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You are such "A Strong Person"

Posted by djcwiley, on Sun Apr 07, 2013 9:59 pm
If I hear this one more time, I'm going to yell at the top of my lungs.  There is only so much physical pain a person can ensure and so much emotional stress a person can tolerate.  I can be in a fetal position, my skin white as a ghost and tears coming down my face and yet my family assumes I can assist them with a finding the nail clipper or call the cable company or fix their computer problem.  It's like they get so use to seeing me sick that they think it's no biggie.

Since I'm such a "strong person" I can handle anything and guess what I can't always be an active member of the family.  It's just so amazing how people can be so intrusive and absorbed with their own problems that they can't even recognize the suffering I'm experience when I've having a blockage.

Does anyone else ever feel like your family members are wearing blinders? I'm not usually the one to complain but sometimes it feels so good to vent to people who can understand my situation and pain.

Reply by Kittee, on Sun Apr 07, 2013 10:49 pm
Yes,,,I def hear you Debra,,,my grown daughter's do not care about what i have been through.....i had emergency surgery,,,died on the table,,,won't bore you with the whole story,,,but,,,I was in the hospital for over 2 mon and on vent for over a week,,,couldn't walk for 2 months..on walker when I got home,,,,had to beg someone just to help me get something to drink or eat,,,had deep wounds,,3, needed packed for 3 months,,,visiting nurses came 2 or 3 days a week,,,had to try to do them myself,,very difficult,,they wouldn't help me..,my oldest went to drug store and bought a hand mirror,,,threw it in my lap and yelled here,,do your own wound care, I can't look at it....wouldn't help me clean the powder room,,,told people visiting not to use it cuz I used it,,,it was weeks before I could do it right,,,
after all I've done for them,,,taking care of them when they are sick,,,took care of her when she broke her leg,, waited on her hand and foot,,same thing when she was pregnant and on complete bedrest,,,i cannot believe I raised such uncaring insensitive people,,,I am embarrassed about it,,,and have not told anyone in the family or any of my friends how they treat me,,,,
I have always been told  "everything comes so easy for you,,,I could never do what you do"
well,,,let me say this,,,they are probably right,,,I am doing it,,,all by myself,,,and any one of them would have fallen apart by now!!!
hope things get better for you Debra,,,
Reply by Bill, on Mon Apr 08, 2013 4:51 am
Hello Debra. Thank your so much for your post as I'm sure many of us on this site have experienced this sort of thing at times throughout our ostomy journeys. The concept is one that I could not resist putting into rhyming verse, so thank you also for the idea of 'invisible pain'. which you can find on my latest blog.  Best wishes  Bill
Reply by bmeup, on Mon Apr 08, 2013 9:05 am
Hi Debra.
I have to concur with Bill and Kittee here.  I was so relieved to find this site and know there is a place I can come to for helpful information or just to rant-- something we all need to do from time to time.  I am so sorry for you and for Kittee.  It is awful to feel invisible in this way.  I don't tell people about my situation unless it becomes necessary.  Recently, I had finally found a job I thought I was going to enjoy and when I let my manager know that there would be one day during the week I'd need to go for chemotherapy the next day the owners fired me for some bogus trumped up reasons.  Not before, however, they went on and on about "what an amazing person" I was and gave me "the look".  Everyone here on this site, and especially cancer warriors know "the look".  It's that pulled down face and sorrowful eyes as they say something like "I'm sorry you are having to go through this..."  I really just wanted to smack the false concern right out of both of them.   Yes, it's true that when you are perceived as a strong person, the people around you tend to focus on that and forget that you need help.  It's even worse when you don't look sick and you carry on without a complaint and without asking for help from anyone.  After a while if you never mention it they'll just assume everything is fine.  It becomes difficult to even talk to someone about your concerns, too.  That's another reason I am so grateful for the people on this site who take the time to pop in with words of encouragement.  We can't fix these things for each other, but we can hear each other and know we are not alone.  I hope things get better for you.  If you have the energy to just freak out on them and become the "two headed monster" for a few minutes they might pause for awhile in their demands and expectations.  Could be worth a try.  And ignore their demands, if you can.  It's all you can do.  

