Coping with frustration

[letefk]

I was responding to Dollbaby's post about Josh's sinuses, and it
felt good to hear someone else feeling as frustrated as I was.
 It seems to me that coping with this kind of frustration is
at least as important to the long term care of my children as
managing their meds, but I haven't always been as successful at
that as I would like.  They were diagnosed almost 2 years ago,
and although I "pass" most days as a well-adjusted mom,
coping successfully with CF, I am still frustrated, hurt, and
angry, and some days, I just wonder how the hell I am supposed to
stay sane through all this.<br>
<br>
Perhaps it is just me, but I suspect not, and I, for one, think I
would like to talk about that...<br>
I don't have anyone in my life that lives this reality.  So
what I want to know is, how do each of you come to terms with the
bad stretches... the times, like Dollbaby mentioned, when despite
all you do, your child still gets sick... again.  Or you
lose perspective and just don't think you can handle it, or can be
patient enough, or ...<br>
<br>
Laura<br>
<br>

 

[JRPandTJP]

For me knowing I am not the only one struggling in this life is helpful. During good stretches I try to surround myself with beauty. I turn off the TV after they are in bed and read a positive book, practice my guitar (which always makes me laugh), write to you all, paint, whatever it is that takes you to something beyond CF, kids, duties, worrying. During the tough times, I try opening myself to the smallest of joy, even if it was something like a beautiful sunset or a good meal. I try to hold onto that and be thankful that even in the midst of illness, daily routines and all that comes along with being a mom, their is still 1-5 things that happened that day that are good. My daughter and I say a few positive words before bed and pick 5 things that we are thankful for.

I'm remembering when we were in the hospital for the second time with Ben. We had been there for a week and he was turning around. It was close to my birthday and it was a beautiful fall day. I felt as if I was watching the world go by as I try to take a 1/2 hour break from the hospital activity. We had just found out he had CF and I was relieved, angry, resentful at the universe, scared, devastrated, yet something else was there too. In the midst of my entire life being torn up there was a peace within me, a place that knew I could do nothing but love him and care for him no matter what that meant. It was weird, but I remembered tracing the shadows of the leaves that were on the page I was writing on about the deep pain I was feeling. It was the worst day of my life, yet these damn shadows were so beautiful, I had to trace them. When I look at that page now, I'm reminded of how pain/sadness is ultimately followed by joy, in an endless cycle. Winter is always followed by Spring. Each has its purpose and its own beauty.

Talking to a trusted therapist from time to time helps also.

 

[jonandlindsay]

There are times when I feel like I just can't take any more of it... this wasn't the life I had always imagined for myself.... this isn't the way things were supposed to work out. In the worst moments I have found myself questioning every decision I've made in my adult life... because ultimately, where I chose for my life to go led to Ella and her CF. But in my clearer moments, I realize this really is where I'm supposed to be. I'm really not that religious these days, but I do believe everything I've ever learned, every job I've ever had has prepared me for this role I play for Ella. When I think I just can't take anymore I take a deep breath and think... this is my job... being the best mom I can be is what I need to do. Yes, life is hard. Yes, things get bad... but Ella needs me to be strong. I need to be the best advocate, roll model and supporter I can be.

I also spend one morning a week volunteering in the Cystic Fibrosis Chapter office here in Portland, OR. It has really given me an outlet to make a difference. There are a lot of people out there fighting for our kids and working to make things better. I figure I ought to be doing whatever I can to make their jobs easier. Through this volunteering I have also had the opportunity to attend a number of different fund raising events, and it is truly amazing how many people there are out there willing to help out and donate hundreds and hundreds of dollars for people they don't even know. I only started doing this volunteering about eight months ago, and it has truly made a difference in my outlook. I think it's a combination of really helping and making a difference, getting a little time away (I'm a stay at home mom), and consistently interacting with people who really know about CF and the challenges I face.

Also, I had a pretty rough time dealing with Ella's diagnosis for the first year or so, but then I had a close friend deliver a still-born baby six weeks before it was due. Watching and helping her through that awful time has made me a better mom. I may have it rough with everything CF I deal with, but I can guarantee that my friend would rather have a flawed, sick baby rather than no baby at all. Plus right now is such a promising time with all the research and advancements that are being made. The Foundation truly believes they are five, maybe ten years away from making CF a nuisance to live with. That fact, by itself is amazing.

So, ultimately, I don't know exactly what I do, but I do know that it's important to have time for yourself.... however little amount you can squeeze in. And when things are totally overwhelming, it's okay to cry, to let it out, to mourn the situation... and then to move on.

And I've often thought a good therapist would be nice, too.

