If you want a dose, read the posts in this forum labelled "Reeling". What is worse, dying young or dying slowly? In my post, the mother of my niece was my sister. My sister died from serious, degenerative mental illness, specifically bipolar 1. She took her life. Not only was she my friend, I was my sister's keeper. I ran the risk of doing harm when I wanted to express my profound sadness over her illness. Hell, she probably had a single moment where her self denial cleared and then she took her life. Deal with your sadness with someone else. If you are her friend, and I am sure you are, note, can she walk, talk, smile, form intelligent congress, is SHE happy? If you must spill your feelings of sadness, talk about it before or after something she loves. Or maybe when she barfs up supper, you choose.

 

[LittleLab4CF]

I missed your direct question and considering I missed several words that would have made complete sentences and reading what you clipped. Yeah it is confusing and I am sorry. I wrote another to try and address your clarification concerns. You are friends, and CFers and family of CFers understand. Some speak for your friend, some empathize with your being close to someone potentially not long for this world. Either way it is a heavy weight. You have been moved to share your feelings in this forum. If you feel you desperately need to discuss your sadness, I suggest you plan your moment to talk about your feelings. Your chosen quote from my post emphasises we don't need this to drag on. Once you have picked your moment, talk, listen and then get back to being close friends. CFers have dealt with every permutation of genuine and guilt driven oral greeting cards. I made it to 62 and depending whether CFRD is next or whatever, my future is unwritten as is hers. CFers are often pumped on life because the disease process turns on the fight or flight body process. Reinforced with positive feedback, things couldn't be better.

Finally we have a working, genetic based cure for a lucky few. This hole in the dam promises a whole family of mutation specific drugs that will be available within nearly all CFers' lifetimes.

 

[MissSnoozer]

Hey there,

I just wanted to say that I think it's normal to be sad at times over a loved one's illness. I think it's wonderful you have each other's friendship. I would like to tell you that my husband is 55 yrs. old and was diagnosed at the age of 2. He has a classic case of CF, not a mild one at all. He works full-time and is doing well. I firmly believe with all the research and the new drugs coming out, the life expectancy is going up and up each day. Don't think about living past 60 as being out of reach for your friend. If she is doing her treatments and all she can to take care of herself, I believe living with CF past 60 is a real possibility. I am part of a group on Facebook called CF Wives. Perhaps there is a group for those of you who are in your situation. Feel free to Friend me on FB if you would like. I know just talking to others who understand CF is so very helpful.
Hugs!

 

[LittleLab4CF]

I quoted from an old John Prine song "Dear Abbey" in what has resulted in way too many posts, a record for me. "You're looking for bad luck and knocken on wood". Translation; your posts had a lot of bad things that could happen, or might be in the future. Just why is the unknown causing you to grieve? At her age, what has happened probably isn't going to suddenly spiral down. If you take out all that hasn't happened subtract all that has worked well, subtract her great attitude, and subtract your friendship, what is left to feel sad about. Do you celebrate someone's pregnancy with twins or cry over the potential risk? Which friend would you want to be?

You are grieving over her potential future. That is valid. How you express it, is your call. If you don't have enough feedback, listen to "Dear Abbey".

 

[Swallowtail66]

Basically, yes. You control how much of yourself and your heart you give to others. I am a school psychologist and sometimes I have to deal with situations that would rip me apart if I put all of my heart into the mix. Sometimes I keep part of me away so that I am effective in the job. With my friend and my loved ones, I choose to give them allof me. I accept the risk of loving so much that I can be hurt totally. That is what love is about. One day, the depth of my joy will comfort the depth of my sorrow. Knowing this, I can love with peace and abandon.

 

[Tisha]

Please realize that "the only condition for dying, is being alive"! That is, you are sad because your friend would "likely" not live pas the age of 60, but don't you realize that anyone at any age can die any time from anything? You have to live today, enjoy today, do your best to make sure you will be as healthy as possible all your life, but it's ridiculous to be worried when things are going well!
The best way you can support your friend is by not seeing her as a sick person. Don't project your negative thoughts on her! For me, that is a very important thing.
Stay positive!

 

[entropy]

lol, "I'm the one WITHOUT CF, and it seems to be affecting me more"

Give me a break...

 

[erock77]

I have a friend or two who have been particularly moved and saddened that I have CF. I think it's more of a mental and emotional disposition. Yes we're used to it, and maybe you haven't experienced close one's being sick or dying, or don't handle it "well".
I've had friends and girlfriends express that they can't believe I have a deadly illness and am functioning pretty well in life and emotionally. Personally if I had a friend who was visibly upset, I would want to know what was bothering them, particularly if it related to me. I think it's sweet that you're so worried about her. Everybody's different but I'd appreciate the openness. However, in reference to Littlelabs analogy, don't harp on it too much. Feel out how comfortably she is talking about it. I like when my friends talk about my CF, b/c I feel like it's this big part of my life that I can't discuss with regular people b/c it's a bummer topic and might sound like I'm complaining, or just seems like people are uncomfortably talking about it. Also your friend might get really sad about it but put on a happy face for the rest of society.

Also, you may just need to get this off your chest, it may be of benefit to talk Anybody about it. Maybe even a therapist if it's saddening you that much. I have a friend with CF who went through depression years ago, and he admitted the sadness and depression was actually harder than the CF in many ways. So don't blow off these feelings that are making you cry uncontrollably as trivial b/c you think someone else has a worse condition.

 

[erock77]

Entropy, I don't think he means it's affecting his life more than hers, he means he feels like it's taking an emotional toll on him and feels weird b/c she appears to handle it so well. Yes CF sucks, but so does a bunch of other stuff that people deal with.
Studies have shown that people who become seriously handicapped or chronically ill become really sad but about a year after the incident they're just as happy as before the incident. The same occurs with people who strike it rich, where the baseline for happiness adjusts dependant of the situaion. I'll admit I have moments of sadness or mostly aggravation about CF and the regimen & symptoms, but most of the time it's just part of my life and I'm as happy or moreso than your average Eric.