Past Member
Reply by Past Member, on Mon Apr 08, 2013 10:29 am
I too am a very strong person and I read how frustrated you are with your family and "doing for everyone when they can readily do it for themselves"  Here is what you do:  Tell them that you are indeed a strong person but you NEED their support and help on a daily basis!!  I don't much like Dr. Phil but on occasion he says things that are really good and here is one I need to pass on to you.
YOU TEACH PEOPLE HOW TO TREAT YOU!!!  So in other words, the more you DO NOT VERBALIZE YOUR NEEDS the more things stay the same.  

I too had a horrible time with 3 surgeries, have diabetes, COPD, Polymyalgia, had a colostomy, reversal, Chron's/Colitus, and ended up with a permanent ilesostomy bag.  Was in ICU 2 times, received 2 pints of blood, went into renal failure, etc. Was told I had C-diff, MRSA, did have a parasite the CDC got involved and I was in insolation.  I am now doing great with having had 2 stays at rehabs, etc., and the BEST HUSBAND IN THE WORLD who was a fantastic caretaker for me and like others, had PT and Ot and a nurse for a while and learned to walk, use a wheelchair, walker, cane and am doing great.  I feel I am blessed to be alive as lost 30 pounds and could not eat and had diarrhea for a very long time and the dr. said when my colon perforated it was like a bomb had gone off in my stomach, so I was a mess, but as I said, am doing great.

So I hope somehow you really become totally honest with your family or those around you.  Like so many of us, you have had a life changing life transforming experience, and you get through it and we did-all of us on this board, and if someone says how strong you are--just AGREE AND SAY YES BUT HAVING SAID THAT I DO NEED HELP AND COMPASSION FROM OTHERS from time to time.
Reply by WOUNDED DOE, on Mon Apr 08, 2013 10:50 am
I sooooo totally, also understand this.........and things are SO much easier to share with Osty Friends than with non-osty friends because we are the ones who can, and do, truly understand and relate to such issues, fact, most of my acquaintances are the people I Assist, and they are unaware of my Ostomy actually, for my personal actual 'close friends' I have only a small handful as I choose to live quite privately......

I work with and assist a lot of people but when my private issues come up it either is shared on here with ya'll or kept very private among just a few close friends offline,....that's it.  Those of us on this site are the 'family' and friends who truly DO understand what we go through.....when I read or hear that another ostomate is having troubles I take it deep into my heart and my emotions, more than you might be aware.  

Things can be SO difficult at times but we must remember, no matter how weak we are at times, no matter how much pain we may be in, no matter how difficult our Life's Gauntlet is emotionally, physically, psychologically, etc....we must find a way to draw out that Inner Warrior ....we all have it my precious  friends, me, we do.  As I am known so well to say, ......"We will DECIDE to fight every Challenge head on, .....therefore no loss occurs, not even if we land flat on our face.......because the 'WIN' is about Strength of Spirit" ...........................

I love each of you very much xoxo  I wish I lived close enough to Assist you somehow.

We all 'fall' ..............but if you are like your feisty sistah Wounded get back up, no matter what it takes, and with a gleam of fire in your eyes you march onward with even more determination Wink XOXOXO!!!!