~ Lindsay
Mom to Ella, 2 w/CF

 

[welshgirl]

i'm a pessimistic soul and i struggle almost daily with dark thoughts about the future <img src="i/expressions/face-icon-small-blush.gif" border="0"> you wouldn't know to look at me , i hide it well. the only way i get through the days is to think of others who are worse off !!!. if you have ever watched a documentary on the tv and seen some really awful medical conditions and deformities that are highly visible you will know what i mean. the one and only good thing about joe and his cf is it is not immediately obvious, he's looks thin , thats all. things will get worse for us , i'm sure, joe is oblivious to the exact nature of cf. ps. keeping really busy helps too. no time to dwell on what may or may not happen. take care janet<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Jane]

Staying positive is a daily struggle. It helps that I have a wonderful husband and partner in the boys' care. We have a similar parenting style, but I tend to be the more realistic of the two (which can cause some arguements). But mostly we only have each other because no one else really gets it. Its a very lonely place.

I think that's why I've become addicted to this site.

When your baby is diagnosed with cf, your reality changes as the disease progresses. So you are constantly in the process of mourning what you are losing. On this site I can see how pwcf live productively as they adjust to the physical changes and challenges their disease brings them. There is always someone here who knows what I feel. Its a comfort for sure.

 

[anonymous]

I have times of anger and frusrtation. The first 2 years were challenging. My daughter had 2 abdominal surgeries before 6 months of age. She had her first clean out a year ago. Fortuantely, this year has been better. We are vigilant with her treatments, which of course keeps her well. As a family we have to work so much harder to maintain normal. Now that Maggie is doing better, I have started exersizing, which burns off my anger and frustration. I am running my first half marathon in a couple weeks. Of course, when Maggie gets sick I am not able to run as much, so I'll need to figure out a another way to deal. Right now this seems to be working.

Rebecca(mom to Sammy 8 no CF and MAggie 3 1/2 with CF)

 

[anonymous]

Jane, this is a wonderful way of capturing what it has been like to live with this diagnosis. It is a kind of cyclical grieving, and like all grief, it will resurface unexpectedly, and often when I think I have finally made my peace with it. It tends to hit me suddenly, too.

Like Janet, I think I am a person who hides my grief very well; it is a private thing that I share with only a few very close friends, most of all, with my mother. Facing my fears about my daughters has given me so much more appreciation for the love a mother feels for a child, and for the inevitable pain that love can bring.

I find I think a lot about a good friend of mine who lost her son unexpectedly when he was 25. She has really helped me understand that there is an undercurrent of grief to the anger and frustration... that I am mourning all sorts of lost possibilities and expectations and assumptions, and that this is a process that is like her own experiences of mourning her son (obviously on a different scale). She said to me that she will never stop grieving for her son, but that in time, she has learned to grieve and still allow herself permission to be happy... to recognize the grief, and not be controlled by it. She also said that the great tragedy of his death is that she did not see it coming-- that she has regrets about what she never said and never appreciated. She took it for granted that she would never have to face the death of her own child. She has helped me see that there is a strange and painful sort of gift that comes with all this, and that is that I will never take my children for granted, and I will always remember that whatever the future holds, they are here now, and even when they drive me crazy <img src="i/expressions/face-icon-small-happy.gif" border="0">, I love them more deeply than I could ever imagine and I am a richer person for knowing and loving them.

I would be lying if I said that I don't lose sight of that at times (when the 2 year old is screaming and hitting me because she does not want to do a sinus wash, for instance) and that I don't sometimes want to just curl up into a ball and say "I quit!", but I am trying at these moments to remember that all this frustration is rooted in love, and that nothing CF can bring into my life can change the fact that they are the greatest and most precious gift I will ever receive, just as they are. OF course, thinking about that usually turns the frustration back into grief and pain, so I get the kids busy with something and go into my bathroom for a good cry, but at least it helps remind me to not direct all that frustration and anger at them. That is what I fear most; I never want them to feel they are a burden or a source of aggrevation because they have CF.

I also want to say thanks for sharing. I helps, as someone else said, to know that there are others out there struggling and grieving over similar things. And new perspectives on coping only leads to new strategies.

