Question about your own Mortality

[JennifersHope]

Lately I have been really thinking about my own mortality.....I guess it came about when I was writing some of my life goals out... and one of them was to live longer than my dad so he won't have to burry me. It was not out of pity that I wrote that, just it really is one of my goals.... It got me thinking, how abnormal my life has become, to be 33 and have that goal just strikes me as sad. I guess seeing it in writing was a trigger for me to some emotional reaction..

I was thinking about all the medicines I already take for my heart, way more then the average 90 year old..and I am not kidding..

Then I was in a Harmons store and I saw two old ladies.. (no offense to the old ladies) but they were on line to pay the same time as me.. One of them was complaining about how her back was bothering her, the other one was saying that she has to pee all the time..... and how she has to take six pills a day..One of them turned around to me and said, "Honey don't get old it is horrible, you have no idea how lucky you are to be young" .. and I instantly started to get tears in my eyes and said, " Don't worry I don't have that as an option to get old"

I wanted to yell at them, which is not normal for me at all, Normally I would think of how blessed they were not to know the burdans that so many ppl carry around.
But this time I was outraged...

I think it may be a normal progression of thoughts, remember I was not dx till I was 29 and since then was dx with two other major diseases and many other more managable ones. Well if you guys knew me well, you would know that I always have a very delayed reaction to everything.. I can almost "disassociate' from a situation for a long time then Blamo it hits me...

So all that to say, How is it that you guys cope with your own mortality? I know we always have to be hopeful but in reality, ( not feeling sorry for myself) but it reality... Chances don't look good for me to live a long time.. and I am just realizing that now..

So what do you guys do to deal with that?

 

[Emily65Roses]

Just FYI when people assume and give you that "one day you'll get old" stuff, I always make sure to tell them I'm not. One older woman (50s or 60s) once complained about my tattoo, telling me it'd look all funny when I got old. I told her that wasn't a problem, as I wasn't going to get old. And she looked at me like I was nuts.

I have my moments like that too. "Oh god I'm 90, and have some health problems." OF COURSE YOU DO, YOU'RE F***ING 90!!!!! Try having those same problems when you're 20, okay? Shut up, seriously. That drives me nuts. But you have to expect it. *shrug*

I don't know that I'm any help. Just want to tell you, I also lose my temper (or almost do) with people. Even my own grandmother drives me nuts sometimes. She's 91 (or 92?) and she b*tches about her arthritis and all this other stuff. I'm not saying that her problems don't suck. But she was married for MORE THAN 50 years, healthy all her life, had two kids, many grandkids. She has no place to complain, in my annoying opinion. I'd kill to have these problems when I'm 60, let alone 90. I don't know. It makes sense that it drives us nuts, people complain and they tend not to know what they have. But that's true of anyone.

 

[candiebar76]

<div class="FTQUOTE"><begin quote>" Don't worry I don't have that as an option to get old" </end quote></div>
I think this is probably a very normal response. My neice (17) (my oldest sisters daughter) just found out she has no female hormes and has Turner's Syndrom, she will likely never be able to conceive our even develope as a woman plus she is 40% deaf and will likely have kidney and or heart problems from the TS. Then there is us facing the possibility of our 6 yr old son having CF. Our sister in between only has 2 children one that had asthma when he was a baby but at 7 has outgrown it. She says things like it isn't that bad. Why do you guys look at the negetive part of this. So what our niece will never have breasts or her own kids, Maxwell might have the same fate as far as kids who cares. Um, hello, this sister is of course the one that had a very large chest and was in a C cup at 85 lbs. and how can you say that about never having kids? We have not had that fate so how would you know the devestation. My oldest sister and I are going through something she doesn't see. Kmnowing that it is likely that if Max has CF and what my niece has we will likely watch it take our childrens lives. How is it not that bad? See we all have our doom & gloom moments. I know I did not answer the question completely but I hope I shed some light on the subject!
Candace

 

[Lilith]

I'm not sure how to reply to this, but I'm gonna try...