~Your Doe
Reply by Kittee, on Mon Apr 08, 2013 12:31 pm
Yes,I agree with all that has been said here,,,,I do realize that people usually treat you in the way they are allowed to treat you....
having said that,,,I guess I don't understand their not having compassion or even sympathy for me at all
I too, received blood transfusions...died during the  emergency surgery,,,my colon was dying and this happened after the colonoscopy after they said I had food poisoning,,,,they poked a hole in my colon,,had air in abdomen,,,if it hadn't been found I would have died that night.,,,I also was in isolation before they found out about my colon...UC,,,also,,so grateful to be alive to be here,,,and have said so,,,many times...
I did try to tell them i needed help and they said the dr and nurses said i needed to learn to do for myself,,which i know is true!!!  but it doesn't just happen!!!,,,it was a slow process and not easy, and i needed some help,,,,after all,,,i had let her move back in that year when she was going thru a divorce from her no 2,,,
after telling my daughter this,,that i needed some help,,,,she got angry and moved out to a different town, about 45 min away...she still works in my town, and wouldn't even stop by to see if i needed anything,,,i finally got able to walk with a cane and could drive to the store...a real blessing
it is nw 2 1/2 yrs later and i feel i am doing great!  thanks to the encouragement of people like you all and the people at Inspire,,Great Comebacks and More
thanks to you all,,,
Past Member
Reply by Past Member, on Mon Apr 08, 2013 1:42 pm
Thank you Debra - you speak for me too.  I am not strong, I am TIRED from years of being strong.  Be it my extensive medical histories - and results of what's left of my body condition from too many surgeries - to now, becoming divorced pretty soon.  It's all in my lap to clean up the messes and even my son, who lives at home, sees only a woman who is annoying, but capable of doing all it takes to wrap up a marriage, save one house, and let a failing business property be taken.  I live thousands of miles from any family or friends, and have said for years I was becoming exhausted, could not handle the things that kept piling on in health and family situations … and all I get was, "You're the strongest person I know!"  Not so much right now.  In the home, your post nailed it - those who live with you SEE how sick you are and struggling, but it's still on you to handle what they can't, won't or whatever the crisis de jour is.  I only get shouted at for being no fun, not able to go or do - or when I planned and really wanted to come out and PLAY - my body, and then mounting, undiagnosed PTSD/Anxiety caused me to drop out of life.  I was the thing that lived in the house.  Everyone has their own life.  I was a willing participant in moving far from family and friends in order to sustain a good income for my husband as it became clear in 2002, my work days were DONE.  I got permanent SSDI for Crohn's on the first pass, but - it's thought because I was strong on focus at the time, I did make the point enough the first try to prove I required Disability.  Since that time, I have had 6 more surgeries, and the cumulative effects of constant illness and internal structure problems for a year leading into each surgery  … became EVERYONE'S NORMAL.  Including mine.  Added to it, my contribution to the family without income was to assist and support, and grow the income property my husband bought in 2006.  It chained me to the house doing business, becoming a nag, not a wife - and it deteriorated my mental status along with the illness, body losses, sexuality issues into causing him to bugger out of the marriage.  It's his methods that took the business down, and he's pushed to the gills with his W-2 job, the physical plant running of the apartment property - but no communication, with willful defiance of all business plans I set up … landed me with PTSD/Anxiety.  That diagnosis was made in 2011 after a decade of throwing every antidepressant on the planet at me - which all failed because all were the wrong meds for a wrong diagnosis.  Each pill, each surgery, each business crisis - chipped away at STRENGTH and ability to hang in, hang on and push threw.  It's not like I was not saying HELP ME for the last few years.  "You can do this, you are strong!"  "Pray!"  "Meditate!"  "Think positive thoughts."  With no meaningful support or a method to back up the help I was learning in therapy that got chipped away it within the home setting.  So the husband walks out for the third and final time this December after my Strength Failed.  I tried to take my own life because I got that low and that cornered, and that stupid.  I WILL LIVE, I WANT TO LIVE.  And even that idiotic act was - well, see?  You made it through that!  Monday morning QB from afar while it's on my to packet up trying to save the family house, lose the income property and cobble together a way to become divorced.  And I am NOT feeling sorry for myself.  It's what I MUST DO.  But calling me strong is not helping.  I am exhausted, don't sleep, and it's the last bit of PUSH in energies to wrap all this up - and still not know what my future is to be.  All this is affecting my ability to stave off illness triggers.  I feel a flare coming on, but have no time for it.  There are no caped heroes to come dig my ass out of this.  Strength is at low tide.  I will do what I have to do - and create serenity, likely living in Section 8 housing, and as I am a landlord myself - who's going to rent to a woman with 6 cats?!  A punch line, this being strong.
Reply by WOUNDED DOE, on Mon Apr 08, 2013 4:39 pm
SariJo girl .....I can relate to SOOOOOoooo many things you just said............and my friends have always told me, "no matter what, just keep trying to make a new start, yah gotta keep going, you're stronger than any of us, you can do it Doe" .........but I am also trying to hang onto the old family Homestead and really digging my nails in to do so, life is no longer what I want .....yet.......but I am trying to make the best of situations within my control ......... I know you will continue to do the same, I see the strong Spirit in you.

.....since my last Crohn's surgery I have required help and I know I will always need to share expenses these days, even if in some small way, I absolutely do not have a choice anymore, ...I lived alone for many years and it was hellish tough, but I did it.... however, since my last battle with Crohn's things are a little tougher now .......but I'll be damned if I will lose my home.....noooo freakin way.
.......and, being heavilly involved in Animal Rescue for so many years, I still have fur babies here too, lots of them, and I will continue to provide them their Forever matter what the cost.....they are my kids and I could live no other way,  I am far too dedicated.

