Fed Up/had Enough/over It All

[dg2901]

I wasnt going to post this, however after talking to someone they suggested I might get some positive feedback...
i'm at the end of my rope with dealing with this stupid asinine bladder situation and all that comes with it; you know, the unsupportive family and friends who can't/won't listen to anymore "complaining". I've done nothing but be supportive of my family and friends in the past--I've never turned my back on anyone who's needed me for whatever reason. However, it seems that I'm nothing more than a pain in the arse to those that i've attempted to turn to lately for simple support; a friendly ear, a shoulder to lean on, etc. I dont buy the excuse that people dont understand so therefore they turn away so please dont reply to me with that excuse. Understanding is sometimes irrelevant--what ever happened to old fashioned listening??? I'm sure there have been plenty of times that I've not "understood" exactly what someone is going through; that doesnt give me the right as a friend to turn my back on that person--or does it??? Maybe thats the new rule in life, when one doesnt
understand running the other way is allowed. I dont know--i feel as if i'm talking in circles here. I guess what i'm looking for are some good coping strategies that dont include family and friends. I've confided in a DR already so that option has been covered. I'm at an all-time low at the moment and really need to get out of this rut if at all possible, preferrably alone. Its a miserable place to be!

D

[BeachBaby]

(((((D)))))!

I think your post makes perfect sense, and at some point I think most of us experience this lack of support/understanding.

Here is what works for me. It's not the best plan, but it's how I COPE.

I too am the one that does it all for everyone else. Been there have the t-shirt. In fact, I would daresay I neglect my self in order to be at other's beck and call. Let me re-phrase that - I used to be....:lmao: Even on the boards I used to write novels to newbies etc, in an attempt to reach out.

It took me sometime to figure out that I would just show up here and there and respond to those I truly felt I had something worthy to say.

As for my outside life. Hmmmmmmmm. Let me see. I have slew of Dr's as friends. They are good ones too, and nurses whom I adore..BUT!!! Even they don't get IC and other chronic issues.

So, I prescribe to the philosophy of not discussing it. Not from the embarrassment, but just due to my fear of disappointment and relationships ruined. My husband and kids are incredible and never questioned me when my life came to a halt! In fact my husband chewed out the team who felt I didn't have IC, since nocturia wasn't a symptom -Grrrr - and within 24 hrs I was in the OR having a H/C among other things. So, he is my champion.

BUT, I have just learned to basically rely on myself and set my own limits/goals. It never makes me feel great discussing it anyway, so I just don't. If it comes up or I have to feel limited because of it (no longer, thank you God!) I would simply explain I have a bladder disease. For "me" the mere mention of cystitis just ended any possible understanding.

I am much less disappointed this way. BUT!!! That being said, I truly understand how devastating and isolating this can be. I know you are a supportive person, and from all your photo journals, I also know you attempt to be as active as possible.

I am not sure what to offer, as I know how tricky relationships can be. I just know for me, that my bigger strength comes from within, and when I lower my expectations of others, I find myself dealing with illness much better.

I am in really good shape with my IC, BUT...not so good with other chronic issues and have a mysterious back and leg pain issue going on since March. This is VERY limiting, and though I have to pass on lots of fun (I am at the beach), I just try to do what I can and pray it will be resolved.

D! I hope you can find some way to find your own strengths again, I am sure there are many! I think posting it here will just help by getting it off your chest. While we all have different ways we cope, I think so many here will truly get this and can offer tips to get past this feeling.

All I know is I do end up letting a few people "walk", it is easier than trying to make THEM feel better about MY issues. What I will never do is stop reaching out to people who do need me...it's my nature and for nothing else, I do get it, regardless of the reasons.

You hang in there, maybe a good cry, scream and lots of swearing will help in the short term. But, my advice is to look inside yourself for the strength and happiness you need. It's really hard, but it does offset a lot of the crap!

[ICNDonna]

Betsie has offered some excellent insight. I just have one thing to add and that is to suggest you see a qualified counselor to help you deal with your feelings. Most of us have done so at some time in the process of our shared disease. Believe me when I say that it really does help.

Warm hugs,
Donna

[callie0767]

me too.my family after 20 years with this disease still don't get and probably never will. i tried not saying anything for a long time then read where you should try to give them info so they could understand so everything i found i printed and shared with them for years .did not help. i think they get it a little more but when it comes down to it the only one i count on is myself.
they bailed on me when i needed them the most. my sister does call on ocassion but she lives in ny and i live in indiana plus she is busy with her own career and now expecting a baby. my other sister believes i take advantage of my parents even though i always give my mom an option to go with me(to a surgery or doc appt) or not which she doesn't bother to see the other side. i have always been there for them -babysitting with their kids ,staying with them when they go on vacation for several days. to me family is supposed to support you no matter what in good times and bad times but that does not happen. i do give credit to my aunts who cornered a doctor to get me into her which helps. my family does understand a little better but cannot forget that they were not there when i needed them the most. i think no one but us can understand it.

