my friends think i'm 21, but i feel 90

slamfast5 · Newbie Alert Joined: 23 Nov 2005 Posts: 3

i'm 21 and was diagnosed with systemic lupus 3 years ago. since then i've been told i have fibromyalgia as well. i'm currently in my fourth year of college taking a reduced course load.
aside from the health problems, i've really had a tough time not holding myself up to the same standards i had for myself before i got sick. i expect my energy level to be the same, but it's not. physically i feel much older than 21 and have a hard time relating that feeling to any of my friends.
i'm glad to have found this group.

Saysusie · Posted: Sat Nov 26, 2005 7:37 am Post subject:

We are glad that you found us too Laughing

My daughter went through many of the same things as you. She, too, was young and in college when she was suffering with the debilitating fatigue, achy, swollen joints, etc. She was a professional dancer and had to give that up entirely!
Many of her friends would call me (since I also had Lupus) to ask me how they could help her. I truly appreciated that and I purchased a book for all of them that helped them to understand her and her symptoms. I would say that, for your dearest friends, educate them about Lupus, its symptoms, its treatments and how it affects you. You might be surprised at how understanding and accommodating they will be!! You are not after sympathy - just understanding!!
I wish you the very best. Join us as often as you wish, we are here to give you comfort, support and information!

Peace and Blessings
Saysusie

hatlady · Tiger Joined: 16 Oct 2004 Posts: 864 Location: Illinois

Hi Slamfast - so glad you've joined us! Very Happy

SaySuzie has such good information for you! Some other things I'll suggest (as a person who works at a college) -- talk to the ADA counselor at the school. That person will help you manage your class load so that you can succeed. The fatigue is something you'll learn to live with, but you may need to adjust course load and living arrangements (you need a roomie who will let you SLEEP when you need it!)

Also, visit a site called www.butyoudontlooksick.com It has "The Spoon Theory" written by a young woman who was in a similar situation to yours - in college, with people around her who didn't understand.

It takes time, and it is not an even road - some days I can "slow down and smell the roses" other days (like yesterday...sigh...) I pretend I have energy and go - go - go until I just about drop drop drop... Confused

I find more times than not I can moderate my energy - and have finally learned to let others help me. (most of the time)

Hugs dear, and I hope you are just about at holiday break - enjoy the season and rest.

silverlioness · Posted: Sat Nov 26, 2005 11:35 pm Post subject:

I didn't know I actually had a disease when I was in college (just thought I was tired and a sickly person). I'm a perfectionist, so it was extremely rough for me to maintain everything. If I would have found out I was sick back then, I would have given up. So, don't give up. I'm glad I didn't. Some days I can't believe the things I can accomplish even when I don't feel like it.