does anyone else have dark thoughts???

welshgirl

New member
i have dark thoughts directly relating to my son having cf. i feel i want to unburden myself but i don't want to depress anyone . does anyone know what i mean ?. i am outwardly cheerful but i have niggling , dark thoughts that bother me. even when i am happy, deep down i have a sadness that never really goes away since joe was diagnosed with cf. am i normal?
 

Ratatosk

Administrator
Staff member
I hear you. DS's CF is always in the back of my mind. I worry about him, worry about the future. Sometimes I just want to crawl back into bed and not deal with the world -- feel sorry for myself. Helps to have a good cry once in awhile when nobody is around. Think my worst times are if he's feeling a bit under the weather -- gets a fever, cold or a cough. Or we go to CF clinic -- wondering if we'll get more bad news.

What helps is seeing his huge grin! He's such a happy go lucky little guy. The other night he sang part of a song and then stopped, and asked "you like that song mommy? Does it make you happy?" Just made me sooooo happy.

And there's always someone who is worse off than I am. Friend of mine's granddaughter has CF and last March their newborn son (no cf) was diagnosed with cancer. Neighbor boy has SMA -- he's 4 and already using an electric cart -- eventually his muscles will stop working alltogether and he'll require round the clock assistance for feeding, breathing...

L
 

welshgirl

New member
oh i totally understand that there are people far worse off than our son, he's not even that sick , since he was diagnosed (30 months ago) he has only been in hospital twice for iv's. he does have psuedonomas and was on colomycin for 3 months he hated that but he did it without too much fuss. joe is very like me in his nature <img src="i/expressions/face-icon-small-blush.gif" border="0"> so i know we are in for a rocky ride as he gets older. if i seem depressed , i know i am not!!!( i have had post natal depression so i know all about that!!!!!!) it 's the not knowing how everthing will "play out" that gets me . there are some older people on this forum with cf that i look to for inspiration and they really do help to give me hope for the future . take care<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

Jenica

Guest
Hi, Janet. I think what you wrote is probably true of most parents. I am optimistic by nature, and I really do have such hopes for my daughter's future, but from time-to-time, the gravity of the whole thing bubbles up and I get extremely emotional. I knew from the get-go that CF is a progressive disease, what the median life expectancy is, all that stuff I had read, but still the first time I said "incurable disease," I completely lost it. I remember driving in the car with my husband and my older daughter, and we had to pull off to the side of the road.

I understand about not wanting to burden people, because I tend to think that way too, but try and reverse the situation. If your sister, cousin, friend was going through something this enormous, would you feel burdened if she wanted to open up about it? I'm always aware of not making Ellie's CF the biggest topic of conversation every conversation, but when something is really weighing heavy on me, those who know and love me recognize that, and want to listen.

I think it is really important to be positive and upbeat, but you can't be that way all of the time. CF is a big deal. A huge deal! To pretend it isn't just is not real.

If you don't feel comfortable talking to your family or friends, it might be worth it to look into a family counselor or something. I think a lot of insurance companies will cover this kind of thing, for sometimes just a copay. And of course, there is always this forum ... I've taken comfort more than once from another parent here who has gone through what I'm going through.
 

farmfamily

New member
Janet
I totally relate to what you are saying. I've been living with this for 14 years. Sometimes when people say"you handle it so well" I want to scream "No, no I'don't. I just act like I do. Do I really have a choice?" Sometimes all it takes is the sound of a certain cough that makes my stomach feel like it has a huge hole in it. I know that feeling is always there but only surfaces sometimes. I just try to remember my faith is what gets me through, and the saying I've heard on this board before.

Don't let the worries of tomorrow rob you of the joys of today.

Terri
Mom to 3
17 w/o CF, 14w/CF, 9 w/CF
 

Jane

Digital opinion leader
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>farmfamily</b></i>



I totally relate to what you are saying. I've been living with this for 14 years. Sometimes when people say"you handle it so well" I want to scream "No, no I'don't. I just act like I do. Do I really have a choice?" Sometimes all it takes is the sound of a certain cough that makes my stomach feel like it has a huge hole in it. I know that feeling is always there but only surfaces sometimes. I just try to remember my faith is what gets me through, and the saying I've heard on this board before.



