Lupus Community

No venom08. - you are not alone! We are here! While I may not be able to help you with housework or chase after your kids, I am here to lend a ear (or eyes in this case ) We understand the pain, the fatigue and others not understanding. If you have questions or just need to rant or whine, we are here and understand.

Hang in there!!

Lisa

Hi Venom08 and Welcome,

You are definitely not alone! Your post made me remember something K2isKsquared said in the 2012 Lupus Roll Call discussion . Check it out and know you are not alone.

I know many of our members have had a hard time TRYING to explain the pain and exhaustion, it is difficult. See Community TV: Speaking of Lupus - Lupus Secret Language for tips to explain what your body is going through.

Keep checking in to vent, let us know how you are doing and tell us how your family is adjusting,
Elizabeth

Venom08,

My employer was kind enough to hold my job for me during a couple of months when I was in bed (that was before FMLA). When I came back to work it was on a limited schedule. At my workplace they consider 32 hours a week as eligible for benefits. So I went back to work on a five day a week schedule, but I got to leave a bit early each day.

Here's the kicker: my work outside the home became my sole contribution to the family. Single. Uno. The one and only thing I accomplished on a daily basis.

I literally went straight to bed each and everyday when I got home. I am not kidding you when I tell you that every weekend I hit the bed Friday afternoon and did not emerge again until Monday morning.And my wonderful husband never said anything to me other than "you need to rest." What a guy!

He took over the grocery shopping (an exhausting experience for me), laundry, and we paid a lady to clean the house. My kids were about 6 & 7 in age and they learned how to make their own breakfast and wash their own clothes.

If you are going to continue to work and provide insurance for the family, the rest of the gang is going to have to step up and do their part, too. If they don't help you, you will lose your job due to getting sicker and sicker.

Lupus doesn't strike a lone person, it affects the entire family. Hopefully with the right meds we can get you feeling better. Until then you may not be able to be a "working" mom in the sense that you continue your household duties while maintaining a career. You can work, or you can be the homemaker. Your choice, for now. Misbehave and Lupus may well make the choice for you.

I hope and pray your gang takes care of things.

K2

p.s. I'm in good shape now. I work full time, do the grocery shopping and I can even vacuum my own home! Let your family know you may get better, if they'll help you a bit.

Venom08,

You are definitely not aqlone. I was lucky in that I did not hit the proverbial wall until 2 of my 4 kids were out the door or in college and the other 2 in middle school/HS. I was a single Mom by then. Then, I only lasted another 2 years as a teacher. My kids learned real quick that my job and taking them where they had to go took precedence. Thank heavens when my middle daughter got her license! I also got them credit cards in their names...they were VERY responsible....so they could help with their own shopping and food shopping. We survived. What I didn't know until last year was that I also had Lyme disease on top of Lupus. I was misdiagnosed!

I had only lived in the area for a year when I got sick and had no family here either. My immediate family doesn't understand me and doesn't want to . Iam on my own. I have evn been called eccentric. I live in a "me, myself, and I" world. My children, all adults now still don't quite get it either because they don't see me. They are used to that lady who was like a super mom for them. I am far from that these days.

However, I am a survivor, and I will perservere! I have spent almost 11 years going to doctors and hospitals all by myself. I have faced surgeries and recovery rooms by myself. I did have the support of my youngest last year as much as she could around her job when I almost died when Lyme attacked my heart and I had to get a pacemaker. I was more concerned about my 22 yr old dealing with this all by herself.

Somehow we do make it though because we must. I always say, "I AM WOMAN, HEAR ME ROAR!"

Do you know about the Spoon Theory? I suggest you look it up. It deals with fatigue but also can be altered to deal with pain. Use it to talk to your family about how you are feeling physically. They love you and need you. They don't want to lose you to a lesser form of who you are!

((((((((((((((((((((((((((((((((((HUGS))))))))))))))))))))))))))

Marilyn

Thank you so much for the community md videos!!! I am going to show them to my family tonight so they will have a better understanding of where I am. I am so glad to have a place to vent s well as receive helpful resources!

I AM WOMAN! HEAR ME ROAR!!!!!!!! Thanks for sharing!!!!

You are definately not alone. I am a single mother with 3 kids My symptoms started when i was pregnant with my youngest and the doctor kept telling me it was the baby pressing on nerves however things got worse after i delivered. It took another 4 years before i was diagnosised and things have just gone down hill since then. The last 5 years have been my worst by far and things just seem to be getting worse every week. I understand completely where you are coming from becasue if i dont work my bills dont get paid and I also would have no health insurance which obviously this is not someting i can go without either. I pray everyday that I am going to be well enough to get out of bed and go to work. Is your husband able to help you with the housework and cooking this would definaltey eliminate some of your stress if he helps you with the household chores and childcare. You should really utilize him as often as you can to help you with the things that need to be done everyday. I dont know how old your children are but mine do alot of the housework being that I am divorced and dont have someone else to rely on it is the kids that i rely on for help and strength and I really dont know what I would do without their help because I cant do it all by myself. For the most part they are very understanding however there are times they get frustrated and angry at the whole situation. The only thing you can do is except the help you get and rest as often as possible. I would like to say hang in there it gets better but it really doesnt. The one thing that does get easier is the kids as they get older the everday demands get easier as they area able to take care of themselves more. I have included my email address if you want to email me directly it is mireedy@stpetershealthcare.org I have been dealing with this a lot longer than you so i might have some ideas or suggestions with issues you are having if you want to email questions or problems to me I will try to help. Remember take whatever help you can get and rest rest rest I know when you have kids that is much easier said than done. Good Luck I hope you are feeling better than you were 2 weeks ago when you posted this

You are not alone. I was diagnosed a little over 2 years ago and it is not always easy. I was a single mom at the time and married just this past July. My kids have all learned how to do the housework and cook meals. My 17yo delights in finding new and healthy recipes to try out and my 15yo likes to create new twists on family favorites. Even my 10yo cooks dinner one night a week (almost always mac&cheese w/hot dogs). I have a daughter in college and it makes things hard not having her close by.

My husband is very understanding and makes sure I rest. He goes with me to as many appointments as possible and has attended a Lupus suppport group in our area. This has helped him to understand a lot of what I deal with. I also carry the insurance for my family. It can be a lot to deal with, but know that there are a lot of people out there who understand.

Check to see if there is a support group or a local chapter of the Lupus Foundation in your area. They can help with so much.

Best of luck!

Just saw this and want to say, "NO YOU ARE NOT ALONE!" I'm sorry you are having such a hard time. I'm in the process of moving so I have a different kind of stress and having "brain fog" is making things worse. I don't know where to start sometime and with Lupus there is much fatigue.
If you have the support of your family than you are blessed! I do not and after being told "There's always something wrong with you" and " I don't feel sorry for you" .....Not that I want any sympathy, I'm finally moving away from my horrid sister and her selfish kids.
Make sure you rest and take good care of yourself. For those who love and care about you, you'll be no good to them (especially yourself) if you don't make yourself come first in your life!