What do you struggle with the most having lupus?

I find the most difficult is giving myself the permission to say it is ok not to be able to do something with or for my kids if I am in pain or exhausted. For example, if I can't make dinner, it is ok to have breakfast for dinner or order in a pizza even if we did it two nights ago. It is ok, if I can't take them to a playdate( although now at this age they call them "hangouts") or we just hang out on the couch . If I can only quarterback( no running involved), that is improvement. If I don't go to every sport game they play in. We have all learned to adapt, although it has not been easy and we all still have our moments. Again, I am still here and I am still fighting.

You are there for your children. It means the world to them.

Susan, I understand. This is hard for me too. My youngest kids are 4 and 5…they want me to play with them, take them to the park, but most of the time I’m so sun-sensitive I can only spend a few minutes outdoors. If I’m out too long, I end up in the hospital with chest pain, etc…

I do feel guilty about my restrictions. My husband has his own health challenges that make it difficult for him to pick up the slack. We are still trying to adjust to our new “normal”.

JoAnn
I am still adjusting to my new “normal”. Even today I am totally exhausted and had to get the kids off to school, but I have learned that if I do not rest I will be in more trouble. It is very hard to accept this “new normal”. It affects all of us not just the one with the disease. We have to try to take care of ourself so we can be there to take care of the others.

I also try to make lists of what I have to do and then prioritize…instead of doing the whole list, my new normal is what top two can be done today…I have also had the kids help out…they too will learn some valuable life lessons and become more independent…they can help by bringing clothes to the laundry machine, clear their dish etc. Just remember we are entitled to our moments…it is what we do after that counts…have a great day



JoAnn O'Linger-Luscusk said:
Susan, I understand. This is hard for me too. My youngest kids are 4 and 5....they want me to play with them, take them to the park, but most of the time I'm so sun-sensitive I can only spend a few minutes outdoors. If I'm out too long, I end up in the hospital with chest pain, etc..

I do feel guilty about my restrictions. My husband has his own health challenges that make it difficult for him to pick up the slack. We are still trying to adjust to our new "normal".

I struggle with the physical limitations and GI issues from lupus. I hate not being able to drive my daughter places she would like to go because my gut is inflamed which causes pain and other bathroom issues. :frowning: But we do try to make the most of thing, for instance we will go to places that are close to home and have restrooms conveniently available.

If it wasn’t for that I think I could deal with things a little better.

The physical limitations are hard to deal with. I feel like at 27 I should still be able to go out with my friends and do all the stuff that they can all do. There are days when I can’t even go hang out at a coffee shop with them because I just am too exhausted and/or in too much pain to leave the house. I don’t have children or anything, but I do miss going out with family and friends and doing the stuff that they do. I have explained to them that sometimes even when I really want to do something, I just can’t. My family understand and so do my close friends, but it still really frustrates me. :frowning:

I find most difficult day to day living. People don’t understand that I am not the Superwoman I once was.
Today I hurt so bad that it took me a long time just to get out of bed. My memory is very bad.
My youngest daughter lives with me and understands how bad I am and she is my Angel.
She is so helpful and understanding, but She will soon leave to go to College. The Cellcept was expensive and
did not work. Now my Dr is treating the RA. I have a great Doctor that really understands the struggle I go through.
I am fortunate that my Dr understands Lupus and RA.

Susan....

Life as we knew it is gone! It is a cold, harsh reality. You can only do the best you can do. New "normal" or not. It does you nor your disorder any good to agolize over what you can't do. Focus on what you do, do! Your children will be fine as long as you are feeding and loving them. I have days were I can hardly get from the bed to the couch, let alone do laundry. It is just a fact, period. Deligate, deligate, deligate, and do some more deligating. Along with that explain to your children what is going on. They are smarter than you might think, and all that unconditional love is a two way street. I am not saying drop out of life, but don't worry about breakfast for dinner!

You are, as we all are, a much bigger picture than what was for dinner!!!!! Trust in the fact that when they are 25 they will not remember what they had for dinner, but who they had it with.



you are soo right even though i don;t have it my daughter who is 9 does and every day is a struggle for me and helping her cope, and get her through each and every day i want her to know she isn’t the only one…what do you do with thtat??

Crystal, I am sorry, I just read your response to this discussion after i sent you a message. I wasn’t aware that it was your daughter w/ lupus. Oh, I am so sorry, that has to be the absolute worse thing to watch. Your child go through this. Words can’t express my feelings about what you & your daughter are going through. Do you have any form of Autoimmune? Does it run in your fam.? I wish your daughter a happy, carefree life, you know kids respond in the most amazing ways! They are truly inspirational w/ their strength! XOXO Suzie :0)

I do have immune problems with certain diseases but nothing like this and no one that we are aware of have lupus in our family.. i continue to ask my family to get tested and i have also tested myself as well as my son and we don't have it as of now... I wish I knew what the heck to expect for her future expecially when she talks about being a mommy i can't even look at her when she says that.. i know her life will be shorter than others but i also know i will do what ever i can to make her the happiest girl she can be... God does have a future in store for us all but right now i am angry with God and wish i could get over feeling this way.. Why her why not me i would rather take this disease away from her and live with it myself she deserves so much more this girl. She is strong and bold outgoing and an artist and I know she gets that from me but she is different and i can't explain it. Sometimes others don't understand..truly understand this disease and know really what we are going through. I am not asking for pity or for others to feel sorry for us but i wish we had more of support group than what we have right now expecially when me and my daughters father are going through a divorce and even though she doesn't look sick she is still very sick and no one gets that... sorry just a little frustrated right now.. needed to vent a little

crystal

Hi Crystal, I so understand what you are saying...You need to get it all out, I can only imagine the emotions that you are feeling. Yur daughter is one lucky girl to have such a strong mom. You do whatever you can to help her days be bettrer and to let her know how much she is loved! Just continue to do that and you will both get through the bumpy roads. They feel as if , they are an impassable road, but with faith, strength and a whole lot of love and understanding, they are passable and you will find a place where you all will be OK. Don't count out all of the dreams your little girl has, children are so resilient, she will surprise and amaze you, Trust ME!!!!