Don't let the worries of tomorrow rob you of the joys of today.



Terri

Mom to 3

17 w/o CF, 14w/CF, 9 w/CF</end quote></div>

You have said it perfectly Terri!

Janet, I know exactly what you are feeling too. Little fleeting thoughts that haunt you. I think its normal for a parent of a child with illness.
Any of the moms can PM me if they ever have a need to talk. We moms have to stick together.<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

JRPandTJP

New member
Janet...I know exactly what you are saying! I will be completely in the moment with my kids, enjoying a typical day, taking in the way they just hugged each other and then bam...a horrible thought about how short life can be...better take it in you just don't know what will happen...soemthing like this. You know what I do...I tell that voice to shut the F&*K up and take a hike. I literally tell it to go away it has no place here. When my son weaned it got really bad. It was as if all the protective mommy feelings went right out the door and I had nightmares the whole nine yards. I felt I needed to talk to someone and made sure to find someone who would not just put me on some drug to suppress the feelings. I worked through all the guilt and pain I felt, the trauma of the hospital stays, the letting go of control....and it has really helped. THey used some emotional release techniques (Rapid Eye Movement Theraphy I think it is called) and it helped me to unlock the fears and move past them. They gave me a couple other tools to help get out of a thought (a tapping technique). It was really hard but I feel much better 4 months later. When the thoughts come, and they do, I feel better prepared to get out of them.

One thing that also helped is to go into the thought and make it bigger and even more ridiculous than it is. Like yes my son could die and my head might become so enlarged that I can't fit through the door and than I will be stuck there all day and maybe even starve to death. ANything that might make you laugh since it really is all imaginary thinking. WE do not know the future, we can not know the future for any of our kids. Ihave to remind myself that Julia is just as vulerable if you really want to think of it...we all are. Being in the present moment as much as possible is what helps. For me, taking up something new or voluteering my time to a non-CF related cause helped. Painting, gardening, music...they all help us get lost in the moment and tend to our feelings. Hope this helps...my heart goes out to you.

Warmly,
Jody
 

EnergyGal

New member
Hi Jody

You mentioned that eye movement technique. I think I know what that is. Did you learn EFT? that is what is sounds from your description. Just curious
<a target=_blank class=ftalternatingbarlinklarge href="http://emofree.com">http://emofree.com</a> right?
 

icefisherman

New member
Hi, I'm 23 w/cf and saw this post and had to read. I find it interesting to hear things from the other side. i am the first in my family with cf. I hope what i'm about to say doesn't offend anyone, but i thought i would throw my opinion out there.
There is nothing wrong with the way you are feeling, but remember to put your child first. I'm sure you do this anyway, but what i mean is be careful about being upset about thier sickness. Your child will be looking at life through different eyes than you. You are probably worried that you won't see your child grow old, or have your grandchildren, and this saddens you. Knowing that they will be missing out on life.
Your child grows up knowing he/she has cf. it is hard, especialy in the teen years. This is when we start to understand what is really going on. Then we accept it, and this doesn't mean give up, it just means we know what is and isn't possable.
Now having said that hopefully you will better understand this next part. Two things are now in play.
The first thing is the child may sense or possably see the parent getting saddened over something he/she had no controll over. Now we both know it's not the childs fault, but how else does the child comprehend this. this is very hard to deal with growing up. When i was about twelve i was going through some things ( ok i was snooping lol) and i found a letter my aunt had written to my mother when i was diagnosed at age 5. I basicaly said that she was so sorry to hear the news, and that i would be in thier prayers. All i could think was, why is she sorry. am I a dissapointment to everyone. and that bring me to the second part.
the second part is that the parent is upset because the child can't be what they had planned for him.her. Now niether of my parents have ever said anything to make me think they were dissapointed, but i know this isn't what they had planned for. it's kind of like the pressure some kids feel when their parents or siblings are great athletes, and it just doesn't come to them naturally. nobody loves them any less, but they still feel like they aren't living up to the standards.
The hardest part of cf for me to deal with has been seeing the people around me hurt. I understand things now, but it made me very depressed growing up. Most of the people i talk to agree that cf is harder on the parents than it is on the patients. this is our lives and it's all we know.
I hope i didn't upset anyone, but rather help you understand that your child (even if he/she is very young) is probably dealing with this on thier own, and that as a parent the best thing you can do is accept it so you can spend more time making memories, and less time upset. I wish my mother would accept things for what they are, and stop being overly optimistic. I guess what i'm trying to say is that when you children are old enough, talk with them. Not about thier lives, but about yours. ask them what they think about thier life, and tell them what bothers you strait up. they will be more adult than you might think. they know they are sick, and they know they won't live as long as others so why hide your feelings. they will probably feel beter about things, and understand thier childhood much better.
Well i'm hesitant to post this but here it goes. I don't mind negative feedback so feel free to vent if i upset you. i would rather hear your opinion than have you hold things in.
Best of health to all of you familys
Ben
 

