CF Spouses

Emily65Roses

New member
I got the idea for this from my cousin Jenna. She's a military spouse (husband Rich spent last year in Iraq), and had this thing posted in her LJ about the differences between military spouses and regular ones. Here's a link to it if you're curious, it's worth reading, I think it's cute and certainly true:
<a target=new class=ftalternatingbarlinklarge href="http://www.livejournal.com/users/frostypetals/31040.html
">http://www.livejournal.com/users/frostypetals/31040.html
</a>


Anyway, because of that, I've decided to copy some of the parts about regular spouses and write in my own CF responses in place of the military ones.

(I originally posted this in my LJ, but I linked Allie to it and she really liked it, and suggested some of you guys might too, so here it is)

<img src="i/expressions/rose.gif" border="0">

Other spouses get married and look forward to building equity in a home and putting down family roots. CF spouses get married and hope to share a home with their spouse for long enough to have a chance to put down family roots.

Other spouses decorate a home with flair and personality that will last a lifetime. CF spouses decorate a home carefully around the CFer's health. Nothing that will cause coughing fits, little or no stairs if possible. They make special room for nebulizers and Vests and endless pill bottles.

Other spouses say good-bye to their spouse for a business trip and know they won't see them for a week. They are lonely, but can survive. CF spouses say goodbye to their spouse to go on a business trip for a week, hoping they will be in the same health when they return home. They're lonely, but even more than that, they're worried. They hope that though they'll have their phone on in case of emergencies, that it won't ring in the middle of the night.

Other spouses, when something breaks or weather kicks in, know they can work together to get things done. CF spouses wi'll have to wake up earlier to get things done before work. To fix the broken appliance, or to shovel out the driveway. They know the CFer can't spend that much time out in the bitter cold air, especially working hard to do something as strenuous as shoveling. They know the CFer can't help with too much around the house. And though it's irritating and puts an unfair workload on them, they keep it to themselves because they know it's not on purpose.

Other spouses worry about whether their child will be class president next year. CF spouses worry about if they'll even be able to have children. If they're lucky enough to become parents, then they worry about what the precious children will do when the CFer parent dies young. If they'll remember their lost loved one.

Other spouses can count on spouse participation in special events... birthdays, anniversaries, and graduation. CF spouses hope to see those special occasions with their spouses still alive and well. Every new birthday is celebrated, because they made it another year. Anniversaries are celebrated because most CF spouses won't get any golden or silver wedding anniversaries. They'll be lucky if they get to double digits. They prepare for their child's graduation knowing that likely the CF parent won't be around. Maybe they make a tape with some words of wisdom before they die for the child to watch on their graduation day.

Other spouses pick up some NyQuil on the way home when their spouse is sick. CF spouses sacrifice much of their free time to add more physical therapy to the daily routine, or to help with IVs. When a CFer calls their spouse to announce they're sick, the CF spouse wonders whether this includes a collapsed lung, or coughing up blood. They ask when they need to be home to take their spouse to the hospital. They wonder if this is the beginning of the end.

Other spouses worry about being late for mom's Thanksgiving dinner. CF spouses don't worry about being late because mom knows there's a good reason. Therapy ran late, or they were walking too slow, or they had a coughing fit on the way out the door and had to stop and rest first. Then mom is happy to see them and tries to stuff their faces with as much food as possible, trying in vain to fatten them up. Moms even leave out a special salt shaker specifically for the CFer. (That one goes out to my second mom Louise).

And other spouses hardly notice when they can say "Happy 60th birthday." CF spouses mourn their spouse's birthday every year, knowing that that's one more year they missed out on.

I would never say CF spouses are better or worse than other spouses are. But I will say there is a difference. And I will say that no one really ever notices or appreciates what CF spouses go through. Because very few people are ever in that kind of position. Six months after the death of a CFer, family and friends are trying to get them to forget already, to move on. And they should know better. One doesn't forget about the missing half of their soul ever, let alone in six months. I can also guess that they never want to forget, even if they could. (That goes out to Allie and Jess).