The only thing I can tell you is probably the most cliche thing...live now, for what you have. Basically from age 13 to 17, I cried my eyes out thinking about my own death, about how I might be better off being alone so that I won't leave a husband/children behind by themselves, etc. But (and I say this in all honesty) I've thought about it so much I've become numb to the idea. I thought about the family I have now, and the wonderful loving man I met (which I wouldn't have if I'd kept my old mindset). He loves me no matter what, and just hearing him say that every day is enough to get me out of bed. My attitude now is if I die, I die. But I had a great ride while I was here.

And just to touch on the old lady thing, I was actually laying down in my bed the other night thinking of ways that CF is a blessing, and one of them is that we won't have to get old. Yeah, we may take as many pills as the average 90-year-old, but at least we can still remember to take them, and we remember our own family's names and what we had for dinner last night (most of the time, lol). I would rather die young then to grow old and shrivled, with little to no memory of those around me, let alone what day it is. I watched my grandmother pass that way, and not to say that all people end up that way, but I wouldn't even want to be given the chance.

So, in my opinion, we have it a little better than the average person, even with all the crap we have to deal with.

 

[candiebar76]

<div class="FTQUOTE"><begin quote>I was actually laying down in my bed the other night thinking of ways that CF is a blessing, and one of them is that we won't have to get old. </end quote></div>
Sorry had to get this out. You forgot to mention not going back into diapers.

 

[Lilith]

HAHA! Yes, that's another good reason <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[EnergyGal]

I think this is a very interesting topic. My memory of CF and its possible struggles came to thought at the age of seventeen. I decided I was going to kick butt and do all I have to do and then some so I would live as best and as long as I could. After going through transplants and facing death twice, I dealt with it pretty well. I often had similar thoughts to Lilth. My Grandmother till this day (I told her this bothers me numerous times) says, you should live as long as me. I know she means well. It does not bother me when I am feeling well but when I was sick and dying oooohh boy. She just doesn't get it and she does not care how I feel even when I have told her many times. she thinks because she means well then that is ok. People need to respect others if they want to get along. She mentioned this comment when she complained to me about her age and her aches a few days ago and when she said, you should live as long as me, I said, I will and she shut up. I believe it is like her little test to see if I am in a good mood and if she can push my buttons then I must be well. Old people are very manipulative. when I was younger, I never thought I would live to Forty and I am almost 47.

If I think about death, I do not spend too much time on it, I remember to live well and do what I want. So the topic or thought about Death gets me going in the right direction. When you feel well after a good transplant, the thought of death seems to fade away. I know that my life might not be so very long but when I feel well, I can really live in the moment and now dwell on the future too much. I spent too much dwelling on what if and now I have the chance to live well. That is what I mean.
Risa

 

[Debi]

Jennifer, I'd like to say that I don't think about it, but the truth is that sometimes I do dwell on it. I've learned that when I have those times, I just indulge myself in self-pity until it gets boring and then I move on to more productive thoughts. Generally never lasts more than an hour at a time. I used to try to put those thoughts out of my mind by trying to talk myself into a positive frame of mind. That never really worked. The thoughts just lurked until the Pollyanna phase wore itself out. Now I let myself rant and rave awhile about the injustice of it all, mentally plan a memorial service, think about all the things I'm going to miss. Then I move on to the great things going on in my life in spite of it all. My family, my friends and my work bring me so much joy that I can't stay in the sad place very long. Jennifer, you, too, have so much going for you. I know you've been going through some rough times physically, so it's no wonder you feel emotionally drained. It's okay to feel that way. Just remember what a great nurse you are, how proud you've made your family, what a wonderful friend you are.

It's not easy, but when I hear other people complaining about what seem to me to be relatively minor medical issues, I try to force myself to just let it go. Right now, while I'm on oxygen, most people who start complaining about their cold or sore tummy or sore leg stop in midsentence when they realize the nasal canula is literally my difference between life and death. Sometimes I think of that as my gift to them. They stop whining a lot sooner after they see me!!

