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Am I going crazy!?

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Posted 8/24/2008 11:25 PM (GMT 0)

I am SO exhausted with all of this stuff! 

 

If I'm thinking clearly, my body doesn't want to cooperate...If I'm foggy headed then my body is ready to go!  I am feeling so overwhelmed! 

 

Doctors and meds and therapists and family and friends and aches and pains and naps...and everything! 

 

Whew!  Whats a girl to do?  I don't get online too much and my social network has dwindled, I seem to now be unable to commit to anything.  I hate to disappoint people when I say I wanna do something and then can't.  Noone seems to understand all of this.

 

Hopkins sends me lab results weekly with NO explanation, just abnormal findings!?!?  Ahhh!  I feel like I'm so over all of this mumbo jumbo!

 

And how about naps...anyone HAVE to take a nap, even when your feeling pretty good?  Although I dont want to believe it, I do feel  better when I have a rest period everyday...even on a good day.  I feel like I pay for my activities the following day.  I am struggling with that rest period thing...I seem to over do it one day and be laid up the next and if I really push it for a day or two, my week is shot and I find myself in crazy pain!

 

My local doctor (PCP) told me last week that he is not licensed to treat pain and wrote a script for four Percocet! 

 

Im trying not to get beat down, its getting really hard though!  Any coping advice?

Posted 8/24/2008 11:43 PM (GMT 0)
SSDore, Don't feel bad about napping. Most countries build a rest-time into their workday!! Nothing wrong with giving your body a rest when you need it. labtestonline.org has lots of brief info on labs. I've looked up many tests there. Really helpful. Sorry you are having a rough time. Blessings!
Posted 8/24/2008 11:48 PM (GMT 0)
Thank you for the site info. I'm gonna take a look. The most recent, a thrombotic study, seems so confusing!

Thank you again!
Posted 8/25/2008 2:02 AM (GMT 0)
Oh yes! Naps are a girl's best friend.  I TRY to take one every day, even if I don't feel I need it.  Don't feel bad about needing a rest in the afternoon.  Even people who don't have lupus need a nap.  So you're all good!  I just read that you are a mom too!  WHOA.  That alone gives you all the right to put your head down for a bit!

 

Ginny

Posted 8/25/2008 2:12 AM (GMT 0)
Hi SSDore,
So sorry you're having such a hard time. I know what you mean about the social network dwindling, and not wanting to disappoint people. It is SO hard to find the energy sometimes, and unfortunately most people really don't understand what it means to be in such limbo all the time - never knowing when the energy and/or pain is going to ruin plans and make you miserable.

A neuromuscular massage therapist told me once she could see why it would be difficult to be vertical in my world....and that I seemed to "even out" when I layed down, and should try to do that for 10 min. every two hours. It's harder to do that it sounds....but I do feel better with a rest period - whether my body is crying for it or not!

I still can't always figure out where the line is between doing "enough" and over-doing, and I've been at it a few years. And just when you figure it out something changes. So just pace yourself & don't fret about needing rest periods - as long as they help they can't be bad!
Peace,
Lucy
Posted 8/25/2008 9:23 AM (GMT 0)
Unfortunately something in your life have to change. The days of making plans are diffinently over. I can't tell somone ahead of time I will do somthing with them. I don't know until the day comes how I am feeling. It also hurts when people go do things and don't ask me to come along because I won't be able to keep up. I alway feel like I'd be just a drag to be around. It would be nice though if they asked me to do somthing I actual would be able to do. Like go have lunch instead of go to the fair or somthing. and yes naps are a good thing!
hugs
carol
Posted 8/25/2008 1:49 PM (GMT 0)
I've been telling family and friends that although I can't make a certain outing due to possible heat problems or fatigue, I would love to have them over to my house. My DH is a wonderful cook, so dinner plans are great. When I'm home, I know what my kids can get into, the house is baby proofed with plenty of things to keep them occupied. This way I don't spend a whole evening out running after them. Also, one thing I never used to do, is that if I'm too tired by the end of the night, the dishes can wait until morning. I just moved to a bigger house, so now we can entertain bigger groups of people. If I can't make a social life outside the house, I'll make one here at home. Good luck and God Bless.
Posted 8/25/2008 3:10 PM (GMT 0)
Hi SSDore, all of this can be very overwhelming. Just do what you can do when you can do it! If you push yourself you are the only one that will pay for it. Hang in there ((((hugs))))
Posted 8/25/2008 3:39 PM (GMT 0)
Hi SSDore,

Welcome to the forum. It sounds like this is just the place you need to be. Oh can I relate to where you are and sympathize with how overwhelming this can all be.