And I will say, without hesitation, that CF spouses pay a higher price than even the CFer themselves. They suffer their whole lives, but it's all they ever know. Dying young isn't nearly as hard as loving someone who has died before their time, and having to live without them. Or having to explain to their children why their other parent isn't around. Neither is realizing the child was too young to remember their parent. And trying regardless to help them, because they should know how special their other parent was. Nothing is harder than losing half of yourself and trying to live the rest of your life, the next several decades, with such a big piece missing.
 

Allie

New member
I already told you this made me weep like a willow, but I wanted to thank you so much for writing it. It's pretty much the truth, condensed, and expresses every thought I've ever had regarding my marriage.
 
6

65rosessamurai

Guest
Thanks Em for the post! Allie told me about it while on chat, and I went over to the site to take a look.

With having a few sibling in the service, I'm familiar with what kind of life they have to spend. How surprised they'd be to see how CF spouses have to go through something a little similar, but yet more different.

However, during chat, realized how wicked my ex was!! she'd have me shovel the sidewalk if it snowed here!! At least I'm glad I found a spouse just as willing to stick with the problems a CF patient will endure!
 

Emily65Roses

New member
Shovel shmovel! If Mike tried to make me (which he never would, btw), I'd gain just enough energy to KICK HIM REALLY HARD and then go back to being too tired. Ahahahahaa. <img src="i/expressions/devil.gif" border="0">
 

Allie

New member
haha, we had an understanding. If I had to shovel the walk in -11 degree weather, he had to do the chili dishes that had been left out lol.

Being married to a CFer meant I was the only one who had a laundry room in the garage, because three stairs is easier to contend with than 15 or so. And hells if I was going to be the only one doing laundry lol.
 

anonymous

New member
While this story may be the unfortunate reality of many CFers and their spouse, I find it needlessly harsh and pessimistic - I'm not calling for false stories of bright and shinny optimism, but seriously... if I were a person considering marrying a CFer, this story might be enough to make me rethink that, and if I were a parent with a newly diagnosed kid, I'd be seriously depressed and bawling my eyes out.

Now, I'm in neither of those positions, but I am an adult CF, and I shovel snow, and its posts and attitudes like these that make people think I've got less than 5 years to live, and question my girlfriend for staying in a relationship with "that guy," and make it needlessly harder for me to live a semblance of a normal life... so...for all the stressed out girlfriends, boyfriends, fiances, and new parents, take this topic with a grain of salt, educate yourselves about CF, and realize that this thread does not represent every CFer.

PS... its threads like this that
1) give this site a bad reputation for being depressing and pessimistic (which I think is generally unfounded... personally I think its a great resource)
2) Make CFers fight with each other, which is just ridiculous.
 

miesl

New member
Wow - how about you sign your name, you coward.

OMG, seeing this post is totally going to make me call off my wedding!!!!! I can't believe that CF people can get so sick! I'm so shocked... I'm going to go cry my angsty tears of pain.

*gag*

Maybe it's not shoveling today. It's making the Christmas cookie trays to take to the party because the CFer is busy doing a VEST therapy.

It may not be reality for all CF spouses (and CFers) today, but barring a cure or car accident - this will be the truth for most (the further in the future the better). It's best for everyone involved if they walk in to this situation with all knowledge of what life with a CFer can bring.

That said - I have one to add.

Other spouses going on vacations worry about forgetting socks and how long it will take to get through airport security. CF spouses check 10 times to make sure enough medications are packed (with some extra in case the CFer needs to do extra threatments), and worry that airport security will detain them to inspect medical equipment.
 

Allie

New member
On the second point....you're starting it.

Having been married to a Cfer for 7 years, yah, it's not always like this. But you know what? It gets there, eventually. You're lucky enough that it's not yet an issue when you go up and down a flight of stairs, or shovel the walk, or whatever. And when Ry and I started out, it wasn't either. But Cf is progressive, and it speaks to some very real truths about what life is like, if not now, eventually.