 

[anonymous]

Look at it this way, while it sucks because it's you/us/me/someone you know, it has to be someone. it's never nice for anyone to go through anything as miserable as CF, or MS, or parkinsons, or be told they have 3 months to live at 30 due to cancer or something similar. But these things happen. X amount of the population will have to come down with these things, it might as well be me or you or sally sue down the street. it's all just a genetic roll of the dice and exposure to environment and diet. Who really wants to live to be 90 anyways? Or even 70 for that matter?


I hope you cheer up and I will keep you in my prayers!!!!!!!!!!!!!!!!



Garyhairycheese

 

[Allisa35]

I guess I've never really thought about that deeply. I've just always had that "you won't live past 20" engrained in me since I was a child, that I just knew I was going to die young (I'm 35 now). I don't really worry about dying. Actaully, there has always been a part of me that is thankful that I won't live to be an "old" lady. I don't want to live to be old and alone. This is probably just me being selfish, but I don't want to live longer than my husband. He is my life, aside from God, my sister, brother, and best friend. I don't have a big family to fall back on. Most of my family members have passed on. I think I am afraid of being alone more than I am of dying. I don't think I would fare well without my husband. I know he would miss me too, but I think he would do much better than me as he is more of an independent person. But, of course, I say this while I am still fairly healthy. Maybe if my health declines and I get closer to that point, maybe my thoughts will change. Other than my husband, few family members that I have left, and my best friend, there is really nothing else keeping me here.

 

[anonymous]

Not signing in on purpose...
My biggest fear is that my boyfriend (with cf) will die at a young age and I (without cf) will end up freakishly healthy and live to be 95. Of course, I hope he lives as long as possible, as I cannot imagine living without him. However, I already have a plan in place in case this happens. If he goes first, I will throw myself into helping others for the rest of my life. I will go to other countries and help kids and the disabled. And maybe adopt a whole bunch of kids. I figure that will a) distract me b) remind me that others have it much worse and how lucky I was to have him for as long as I did c) make me feel he is proud of me and d) keep me busy until its my turn and I get to see him again. Oh and e) give my life purpose and direction, cuz I know I will feel lost.
I do believe that cfers live a full life in the time they are given. (Although that won't make it any easier for me!)

 

[JazzysMom]

I dont dwell on the what ifs of the future too much. I have my moments, but I am not afraid of dying. I am afraid of suffering & what that will entail for my loved ones. As far as the elderly.....I look at them & wonder what its like to live 20/30 years with the meds & pains that we have now. I think many of them earn the right to bitch. After dealing with such problems for so long, wouldnt you want to. Hell I do it now & its only a fraction of the time! As far as the "honey dont get old statement". It pisses me off each & every time I hear it. Some days I respond instantly & other days I realize that these people have no idea that I have a life shortening illness & that their comments tear my heart out! As far as how I handle my own mortality......I just take it one minute at a time!

 

[JennifersHope]

Thanks, you guys are always so willing to lend support to me and I really appreciate it a great deal.. I could relate to so many of the posts.

I kind of feel the same way about getting old. I really have nightmares of me being old and in pain and miserable. I think that comes from the fact that I have so much pain already but also, being a nurse and watching so many old people who scream in pain even if you lower their stretcher down because they have such severe back pain, or I see an older person come in from the nursing home and their mouth has layer upon layer of crust in it, because no one helped them brush their teeth or even bothered to wet their lips.

I guess seeing that everyday, wears on me. I see older ppl lose thier minds, with Alhizmers disease, (which runs in my family) so I know the benefits of getting old suck to a lot of people.

I do have fears of that as well, like being thristy and not being able to get myself a drink, or having dry skin and wanting lotion on it but not being able to communicate to get it.

