So let me give you some background first, before I give you the story. I have SLE, RA, type 1 (juvenile) diabetes, and hypothyroidism. I’m only 31 but sometimes I feel like I’m 60. We have one child, a daughter, who is almost nine. We’ve always wanted more kids but they say I shouldn’t have any more.
I’m on ssd but my husband and I have been talking about starting a daycare. I was saying before and after school care, that way it wouldn’t be too much for me. He’s looking at the money and wants me to do the all day thing while he works. Now, he works 12-14 hour days, and he’s built like a tank. He was a d-line nose guard for any of you football fans. For those of you who aren’t fans of football, he’s over six foot tall and over 300 pounds. (I’m 5’0" and 200 pounds less than him) Anyway, I’m scared that I won’t be able to handle that much after we put so much money, effort and time into it. We got into an argument and I was crying. He told me I need to stop feeling sorry for myself. Then he told me I don’t have the drive, the passion, to succeed. I couldn’t believe he said that! Like I CHOOSE to be this way and feel sick. That really hurt me. He compares me to his mom, who is huge, like him, and she’s like SUPERWOMAN and I can’t be her. So…
I don’t know how to get him to understand. I need my husband to be more caring and understanding. Otherwise, he’s the best man I have ever met in my life. I don’t want this to end my marriage. I wonder if he even respects me after what he said though…
Sorry for babbling guys. All comments are appreciated.
That’s not babbling at all…No one can understand better than we all do how much it hurts when the most important people in our lives just don’t get it. As for the child care, I think you are absolutely right to be cautious. I am a living example of what happens when you don’t listen to your body and take care of yourself. I ended up unable to even walk unaided for almost a year…and I truly believe it would have never gotten that severe with proper care and rest. I hope the situation gets better…Stress just makes things harder…there is always someone here who understands
I’m so sorry your husband doesn’t seem to understand. My spouse and I were married ten years ago before my SLE and other ailments really kicked in. I was a highly driven, successful and active woman. I ran ten miles a day, worked my butt off, and entertained all the time. Forward five years, my health took a turn for the worse. I began taking many medications to manage my symptoms, I had to quit my job, and every day now I’m some degree of tired and in pain. Plus, we have a seven year old that I try to keep up with as my husband’s job keeps him away from home often. He’s the wonderful man I married, but, it’s really difficult for him to see me so different now from the superwoman I used to be. He doesn’t understand fully that when I say I can’t make dinner, for instance, he feels I don’t WANT TO as opposed to not being physically up to it. I think our loved ones sometimes have a tough time grasping how difficult it is for us. One thing my therapist suggested was for me to have my closest friends and husband come to this site for understanding. This site welcomes people who have a loved one with SLE and more.
As far as the day care, you have to be honest with yourself and ask yourself if this is something you can do on a consistent basis. I know I couldn’t. I wish you the best of luck in whatever you decide. Keep searching for answers that work for YOU. Hopefully your husband will come around. Perhaps even share your post and responses you get with him. I don’t know. All I can say is to be aware of how you’re feeling on a daily basis and do what’s in your best interest to be as well as you can be. Keep sharing here for support, we’re a caring and supportive community.
I wish I had more to offer to comfort you. Just know that putting yourself first isn’t feeling sorry for yourself or being selfish, it’s what’s necessary to keep you functioning and hopefully enjoying the best quality of life you can have. Please keep us posted. Kim
Its interesting that you post this discussion, just last night I watched a 1 yr old little boy for a few hours. My daughter and her friends wanted to go skating, and I said ok I'll watch her friend's little boy. He's been over before, so I'm not a stranger to him, but it was close to his bedtime and its normal for them to be cranky and want their mommy. He was good, but he had trouble settling down, but he finally fell asleep for me. There's a different stress involved in watching someone else's child.
Maybe you don't have your husband's drive, and passion to succeed. You have your own definition. You have to look after your own health first, and avoid over doing it and making it worse for yourself later.
What about trying one or two children first for after school care? It takes a lot of energy and I know because I did it for years for my grandson. I can't tell you what a difference it is for me no longer doing it. I am much older then you are too.
Have you considered you and your husband conferring with one of you doctors about what is really happening to you so maybe your hubby can understand it better? Maybe he wouldn't even go to someone with you. I'm just throwing out some thoughts. Best of luck.
Have you researched how many kids you are allowed to watch. Here in Indiana, there's an adult to child ratio. You could hire a tween to come and help you during holiday breaks if you take on a few more. Was this originally your idea or your husband's idea, just curios. I wouldn't invest a lot of money until you know you can handle it. Remind your husband you're on SSD for a reason. And personally, a woman doesn't do child care just for the money, you have to enjoy the kids. Last night Kevin kept squirming and wanting to get down, and I got a book and started reading to him and showing him the pictures. I'm not sure how much he gets read to, but my kids loved it. You do it cause you enjoy the kids. There's easier ways to make money lol.
kaycie francis said:
Thank you all so much for your support. KIM, I think your idea about sharing the posts with my husband is a great idea. I don't think he'll care, really, because he thinks everything is mind over matter, but it's at least worth a try. And he's the same way thinking that I DON'T WANT TO do things instead of not being physically able. Or maybe it will hurt too much so yeah, I don't want to. Men get be babies when they don't feel good but we're supposed to still function normally no matter how bad we feel. TRISHA, you're right about it being a different kind of stress when it's someone else's child. You can discipline them however you are fit when they're your own child. And then I'm worried about having so many, and what I'll do with them while I'm making meals. I think I should hire someone else but my husband doesn't want to. I think six kids is too much for me but my husband is thinking of the money.
