EXHAUSTED!!

[SueAnn]

Things to make it easier for me after working a full day:

I try to arrange it so I unload the dish washer in the morning so all I have to do is put the dirty dish in and turn in on at night. 

I went through and decluttered my house a while ago and it makes it easier to keep clean, I don't care about dust anymore.

I take Saturday to recoup and Sunday I get groceries when everyone else is at church so it takes less time.

When I come home from work I take a shower put on my jammies and hope the hubby is cooking dinner.

I don't worry about anything but getting through the workday because I have to work if I want to keep my health insurance, house and car.

I did start Imuran in May and have felt less fatigue since getting up to the full dose, and I still take plaquenil as well.

SueAnn

[melissamrrll]

I also medically retired in 2007 due to the fatique of sjogrens. I now work Monday-Thursday only in the mornings. This is a perfect work schedule for me. I really have learned to take better care of myself.Resting when I am tired is very important.

[susanep]

They still have provigal, and another one that is about the same thing called nuvigal.

susanep 

[soycoffee]

I'm on Provigil for sleep apnea and hypersomnia, and now (since two days ago) on 5 mg/day of Prednisone. Still I fall asleep in front of the tv at night -- did that tonight. Still I have a two-spoons day, as I did today. That was with about ten hours of sleep last night.

All right, that only happens roughly 12 days apart, but it is notable!

On the other hand, two days of minimum dose of Prednisone and suddenly my eyes are tearing and my mouth is watering.

Kelly, I think you would be enough different from me that Provigil and/or Prednisone at a low dose would help you more than they do me. If you still get a to spoons day, lay low and do nothing -- shift stuff to others, to a different day, reschedule, whatever you need to do. But you know that,

The toughest thing for me is summoning the mental energy to meet a challenge. It isn't there any more, and I miss it.

What are you doing right? (Rather focusing on what isn't happening)? Sure, we here to listen to how tough it is, but I'm hoping you are giving yourself credit for coping with an even tougher work situation.

Best,
Soycoffee

[KellyG999]

Soycoffee - thank you for the nice message. And you know, you're right! I have gone back to work, full time and then some. Even though I am tired, I HAVE been able to slip back in and get caught up on my projects. I have also learned that I CAN delegate some of my work to others - they had to do my work while I was gone and it went just fine. So even though I sometimes have to pack up early and do the rest of my work from home (in jammies with a hot water bottle) I am still getting it done, plus taking care of my 10 year old son, hubby, two dogs and a kitty. That's a lot, and I still do OK> Thanks for inspiring me to focus on my accomplishments instead of just my limitations.

Hugs!

KellyG

[Carolina]

Dear Kelly,

All the work you do would be exhausting to everyone, even people who are NOT dealing with a chronic condition.

When I was in graduate school one of the deans told this story:

"We all set out to climb the mountain of life.

And we choose some suitcases to carry up the mountain with us.

The suitcases are:  WORK, MARRIAGE, FAMILY, COMMUNITY, and others, perhaps more individual.

It is a rare person who can really carry them all up at once!   Some people give up on one or more of the suitcases.

Some people leave a suitcase and go back and get it later. (I did this by not working a serious corporate career until my younger son was 14).

It is important to know that you don't have to carry them all up at once."

This talk was the result of research that the dean had done on successful women in corporate life.  Most of them had either not married, married and had no children, or were divorced or widowed with children.

The combination of marriage, children and work can be overwhelming.

You are amazing to me, carrying each suitcase and dealing with illness.

I don't have a suggestion for added energy.  I wish I did.

I do understand that for some people prednisone can be a huge boost, at least in the short run.

Exhaustion and depression are co-conditions of auto immune diseases like Sjogren's.  NOT the result of the illness, but actually PART of the illness. 

I find this very hard for any of us to accept.

Life is difficult and making decisions about balance and change is one of the hardest things we have to do.

Please keep us posted on your journey!

Hugs

Elaine

[engy]

Kelly,
You are doing great! SueAnn gave good suggestions as did others. I am going through the same issues. Coq10 has helped & dribose gets me through the afternoons. I'm still tired & achy but not as much (plaquenil has helped me tremendously too).

I've been so tired that even though I check in, I rarely have the energy to reply.

Carolina, great analogy!

Good luck.  Carie

[KellyG999]

Carie - CoQ10? I'll try it. I am a big proponent of natural/organic/homeopathis stuff. I guess that's why I struggle with guilt over taking real pain meds, but honestly I can't do anything on days I don't take at least one.

Elaine - LOVE LOVE LOVE the story. I never thought of it like that. Thank you for the posting and the kind words. I am still trying to take one day at a time. God fives me grace sufficient to get through the day, but if I look too far ahead I get depressed.

Thanks for all the support, I really need it.

KellyG