 

[JazzysMom]

Frustration.....that word is so common LOL. Today would have marked the 30th birthday of my oldest nephew. He was killed May 4, 1997 in a drunk driving accident. I found out I was pregnant 4 months later. The days that I feel like there is no fight left in me or I am having such a shitty time that I cant stand it & want to go out & scream I think of my sister. I remember having to go with her to ID my nephews body. I have been given more time than initially expected & I dont want to forget that nor do I want my nephews death to me in vain. Someone always has it worse. We might think so or cant handle it, but its true. Somehow we (all CFers &/or families/friends) find the will to keep chugging away. Maybe its the frustration itself that keeps us driving forward. I am not sure. WHat I do know is that when I think things are at there absolute worst & will never end....BAM. There is light at the end of the tunnel! One thing for sure....we all understand & when no one else gets it....WE ARE HERE!

 

[LisaV]

In my experience (which is not that of a parent) I think Jane is right in that it's like grieving. Have you read LeMaistre's book "After the Diagnosis" (there's a brief summary of it here <a target=_blank class=ftalternatingbarlinklarge href="http://www.alpineguild.com/COPING%20WITH%20CHRONIC%20ILLNESS.html">http://www.alpineguild.com/COP...CHRONIC%20ILLNESS.html</a> )? She covers the issues pretty well for someone who gets a diagnosis and I think it is much the same for family members. Additionally, when you're a parent you have to mourn the nonexistence/death of your anticipated idealized child and parenthood experience. (And when you're a spouse you have to mourn the nonexistence/death of your idealized mate and marriage.) And skipping this process (which is hard to do with your real child in your arms - it feels so unloving) can really get folks into longtime trouble (which is why therapist time can really help in the beginning).

There is also the concept of chronic or periodic grief for one with a progressive disablity or one who loves someone with a progressive illness (see <a target=_blank class=ftalternatingbarlinklarge href="http://www.indiana.edu/~hperf558/fall97/unit11.html">http://www.indiana.edu/~hperf558/fall97/unit11.html</a> ) Actually caregivers are wide open fro what is called ambigous loss (good book with that name, see <a target=_blank class=ftalternatingbarlinklarge href="http://www.amazon.com/gp/product/0674003810/sr=1-1/qid=1156030014/ref=pd_bbs_1/104-2804872-0812727?ie=UTF8&s=books">http://www.amazon.com/gp/produ...812727?ie=UTF8&s=books</a> on) and as discussed ever so briefly here (<a target=_blank class=ftalternatingbarlinklarge href="http://www.indiana.edu/~famlygrf/units/ambiguous.html">http://www.indiana.edu/~famlygrf/units/ambiguous.html</a> )
Edited to add: Caregiver grief can be both ambiguous (in that you have a child or a spouse, but it's just not the one your'd imagined so it's sort of like missing someone while you're looking at them) and disenfranchised if what you're mourning is some opportunity that you yourself might have had if you hadn't given it up for caregiver role (society expects all caregivers to be self-sacrificing martyrs who never grieve for any separate desires of their own that the illness has teaken away).


Everyone finds their own individual way of coping with these losses and frustrations - some more constructive than others no doubt - but still very individual. There is no one size fits all way to deal.

 

[JRPandTJP]

You are all so wonderful. Thank you for sharing your thoughts. It helps to know how others deal with things. I find that my grief definately doesn't follow that stupid pattern of, what is it...denial, anger, sadness, acceptance. Like someone else said it comes when it pleases and it seems up to me how I work with it. Workiing with it is key for me and not stuffing it down. When I stuff it, it comes out as anger and irriatation at other people and situations. It is hard work all this emotional honesty but when I look at those 2 sets of brown eyes staring at me I just have to make time to let go. Without this and other connections to CF people/parents, it would be tougher. Thank you all for helping us along the way and for the future, unforeseen needs we may have down the road. Jody

 

[LisaV]

Again, I don't really know what it's like for a parent, but I know as a spouse that as the disease progressed and especially when that bumped up against our agemates having different experiences, we'd go thru a grief cycle. For example, we became grandparents just as my husband began needing a powerchair and found travel difficult. Our friends went bouncing off to babysit and down to Disneyworld while we had to wait at home hoping the kids and grandkids would visit. I suspect that if your kids friends go off to their semester's abroad at the same time your kid is in hospital for exacerbation or too ill to live away from regular carel or travel there would be a new grief cycle.

There is also anticipatory grief when one thinks about the death of a loved one and sort of "practices" it in one's head. Perhaps because the of the age of married CFers as opposed to children, this comes on more frequently for spouses. But then again, because of the seeming unnaturalness of outliving one's kids and the sheer trauma that the life expectency figures brings on in parents, this might not only be a biggy but also a frequent intruder for parents who never in the wildest dreams before they had a kid with CF even contemplated that they would no doubt have to watch their kid progress through the final stages of an illness to their death - never contemplated having to let go in that way.