Stay strong my friend and we are hear for you whenever you need. Thinking of you, & praying for you & ur little girl! :0) {{HUGS}} Suzie

Crystal Peterson said:

I do have immune problems with certain diseases but nothing like this and no one that we are aware of have lupus in our family.. i continue to ask my family to get tested and i have also tested myself as well as my son and we don't have it as of now... I wish I knew what the heck to expect for her future expecially when she talks about being a mommy i can't even look at her when she says that.. i know her life will be shorter than others but i also know i will do what ever i can to make her the happiest girl she can be... God does have a future in store for us all but right now i am angry with God and wish i could get over feeling this way.. Why her why not me i would rather take this disease away from her and live with it myself she deserves so much more this girl. She is strong and bold outgoing and an artist and I know she gets that from me but she is different and i can't explain it. Sometimes others don't understand..truly understand this disease and know really what we are going through. I am not asking for pity or for others to feel sorry for us but i wish we had more of support group than what we have right now expecially when me and my daughters father are going through a divorce and even though she doesn't look sick she is still very sick and no one gets that... sorry just a little frustrated right now.. needed to vent a little

crystal

I have found that I am very moody lately? I was diagnosed about 2 years ago. It seems noone understands what I go through. My fiance and my friends and kids just can’t get it. I am struggling cause I hurt so bad trying to manage a household 2 kids, a job, and a relationship. Feels like I am always making someone mad at me. I want to sleep alot and have no energy for anything. My fiance says I am bi polar and I over obsess I don’t know what to do anymore. It’s like I have no control even when I try. I don’t wnata push people away but it’s hard not to.

Erikah...

Lupus is hard! No way around it. I am so sorry to hear you are having a rough time with loved one's and friends. Trying to explain sometimes seems to make it worst. People saying you are bi-polar is an easy out, but most of us do deal with depression and there some great new treatments for it.

I wish you luck and if there is every anything, email. I get the "moody" thing...as do many here. But we are all here because we also suffer and others do not always understand. Education and open mind are wonderful things.

Hope your day gets better...

Be Blessed...

Melissa

Awww, Erikah my dear don’t ever think you are alone, having something so miserable and debilitating is such a life altering problem, of course you feel as if you are wiped out & cannot deal with too much more, we ALL do at some point, believe me…But u are stronger than that, you know it, your family needs you, and you do what you are able to do and ask for help when u need it. How old are ur kids?? I getchya with it being so frustrating having very little energy, you try to rest as much as u can, try to have it seem as u r, watch a movie and chillax with the kids, have some popcorn, u can learn to relax w/o making it seem u are. U feel moody cause u feel like CRAP, lol, sorry but true, what are u supposed to be overjoyed while in pain & fatigued, perfectly normal! Talk to ur Doctor though, there should be something that can be done for you to feel better…Hang in there & we are always here for you, u r going to be OK! Keep Smiling, ALWAYS keep smiling, as hard as it may be!!! {{HUGS}} Suzie :0)

erikah1976 said:

I have found that I am very moody lately? I was diagnosed about 2 years ago. It seems noone understands what I go through. My fiance and my friends and kids just can't get it. I am struggling cause I hurt so bad trying to manage a household 2 kids, a job, and a relationship. Feels like I am always making someone mad at me. I want to sleep alot and have no energy for anything. My fiance says I am bi polar and I over obsess I don't know what to do anymore. It's like I have no control even when I try. I don't wnata push people away but it's hard not to.

Sounds like you’re doing Great and are a wonderful mother. Stay positive. You’re doing a great job. Getting a good balance is very important…where you do think of yourself as well as the family needs.

Hi Susan,

Yes, it is okay to order pizza, even several days in a row if you have to. I think as women we are natural caregivers and when we can't care for our family, we feel GUILT! It runs our lives! Fortunately, my children are grown so it is just me. But I can say this has turned my life upside down! The worst is the fatigue and cognitive issues. I forget things like paying my bills!!! I ache so bad but I can deal with that but the fatigue is a killer. I also have a lot of nausea and vomiting. I have always been very active and this has been very difficult to deal with. I am always doing some sort of project and sitting down is something I don't do well. However, I am slowly learning to sit down but it is a huge struggle.

It is very dificult, it is recognising that you are not the person you were and also embacing the person you have become. I am completely different now than I was 7 years ago pre-Lupus. I have the cards I was dealt and to a certain extent I have just got on with it, but I have learnt to appreciate every day and take time to marvel and indulge my family and friends. Time is the most previus thing you can give to a fellow human being, living with Lupus re-inforces this.

Davina

xx

Mel1964 said:

Hi Susan,

Yes, it is okay to order pizza, even several days in a row if you have to. I think as women we are natural caregivers and when we can't care for our family, we feel GUILT! It runs our lives! Fortunately, my children are grown so it is just me. But I can say this has turned my life upside down! The worst is the fatigue and cognitive issues. I forget things like paying my bills!!! I ache so bad but I can deal with that but the fatigue is a killer. I also have a lot of nausea and vomiting. I have always been very active and this has been very difficult to deal with. I am always doing some sort of project and sitting down is something I don't do well. However, I am slowly learning to sit down but it is a huge struggle.