[Kara29]

I gave up along time ago on the people that refuse to try to understand this disease. I've learned to surround myself with people who are positive. There are only few. Some very close friends that I met here, my mom, my grandmother, and my Husband and my Therapist. Everyone else does not listen about IC or what goes on in my life. I stick with those that choose to understand and support me and leave it to that. I am doing well with few supporters but those that do support me are very good at it. I also turn here whenever I need to for support! It's unbelievable what kind of support you can find on these boards if you look in the right places. During Christmas I had a flare so bad there was no one I could talk to. I came here and found it.
We are here for you with whatever you may need! We are just a PM away!

Love and Hugs!


Kara:angel:

[dg2901]

Thanks ladies for your replies..:)
I'm at my lowest point mentally at the time being--i've been reassured that this too shall pass, just hoping it passes real soon!

:)-Betsie--your philosophy of not discussing 'it' is probably a good advice. Like you said, it could possibly ruin relationships--let me rephrase that, it DOES ruin relationships. Thinking about that though, what exactly was the 'relationship' built on in the first place if something as trivial {in the grand scheme of this thing we call life** as a bladder issue, or anything else for that matter, brings it to a halt.

:)-Donna--youre indeed right on regarding discussing issue(s) with a counselor. Fortunately I have access to a PSY-MD whenever I see fit. This person has come in handy recently.

:)--Courtenay--I feel for you, dear. Unfortunately I can relate to some of what you're going through with the family. I have some inlaws (husbands family) locally, who are so self-centered its almost unbelievable. My mother inlaws philosophy is "if its not happening to me then i'm not concerned"--lovely huh?..i digress.........

:)--Kara--while I havent replied to any of your threads (this is simply due to not knowing what to say), I have infact followed your story. All I can say is that you're coping extremely well. I've sometimes wondered where you find the strength to keep going--now I know.

Todays another day--with any hope, we'll all be able to manage and make the best of what we've been dealt.

Thanks again for your replies..:) :)
D

[BeachBaby]

Hi D!

-Betsie--your philosophy of not discussing 'it' is probably a good advice. Like you said, it could possibly ruin relationships--let me rephrase that, it DOES ruin relationships. Thinking about that though, what exactly was the 'relationship' built on in the first place if something as trivial {in the grand scheme of this thing we call life** as a bladder issue, or anything else for that matter, brings it to a halt.

I don't think it makes a lot of sense and I think even the best of friends can get squirmy. I think human nature makes so many uncomfortable with discussions of illness. Especially if they feel inadequate in discussing it. I mean this about lots of issues, not just IC.

I think people mean well, but somehow, we (who are fragile from the chronic state) need more than we seem to get. I think people somehow get tuned into not feeling supportive and the whole thing becomes rather cyclical...sooooooooo I come full circle in order to explain why I think good relationships might fracture...:shake:

Just one more thing. I personally tend to push people away when I feel my worst, but at the same time I quietly feel very let down. It seems so silly, but I am just not comfortable asking for help...and I guess I just assume people get what I need! Well, they don't...so I refrain...I think it's a protective measure on my part. Not my best quality, but I am being honest about myself. :rolleyes:

I hope things are a wee bit better....

[ICLori]

I've found, too, that healthy people are really uncomfortable discussing IC. Sometimes I got frustrated with that. I felt I was kind of all alone in a world of pain. The ICN boards were really great when I needed to talk to others who understood.

I don't have any advice or anything, just wanted to let you know, I understand how you are feeling, and agree that it is depressing and frustrating.

Blessings,
Lori

[Silverfern]

((Diana)) :kissing:

Hope you're feeling better today sweetie!!!

Hugs

[traceann]

ACK! I can't believe I missed this D! I totally hear ya sister! What happened to just being a FRIEND, regardless of what problems or lack of problems you may have? Just because I don't have kids (yet) doesn't mean I can't sympathize with one of my friends who may be going through a rough patch with one of theirs, etc. I didn't think you needed "qualifications" to handle things to just be a good friend and listen.

I did the keep quiet thing myself after the intial "ooh, I may be complaining too much here" phase, and now I don't give a rat's butt, lol. I have a very good friend/neighbor who has MS and she's not shy about mentioning it in everyday conversation, so I thought hell with it, why should I keep a keep a buttoned lip as if I am ashamed of it, I had no choice - I didn't choose to have "bladder issues"! So, every now and then mine comes up in everyday converstation as well, lol. ;)

Hmmm, as for my coping strategies? Can't say I really have any, to be honest. I guess I view it as a "friend issue" instead of a health issue, cause really that's what it boils down to - just how good your friends are. And unfortunately I have had to leave a few of them behind who just didn't have the compassion that I felt should be there. I didn't cut them out of my life, etc, but with them, I keep the topics strictly shallow, lol. I mean, cripes one of them actually said to me when I started the diet "oh, I wish I had a problem so I would have to eat a certain way so I could lose weight too!" HUH??? Yeah, whatever. I have always said to my hubby, all I have ever wanted is a friend who treats me the same way I treat them. I have been dubbed "Dear Abby" for years, and it's been tough finding my Dear Abby let me tell you. Still not sure if I have come across one or not, lol. (well, in my town, not on here, lol)

Sorry this wasn't much of a help, ugh. But, I just wanted to chime in and tell you I know what you mean, seems good old-fashioned friendships are hard to come by, where you do as much shoulder lending and you get....

