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  • #16
    I am not confined to home like a lot of you ladies who have posted, but sometimes I do get tired of my family making fun of me because I have to take a nap every afternoon. I used to get upset with them, but now I just smile and enjoy my nap!!LOL! When you take all kinds of meds for your bladder that are sedating, it's kind of hard not to go to sleep at some point in the day. To SM, thanks for posting this topic!! I feel better now that I shared that! I needed to vent a little. Happy napping to all...............Christie

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    • #17
      I was bedridden for 4 years with IC. Then i discovered that long term use of elavil helped and now I am pain free. But that came after losing my job, home, etc. We all have to stick together and give each other support as most outsiders dont understand what we go through. I am back at work now but still have issues with depression over what I lost because of IC.

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      • #18
        Thank you for your replies! I KNOW there are more of you! Who's afraid they won't be able to celebrate Valentine's? Do you feel guilty when you have to tell your loved ones you don't feel up to something..over and over..
        Does that guilty feeling ever go away?

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        • #19
          Don't know if the guilt goes away. I think it depends upon the person, and it also depends on whats happening in your life. you may feel just hunky dory for a while then all the sudden "WHAM"...something hits you that ain't right. and you get the feeling that it is your fault. (ie: the family can't go to various things together like we used to , we may need to really scale down our family vacation this summer, and yes, sex is a real problem.....He's been very understanding but he is a normal human being with a normal sex drive so what do you do?) We do " mess around" and I make sure things are ok for him when I'm up to it...(Hey creativity is a marvelous piece of humanity) but its not the same. Especially if he touches me and it hurts.
          As my counselor says, and I'velearned over the years....guilt is a self impose emotion.......Only you can bring it on. Try your best to use your head to come up with a solution to your problem rather than just feeling bad about it. ( Easy to say, hard to do)

          Best of luck to you!
          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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          • #20
            Hi,

            I'm not totally debilitated but yes, many times I am and it has most definitely made me more of a loner type person. It's hard to make friends when you don't feel well enough to go anywhere many times. And the hurtful thing I've also gone through is having family actually think I just didn't want to see them when asked to come visit, but I just wasn't well enough. Traveling is difficult as sitting in the car for hours is very difficult. I don't work now, except part-time occasionally, not every day.

            I started taking Cardura and it has really helped relax my bladder and since I started 6 months ago taking a daily antibiotic and also I recently began Detrol and I think I will be doing better now. I had tried to take the Detrol before and it didn't agree with me, but I've been taking it for a week and so far so good except for headache and little sleepy sometimes.

            But yes, it can be a very debilitating disease.

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