I have the best guy in the world, but sometimes I think it was just so easier when I was single. I could make all the decisions. I didn't have to listen to him or care what he had to say... LOL there I go babbling again.
I hate that "if you put your mind to it, you can do it" crap. Too many friends/fam are giving me that line too. Like this is fun, and easy. Ugh. But they are lucky enough to not really know.
As far as the daycare...Good luck if you do it! My whole career is young children, and due to this lupus stuff, I can't work, let alone with young children. A baby or toddler can't (and shouldn't) understand how much pain you're in when they're hungry and crying...pooped and crying...hurt and crying...etc. It's dangerous not only for you, but for them. Also, if you are going about opening a center the legal way, there are adult to child ratios for sure. Every state has their own rules about the exact ratio, and in home care is diff than in center care ratios. I am far from an expert, but I do have over 3/4 of my BS in Early Childhood Education and Development, and about 10 or so years of experience working is centers, nannying, teaching mommy and me classes, teaching in public school, managing, licensing, etc. So if you or your hubby have questions about that stuff, please feel free to ask me. Again... if you do open one, good luck. It's HARD work, with little compensation. You honestly probably make more on Ssd... So if it's just a move for money, I would suggest not doing it, or just the before and after care of older kids. You'll kill your body more for little more than a few hundred a week, and possibly put the little ones in danger if your symptoms get too bad one day.
I have a wonderful, supportive man in my life. A little over a week ago, though, he shocked me by telling me that I was giving up and letting this thing beat me. We've been together 12 years, and i was diagnosed just 3 months ago. Wow...has it really been only 3 months??? It seems like so much longer! Anyway, my 18 year old son seems to be more understanding! It's not that my man is uncaring, it's that he has a hard time seeing the strong, independent woman he knew not being able (he sees it as not wanting) to get out of bed in the morning. I know he says these things out of love, but he doesn't "get" that this disease sucks the life out of me, sometimes!
I'm sorry you're having such a difficult time, and I wish other people in our lives understood, better, how harsh this disease can be. You need to be your own advocate. You can't allow yourself to be pressured into doing more than you are physically capable of doing. Letting that happen would do you more harm, physically, than good.
I am so sorry you are dealing with this. My husband seemed to be supportive but I knew he didn’t really understand. Fast forward many years and someone mentioned to him how bad lupus can be and he started researching on the internet. He told me he was so sorry for not being more understanding. He saw me pushing through and thought I was ok. He asked if I felt like what he was reading on the internet and I told him I did. It seemed like hearing and reading about it from someone else made the difference. This past summer I had a horrible flare affecting several organs and ended up in hospital ten days. I am still having issues and still sleeping in recliner. He is right there with me on his air mattress and does as much house work as he can. He knows it takes all my energy just to go to work every day. But the change started by him hearing from someone other than myself. Perhaps you could get a friend to talk to him or get him to read information on lupus? I will say a prayer for you!
Some men don't do well with illness, especially in their wives, Men usually like to problem solve & Lupus is a disease that is not solved just managed. You may need to sit your husband down & tell him how you feel about expecting you to do day care all day long. Explain you don't have the energy to cope with taking care of kids all day long. As far as comparing you to his mom you need to make it clear how you feel about being disrespected. If he loves & respects you he'll understand & not continue to make you feel like a failure. His behavior is unacceptable. He may feel upset about all the added responsibilties, frustrations but he doesn't need to take it out on you. He may need some education on Lupus. The Lupus Book by Dr Daniel Wallace is a great guide to Lupus. Good Luck to you...
It has taken me years to get my DH to understand how sick I am.....we are still having issues with it. DO NOT take on anything else right now...you are not up to it...just say NO! Does your DH understand all of your medical issues? Can he go to doctor appointments with you so the doctors can fully explain what you are going through???? You need his help...not the other way around!
Many people don't get how you can feel so tired and your body ache so when they can't see any obvious signs of the illness. I you go to a web site that explains how SLE and RA effect in just what is visible but your entire body. He my see swollen joints, or a rash but there is so much more going on that he can't see. I hope this would change his attitude towards your condition.
Many of my own family do not realize what I am fighting. Especially my sons, they are all grown men, It seems to me men do not understand feelings and things they can not see. I know these comments hurt very deeply and that in itself can effect your condition more by intresting stress. I feel sorry that you lack his support. I pray he comes to better understand your situation.