LisaV

New member
I think it is ocmpletely normal to have "dark thoughts". I think you'd have to be completely in denial not to have them. It's true that I came to this a spouse - not a parent - so I will never fully et the parent side of things. I suspect that other parents will be your best source of support.

But as a spouse I am drawn to AmyKins tag line ""True love is neither physical, nor romantic. It's the acceptance of all that is, has been, will be and will not be". I think that all of those who love folks are helped by striving for the kind of love that "accepts all that is, has been, will be and will not be"- so that means accepting the progressive nature of CF even tho' we don't know exactly how that will play out for our loved one - and the dark thoughts come from our knowledge that it is proressive - that in some ways on any given nonexacerbation day that this might well be "as good as it gets".

I was touched by the post by the CFer who said that the hardest thing for him was knowing how his loved ones hurt because of something he couldn't change. I think that was the hardest thing for my husband. He was hurt by how CF limited him - how it made him suffer - but even more so by the losses it caused the rest of us. I know I tried to accept those losses as they occurred without blaming him - that I tried to sepearate him from his illness and to be angry at the illness and not at him, but I think no matter how hard I tried that he still felt responsible somehow. I wish now that I can done more individual counseling so that I had a safe place away from him to mourn my losses (because CF caused me losses too) more fully. We tried to mourn our losses together to be open and honest, but I really didn't ever let myself fully mourn because I didn't want him to see that much of my hurt. Since I didn't ever fully mourn I couldn't have been there for him as completely as I would have liked to I would think. Hard to share our intimate thoughts about the disease and it's impact. In all honesty there was no one I would rather have grown old with. How could I not know that and how could he not know that I regretted that wouldn't be true (and how much he regretted it). As a parent you much wish your kid was healthy enouh to be guaranteed to live the full lifespan and outlive you and even take care of you when you are old. How can one be honest (and therefore intimate) with each other if we don't share these feelings at some time when our loved ones are adults? The best we can do is to make it clear as possible that our anger frustration is with the illness and not with the person who has the illness.

Can you make a spearate mourning time each day or week for you? Preferably with a counselor, but if not some time alone for you. Some time when you can zero in on what you had hoped for for your kid, what you think you'll loose as a mother from having a kid with cf rather than without, on what your afraid of experienceing in the future (like watching your kid suffer etc)? I think maybe if I had acknowleded my losses mre fully to myself and given myself a real separate time to mourn that maybe the dark thoughts wouldn't have intruded into the good times quite so much. On the other hand maybe that is wishful thinking maybe knowing the shortness of it all - the progressive terminal nature of the illness - the future disability to come - maybe that just means that the sweet lovely times are always oing to be a bit bittersweet just like they are when a loved one is on hospice. Best to remember I guess that each and every person we love is just a "loan" from the gods not a "forever" gift.

I wish I had some real answsers.
But all I can say is that you sound completely normal to me.
 

Ratatosk

Administrator
Staff member
When DS was diagnosed shortly after he was born, a doctor gave us some advice that sticks in my mind to this day. Do not spend more than 15 minutes a day feeling bad about CF. Don't dwell on the diagnosis. Enjoy your little boy! He's a normal child who just happens to have a genetic disease that requires some extra treatments and meds.