If someone considering marrying a CFer couldn't handle the eventuality of what they would endure, I'd say it's better for both parties to get out now, instead of when it does become an issue. Because I'm sorry, it does. And it will. And if reality is depressing, at least I'm not deluded. I've been there, done that, and this is truth. You DO consider these things when you're married to a CFer.

Good Lord, try to think of it from another point of view. Just because it hasn't happened to you yet, doesn't mean it won't.

Well, of course you're going to call of your wedding, Miesl, before this thread you though CF was just a nasty case of bronchitis.
 

miesl

New member
And I just thought all those medications in the bedroom closet were for fun...

And the vest therapies every day were a recreational activity...

And the doctor visits, IVs, hospital stay, surgical scars, excessive mucus were...

Yeah. Right.

I think at the point of marriage - most people know what's going on. If they don't - they SHOULD be reading this post.
 

anonymous

New member
No.. you're kidding... CF gets worse? No F--ing way! I have an idea.. lets make it easier by having huge sob fests!! That will make everyone better!
 

EmilysMom

New member
And I thought Emily coughed all the time just to be a big fat pain in my a**, so I couldn't sleep at night and so she would clog my drains with all her disgusting mucus.
Apparently, I am mistaken !! ;o)
 

miesl

New member
Yeah, I'm not seeing the sobfest here.

It's rather theraputic to know that there are other people who identify with your situation in a way that most people can't.

Also - don't you have a name, Mr "I'm too good to have a log-in"

-Michelle (who has a name AND a log-in)
 

JazzysMom

New member
I have to say that the whole topic might be depressing, but it is a statistical fact that CF is a progressive illness and that most (maybe not all) of these things coul happen over time. My husband got a rude awakening this year. We have been together 9 years & although I had rough times in the past, I was able to return to shoveling snow (to the point where he didnt have to do any when he got home), mow the lawn, do the laundry, bath the dog etc etc etc. Well we found out that just because I can didnt mean I should. I know a lot of young CFers that really have no idea what to expect (I was just like that part of it being denial) and that makes it hard for them to display that to the spouse. Until you are going thru it all the stories or examples in the world cant bring it to enough of a reality for a full comprehension. Can it scare someone.....yes. Woud it scare someone....yes. Should that person (spouse in question) turn & run when the going gets tough.....No (not if the truly were aware of what could happen & if they are truly committed to you). Everything in Emily's post will apply to someone at sometime. One thing I would like to add is.....So many people worry about where they will be buried, CFers worry about how will they pay to be buried since life insurance is quite a rare commodityavailable to us!
 

JennifersHope

New member
I really hope this thread doesn't end up locked because ppl were being rude to each other.... I just hate to see that...

I could relate to the things that were written in the post, some of it is true for me where I am at now, and some isn't. I have to say I didn't feel real great about myself after I read it..I always feel so guilty about not pulling my share, or doing my half.. I watch my 63 year old father.. shoveling snow... and it kills me not to be able to help him..I watch my close family worry about MY EVERY COUGH...because that is what someone who loves you does.. spouse. significant other, family etc.....I could give a million examples of things that my family has to do because I can't....I hate how I am a burden to other ppl even now... I can't imagine how it is going to be in 10 years.... BUT I had the choice to read this post or not... I read.. and I am sorry I did.. HA.. but it was still my choice... why is it that the person who signed without there name was so quick to be rude?? If you don't like it don't read it and certainly don't judge the ppl who wrote it...

I do think the post was meant as a tribute to spouses and could also even be taken to the level of other family members too.. I don't think it was meant to be negative but rather it is a reality for most ppl....I have a lot of friends who are caregivers to Cfers.. and what was posted is a reality or will be one day.... I have a great deal of respect for the spouses and significant others who sacrifice so much of themselves to give a better quality of life to their loved one..I am glad that they are getting some recoginition they deserve it. I also think that it is an awesome way to contrast reality between anyone who is terminally/chronically ill with someone who has their health. Kind of shows the different priorities.


