Frustrated

[redsox21]

Hi Everyone,
I was diagnosed a few weeks ago with renal lupus but have been feeling the pain and exhaustion for a few months now. The last couple of weeks have been the worst. Work has been so difficult. I work the night shift at a group home and I find that I'm tiring out wicked easily and I'm ready for bed at 7pm. I'm so frustrated because I was always on the go and active and now I feel like I'm 86 instead of 26. When people ask me how I'm doing its hard to explain to them. I'm aggravated because I keep turning my friends down when they ask me to go out. I feel like such a party pooper but I just don't have the energy. For the past two weeks I have felt so horrible...just want to stay in bed and sleep. I'm so confused too about how to talk to my supervisor. She knows I have lupus and I've been in pain but I don't know how to explain to her how I'm feeling now. I was holding up well until recently but have really been struggling by the end of my shift. I do have to say I lucked out because she is wonderful and has been so easy going around all the doctors apt. I've had to go to. I still have to wait another month to see the kidney specialist which seems so far away. I wish there was a magic wand someone coul wave and make me better. Well thanks for listening. Sorry to ramble on....Its so great to know that there are wonderful people to talk to and listen to.

Take care,
Phebe

[T. A. Bossmeier]

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Hi Phebe,

I am sorry that you are feeling so horrible right now and I know how hard it is to try and keep working and still get enough rest. I used to work the nightshift also and I finally had to give up and retire but I was much older than you.

I really don't have any magic wand or I would wave it for all the people who suffer from autoimmune diseases as well as other chronic disorders. I can only tell you that with your kidneys involved it is important that you try to get enough rest regardless of what your friends need. True friends would not expect you to jeopardize your health inorder to make them feel better .

But, I ramble here, I just wanted to welcome you to the boards and tell you that we would love to have you in chat sometime. There are many kind and caring people on this site who will do their best to offer support and comfort and answer questions if you have them.

I am sure there will be others along to welcome you and perhaps offer better advice.

Wishing you happiness and better health,

[Joandublin]

Hi Phebe

Just like the others I wanted to say I am sorry you are feeling so poorly. It is very hard to keep going every day when you are feeling rotten. I work full time (well 4 days a week). I had to reduce my work days last years from 5 to 4. I just couldnt cope with 5 full days. I find the 4 days much better but even sometimes I struggle just getting through the day.
I know the party pooper feeling. I am embarrassed now when friends ring me and ask me out. I usually cant go because I need to be in bed by about 8.00pm. Even on the nights when I dont have work the next day I still go to bed early cos it means I can get more rest than during the week!
I used to say I was 'exhausted' but now I find that I make up other little excuses. Sometimes it makes it easier for them to accept and at the end of the day it makes my life a bit easier!
In the meantime I hope you feel better real soon and that your appointment goes well
Luv n stuff
Joan

[Oohmeknees]

Yes, its very difficult, the silent symptom all of us with this range of illness suffer from,...trying to explain we feel bad, and even our nearest and dearest cannot see it.

At the begining I found this nearly as bad as the symptoms of the illnesses I was experiencing. It almost felt like disbelief and rejection. There were times I may have looked okay, but I knew I was not. The thought of being put on the spot and being asked to do something that I knew I may have great difficulty in doing, or later would really pay the price for (by being out of it for two or three days), would terrify me. So I tended to avoid those times.

It takes a little time for you to find out what your limitations are, but that is what you need to do. Read your own body. In time you'll see that you can go out with your friends, but perhaps you will not dance to Rock around the Clock so vigouresly (or at all) but you might still dance in the arms of someone you want too. So you will still go out dancing. Other things I'm affraid you might have to stop, because with those you will not always get the chance to decide what you have to do (things like sailing/rock climbing etc.)

Like may others I gave up trying to explain things to people, I just say I'm not 100%. I go out, but I dont engage in everything that others of my age do. If I am really bad, I dont go out. There would be no point. Feeling bad, is bad enough, but I dont want to prolong that because I've tried to do something my body is trying to say to me,..........Ooooohhhhhhhh Noooooooo!!!

I have not tried it, but it would not suprise me if meditation or relaxation classess might help you. You've hit the wall we all have to face, that too brings its own stress.

Best of luck.

[granola]

Hello, I also suffer renal impairment and work with severely multiply impaired children. Work was tough until the steroids made me hyper, then I would crash. I found that a pillow and a blanket during my lunch break and staff to wake me up helped me get through the day. I often would take another 30 minute nap before trying to drive home. And of course a nap when I would get home. I took awhile to get the sleep/awake cycle in sync with my day to day life. Many a nights I spent awake reading, almost afaied to go to sleep and face another day. It did get better, I am thankful. Hope you feel better soon. granola

[lazylegs]

Don't feel like a party pooper. You are doing what is best for your body. Sounds like it may be time to ask if it is possible to work a shorter shift, one less day, or be able to take an extra break. By cutting back maybe you won't have to call in sick when your body says its had enough.

Take care,
Lazylegs

[CalmIn]

I have to agree wid granola lots of cat naps is the only way to combat that bitch fatigue. But I just wanted to ask why do you have to wait so long to see a kidney specialist? Are you currently receiving treatment?
Is it possible for you to take some time off whilst you readjust. From my experience you tend to get worse before you get better? Hang in there u got people here who know what you're going through.

[helloos]

Hi there.

If I had that magic wand I would make you better and everyone else on this board.

It is frustrating - I know.

Hang in there. Can they put you on the cancelation list for that doctor. Geesh, that is long time away.

The wait is what kills us.

By the way, I like your screen name.

Go Sox!