There's also anticipatory grief not only about death but about other things. Seeing people enjoying any life event that you think is outside your loved one's anticipated life span can bring this on. (I had great difficulty at retirement parties.) "Depending on the health and age of your kid, a wedding, birth announcement - heck even a divorce announcement could do this to you. These things just come up out of the blue like songs on the radio and can take you through the whole cycle again - sometimes in such a whosh that the cycle runs through you in an almost a moment - sometimes much much longer.

In my experience trying to avoid all anticipatory grief was actually a set up for having in more often. Tho it sounds really masochistic it was actually helpful to experience this (especially with a therapist) from time to time - tho' nif it's a daily event I'd really find a darn good therapist - daily uis way too often for sanity's sake ;-) I do think that anticipatory grief does sort of finally desensitize one to the future losses that are tuly unavoidable and helped me (at least) to love in a way that accepted the things that could not be (see amykins tag line to see that quote accurately).

Also, in my experience, anticipatory grief re death does not make the grief at death any easier. The actual loss of a loved one to death is finally an experience one cannot truly anticipate emoltionally. Practice does not make perfect. One is left to make one's own private journey through grief's country. And from watching parents mourn the death of a child, appears to me t this is always finally a completely a private journey - mothers and fathers can maybe recognize that each is on the journey and give each other space for it, but each will travel alone and differently. I suspect that is also true for all of the other griefs and mourning that parents do during the lifetime of their CF kids as well.

 

[debs2girls]

I have seen the title to this post for a few days and have not read it til now. I just finished venting about being frustrated in another post.
I dont think I am handling this whole thing very well. Some days I do ok but other days, not so good. Like today, and I think it is because she is getting sick again and I will fight with the dr's office all week to get something done about it.
My daughter was diagnosed in Nov. 05. My older sister passed away, we had to put our dog to sleep and the foster baby we were suposed to get to adopt was removed from our home and placed in another foster home because we were getting too attached. All of that happened in November. I am having such a terrible time with all of it. I used to think of myself as a pretty smart, well rounded person. Now, I cant concentrate, get frustrated easily and I cry more easily.
Sorry to ramble on.

 

[JRPandTJP]

Debbie, you have been dealt alot and my heart goes out to you. Sometimes we think if we just keep going it (the feelings, grief, fear, resentment) will get better or go away. I don't think that is true. Crying is good, shouting at the top of your voice at the universe (without the kids around of course) is good, going into the losses (actual and perceived) is good (though really scary)...with a therapist who understands grief and won't just prescribe you something to numb it. Depression can be a gift. I know it sounds weird but it is often our body's only way of telling us we need to acknowledge our pain and release it as best we can. I actually had a breakdown with it all one day...I mean my husband had to stay home, I felt as if I was dying, just a horrible feeling of dread came of me kind of breakdown. I had been running so hard and so fast for 18 months after he was born, I just couldn't let myself grieve. I had to take care of everyone. It was huge and it needed attention. I knew a traditional therapist would put me on something and I didn't want that. I needed a safe place to deal and I still go from time to time. My therapist used some rapid eye movement technique to help me unlock some unconscious emotions and release them, as well as a tapping technique to help with my misplaced anxiety and fears (alot of anticipatory grief like Lisa spoke of). I had tons of nightmares for a while but they (after about 6 months) have subsided. I am back to feeling like myself and much more accepting of all that life deals me. I just highly recommend reaching out to a neutral person...I felt I didn't want to burden my husband at times for fear he was in a good place and I'd bring him down. No one else I knew could totally relate. I think we feel like if we let it out it will consume us...it doesn't, it only consumes moments, sometimes days. We are not just our fears and grief...there are many other parts that step in to help us through the days until we can transform it into more positive energy for our lives.

PM me if you want a link for the emotional release techniques.

 

[anonymous]

Debie,
Just the from the little you have shared you shoulkd like a normal well-rounded strong passionate resiliant woman. Loosing a sister, a foster baby, a beloved family pet at the same time you're dealing with a new baby with a CF diagnosis (and all the medical osystem crap like office stuff that brings)? That's a lot of losses and stresses at the same time. No wonder your feelings are right there on the surface and your crying often and easily frustrated. You sound completely normal to me.

I like to think of myself as resiliant too (and really think I am), but in the last 10 years I saw my parents, my sister, the family dog, and my husband (in that calendar order, not in importance) through terminal illnesses to their death. Let me tell you there was more than one day I was completely overwhelmed. Quite frankly I could not have kept on trucking without time outs to nuture myself and tocry my heart out and without the help of a darn good grief counselor.