I also have bad joint pain now at 33 so I can't imagine if I lived into my 60's how much pain I was in, By then I will have been on steroids for 30 or more years, can you imagine what my bones would look like and the vessels in my heart?

So In spite of knowing all these things, and knowing that "getting old" is probably overrated. I would still have like to have that as an option.

BUt I guess for now, I think all these fears help me to be a better nurse because I always make sure my patients that can not fend for themself have clean, fresh, mouths without any crusty's, and I am alwasys trying t to give them fluids to drink and reposition them so they are more comfortable.... I guess I am hoping that I reap what I sow some day.... and besides those ppl are someone's mom and dad that I have in my care, so I try to remember that and treat them as if they were mine.

Jennifer

 

[anonymous]

I get annoyed with DS's grandparents -- my own mother has always been a bit of a hypochondriac and I get so tired of her complaints and basically feel that she's wasted her life all these years going from one doctor to another. Heck, I'm 40 and can remember being 3 and worrying about my mom being so sick. Yes, she's sick -- she suffers from depression and gets her attention from going to different doctors, talking about her aches and pains and meds while meanwhile, I'm dealing with a 3 year old wcf.

Then my FIL - -constantly complains he can't do anything because if he does, he gets sore joints after he exerts himself. He's about 100 pounds overweight -- again, get some exersise, quit eating so much garbage. He's also had chronic sinus problems, had surgery a few times, but prefers complaining about how stuffed up and sore he is -- but refuses to go to the ENT. Hasn't been there for 5 years and is miserable. I just wanna yell, suck it up people! Do something about your problems instead of complaining. Your grandson doesn't say a peep during his 4 CPT treatments, doctor appointments, lab works, meds! Liza

 

[Diane]

Jennifer,
The only thing i can offer you in the way of advice is tell you what i do when i am feeling the way you are. I myself have very deep thoughts sometimes that scare the crap out of me . I tend to go for a long drive ( i love to drive) and just listen to the radio and think it all through. I tend to remind myself that i can only do the best i can do to help myself and if that doesnt work, theres nothing more i can do because i did my best. I also try to come up with a plan of action like...... maybe i'll walk on the treadmill more often, or not skip any treatments for a length of time, or try a new routine with my treatments, and maybe that will make a difference. Usually anytime you actively take a role in trying to change something, it makes you feel better about a situation and less helpless. There are times i also just sit and cry and let it all out and get it over with and try to come to some sort of understanding with myself that, this is the cards i was dealt and i am stuck with it..................... I also think about something i write on this board recently about my landlords son....... A perfectly healthy guy in his 30's who lived by the book, no drugs no smoking, and he is now dieing of cancer that started out in his lungs and spread to his brain. As crazy as it may be, when i think of that, i dont feel so bad about myself or my situation anymore. Sometimes it helps in some sort of odd way to remember that someone out there has it way worse than we do. Life isnt fair, and it gets proven time and time again. We just have to roll with the punches because there really isnt anything else we can do.

 

[anonymous]

I have just sort of stumbled onto this site, and HAD to reply to the woman who listed her 'plan' for if/when her boyfriend w/ CF dies before her because I so completely relate. I am a wife(without CF) of 7 years to a 29 year old CF, and he is truly the ONE for me. He's it - my everything - I want nothing else in this world but him. I simply pray that the years, however long they may be, that I am left without him on this earth pass quickly. And I too have thought that after he passes (hopefully like in 50 yrs - i still dream) that I will simply go to a needy country and throw myself into helping others in more need and just living out the rest of my years adopting children or serving in third world countries. I find it so interesting that another female out there in love with a CF guy feels the same way! Perhaps it's not just for the distraction, but definitely also for your reason "c) to make him proud of me". I just know that's what I'll care about it until it's my turn to meet him again too.
Know there is a kindred spirit out there & I pray we both, by some miracle, don't have to face our plans.
Elizabeth - Houston, TX
28 year old wife of CF

 

[katyf13]

Elizabeth- how interesting we both feel the same way! I also hope we never have to put our plan B into action. That was me, Katy. ;-)

 

[tessa55454]

Sometimes I want to jump time and be old right now. All the questions and lack of answers would be resolved like did I make it past 50, did I bury my parents, could I really make it to 50?