I, too, am divorced.  Many faithful years (on my part) time wasted down the toilet.  I have tried to start over a couple times but it wasn't meant to be.......oh well, and learn I guess.  

When and IF I find 'Mr. Right' ....I will have more value to that person. ........and I will be dedicated to him for the rest of my life , but I have really raised the bar high after what I've been through will seriously take a King of Men to be with honest man of Great Integrity, Pride and Honor.....Strong Willed, Fair, Sensitive, Understanding, Dependable, and someone who has led a life of Selfless Acts and Bravery....someone who has served up Dedication for others and knows how to treat a Lady.....I want someone who has some good 'old fashioned values to grow old man will ever touch me again until I find my King...... if I do not meet nor find my King, then I am fine living alone or sharing expenses among friends.....until then, I am absolutely untouchable.  
I have the same expectation for other issues in my life .....I am raising the bar and I'm not going down without a fight.......I am worth it...........and I want you to feel the same way........xoxo!

When crap tumbles on us in life,  it seems we need to constantly RE-Invent ourselves....and it can really suck the Energy out of us and can be very difficult to conjure enough strength to keep going at times.   My life really took a major flip-flop since my last surgery......but as tired and wiped out as I often am, I know I will keep going.......I hope you do the same......keep finding a way to survive beneath all the overwhelming issues, feelings, tiredness, stesses, financial worries, emotional upsets,'s one big package of stuff to deal with..............we all have our baggage but it does get easier when people can stick together to help each other carry the load.

You take care girl!!! ............we will all find ways to continue to deal with our Individual challenges...............................we have to. Wink  
I want to tell you to try to cut some of the stress because we both know that makes our Crohn's worse,....but I also know and understand many of the stresses you are under and it suuuure isn't easy to relax Sad .....keep us posted, ALL of you, on how you're doing!   Life is a rollercoaster ride, ..........we'll all try to 'whiteknuckle' the ride together, best we can Smile ........ xoxoxo

Love to Everybody!

~Ya'll's sister Doe
Reply by nehamashira, on Mon Apr 08, 2013 8:44 pm
You are allowed to "check out" every now and then, especially if your family does not have the sensitivity to recognize when you need a little TLC!! Be kind to yourself.
Reply by nehamashira, on Mon Apr 08, 2013 8:54 pm
It seems like an epidemic out there!! A whole generation of 'entitled' kids who are sorely lacking in the the sensitivity department (except when their own 'needs' are not being met...).

My sons tend to be pretty self-absorbed (especially the older one). I hear a lot of "it's not my problem..", or "I can't deal with [insert whatever the issue happens to be at the moment]". My husband and I very rarely see either of them (both are adults) unless they want something from us. We feel used and often very used up. My greatest fear is that after all that we have done, they will abandon us when the time comes that we are no longer 'useful'. Whatever happened to 'honor your mother and father'?
Reply by WOUNDED DOE, on Tue Apr 09, 2013 12:07 am
nehamashira wrote:
You are allowed to "check out" every now and then, especially if your family does not have the sensitivity to recognize when you need a little TLC!! Be kind to yourself.

Very well said nehamashira! true.
Reply by Bill, on Tue Apr 09, 2013 3:34 am
Hello everyone. Your posts are so pertinent to many of our relationships that we wish might be slightly better than they are in 'real' life. This has been a subject area that has brought forth many feelings that are normally kept under wraps, so I felt it deserved another go at some rhyming verse. (see new blog --'Am I strong?') Thank you again for the concept and the contributions via your posts.  Best wishes  Bill
Reply by Mr Fox, on Tue Apr 09, 2013 4:36 am


Last edited by Mr Fox on Wed Aug 17, 2016 6:47 am; edited 1 time in total
Reply by djcwiley, on Tue Apr 09, 2013 5:09 am
Sweet dreams,

My dear you sound like me 7 years ago.  I too had a business and a husband that could not take care of a cat yet alone a whole person.  It's all behind us and time to live for ourselves because there isn't anyone else that will do this for us.

Suffering is a great teacher so let's learn from this horrible pain.  A tragedy can be an opportunity to move on a new life or a new you!

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