It’s not about not having things to do with the kids it’s about not having the energy to do it!!! Sorry it just is upsets me. I guess i get so defensive because people don’t understand why someone doesn’t feel like doing the simplest things! But I feel your pain!! Allot of the time All I can do is stay in bed. And It also hurts me that my kids have had to see me like this I’m thankful they were older but still teenagers take allot of energy to keep up with I’m down to 1 at home but now with my Grandson I don’t have the energy I’d like to have for him. I’m trying to keep my job and to do so takes everything I can give to resting my body when I’m off and things and others suffer because I can’t keep up!!! We’re all trying to survive but it sucks when you don’t feel like your doing that very well. I used to be very active and my house was clean I was on top of things. But just getting by and having others look at me like I’m lazy. This sucks but this is the had we’ve been dealt I just have to pray to God for miracle !!!
Just your love is what they need. U r a good m
U r a good mom wanting to be better for them. Pace yourself, sit its ok! I drink jasuru it had helped me tremendously, it’s pricey. Have your doc check vitamin levels! Drink smoothies with c n get b’s in too! These help with digesting food for energy. Also food enzymes! Search these when possible. Best of luck, but remember your love is everything they need!
Taesra,
AnnA has a point. There is no "magic" cure all for the tiredness, however state of mind can be a powerful tool.
Tired goes with the territory and unfortunately we have to find ways to work around what our bodies allow us to still accomplish.
I remember only bits and pieces of the long Thanksgiving weekend as we drove to Salt Lake to visit my husband's family. The trip, even though I didn't drive was enough for me to sleep virtually the entire weekend. I even stayed asleep in the car when we went to visit with his dad. Imagine how embarrasing that was.
The point is is that it gave me the chance to talk to that side of the family and tell them what I could expect from this disease, most notably the fatigue and headaches.
Maybe you can sit down and speak with your kids and just let them know that although your disease doesn't allow you to do some of the things that you once did, you still want to spend time with them and ask them to think of activities that may be fun but not as physically demanding as before. A blanket "fort" used to be one of my favorite things to do when I was young.
My kids loved going to the park. I would take a book and read and they would take advantage of all of the playground equipment.
You have a lot of people here who will help answer your questions and putting our collective brains together we can come up with some fun ideas.
Hugs,
DeAnne
Taesra,
here are somethings i used to do when my kids were that age, if your tired a game of i spy can last for a good while and you can rest, another thing i would do is throw a sheet over the dining room table now it's a tent, or a cave, or what ever you like a sippy cup and a box of animal crackers can go on for a hour, storybook time is a time you can play with them and still be resting, a treasure hunt is always fun, you sit in one place and say get me a shoe or towel or a red block or what ever you like, and then have them put all those things one at a time. my kids are grown and they still remember when i would, mommy is tired you need to take a rest,and then put on a movie or maybe sesame st . your children are only young once, make them your first priority while they are young. i can promise you nobody will take away your house work away. first take care of mom and kids, everything else can wait. you may want to use the 10 minute rule if your having a low energy day, work for 10 minutes, rest for 15, you will be surprised how much you can done that way. hope these ideas help.
iris
Taesra said:
thanks everyone I appreciate the advice and all of the stories. I'm still getting used to the diagnosis and limitations.
Hi Taesra, just relax dont get worked up -it's okay !!!smile yes it is hard to do alot and play with the kids -i know .Get yourself some iron pills to help you , that might help !!!! It help me when i get to that point ....Beverly L.
you are not alone, i to have been going through this. most of my days are laying on the couch. i have learned how to pace myself and my husband and children has had to learn they have to help and understand when mom is in bed all day. i was told to force myself up and walk go the gym not to mention my wifely duties. sometimes it hurts so bad mentally because i feel so alone but when i hear from you i know that im not. i would say to you do what you can do, but listen to your body, im sure your your family will understand. praying for your, mine and every other woman battling this stumbling block
I just had the same talk with my rheumy. I work grave yard shift and have been feeling like I give every ounce of my energy too my work and by the time I pick my 3 & 6 yr old up at 6am im gassed out! The fatigue seemed too take over my life! If im not at work im in the bed…i feel so bad for my kids!! My days off are horrible! I feel like there childhood memories of there mom is me in bed asleep:( I have a 19 & 15 yr old kids that try n help the best they can but it’s still hard! My dr said that there is still alot of lupus activity with blood tests every month so were going too start benlysta and hope for some results with that…he also gave me nuvigil too try n get me through the fatigue, this is my 3rd day and I think im actually feeling a lil better!!! Today I actually started cleaning my room…and believe me, I’ve been putting that off for the longest!! Lol! The lil things in life we learn too appreciate!! Sorry, I feel like im rambling on an on!!
Good luck!! Hope u feel better soon!!
I go to the DR tomorrow maybe I will ask about some things for energy. I CRAVE energy seriously I want to be human. I begged my husband to read about lupus and he says I'm just making excuses to not do things....he doesn't know what it feels like.
Tie about a 50 pound weight to his back every day and see how he feels. Then tell him "now you understand what I am feeling". Probably wont help but will make you feel better.
LOL he's tired because he CHOOSES to go to bed at 11 knowing he has to get up for work at 430. yes he works hard but he doesn't cut me ANY slack I really am doing my best.
And here I thought I had invented the phrase!