HUGS!!!!!!!!!
T

[dg2901]

Lynne, its worth repeating--youre a gem! :)

Lori, youre right, it can get very depressing, no doubt. I usually just let things either slide off of me or I choose to hold things in. Thats the mistake I made this time, unfortunately.

Tracey, you and I think the same regarding what a friend should be; the fair-weather crap has got to go!
Thanks for your input..:)

Thanks to everyone else who has chimed in!
Y'all take care.
Diana

[ihurttoo]

Diana, I have gone thru this as well. I recently had to drop one more "friend", who was only around when SHE had an issue she wanted to discuss, but even though I never bring up IC, if she was with me when I had to pick up my meds, she would go off on me about how I dont really need that stuff and it is all mind over matter, and how when she had cancer she didnt really hurt bad enough for her meds so she is sure I dont need pain meds either, etc. (This is the same "Friend" (who is also my cousin) who I took on a fully paid vacation a couple of months ago and she treated me terribly. So, after having been burned by every local friend, I am done. I am tired of it, and quite frankly would prefer to be alone than to be around people who I am nothing but kind to and have them treat me like this in return. (Incidently, this is not the first "Friend" who has disappointed me sorely.

I have been hurt far worse by friends than I ever was by a man. I am just to the point right now that I honeslty dont give a damn if I ever have another friend! If I want to talk to someone or I will come one here, where at least people get it, and are kind. The world is just too cold for me right now.

I hope you have other friends, (unlike me.) But, if you dont either, I can promise you this.....it aint nearly as bad as you think being friendless!!! I no longer have expectations of people to treat me decently only to be let down.

I can also tell you this, if you ever want to talk to someone, then come here and talk to us, and we will understand, support you, and accept you nonconditionally, and without judgement. Sending you hugs, Amy

[traceann]

You are so welcome! ;) BIG hugs!!!!!!!

[ShePurzz]

Hello D...

I am another who would have to chime in with "where have all my family and friends gone?" at one time or another. My own coping methods are different now as well after going through the 'stage' that you are going through.

I am fortunate that my URO's nurse is extremely sensitive and compassionate -- you would think that she has/had IC -- but when I asked her she assures me she doesn't -- however she has a family member who does -- and working for the URO is probably why she is so understanding about it. I have never picked up the phone to contact her, although I am positive that I could if I ever got where I just needed someone to know how much pain I was in... She would undoubtedly tell me to come in and get a treatment (DMSO installation - or something else if that didn't work... and my guess is that she would mainly be looking to do 'something' to help me!)

She is what we all are looking for in our family and friends -- however -- I truly believe that she is made aware because it is her line of work.

Perhaps if we had a relative or friend in the URO business, they too would find it easy to support us. I believe that the reason we get shut out and shut off is because they just don't know how to ''''''fix it''''''' and don't know that what we really need is just a listening ear. SO, with that said.... I hate to suggest this because it is probably something you have tried, but JUST IN CASE, let me suggest that you ask your most compassionate family member or friend if you can just TALK about this without them feeling any need to try to fix it -- but just let them know that right now, you know they can't fix things, but you need a listening, caring ear. I know that sounds so simple and perhaps a bit naive, but in reality, I still believe that they don't listen after a while because they don't know what to say -- they have heard our story, our woes, and our complaints and it sucks that it just won't go away.

It may help -- and I don't suggest using this with everyone -- or when you are angry -- it will not feel good afterward if you just say "CAN"T YOU JUST LISTEN TO ME" and then dump -- that will end up adding guilt to your own plate -- however -- when you are talking to someone who you really feel you need/want support and a listening ear from, just ask them "CAN you be the person that I can call on occasion to just get this off my chest? I don't need solutions, suggestions, pain relief, answer... I JUST NEED A FRIEND right now who I can talk to and who won't try to explain my problem away... CAN you be that person for me or if not, that is okay, I will ask someone else?"

It can't hurt to ask and then when the person realizes that you just need their ear, not their advise, their solutions, or ANYTHING in return -- perhaps they will TRULY understand that all you have needed all along is just a friend to listen to you... I wouldn't do this all to one person -- that would be overwhelming and wear them thin -- however -- if you could get one or two people who would be willing to let you rant/rave/cry or complain when you needed to share it with someone HUMAN -- perhaps you will build a small circle of caring people.