And when we first brought ds home and I'd be rocking him as he slept -- I'd start to cry a little bit and then a voice in my head would say "suck it up princess". Enjoy the moment. You've got a sweet little boy cuddled in your arms. He's FINE, don't worry about the what ifs, just enjoy him -- that baby smell, the way he snuggles up to you... L
 

angelas

New member
This is my first time on the site. My daughter is losing her battle
with CF and is 23. Even though you think for their whole life that
you will be prepared you never are! Just I guess wanting to talk to
someone who has gone through this. I have dark thoughts every day
from praying for one more day to praying for her pain to end and it
to be over for her. We have hospice which helps some with the fear
must not much. She just wants some comfort as to what happens at
the end and I do not know what to say to her.<br>
<br>
<br>
Mom of Crystal 23 w/cf and Ricky 16 w/o cf
 

LisaV

New member
angelas,
I am so very sorry.

I have not gone through it with a child - just with a husband, but I will gladly share what I know if you would like to PM me.

You say "She just wants some comfort as to what happens at the end and I do not know what to say to her". I would speak with hospice about what you can say to her. I can tell you that the docs were able to make my husband quite comfortable and he did not struggle for breath or anything like that. He was conscious until very late in the process and able to exchange loving looks. There was no panic or pain.

I am keeping you all in my heart.
 

welshgirl

New member
ben,i thought your post was thoughtful and not at all upsetting . thankyou! angelas, i hardly know what to say, i'm so sorry for you and your family and especially your daughter , i will be thinking of you. take care<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

angelas

New member
Just knowing that we are in everyone's thoughts helps so much. It
also helps to read all of the posts from the teens and adults who
are living the same life we have for so many  years.
 

LisaV

New member
I think, Ratatosk, that your doctor gave you good advice when he said "Do not spend more than 15 minutes a day feeling bad about CF". And if you can limit your dark thoughts to only 15 minutes and do that without having dark thoughts intrude into happy times then you're "home free".

However, if dark thoughts <i>do</i> intrude into the happy times then I would turn that around so that you carve out at least 15 minutes a day (in private) to really focus on all the dark thoughts - really "get into it" - no good thoughts allowed. (At least this is a technique that has worked for me in reducing dark intrusive thoughts. And I remember Christopher Reeve saying that after his accident he spent an hour first thing each day feeling his really nasty feelings about being a quad - and then left that nasty emotional place and got up and on with life.)

And if 15 minutes a day focused on dark thoughts doesn't work, up this to 30 minutes, or stay with the 15 minutes a day and add an hour (50 minutes) a week with a good therapist.
 

Jane

Digital opinion leader
Interesting to hear from Ben about how the kids see us dealing with their disease. I can see what he means with my kids. My kids always look at us to see how we react to news from their doctors. They can tell by our faces if its serious, good or bad. We tell them what's up outright, most of the time, so we can process things together (but not always). A few times Josh has apologized for making me sad or worried. (which makes me feel so bad).

I'm not exactly sure what Janet meant about "dark thoughts", but in my case its not really like dwelling on the doom and gloom, its more like fleeting quick images and ideas that I can't control, they just jump in and out. Its unnerving when that happens, but I don't let it bother me, I just acknowledge them and let it go.
 

welshgirl

New member
jane, my thoughts are like ,i think it was you who mentioned about having braces, what's the point etc. that is exactly what i thought at the time. also when we fly back from holidays and the aeroplane makes a creaking sound or something , i will think to myself , if this plane goes down i won't care, we are all together and it will all be over with ( i going to get bashed now!!!!!!!!!!!) would be a shame for the other passengers though!!!!!!! those kind of thoughts, i told you they were dark!!!!!i never think that when we travel by train or car though, weird!!!!! i'm hovering over the reply to topic button, oh well here goes!!!!!!
 

Jane

Digital opinion leader
Exactly the same here, not always, but like I said before, just split second thoughts like that.

I would never, ever tell my kids, or even my husband. Its nice (maybe not the right word), comforting to know someone else thinks this way sometimes.
 
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