I'd suggest you take some time with a grief counselor too. We think we've got to be the "strong" ones and all because we're well and and all, but that doesn't mean we have to do it all alone. Some time each week with someone who is there to support us can be really really helpful. Around here (anc probably where you live) the easiest way to find a good grief counselor is to call your local hospice (often associated with your local VNA or hospital). They will probably know a good grief counselor who can offer you support for the full catastrophe that came your way in Nov 2005.

Take care of <i>you</i>. Can't take care of anyone else unless you take care of you firtst. You know what they say on the airplane when they're giving instructions on using O2. Put your own O2 first and, then, put it on your kids who are traveling with you.
-Keeping you all in my heart,,
LisaV

 

[DebbieC]

Laura,
As an adult with CF, my perspective is a little different. I don't have children (my sister has supplied my mom with a nice crop of grandkids, all CF free<img src="i/expressions/face-icon-small-happy.gif" border="0">) so I don't have my own "parent" feelings to draw on...BUT I know the frusturation part.

I know (as mom and sis tell me) that your babies ARE YOUR LIFE, and then to have something like CF on top of it, you feel like it wasn't what you signed up for. I've been waiting on my new lungs since december and know the feeling of isolation.

You are already a strong woman. You can handle whatever is being thrown at you. You have support here to vent.

You are also human and are ALLOWED to cry, and should. If you don't want to do it in front of the kids, find a place where you can sob an get it all out. My mom uses the shower. A good cry is so good for you.

 

[Ratatosk]

When DS was born with meconium illeus and diagnosed with CF shortly after he was born, I basically went through the stages of grief I'd learned about in my College Death and Dying Sociology Class -- can't remember them all -- biggies are denial, anger, acceptance. I think I cried and raged for the first year off and on. Raged at the unfairness of it all. Worried about his current health, worried about the future. Little things would set me off -- mentioned this before -- sarah jessica parker and perfect little boy who was born a couple months before DS. Would see her on tv or in magazines and just wanted to SLAP her.

When DS is doing well. I feel pretty confident about thing. Something a little different -- a cough, stuffy nose, fever, an off day and I'm panicky.

I've changed. Become a bit more patient. I'm not as organized in terms of house work, errands etc. I also am much more impatient with family members -- specifically my own mother. She's always been rather needy and self centered and she can't seem to understand the schedule we keep. Now that she and my dad are retired, she has become more and more demanding -- why don't I call more than once a week, why don't we come visit them 2,000 miles away... I feel bad because I have absolutely no patience regarding someone who needs constant reassurance.

Sometimes I just wish someone would take over and take care of me for once. Magically clean my house <img src="i/expressions/face-icon-small-smile.gif" border="0"> I still have crying jags once in a while. But when I look at our little boy and he flashed me his huge grin, I just melt and feel such great joy. I have to remind myself to take a step back and ENJOY him and enjoy the little things. L

 

[lightNlife]

I'm not trying to thrust my spirituality on anyone here, but I
thought that I'd share a bit about how I cope with frustration.
This is a piece I wrote that was published awhile back and I think
it applies to this particular thread.<br>
<br>
<br>
<span style=" font-size: small;"><b>It's Okay to be Weak<br>
</b><br>
<span style=" font-style: italic;">He gives strength to the weary
and increases the power of the weak. --Isaiah 40:29<br>
<br>
Because we live in a world where strength, and power are praised,
many of us do our best to hide our insecurities and shortcomings.
We often go to great lengths to exaggerate our strengths and
downplay our weaknesses in order to make ourselves look better to
others. In truth, the very people we try to impress may just as
well be struggling with the same feelings of weakness and may be
just as weary from trying to hide it.<br>
<br>
There are times when my physical health isn't as strong as I would
like it to be. During those times, my spiritual health can also
wane. Although such times of weakness feel like they last for far
too long, I know that each and every time that happens, God has
given me a new point of view and a new way to trust in Him. I have
learned that it is okay to be weak just so long as I remember that
there is One who enables me to be strong.<br>
<br>
The very fact that I cannot do certain things on my own only serves
to emphasize that Christ is the One who works through me. If I
never struggled with anything, I would never learn anything. If the
path I walk as a Christian never tripped me up, I would never spend
as much time on my knees in prayer as I do. Being strong has
nothing to do with me, but everything to do with God.<br>
<br>
I am the first to admit that I am a weak when it comes to certain
areas of my life. I am also the first to admit that I have come
this far by faith and it is that very faith that connects me to a
source of strength and peace that is indescribable. Nothing this
world has to offer even comes close to that kind of power.<br>
<br>
Copyright (c) 2006 Lauren G. Beyenhof. All Rights Reserved.