Last, I so agree with the advise others gave you above -- how wonderful to have all of these people here. Do you talk by phone with anyone here? I know it isn't the same sometimes because when you try to talk to someone else with the same problem -- they end up 'knowing everything' and you end up not getting to tell what is on your OWN mind -- you end up being a listener... Perhaps that is why the forum works so well -- you CAN tell your own needs without someone else chiming in on you. You CAN get it off your chest -- I know that it helps -- I have done it and it is working because there are so many who truly EMPATHIZE with what you are going through... but there isn't a human listening ear -- so, I do urge you to not give up on people, and not give up looking for a person to be your support people/s.

I do so also agree with Donna about talking to a counsellor -- that is their job -- that is what they do -- and they happen to return some really good advise regarding family and friends. I hope you will try that -- and if you haven't already tried this -- consider contacting your URO's nurse -- not the receptionist -- and ask her if she or anyone she knows could help you when you need to just talk it out.

BEST TO YOU,
HUGS HUGS and more HUGS,
Mary :pray:

[dg2901]

Amy and Mary,

A big thanks to both of you for your input. :angel:

Take care,
D

[tigger_gal]

hey there D.. sorry haven't been on much, have had the baby the last 6 weeks.. my uncle died, my daughter turned 18, and between my sister and the babys mother (sister is babys mother) I think I may pull the plug on them and pretend they don't exist.. :biglaugh: so anywho... know you know I was temperoly restrained from here....
So sorry that your family and friends, cannot just lend an ear to ya.. maybe say hey there, I need to vent this out, all I want you to do is listen, and keep your lip zipped.. (been there done that, then there so confused they shut up) My mom which btw has IC always told me I don't understand your pain... well yesterday, she called me and told me that she could never appriciate what I was telling her because she never understood.. well now she is in pain, and understands how I feel...... but you are right its not that you "want or need" them to understand, you "want and need" them to listen, and support you.....
I really hope you feel better, and always remember that you have us.. and we love you.

[dg2901]

Hey TG..:)

Thanks for your input and suggestions--much appreciated!

Sounds as if you've had your hands full as of late. Hopefully things will settle down with you soon.

Again, thanks for the reply!

Take care!
Diana

[sandramac]

D , i know how you feel and understand as well,There is nothing that I can add that the others here have alreay said . Just wanted to give you and hug and let you know you are not alone! This is the one place that we can all come to good days or bad, and someone will always be here! Hugs Sandra :cat: :cat: :cat:

[dg2901]

Thanks Sandra..:)

Its a good thing there are people somewhere who do infact understand all that comes with this obnoxious disease! :headbang: :cussing:

Take care, dear
Diana

[mattmom]

I am there with you!! I think I ate something that didn't agree with my bladder, and (if you all will excuse my French) I am about to say, to hell with the bladder, I am going to eat whatever I want, and bladder be dammed!!:cussing: :cussing: :cussing:

[Trishann]

Me too. I had a bad day Thursday, I felt like I was butting my head against the wall. My dad is in the hospital, my mother has Alheimer's disease, brother and sisters fighting with each other, bladder doing its owe thing. Needed a friend but I don't think I could have talked.

Went to bed last night, pray,"Lord, I am so low, just want to hid in a hole, just keep your hands over me." This morning I woke up with a peace in my heart. A friend that sticks with me no matter what and his name is "Jesus". That is a true friend, even in trouble times.

Hugs, Trishann

[SharonA]

D...How you doing? Gotta say from these replies that I think we have all been where you are. That's kinda sad. Why can't people just accept each other for who they are, not for who we want them to be?

I remember several years ago, my hubby and I were going through a very hard time (not with each other) and we found out who our real friends were. They were the ones who told us they loved us no matter what. It surprised us who told us that.

I sure wish we did not live all over the map. It would be great if we could come over and lend you a shoulder. Alas, that's not the way it is. Here...pretend I am there with my arm around you supporting you. I am, you know, in spirit. :kissing:

[dg2901]

It's sad that we've all had to experience the extremely low times. What I find even more sad is that so many of us have had to go looking for someone to lean on, only to come away disappointed.
I know last week when I started this thread I was at the lowest place mentally that I've ever been. I wasnt even going to start this thread however someone suggested that I might benefit--indeed I have!!! Thank goodness for you people--ones who understand; ones that wont judge, turn away, etc.
I cherish you guys!

Thanks once again for everyones suggestions, advice, experiences, etc!
:angel:
D

[traceann]

I have no idea who said it, but I suppose it's true you have to experience the bitter to truly appreciate the sweet!! That's not saying it still doesn't stink, lol. Glad to hear you are perking up!!! :)

BIG HUGS!!! I know, it was the keychain that drove you over the edge...*snicker* ;)

[dg2901]

Tracey,
I'm sure the keyring incident is part of the whole problem! Just this past Tuesday I again tore everything up between my living room and spare bedroom looking for it--the husband helped, although he's so frustrated with the whole thing that whenever I bring it up he quickly snaps at me "it no longer exists--give up already!"..:biglaugh: Maybe I need to hire an intuitive to come into my home and figure out this mystery....:hmm:

And youre oh so right about having to taste the bitter in order to enjoy the sweet!..