Hope everyone is getting ready for their Holiday.....

Love,

Jennifer
 

Emily65Roses

New member
I was ready to defend myself, but there's really no point. Others have done it for me (thanks guys! <img src="i/expressions/face-icon-small-smile.gif" border="0">). And they're right, by the way. It wasn't meant to be a sobfest. In fact, on my part, there were no tears. It was more a nod to spouses. Very often CFers get a nod for being strong, but spouses are commonly overlooked for all they go through. I wanted to acknowledge that.

Oh and Allie's right. "On the second point....you're starting it." No one started arguing until you came in with your cowardly lack of leaving a name rudeness. I'd at least respect your opinion more (though still disagree) if you had the balls to leave your name, thank you very much.

Eileen- I'm not going to call you down for disagreeing with me. lol As long as you disagree respectfully (which you most certainly did), I have no reason to get rude. I don't get rude unless it's warranted. And I have to admit, I teeter on that subject. Sometimes I think we have it worse, sometimes I think they do. It's so hard to tell! They're too different to really compare, but by nature I tend to compare anyway. Haha.
 
6

65rosessamurai

Guest
I guess it's one of those things where you really just gotta catch everyones Character!!

Take note, "anonymous" started after us "well familiar people" knew our borders, and never gave argument! To be honest, I shovelled snow as a kid for mom and dad, even went with my brothers to get some pocket money by shoveling neighboors driveways.

But, as mentioned, it is a degenerative illness, and I don't look forward to the one day where I'm not healthy enough to do such "outdoor chores"!

Besides, "anonymous", you've never met my ex!! (if you want, I'll introduce you, she's one heluva person!)

miesl, I can understand the medication and security issue, though!! I did have some medications, etc. on me, so was a bit nervous about their checks...I even got selected for a special search once, and that was extra nerve racking!!

Fred (also with a log-on!)
 

anonymous

New member
As a widow of a CFer, I relate to each entry in Emily's post. I don't think she describe marriage to a person with CF in a negative light. In fact I think her post is a beautiful tribute to CF marriages/relationships. Thank you for sharing this with us Emily.

Melissa
 

shauna

New member
how can one simple post cause so much controversy!!

i think that this is a lovely tribute to spouses of cfer's. i know there's so many things my boyfriend does for me that makes him so unbelievably special and this isnt negative, its the truth. its not like emily's going to go up to every 2nd person on the street and telling them this she's sharing it with us because we get it!

i think its great, and so true.

oh...and i didnt think it was meant to cause a "sob fest" at all!
 

Allie

New member
haha..I was going to defend this whole thing, and others had already done it for me, so I'll just say two things I think are relevant from it.

Something really positive you can take from this posting: We weren't born into this. We had no idea about pills, nebs, Cpt, etc. before you came into our lives. Certain sacrifices were made when I got married. No longer would style be my only consideration in buying a home. No longer could I think about my husband walking my daughter down the isle. No longer would I know I had someone to grow old with. So what is the positive in this? I could have walked away. I didn't. What does this mean? You. Are. Loved. Amazingly. Beyond your wildest dreams. If someone is willing to give up thier safety and security because they LOVE you, that's a strong, strong love. You are loved in a way most normal people never even approach. Think on that, if that isn't positive, I don't know what is. Think on how much you are loved, and have warm fuzzies all day.


A small thing in defense of the 'spouses have it harder than Cfers' arguement. Which is a fool's arguement, and we could piss on about it all day and never reach a conclusion, BUT.....When Ry took his last breath, his battle ended. Mine didn't. In the respect that I have the grim prospect of living 40-50 years without Ry, I selfishly think I have it harder. Okay, maybe not harder, but longer, most certainly.

okay, this whole thing probably makes no sense, but whatever.
 
Top