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  • Are you debilitated? Please post here....

    Are there many out there who are totally debilitated from IC and related conditions? PLEASE post here. Are there any of you out there who rarely leave home because of the illness? What do you do? Could you go to a family birthday? Can you tell me a little of what your life is like? I want to get a snapshot of what life is like for those who have the worst cases. I am trying to determine if I am alone in my limitations. Please post. This thread could help my family to see that it really can rob you of everything "normal,and that I am not the only one. Is there anyone out there who never goes anywhere..no trips, no store, no dinner, no family functions? How many of us are there? I look forward to following up with you.
    Thanks for answering.

  • #2
    SM, I feel much like you do. I don't go out much, not just from the IC, but I also have severe asthma. I'm getting to the point where I start to panic if I have to leave the house. I never know when I will have a horrible bladder spasm. I can't sit anymore, I have to have my legs up, because of the pelvic pain. I quit working 2 years ago, I am on social security disability. My family is very understanding about my disease. If I go to one of my family members house, they give me the most comfortable chair (like a lazy boy where my legs are up.) I can't go to church anymore because the pews are too hard. I recently tried to go to the grocery store, and I couldn't do it, my daughter was with me, and I had to go to the car, and she finished the shopping. She is 20 and took a semister off from college, so she could do all the Christmas shopping for me. I don't know what I would do without her. My husband is also very supportive, esp. because I feel like a failure as a wife. I have 2 sons 13 and 14 and they are very helpful too. I have tried every treatment available and nothing works for me. I have been wondering lately if their is anyone else out there like me.
    carly

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    • #3
      Hi Sm,
      YES! YES!!! I haven't been to church in over a year, due to the last time I went I had to go 4 times in an hour service. It was then that my husband and I decided that the stress of trying to go someplace was just too much. I hope your family understands. Its not a picnic for us either. I pee 30-35 times aday and that does not include night time. I have had it. I am getting the Insterin done next month, maybe then some of the urgerncy and frequency will give me my life back. The pain (which the insterim will not help) is so bad that I vomit. Who would want to go anyplace with all this going on.
      I pray your family is understanding with you. If you need me just P.M. I will be here for you.
      HUGS
      SUSAN
      Susan
      People may not remember exactly what "you did, or what you said, but- they will always remember how you made them feel"

      Comment


      • #4
        I too am a stay at home all the time wife and mom. I am fortunate in that I am still able to work from home for my family's business. I do not go anywhere. BUT , it has not always been like this. Over the past few years there have been times when I was able to go out and feel good. I'm just having a rough time now but I do believe that I will feel good again.

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        • #5
          I know how ya'll feel i dont go no where much unless it is just a have to thing. the heparin i have been taking does help me some but when i'm flareing and that has been alot lately i dont go anywhere but to the doctor and back home i dont even drive much my husband does most of the driving and i even have to send him to the store. I did let IC take over my life but i'm still fighting with it I can't let it control me even tho it has me right now i will fight it until i find a way out.
          thanks.
          Medicine taken daily or as needed:
          1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
          2. MS.Cotin 100mg 3x daily
          3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
          4. Fentanyl 100 mg Change every 48hrs.
          5. Gentamicin 80mg install after each rescue treatment
          5 Leviquin 500mg self start as needed.
          6. Klonopin 1 or 2 daily as needed.
          7. Prosed/DS as 1 every 6hrs as needed.





          I have IC, but IC doesn't have me anymore!

          Comment


          • #6
            Hi, SM. I feel like I am totally debilitated but from EC, not IC. There are many days that I really just want to stay home and in bed, but I don't. A long while back I had a partial cystectomy done. After the surgery I gave into the disease and did not go out. I sank into a depression. One day (many months later) I decided that was just not the way to live. I forced myself to go out and try to live as normally as possible. Believe me, it is not easy. I suffer from constant pain, burning, spasms, bleeding, clot retention, fatigue, and severe anemia. scream Trying to walk and carry my pocketbook at the same time is a chore (due to my extremely low blood count). But I do! I work full time, even though it is extremely difficult. I know physically I would be better off at home but emotionally I know I need to get out. Don't get me wrong, there are days I do say forget it and just hang out on the couch - we all need those days! Try to hang in there. Don't try to do everything, pick out the few things that mean the most to you and go for it. I may not get to every party or celebration, but the ones that are important I try my best to get there. It is difficult, and most of the time I have to force myself to go, but in the long run it is worth it. Life is too short and I don't want to miss out on what's important. I need these memories for the days that I can't do it.