:)
Diana

[traceann]

Hey there you go! Great idea!! I am sure someone like that would be able to find it, though, most likely it's walked out of your house, so they would probably pinpoint it somewhere in Istanbul or something (did I even spell that right? LOL)!!!!

[dg2901]

Istanbul could infact be where the darned thing has run to. There or possibly Mozambique---all I know is that it no longer resides in my area of VA..haha..

I'm still holding out hope though that one day, when I least expect it, I'll come across it and say "why didnt I think to look for it there!"...Meanwhile I'll attempt to keep it out of my mind. :shake:

D
PS--I'm going to take a picture of the one that didnt get away; maybe make a "have you seen me" flyer and post it........

[glassd18]

What awesome posts. I don't know how I missed this one either!! Glad your feeling better dg2901. I started talking about IC today because my Mother In Law offered me a glass of orange juice, OUCH!!! So I start explaining that I can't drink it yadda yadda yadda, and she interrupts me like I wasn't even talking and starts talking about her IBS, and this happens every time!!! My support is right here, right now because sadly enough I haven't found one flipping person to listen to me except my husband, but even he has his limitations. I've lowered my expectations so I don't get hurt anymore. I'm thinking about avoiding all social situations, and when they maybe ask where I am well.......as if I'm that important in the scheme of life. You people are my ROCK!!! Thank you.

[creatingkarma]

D, I'm sorry that I'm just now seeing your post. I'm glad you're feeling better than you were when you started it. You know I love ya!

[dg2901]

Glassd18--I know how youre feeling regarding the MIL and others who you thought you could count on, yet found out you couldnt. Its stinks, no doubt! its good that you can find the support you need here, though. :)

Karma, no worries! :)..And I'm feeling much better than when I had originally posted!..:)

Hope things are well with everyone else!
:)
diana

[redfearn]

:pray: D

I can totally relate--the only support I have besides this wonderful board here, is my Mother who lives 500+ miles a way. Too me I feel like it is their problem if they don't believe you. I used to take around my bladder pictures and blood work with me in case someone happened to make a comment and then I decided the heck w/ that...if they were a TRUE friend then they would want to help me and support me...So now I pretty much stick to myself. Yes, it hurts both physically and emotionally but to me it is their problem. Everyone deserves to have someone who truly cares and listens. (I got so down one time that I went into a behavioral center for 9 days). I got so much better there b/c even though each had their own problems, they were so supportive. I became known to them as "their little baby"--I'm very small. It helped so much that I didn't want to leave, but I knew I had to face this situation face on....I notice you live in Virginia...I live in SC, but if you EVER want to meet half-way, let me know...I'm totally a safe person (ask Barbs RN)..Just keep your chin up and know you DO have friends here who deeply care.
:)

[dg2901]

Hi Laura,

Thanks for sharing a bit of your situation. You know, the "stick to myself" theory is becoming more logical the longer I have to deal with this issue. While it can be a hard coping skill to learn at first, in the long run theres going to be alot less mental anguish involved; and not to mention a whole heck of alot less disappointment. So in the end it seems as though one might be happier dealing with these issues alone..:)

Thanks again for your post. And I might take you up on the "meeting halfway" one day. Heck, if I would have known a couple of months ago, we may have been able to plan something then, as I was traveling to GA for vacation..:)

Take care, dear
Diana

[ShePurzz]

I hate to sound like a clanging cymbol here, but I think just like the post that talks about weddings bringing out the worst in everyone -- sickness and illness conversations generally scare off everyone we think is our family or friend.

I just have to say it again -- I don't think that we can count on people who don't understand (EMPATHIZE) with IC to carry on a conversation as though they do (SYMPATHIZE). We seem to all share a similar thread -- we continue to HOPE that someone close to us will behave in a way that validates our disease/disorder (i.e. US if we are still seeing ourselves as an extention of our disease).

I think, personally, that what we really need to do -- (speaking generically, but thinking I am probably hitting some nails on the head) that we need to find a way to validate ourselves by recognizing and accepting the IC as a real situation, but not one that DEFINES WHO WE ARE -- but rather WHAT WE HAVE. I believe that when others around us aren't behaving the way we hope/expect they will, we tend to tell ourselves that we are a bit looney and that IC isn't as real as it feels in our life. THAT IS NOT TRUE -- just because someone doesn't believe that the sky is blue, doesn't make it true --

We have a very unfortunate situation in IC -- our symptoms aren't outside of us -- they are inside -- a person with an amputated arm or leg, or carries an oxygen tank, or some other such thing -- we SEE the problem -- we acknowledge it and don't wonder if they really need to use the oxygen or if they are doing it for attention.