If I make it to be old or not, whatever old really is, I plan to act like I am 80 or 90, because you know...in CF years I am middle age. When I am really at my end in life, I am going to find a pointed cane, sit on a wheelchair, be a f%*#ing crazy women and I am going to enjoy it. But, I will smart and have all my stuff together, living wills, will, trust, everything, because at least CF it is highly unlikely we live to an age that dementia or alzheimers occurs. I will still try my best to have say in my life till the last breath.

For my partner, I want to give her the ride of her life until I die. All the fights and petitions with insurance companies, my dead-cold stubborness, whatever money I can leave for her, and many stories to tell after I am gone. And to make sure, that I want her to be with someone else if she wants to. I want her to have rocking great sex until she dies, just as me.

As far as coping. Well, it always takes time. It is easier if you are healthy and more bitter when you are not. IN the meantime of the high and lows I am get feel pity and have my little pity party, until I get sick of me be pitiful. I think you have to, because you have to mourn the things you will miss, but after the pity party I start embracing the things I have.

I have to say, I am doing my vest right now, and a wod of phlegm flies out of my mouth, and I am like where did it go, this is so disgusting. Ever have that problem??

Back to point. oh..when people are lame and complain about their little issues, granted it is of course in their perspective and I try to be humble about it, but it is when they get to know you if they do, you just don't hear some of those things as much and it puts them in check real fast. It is interesting how fast. Then the others who are around my age, I always think time, give it time and one day they may get it. Or they may be the percentage of the population that doesn't get it and they will come around next time having more fun then this lifetime. I think more synically when the person REAL is obnoxious or completely annoying and lame.

Far as old women, sometimes I just put them in check. Sometimes not and let them live in the glory of ignorance. It depends if I like the or not. Sometimes I sit and think, I am going to be you. You rock as an old woman, if I get there or not, I am going to be just like that.

I think the scale tips form pity to being aggressive hitting many emotions in between. I think it is good to feel the arrange of emotions, give me all the right to be more crazy when I get older.

Tessa 28 w/cf

 

[fugikitten2087]

My Juinor Year I had to do a dreams and Goals project for Pysche and it had this part for the future. 5,10,15.20. and 25 years from now. I didnt want to do it. I asked the teacher not to make me do the 20 and 25 years at least. Because I dont want to think about my life span or mortality I like being content to just be. Well he pushed the issue. In 20 years I wouldve been 47 and 25 53 at the time. I knew I would be lucky to still be living. So I told him that and told me to "optimistic and realistic". So I called my Dr.'s office for help and it was like a slap in the face to hear the words "Hun, with the way your health is now you wont make it there. But I'll help you." So they helped me out. We had to read it out in front of the class. The one were I was 53 was basically me dieing. THe Social worker and I couldn't think of any other way to do it that would be realistic since it was already something out of a sci fi. I started crying and ran out of the class. For a few weeks I had issues with my mortality..I was angry and bitter and I hated the fact that my freinds were so healthy yet treated their bodys like crap. Over time I got over it. I think we all go though thoose phases and vairous things trigger them. It's sad to think but no one wants to die. Any more I figure it cant be too bad because every one does do it. lol.

 

[Chad]

I dont deal with mortality very well. I think about it all the time the fact I wont grow old. Maybe I will but i highly doubt it. The fact i think about it all the time consumes me. Ive actually been the CBT (cognitive behaviour therapy) over it. it worked for about a year but it creeps its way back. especially after being really sick in the hospital. Im almost 30 now, so even the possibility of getting married and raising a proper family is slipping a way. Its rather depressing. BUt just one more thing to add to the list of ***** we have to deal with having cf.