I'd like to know more about you. If you're 33, then your child must be young. Do you work outside the home or at home? How long have you been sick? It's apparent that you don't have the support from your doctor that you need. I think you'll find all the moral support, answers, and friendships here that are missing in your life. We aren't doctors and we can't answer medical questions nor diagnose, but we can share our own experiences and offer our own suggestion as to how we cope and deal with these AI diseases.

We all deal with the need to rest and I know what you mean about paying the following day for doing too much today. If I have an important event that I especially want to take part in, I plan to spend the next day or two resting at home. Fortunately, although it has taken a while, my family understands and is supportive, and I hope yours is. Friends are a different matter. Most have trouble understanding and some fall by the wayside. With time I've learned to accept that. But it's tough. Acceptance has become my friend. As others have said here, naps are crutial to our well being. I hope you can fit them in as often as you want.

When I was in my first real bad flare, four years ago, I went into a pretty bad depression, probably because I was so overwhelmed, as you are. This forum became my lifeline because I could connect with people who understood what I was going through and I could talk freely about what I was going through. The people in my life didn't want to hear about it, nor did I want to be known only as a lupus patient. But here I could dwell on it, complain about it, whine, cry, ask questions, get support, and support others. Then I found myself offering support to others, and finally I began to pull myself together and learn better coping skills. I wonder how I could have done it myself.

So welcome, friend. You really have come to the right place. I look forward to getting to know you better.

Pat
Posted 8/26/2008 12:46 AM (GMT 0)
Thank you to each of you! Your kind and supportive words really do help! Mentally and emotionally I do feel a bit better today. Physically, thats another story but I am finding that a positive attitude helps.

I am 31, single mom of a 7 year old daughter. I worked up until early 2005 and attempted to return to working in Feb 2008. I made it 3 months at a very part time position. I tried. I even had a job coach through the VA Dept of Rehabilitation. I couldnt do it.

I have known something wasn't right for many years. The doc's didn't seem interested in my symptoms until 2004. In 2004 I was told UCTD. In 2005, SLE. I became a patient at Johns Hopkins July 2005 and been under thier care as well as my primary. Feb 2008 got really bad and I havent seemed to have bounced back yet.

Every Saturday since March, I check my mailbox to get my dreaded lab results. Apparently my bood is clotting to much or too easily? I forgot what the Doc said this morning on the phone. I am awaiting another call, to tell me what new med to take, statins?? Cardiac labs are abnormal, somethin in my urine....it's never ending!

Worse part about all this is that this post is the only outlet I have. I cant discuss this w a 7 yr old...my mother doesnt want to believe that I truely am tired/exhausted. I think its easier for her to play the blame game...and of course, Its my fault! Im lazy! That darn laziness and inability to hold my eyes open is my husbands excuse for leaving us in 2005! My best friend, he is scared and doesn't want to know anything.

My daughter told me today that I am getting more different. I asked her what she meant and she said that I dont do the stuff I used to do like helping her do things and fix her favorite dinners and wake her up happy. She is adapting to becoming more independent and I dont see that as an entirely bad thing at all.

The sad part is my child will never know me as the person I was. She doesnt remember the long walks and trips camping and the zoo. I am fearful that she will begin to resent me. I missed her field trips and many school functions last year. She has had to see and hear alot this year. I fear that she will be upset because her mom wont take her here and go there...I show her old photos and some of my prior accomplishments and she has a hard time believing that I actually did those things, as do most people.

Granted, she has learned about accepting people for who they are. When I first began to loose my hair she nicely asked me to wear a hat at her school. I did. After I became accepting of my lack of hair I quit wearing my hats all together and she decided that it was ok for no hat at the school also.

Ok so thats a lil about me...Thanks for listening!
Posted 8/26/2008 1:25 AM (GMT 0)
Your daughter will always know you as a caring and loving mother, and if I had to bet, she'd rather have a sick mother who loves her than a healthy mother who neglects her. We all do the best we can as parents and please don't feel you have to apologize for being ill. Besides, one day you may go into remission. But don't think for a minute that I haven't had the same feelings as you. I for one will never give up hope of going into remission and I'm coming out of a bad flare as we speak. I'm much better than I was four years ago. Don't ever give up.

As for the people who don't believe we're sick, I've decided that it's really their loss, not ours. Have you ever seen the Spoon Theory? I don't remember how to find it, but you can google it, or someone here will tell you where to find it. It's a wonderful writing that describes the life of a lupus patient in terms that our families and friends can understand, should they chose to try. I've shared it with a few close friends and family and have gotten nothing but positive feedback from them. Maybe with time your mother will come around. For your sake, I hope so.

I'm so happy you have found this outlet.

Pat
Posted 8/26/2008 1:29 AM (GMT 0)
Thank you Pat! I'm headed to bed on a positive note!
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