On the other hand, we have pain, anxiety, fears, worries, sore muscles, irritable bowels, grumbling bladders, exhaustion even though we don't seem to be very active, etc........) all things that are invisible on the outside.

Others may look at our lives and say "If you would just find something to occupy your time, you would feel better" (I HERE at least 1,000 AMENS! to that comment! We have all been told if we would just stop focussing on ourselves, we would feel better.. ugh! :cussing: )

In reality, I believe we are just looking to be validated and accepted as we are -- and if we felt the validation, perhaps we WOULD get more done -- we probably wouldn't feel so much need to be understood -- if we were understood -- now that was deep! :confused: But really, if SOMEONE close to you would say, "Darn, I am so sorry you are feeling all this pain -- is there ANYTHING I can do to help you get through the day?" is there ONE of us that wouldn't feel better??? Just having a FRIEND is what seems to help us deal with our problem(s).

THAT is precisely why I believe this site works -- YOU KNOW YOU HAVE A FRIEND HERE --- I am just one of many who loves and cares about YOU today!

Let me repeat that "I LOVE AND CARE ABOUT YOU TODAY!!!"

I hope that helps you to pick up a couple of things that are lying around and needing to be put away... I hope it gives you the energy to get one or two loads of clothing taken care of today ... I hope it gives you the 'permission' to lay on the couch if that is how you are feeling today... I hope it gives you the hope that today, you are not going through this alone -- there is at least ONE person who truly cares about YOU today!!!

Group Hugs!
Mary

[lanaiwahine]

First of all, I am so sorry that you are so low. I do know what that feels like, but we somehow manage to take each day as it comes. I have had IC, IBS and Vulvodynia for 13 years now, since the birth of my first child. I believe that I have FMS too but am afraid to get the dx as I cant afford insurance now, much less with a new dx. I have never had any support this entire time. I have been expected to function completely without any concern for my health or pain. I am a mother of 2- 10 and 13 . They are just starting to understand my limitations and are helpful at times. My husband has never been an advocate for me, he has never read one article or book that explains my diseases or symptoms. He makes it clear that he is put out by the fact that he is not getting the sex he needs, despite my pain. He suffers from depression and expects me to be everything to him to make him feel better but never has never returned the favor. I just get told that I am a pain in the arse because I dont want to go go go all the time. I have ruined some dinners because I couldnt make it home with out having diahrrea so bad that I have stopped on the side of the road and done it in public, because I had no choice. His mom was a hypochondriac so I must be too. It just irks me that when he gets a simple cold or flu he will be down and out in bed and expect to be waited on. When I cant move or get off the toilet, I am just letting him and the kids down by not being able to make dinner or do whatever activity they want to do. Maybe I tried so hard to hide my pain and loss of mobility so that I wouldnt be a hardship to my family for so long that they think that I can handle it now. i cant. I am housebound at least 50 % of the time, cant work now, and am on major pain meds at all times. At least some of my symptoms have eased with the pain meds, nothing else worked including a unneccesary hysterectomy. I have handicap plates on my car and you cant imagine the dirty looks that I get for parking there. I dont look sick, but I would challenge anyone to live in my shoes for one day. I know this is true for all of us that suffer in silence. When I was 33 I went and got a 2 ft tiger tattooed on my leg, it represents the strength that I have within and when i look at it I know that I am the only one that I can count on for my strength and to go forward. I am so tired of doctors and their lack of compassion and knowledge. It would be so nice if we had someone at home to help us through all this. Feel free to contact me if you are down and need some support, I understand. It is not right for people who are supposedly your friends or loved ones to not help us. I likened it to this for my husband, not that it did any good but- What if our son had cancer, wouldnt you and I team together and do everything in our power to advocate for him, get him the best treatment available, and provide emotional support for him? Why cant you do the same for me? :cussing: It really hurts that we cant get the support that we need because people are ignorant, judgemental, and insensitive. I hope to god that they never are afflicted with anything remotely as disabling as IC and all the overlapping conditions that seem to come with it. It is up to us to find the support at our weakest moments( so difficult and unfair), that is why it is so important for these forums to be available to us, if not just to vent but to get the support from those that understand and care. There are people out there like me that do understand what you are going through and do care. Best wishes to you,
Gretchen

[ShePurzz]

My husband has never been an advocate for me, he has never read one article or book that explains my diseases or symptoms. He makes it clear that he is put out by the fact that he is not getting the sex he needs, despite my pain. He suffers from depression and expects me to be everything to him to make him feel better but never has never returned the favor. I just get told that I am a pain in the arse because I dont want to go go go all the time....
Gretchen

Gretchen,
I am truly sorry for your situation at home -- how disappointing that has to be for you. I pray that you will continue to be positive in your choice to help others and that you will also find support here for yourself -- you can only give what you have received -- I hope you will continue to be supported and to support others... You are a strong and brave woman!