Wow!, sorry that he made this statement to you! Don’t let that bother you!? Many people can’t deal with the fact that we who lives with Lupus has a change from how we use to do things -trust me , my daughter was that person for me! It took awhile (the first year ), very hard and could not adjust to the ideal I was not that person anymore , who always did things ! It took a toll on her , until my son who from day one moved back from Calafornia to help me with this Lupus stuff. He talked with her almost everyday about seeing how things had to be done for me slowly she eased up! But now she has no problem with my flare days ! What am saying is some can’t, won’t allow themselves to face Reality. Dealing with this Live or die situation makes them scared ,that they don’t want to handle(the blind side of reality ). Losing you . We all hope for the best, always, but Reality do come to them ! So try talking about your doctor visits and invite him to some of your appointments and just ask questions to the doctor while your husband is in there room with you , make him apart of your , Living with Lupus, it worked for me…Beverly L.
P.S. the more he knows the better it will get!..xoxo
NO ITS OKAY KAYCIE I HAVE A SIMILAR PROBLEM WITH MY DAD I AM 26 5'4 AND 180 AND I LIVE AT HOME WITH MY MOM AND HE IS ALWAYS ON MY CASE THAT I HAVE TO HELP MY MOM IN HOUSE CHORES AND HE IS RIGHT BUT SOMETIMES I JUST CAN'T EVEN IF I WANT TO . LET ME EXPLAIN MYSELF I WAKE UP WITH IDEAS I WILL DO THIS , THAT ETC,. BUT I HAVE COME TO REALIZE IS THAT WITH LUPUS SINCE ITS A AUTOIMMUNE DISEASE ARE WEAKNESS IS ALL INTERNAL. EXAMPLE YOU WAKE UP OR TALK TO FAMILY AND YOU MAKE BEAUTIFUL PLANS FOR THE FUTURE THEN WHEN THE DAY COMES YOUR BODY ISN'T READY . MY ADVICE TALK TO HIM TAKE HIM TO YOUR DOCTORR APPOINTMENTS AND START SMALL DON'T OVER BURDEN YOURSELF TAKE IT SLOW I MEAN JUST BECUASE WE HAVE LUPUS DOESN'T MEAN WE ARE USELESS. I HOPE YOUR HUSBAND UNDERSTANDS.GOOD LUCK
I'm so sorry he's being unreasonable. I deal with this also. It took me dragging my husband into counseling for him to understand that I would never be the energetic go for it woman that I was during the first decade of our marriage. We have three boys (against doc advice) and all of my energy goes to them. Our house is a mess alot of the time because I have to rest pretty much the whole time they're in school. My husband wants me to go back to work for money reasons and I had to explain, yet again, what the consequences would be if I did. Mainly that he would have to pick up much more of the slack. I get the feeling that he doesn't get that I want to be normal. On Mother's Day a few years ago I said I didn't want to do anything that I just wanted to relax in bed and do nothing, then dinner time rolls around and he asks me to deal with dinner. I said but it's Mother's Day and he said everyday is Mother's Day to you. I did the dinner prep then went and crawled into bed and cried myself to sleep. I've never had anyone hurt me like that. So I totally understand your pov. Maybe you could start with just after school care and see how you feel. Is there a reason he wants you to work? If you're on ssd you can only earn up to $800 a month before they start docking your ssd check so make sure that you don't earn more than that. Childcare is very demanding so you might want to consider other options. Just my opinion of course. I hope he comes to his senses soon. It took me considering separation and divorce before mine finally realized that his attitude was driving us apart. I hope you don't have to get to that point. Best of luck to you. Annemarie
What a thing to be dealing with. Your husband is being inconsiderate. Sorry to be so blunt. Let him read some of these responses. He also needs to be educated vis a vis the Lupus Foundation of America.
Ask him if he's ever had a bad case of the flu that knocked him flat on his back. Tell him you have to live with that every day and still have to try to function at some level.
I can put myself in your place. However my misunderstandings came from friends who all "knew someone who was cured of lupus" by diet, natural drugs, some natural miracle cure, meditation and the like. Several times I asked to meet that "someone" and it never happened. One of the lamest excuses I got was . . . She fell in love and ran off with the guy. Ech!
Besides, you might lose your SSDI or any disability that you're receiving if you try to earn money.
This post broke my heart when I read this. I wish we could all stand in line and just shake your husband a little bit and help him to realize how insensitive he is being.
My husband is a great support, but it took a little bit of time to get him there. I am all about research, if I have a new issue, I research it. I have gotten into the habit of printing out what information I find on any new condition I get, and sit down and talk to my husband and my kids about it (they are 16 and 13 so they are old enough to get the absolute truth). When I am having a hard day, I will tell them first thing in the morning...I have this issue, so lets not make any plans tonight, lets reschedule. At first it bothered them but now we have it down and no one gripes, except for me of course because I feel like poop :)
My doc has done many write ups on Lupus, and I ask my husband to read them, or we read them together at night. I explain to him what each symptom does to me, and how it makes me feel. He gets annoyed sometimes, but it isn't because he doesn't care, it's because he doesn't like the fact that I am in so much pain all the time. I honestly think your husband has that issue, he wants to see you better and that's why he is trying to push you and maybe doesn't realize how much he is hurting you emotionally.