            I hope things start getting better for you real soon. kissing

            Jeanne

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            • #7
              Hi hi
              I have had IC for two and a half years now. Ihave tried all the usual meds, from elmiron to elavil, detrol to neurontin. I have had many negative side effects from many of these meds, and have been forced to stop taking them. Currently I take detrol occasionally, til it causes retention, then I have to stop for awhile.I take some heavy duty pain meds, which are necessary to live with the amount of normalcy with which I live. I used to feel really upset,weak,and paranoid taking thses meds, but folks here, not naming any names (Donna kissing )who have helped me to understand that I need these meds, just like a diabetic needs her insulin.I am a mom with 3 young kids, 7,12, and 14 jester I love them to peices, and they try to understand my disease the best they can. Sometimes we all, myself included, get pretty darn sick of this whole thing, especially when I am flaring, so cannot do much. My life has changed in that I used to be a social butterfly, was on every committee everywhere, and was never home. Now I have become more introverted. It is not that I don't want to see people, but I tire easily, am frequently in pain, can only eat certain things, don't drink anymore, and some days, I just plain don't feel like answering questions about IC. At other times, when I am in remission ( have had one 3 month remission in last 2 years}I feel pretty good, and do a bit more, go out more... And of course, yes, it has absolutely ruined my intimate life with hubby. He gets easily frustrated with me, and I just cry and say how sorry I am.So that is my life with IC. Sorry, I guess I didn't paint you a very pretty picture, but I know others here who can tell you a very different hopeful happy story.If I can offer any advice it would be to get yourself the best medical team possible.Invite family members along on the non invasive days, or bring home lierature for them to read.Try to make the most of every day...even if it sucks! And feel free to come to this board as often as you like for support, a hug, or even if you need to vent. So, nice meeting you, and best of luck to you as this new chapter in your life begins. grouphug
              Wishing you the best, today, tomorrow, and always! Sheri G

              Comment


              • #8
                Hi, hi

                I tried to ingnore my condition for many years. I tried to do many things without limitations. Of course, it didn't work. I became only worse and more frustrated. Right now I try to be very carefull with what I am going to do and plan ahead of time. I didn't go to movies for years and recently decided to try to go. Of course, I missed a big part of the movie running all the time to the bathroom and not being able to pee most of the time. I came home and realized what happened to me. My thoughts (my worries)about not being able to make through the entire movie put me under stress. I hope when I go next time to the movie I will be less stressful and it will work better. What I have learned is that our thoughts influence everything we do and can help us to be healed. I noticed that I became a highly depressed and hopeless person and stayed in my own shell with bad thoughts about both the future and the present. Right now I try to work on a different approach with strong positive thoughts. I am still working on it and I am so far away from being successful but some day I hope I will be able to do more things than I am doing right now. I hope that it will be a little helpful to you. You are not alone. grouphug Many of us can't do things that we used to do and I understand it is very frustrating and can make you very unhappy.
                You are not alone!!!! grouphug
                With my warm wishes,
                Olga

                Comment


                • #9
                  SM,

                  I was so happy to see your post because I too am unable to do most of the things I used to do.
                  Like sit, walk through the grocery store or wherever without pain. The first thing I do is go to the bathroom toilet several times. I never had to do that before. As I leave the pain is so bad that as I search for my car I pray that I make it. Each step is so difficult because of the severe sharp stabbing pains in my pelvis. Forget movies,restuarants, church because like someone else said the pews are wood. I've gone to resuarants a few times only to stand most of the time, as it's better than sitting. I feel like an old lady as I walk and people stare at me, I'm only in my 40's.

                  All this has caused me to stay in most of the time unless I need to go to the dr., or store. I'm lucky in that if I need something and just can't make it out a friend or neighbor will take care of it for me.

                  You asked what those of us did and I sleep a lot because of the meds., watch a lot of tv, read and use computer.The only time I'm sitting is when I'm on computer, I lay down on the sofa to read and watch tv. I even stand to eat.


                  I no longer even talk to my friends at work because I feel like doom and clume and they just don't understand why I have't gone back. I became ill last Dec. and was diagnosed in Feb. I've tried to go back several times but after a few hrs. I just can't stand the pain and of course the sitting.


                  I miss my life so much, I miss me as I was before this nasty ic. I was so active, exercised a lot, worked a lot and did many things with many friends. My family does not live close to me so I don't have to worry about family get togethers except the holidays, which I absolutely dreaded this year. I do cringe as my parents call me several times a week and ask how I feel. Whenever I say better there reply is "oh, you must be getting over it", or they say, "you sound better today". They don't understand. Last week my mom sent me a teeny tiny article about a woman who cured herself of ic by eating asparagus. Now they want me to load up on it. Whatever cussing banghead

                  cussing banghead toilet

                  WOW, did it feel good to unload!!!!!!!!!!!!!
                  It will be interesting to see how many more replys are posted. Thanks to all of you. grouphug

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                  • #10
                    Julie hit the nail on the head ! I try to sound happy and chirpy on the phone when anyone calls and invaribly I am asked if I'm better ! No, I'm not better. Yes, I'm in pain. But, who wants to say that ? It's bad enough being sick all the time without sounding sick all the time !