Mary

Dear Father, Please be with Gretchen today -- help her to feel your loving arms around her and to know that YOU LOVE HER deeply and without condemnation. Help her to find support in others and to continue to be able to be a good mother and loving wife despite the (lack of) help she is getting at home.

I pray that you will ease her symptoms as raising children is so very difficult and she is hurting and suffering and needs your help in all of this. I pray that you will keep her spirit of compassion for others and that you will bring others into your life that will be supportive of her. I pray that you will touch her today and let her know that YOU are beside her, carrying her when she isn't able to walk along side of you.

I also pray that you will speak to her husband's heart and show him the importance of being a loving husband regardless of the health of his wife. I pray that he will find relief from his own depression and that in doing so, he will recognize that IC is a real disease with real problems and that his wife needs his support if their marriage is to be all you intended it to be.

Thank you Lord, for I know that you will do what we ask if we ask in your name,
For it is in the name of Jesus, Christ our Lord that we ask these things,
Amen.
:pray:

[dg2901]

Gretchen,

I hope youre able to find the support you need; if not at home then on this site. While its wonderful that this board exists, its still sad that we have to turn to faceless strangers for the support and understanding that we might need. There are some wonderful people who post on this site--take advantage of what these people have to offer--empathy, sympathy, understanding, etc, and most importantly, without passing judgement or asking for anything in return.

Take care of yourself, dear.
Diana

[~*~Christine~*~]

dg2901, I pretty much feel the same way as ShePurzz; many people just don't know what to say/do when we tell them about our struggles with IC so they either try to move onto another subject or just do very little to comfort us.

I do also believe that many people just don't care as much about our struggles because they don't understand how bad IC really is; Its not like a disease like cancer where people hear it and see it as the mark of death so they have more empathy and understanding for people with it then some other diseases.

Gretchen, I'm very sorry your husband is not showing you the compassion and protection of your well-being that a spouse should have. There is a reason why vows include "In sickness and in health", that's part of the deal, so you should not feel guilty for being ill no matter what he says

[~*~Christine~*~]

she would go off on me about how I dont really need that stuff and it is all mind over matter, and how when she had cancer she didnt really hurt bad enough for her meds so she is sure I dont need pain meds either, etc.
According to Harvard Medical School:
"Their quality of life, research suggests, resembles that of a person on kidney dialysis or suffering from chronic cancer pain"
http://www.health.harvard.edu/newsweek/Diagnosing_and_treating_interstitial_cystitis.htm

[callie0767]

i have no support either. if i really needed it like traveling to atlanta with me for my surgery but then i get the guilt trip. i was told by my mom last week that she did not like me because i was too negative,she doesn't like my personality and no one in my family wants to be around me. well heck yes i was negative last winter-i was sick.i could not eat ,could not sleep and lost 30 pounds. i was only eating oatmeal and pears for awhile. plus no one in my family ever called which is sad because i do so much for them but i realized then that i can only depend on myself. now yesterday she says i misinterpreted what she said.what????????? how can i misinterpret that.she says she is not going to change and doesn't want to talk about it because its a fight and she would rather pretend it did not happen. is that sad? she doesn't even care enough to say sorry or i didnot mean what i said that is all i ask. every time either one of them has said something mean to mean i have just internalized and never said anything.i went through a very traumatic thing 4 years ago and it took a long time to get my self esteem back and i promised myself that i would not let them walk all over me any more. sorry just had to vent.

[lanaiwahine]

Hi Courtney,
I am sorry that you too have people that dont support you. How can people be so cruel. If I have to hear that I dont look sick one more time, I may punch something. Some people lack the coping skills to deal with people like us, they dont know what to say,,are frustrated they cant fix you, or use denial as a way of dealing with it. It would be nice if we werent frustrated, we could fix ourselves, or we could just be in denial and put our heads in the sand. We cant, but they can, how selfish and cruel. It is hard not to be bitter and avoid confronting them, but who has the energy to fight people that will never understand. This is easy to say but hard to do: cut the people in your life that dont give you any benefit out, keep the ones that you benefit from in. If all you do is give, be empathetic, and help others despite your contant pain, and they cant return the favor, they are not worth the relationship. All relationships should be symbiotic, if they are not, then they just cause you pain. There is give and take in all relationships, if they dont give and only take, then it is draining on you and you form resentment. I should take my own advise and get my husband on board. I did force him to read a book recently on IC from a patient's perspective and since then he has been better. He is starting to get it but I think denial is still a strong coping mechanism for him. I am trying to forgive him for all the years that I have resented his denial, or telling me it was all in my head. It is hard, but getting easier the more he learns and tries to help me. I do see some hope in sight as far as he goes, but it will take a long time for him to really understand the suffering I have endured, without compassion.
Your mom sounds a lot like my husband, maybe if she was better informed she could realize that you dont expect her to fix you , just be there for you when you need her. Good luck to you, my heart goes out to you- Gretchen

