OMG sooo tiered!!!!!!!

[cport]

 

OMG!!!!!

iT IS SOOOO HARD TO BELIEVE THAT YOU COULD ACTUALLY FEEL THIS TIERED. IT'S NOT EVEN A FEELING OF TIERDNESS....IT'S BEYOND THAT.

IT'S SO HARD TO MAKE PEOPLE UNDERSTAND HOW BAD IT IS.

WHEN I TELL FRIENDS I'M TO TIERED TO DO THE HOUSEWORK THEY THINK I'M JUST BEING LAZY. WHEN PEOPLE COME OVER AND I EXCUSE THE MESS I SEE THERE EYES ROLLING AS IF TO SAY 'WELL SHE OBVIOUSLY JUST CAN'T BE BOTHERED'......WRONG!!!!

I'D LOVE TO LIVE IN A SPOTLESS HOUSE BUT I ALSO HAVE TWO YOUNG KIDS TO LOOK AFTER. THAT USES UP WHAT LITTLE ENERGY I HAVE.

SO AGAIN FOR ANOTHER DAY I WILL CONTINUE TO LOOK AT THE MESS AND THINK OMG...I REALLY NEED TO TIDY UP!!!!!!!

[Patze]

Hi cport,

Has your doctor put you on any meds yet?  If he has, what kinds?

I know that the exhaustion was just miserable, and I struggled with it a long time before the right combo of meds finally took hold.  Whew, I don't know how you're doing it with a couple of young kids, that's got to be so tough!

Hang in there and talk to your doctor about it, and hopefully he'll prescribe a med that'll help you soon.

Take care -

Patze

[cport]

HI PATZE,

I'VE RECENTLLY JUST STOPPED A SIX WEEK COURSE OF STEROIDS AND I MUST SAY THAT THE FIRST COUPLE OF WEEKS ON THE HIGH DOSE I WAS GREAT,HAD LOADS OF ENERGY BUT AS THE DOSE DECREASED SO DID MY ENERGY. I'M ALSO ON HYDROXYCHLORAQUINE 400MG A DAY.

I'M SEEING DR ON MONDAY AND SHE IS FANTASTIC!!!!! SHE'S TALKING ABOUT STARTING IMMUNOSUPRESSANTS SO MIGHT BE ON THEM BY NEXT WEEK XXXX

[wordnerd]

Hi cport,

I'm wondering if you are tapering off the prednisone too fast.  Doing so can cause really bad fatigue and other sysmptoms.  I would definitely talk to your doctor about this as well.

-Lauren

[Fairy]

I know what you mean sister!
I get up, do what I can, and take a nap every day. This is just the way I have to live. And you are right, it is beyond being exhausted. I also have Hashimotos and Fibromyalgia, so I feel like I can't catch a break.
I am very hard on myself about getting things done because I use to have a spotless home, manicured yard, and I also worked and have a son. Now, I try to remind myself of what is important. I told my husband and son that "My life is as such, It is between doing something I want to do, or something I have to do." It has taken me a long time to get the attitude of, I do what I can, when I can. The days I feel better, I do more, and other days, I do very little.
It doesn't make any of us lazy! We are using all of our internal energy to fight this disease, so our bodies are working all of the time, just in a different way!
I hope you feel better, and DON'T feel bad about getting rest!

[cport]

Thanks fairy. I also have arthritis so getting stuff done is a nightmare but your right it's about ajusting your attitude to things and thats what i have to get used to doing.


wordnerd,it's my first lot of steroids that i've been on and that was mainly to see if they shrunk some lumps i have in my neck. Maybe i need a longer course next time and come off them slower. I'll definatly speak to rheumy on monday when i see her.

A big thank you to you all for your replies xxx

[Patze]

Hi Fairy,

I'm with you too lady, it's a trilogy I'd rather not have stumbled into either - there's no way to catch a break from it, that's for sure!  

And I like your attitude - "I do what I can, when I can" is a great motto to have too.

Lauren makes a good point about making sure that you're not coming off of the steroid too fast, it can complicate what you're already having to deal with.

Good luck at the doctor's and keep us updated, okay?

Take care -

Patze