                    Comment


                    • #11
                      Thanks for your replies. KEEP POSTING! I know there are more of you out there. Let's here from those of you who are severely limited. I think this is very helpful. Sometimes it seems life is passing by, and you can't imagine there is anybody else out there in your same situation. I look forward to hearing what life is like from more of you.
                      thank you

                      Comment


                      • #12
                        SM, Thanks for posting. I really thought I was the only one whose IC was so debilitating. It does help to know there are others suffering like me. What will become of us in another ten years? If we can barely sit now, what will happen?
                        carly

                        Comment


                        • #13
                          SM,

                          I'm not totally incapacitated by IC, but it has changed my life dramatically, so I thought I'd respond.

                          I am able to work full time as a teacher assistant, but it is not easy getting myself to work in the morning. Waking up several times in the middle of the night does not make for very restful, let alone, rejuvenating, sleep. The lack of sleep alone seems to make me susceptible to just about every stupid bug that goes around. I use close to the allotted 15 sick days per year, and feel guilty about taking them. I work hard on trying to accept that this is what I've been dealt. Most of the time, I do okay.

                          The hardest thing has been not going places that I used to. I have a tendency to retain if I can't get to the bathroom when I need to. When that happens, I need to be catheterized. That fear has kept me in-state -- in county, really -- for the past 5 years. My worst nightmare is sitting in traffic where all you can see ahead of you are stretches and stretches of brake lights. So, I tend to avoid all situations where that could happen.

                          I've also lost a few friends or had arguments with others. People are very skeptical of something they have never heard of. If you said you had diabetes, heart disease, cancer, etc, you would get tons of understanding, but not with IC. They also grossly underestimate the effects of chronic illness on daily living. It's very hard when you have something that flares -- you feel as if you can never relax for long because you never know when you're going to get slammed again. I've heard all kinds of comments that were very hurtful. The bottom line is, when you need someone who REALLY understands, come here to the board -- it's your safest bet.

                          Be well,
                          Mackie

                          Comment


                          • #14
                            Hi..my life to has changed since this horrible stuff came into my life...I am 45 yrs old and use to be very active in Church activities..I was Childrens Director for 18 yrs in my Church and have filled the position of S.S.Superintendent for the last 3 yrs..I had to give up my Childrens work as I didn't have the energy or strength to do it anymore..I still do my Sundy School tho as it is a bright spot in my life...I have 8 beautiful Grand children and love them dearly.. but Granny Shelia as they call me isn't able to play ball,go for walks and swims with them anymore,I do good to read to them,color or play board games with them thanks to IC..my 5 yr old Granddaughter told her mom she couldn't stay with Granny Shelia anymore cause she's not fun to be around..you talk about hurting..it literally frustrates me for people to say..I'm here for you just call and we'll talk or I know what your going thru..but they don't they don't live with the constsant pain and the having to run to the bathroom constantly..they don't loose sleep or suffer thru yet another failed treatment...they all can get on with their lives and never look back...my very best friend has now deserted me cause I'm unable to go to the malls shopping and to their quote unquote parties...I spend my weekends and nights at home usually alone..as my husband can't cope with the pain I'm in an dhe stays gone most of the time..I'm sorry for venting like this but I have no one here who knows or cares whats going on..
                            Thanks to the people hear I do have someone who understands and I thank God everyday for you all..
                            Shelia

                            Comment


                            • #15
                              Yup..my life has been turned upside down and inside out..."what we have here, is an opportunity..." I guess. I am a special ed teacher and I haven't been working since last April and likely won't return to my field. I am looking at updating my Teacher's Cert. so I can work with vision impaired kids. My schedule would be really flexible, possible even private practice with adults. I can set my own hours. My doc asked how many hours we were looking at for school, I told him part time over the internet from my previous school. He thought that was great because he doesn't see me going back to work ever unless my condition turns around 300%. (Neat, huh) I'm trying to have a positive attitiude.

                              Good luck!
                              I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

                              Medications I CURRENTLY take:
                              90 mgs Ms contin (45 mgs Am/PM)
                              Percocet as needed
                              Topomax 100mg day
                              Ambien 10 mg bed
                              desipramine 25 mgs




                              If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
                              Albert Einstein

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