new here, feeling overwhelmed by life with lupus

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New Member

Date Joined Apr 2011
Total Posts : 1
   Posted 4/13/2011 11:20 PM (GMT -6)   
Hello everyone! Im very happy to have found a place where I can talk to people who really get what im saying. Im a 30 year old single mother of one 6 year old. I also have systemic lupus. Diagnosed at the age of 12 i have struggled with it fir a ling time. I have recently been told i also have fibro as a "symptom" of mu lupus and RA. I have been divorced for three years and i am struggling so much with how to get everything done that is expected of me. My daughter is in school and needs me to help her keep track of books and homework and volunteer in her class room. I work four days a week as a hair dresser which is getting tougher and tougher. Then there is our home. I can not seem to keep it clean and organized. Im a woman with energy demands a healthy person would struggle to keep up with and i have a fraction of the energy my friends do. I constantly feel like im letting someone down forgetting about an appointment or having to apologize for not being able to do something i had promised to. I just dint see how i will ever be able to keep up with life if something doesn't change. I feel like im always letting someone down and i try not to over commit myself. I was just wondering if any of you have any tips on how to manage a full life with this disease and all that goes with it. Thanks and blessings to all!

New Member

Date Joined Apr 2011
Total Posts : 2
   Posted 4/15/2011 8:10 AM (GMT -6)   
Hello iviedmom!
I am new at this, I am a new diagnosed woman, going through grad school. I know the feeling of not having the energy you want to finish all the things you want or (need) to do! I have been dealing with it for years without knowing what was wrong with me.
Have you read the spoon theory? I strongly recommend it! I am learning to choose how am I going to use my spoons every day!!! I keep a list with all the things I have to do and I prioritize them, a put numbers on it: most important have 1 and so on.
You will have to stop being so hard on yourself and tell people the truth, that sometimes with your lupus you don't have energy enough to do what you promised (and don't over commit like you said). I have a problem with it: I can't say no to people!!! but I am trying to now because I can't deal with everything! that's one of the hardest thing about lupus, learn to slow down!
but don't be afraid of asking for help, to delegate.
With the house work you can ask your daughter for little help, I am sure she will be happy to help mommy feel better!
I really hope you find more ways to feel better ! Blessings !

New Member

Date Joined Apr 2011
Total Posts : 3
   Posted 4/15/2011 8:53 AM (GMT -6)   
Hi iviedmom,

Your not alone! I'm 35 with 2 kids and just diagnosed. The lack of energy sucks! Luckily my daughter is 13 and my son is 9 and they help me out alot. My kids now do more cleaning around the house than I do now. As long as the dishes are done and they do their own laundry, the rest of the house I could care less about till I feel up to actually cleaning it. So it's dusty, who cares! Also if you want your child to start doing her own laundry (my son has been doing his own since age 5) Use the Purex sheets. It's less messy for kids to do their laundry with.

I'm a list person and use a ton of big post-it notes...that helps keep everything organized when my head seems to be in a fog thanks to fatigue.

Hope we all feel better soon!


panther fern
Regular Member

Date Joined Feb 2011
Total Posts : 163
   Posted 4/16/2011 3:58 AM (GMT -6)   
HI, I have had SLE and tons of other issues. but i want to address seraphina and iviedmom. I was dx when my kids were young 5,6,7 i am married. during their growing up years i was a dental hygienist and lost not 1 but 3 jobs due to my health. Talk about the anvil falling on your head. please remember you are not wonder woman and you can not do it all. I am super type A. super high standards for myself and the more i talk to people with auto immune it seems very common. I feel it is a wake up call saying... guess what you really are not in control.

Asking for help is beyond hard, it is humiliating, and necessary. If either of you have a sister, cousin, friend parent any one. take them out for coffee and let them know your situation. Do you ever have times when your kids are at their dads. if so... ask for help for someone to come in even for an hour and do anything... you both need to get in a 30 minute nap somehow. or rest. I will say when the kids are older they do take on the resp. of helping. but it is nice to have help picking up but it really helps to have someone come in and actually mop a floor, clean a bathroom, things that are hard for you.

It is ok to ask for help, because when you are feeling well you will find a way to say thank you.

I still have trouble asking for help from even my family. i was a good feel good faker when they were young and now i am beyond that point and it is so hard to explain why i am unable to be there in the capacity i once was.

I wish both of you healthy days and happiness. Make sure you are getting good rest at night. if not tell your doctor.
Welcome... and joy to you and yours...

Regular Member

Date Joined Aug 2010
Total Posts : 50
   Posted 4/17/2011 5:36 PM (GMT -6)   
I believe the hardest thing for most of us with Lupus and kids is to admit I just can't do it...

Most people don't understand that just because I look healthy in no way means I am healthy. We have limitations most people don't understand. One day we may feel great and go grocery shopping and then BAM... We're done.

The Spoon Theory is wonderful. It's all a mater of prioritising. I know for me if there is something I need or want to do on my day off, I do it first thing in the morning. Usually then I'm whipped..

I believe that our children will become better people by knowing what it's like to have to help out at home. Also learning there are limitations in life and not to take things for granted.

A clean house does not reflect the person you are, nor does volunteering at school. You are obviously a loving and caring mother and your daughter will growup knowing that... I stoped volunteering this year for different things as well. It was very hard at first but now my kids understand. To me, that is all that matters. If other parents judge, so be it. They don't live in my shoes..

I hope you get some energy back soon and work becomes more tolerable for you. Enjoy your little girl.. They grow up on us soo darn quick!
SLE Lupus, Epilepsy, Spinal Stenosis
Plaquenil, Keppra, Medrol, Vicoden, VitaminD/Calcium, Ambiem

Make the best of every day.. You never know what tomorrow will bring you!
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