[callie0767]

thanks gretchen,
but unfortunately i have tried giving them info .i have had ic for a long time and gave them every piece of info i read(except at the beginning) and it does not help. they just are not very sympathetic i think because its a long term illness and none of them have ever experienced that.also the last year has been worse with the endo like i said but hopefully that will be better soon.
its hard to avoid your whole family although i do have one aunt that can be nice but she always so busy. its really my mom,dad,brother and sister.i do have one sister that understands but she lives in ny ,just got married and expecting a child so shes busy. its so isolating sometimes and frustrating.i have managed to stay away from my parents the last few days after what my mom said to me. shes said hurtful things in the past as well as my dad but i feel this is over the top.she doesn't like to talk about negative things so nothing ever gets resolved and she does not believe she did anything wrong.
i am not going to make her apologize because she wouldn't but at least say
she did not mean what she said. i think she at least owes me that. sorry about the long rant but thanks for listening.

[ShePurzz]

Courtney, I hope you are feeling a good deal of support from all of these posts. I just think that your statement above is so true -- they don't show sympathy because they just don't understand -- that is what I contine to think and believe about IC.

However, there isn't a single post in this thread that says "Sorry, I don't understand what you are going through" because we all DO UNDERSTAND and can not only have sympathy for you, but empathy as well -- and while sympathy can make us feel 'yucky' sometimes because we end up dwelling in it... empathy helps us to be pro-active -- when others truly understand and share with us, we look at what THEY are doing to get through and we begin trying new things -- that is what you have here --- THREE PAGES of responses that offer you support, love, hugs, help, listening, caring ears, shoulders to lean on, arms to hold you up, and so much more!!!

I hope you take time to read over this three page thread and recognize that BECAUSE OF YOU and your willingness to write that first post, you have also helped three pages of people to express similar things... THAT is because YOU had the courage to start it and others who wanted to help you, have been helped too by sharing in your situation and getting to get their's off their chest at the same time...

What a wonder this site is!!!

Praise the Lord we have each other...

Do you have anyone from the board in your physical area -- meeting up with someone or emailing off the board may help you too... Hopefully there is an IC support group near you -- but regardless -- you have this place!!!

HUGS

[Trishann]

Courtney, I am so sorry, my heart goes out to you. I don't know why some people can not say "I'm sorry." Sometimes those kind of people say sorry by
being extra nice, or buy you something. Usually they will even denied the wrong they did. It usually does no good to front that person of the wrong.

But you got to remember, especially when they are a family member, that you usually can find something good about them. But if you having a bad day, I definitely would try to stay away from them. Their attitude toward you is not your fault. This is the way they are and you can not change them neither.

I know this is really difficult for you and once again my heart goes out for you. The only thing I can really do is just give you a hug.

Hugs and more hugs, Trishann

[ShePurzz]

Courtney, I am so sorry, my heart goes out to you. I don't know why some people can not say "I'm sorry." Sometimes those kind of people say sorry by
being extra nice, or buy you something. Usually they will even denied the wrong they did. It usually does no good to front that person of the wrong.

But you got to remember, especially when they are a family member, that you usually can find something good about them. But if you having a bad day, I definitely would try to stay away from them. Their attitude toward you is not your fault. This is the way they are and you can not change them neither.

I know this is really difficult for you and once again my heart goes out for you. The only thing I can really do is just give you a hug.

Hugs and more hugs, Trishann

Trishann -- this was such a sweet post -- I applaud you for the wisdom in it!

[Janie Miranda]

Diana,
I am sooo sorry I missed this post earlier. I want you to know that your posts to newbies and others has always been so supportive and unbelievably caring. You were a God send to me when I was having that time of worrying about another health condition. I am very sorry that people in your life have not been there for you the way you are there for others. You are a very special and dear person and if there is anything you need to talk about you can PM me anytime.
Take care of yourself sweetie,

[dg2901]

Jane,

Thanks so much for your reply!! Know that it means alot to me!
I'm glad to hear that you were helped by my posts when you were dealing with the unknown a few weeks ago. And more importantly I'm glad that everything turned out for the best for you and you could put your worries aside.

RE: my situation with not feeling I'm getting the support I need from people in my life; after reading through these responses it seems, unfortunately I'm not alone. While this may sound strange, knowing that i'm not the only one dealing with this issue, made me feel a bit better--I was beginning to think that my not getting support was my problem, that maybe I was asking/needing too much. I believe everyone needs and deserves understanding regardless of what the issue might be. People need to understand that just lending a simple ear to the one who's in need might infact go a long way. I guess though the world's not perfect. With that said, I just cannot imagine turning my back on someone who's reaching out for understanding, compassion, empathy, sympathy, etc--that to me just seems like such a cruel thing to do. Whats the saying---to the world you might be one person, but to one person you might be the world.......

Take care of yourselves!
Diana