I'm soso tired of being tired. I do the grocery shopping and I'm shot for the day. I vacuum and I'm toast. I want energy I want to play with my kids. I want to do more than one thing in a day! do you have any advice on how I can get some energy. caffeine does nothing sleep does nothing I just need energy! My kids are 3 1/2 and almost 2 they deserve mommy to play with them! HELP PLEASE
Hi Taesra,
Not being blessed with children i'm on on the same level as a good many members who have them young like yourself...where your children need your attention.
It is a well known fact that what ever we do must be paced with breaks in between...my energy level is really low besides strength but always keep thinking positive where the disease is concerned.
These links may help you besides members advice otherwise...the first is about foods and the other two exercise.
http://lupus.webmd.com/guide/nutrition-lupus
http://www.healthylifetoolkit.com/lupus-and-exercise.html
http://lupus.webmd.com/community-tv-lupus-11/lupus-exercise
Hugs Terri :) xxx
Hi Taesra,
Like virtually every person with lupus, lack of energy just sort of comes with the territory. Pacing yourself is great, unfortunately kids don't always understand that Mommy needs to rest. I take a multi-vitamin as well as an extra B-12 (available at any store) and I find that that helps to a degree. I would imagine that at your kids ages, they still nap...that would be a perfect time for you to do the same. I don't always sleep, but find if I can't actually sleep that just closing my eyes and thinking of nothing (usually) can do wonders.
Many people with lupus also have anemia (lack of iron)...this can make you SOOO tired, so next Dr. visit you may want to ask about testing for that. In the meantime dark green veges and beans are what my doctor recommended to me to help bring my iron count up.
These are just some suggestions, but they are easy and may give you a little pick me up.
Best to you and the kids,
DeAnne
thanks I'm just so frustrated and .depressed about itit I don't feel like a good mom right now.
Taesra,
I do hear you. It must be very hard not to be able to do the things you want with your children.
Do you have a younger friend or relative who could come over and play with the children? Sometimes their needs have to be met through others...and that is OK on a temporary basis. It will give you joy seeing them having a good time. I'm hoping you will have good days ahead.
As Terri mentioned..taking breaks in between playing is important that you don't get too tired. And take your naps when they do, suggested by DeAnne.
Children are amazingly resilient and your illness is beyond your control. Your sweetness and the love you show them is more important than playing with them. So try not to be too hard on yourself. You do your best and they will be just fine. It is possible, even with your limitations, to be a loving mom.
Being young and having lupus is tough. But nutrition is important to make sure you are not low on certain vitamins than can affect your energy level. Has your doctor done a panel to check for iron, Vit. D & B vitamins? The stress of your illness can also deplete your body.
Try some of these things and let us know how you are doing. As Terri mentioned, try to stay positive. Many have raised children while having lupus. I hope some of them will share some of their strategies.
Love and hugs to you,
Faye
Every day it's the same thing for me. I get up just after 5am and by 9 I'm already done for the day. My youngest will be 2 Feb 1st. Thankfully my mother is here a lot for me. My 2 oldest have been home on Christmas break so that has helped out a lot. I get so tired that I actually feel like I'm going to just pass out. When I'm here alone with the baby I get so stressed out because I'm afraid I'm going to fall asleep with it being just us two.
I'm still trying to figure out all of this for myself. Wish there was something I could say.
Everyone else that has commented seems to know a lot more. Just hang in there!
There is no quick fix to this problem but one thing that I do is drink 2 to 3 green smoothies a day. In the smoothies is a frozen fruit ( I use strawberries or a tropical fruit mix), Greek yogurt, fresh spinach leaves, a banana, sometimes I put frozen sweet peas in it but not usually, I add some soy milk and some aloe vera juice sometimes if I have it on hand. I add soy protein and put in my smoothie maker but you can use a blender if need be. Over time this helps but some days there is nothing that helps with my energy level. Like this last three weeks I have had pneumonia and nothing has helped but I have been faithful with the smoothies. I also take some time to practice yoga and relaxation techniques and I have a cd of nature sounds that I listen to at night to help me relax.
I agree with you here. Staying positive is one of the most important things to do. It is so easy to fall into the oh poor me stage and so hard to get out of it. It is easy to forget to take care of ourselves when we have little ones to take care of and a spouse that needs us. Take care of yourself and the energy will come back, it just takes time and that is the hardest part.
Faye said:
Taesra,
I do hear you. It must be very hard not to be able to do the things you want with your children.
Do you have a younger friend or relative who could come over and play with the children? Sometimes their needs have to be met through others...and that is OK on a temporary basis. It will give you joy seeing them having a good time. I'm hoping you will have good days ahead.
As Terri mentioned..taking breaks in between playing is important that you don't get too tired. And take your naps when they do, suggested by DeAnne.
Children are amazingly resilient and your illness is beyond your control. Your sweetness and the love you show them is more important than playing with them. So try not to be too hard on yourself. You do your best and they will be just fine. It is possible, even with your limitations, to be a loving mom.
Being young and having lupus is tough. But nutrition is important to make sure you are not low on certain vitamins than can affect your energy level. Has your doctor done a panel to check for iron, Vit. D & B vitamins? The stress of your illness can also deplete your body.
Try some of these things and let us know how you are doing. As Terri mentioned, try to stay positive. Many have raised children while having lupus. I hope some of them will share some of their strategies.
Love and hugs to you,
Faye
I wish i had an answer BC i struggle with the same thing. I’m just so tired. I don’t know what to do. I take my son to kindergarten and come home totally exhausted. Even when I wake up feeling “good” I am totally wiped out within an hour. And if its sunny forget it, I’m wiped out in minutes. I will send prayers your way. I struggle more with the fatigue than the pain. It is totally consuming.
I too am limited to doing 1 activity a day and then my day shot . like you said I go to the grocery store I’m shot I walk out to put the trash to the road I’m shot.just laying the babies down for their nap wipes me out and i spend the whole nap time recooping .I drink monsters every once in awhile although they are not good for the disease or my body. I have 2 and a half year old twins that are very active and it kills me everyday that I can’t get down and play with them. I do it anyways and then the only person that pays a price for that is my wife because she has to pick up all the slack. my wife and I actually have 6 kids we have 13 11 7 4 and then 2 and a half year old twins. I wish I had an answer for the energy.
As a fellow mom I completely understand your frustration!! Unfortunately there is no magic pill that I am aware of that helps :(. In our situation a vitamin d deficiency is very common which can cause your energy level to be even lower. I wish I had some words of wisdom for you. I know we want our children to be active and healthy but maybe gear down some of your play time. If you need to grocery shop that day instead of taking the kids to the park play a board game or grab some popcorn and watch a movie. As hard as it is we must pre plan when possible and spread out our activities. When your body screams for rest you must give in when possible. I learned that the more I pushed myself I would end up in bed with a fever which really took away time from being a mom so I decided it was better to have a low key day with kids than no day at all. I have also had to wrap my brain around the fact that I am not who I used to be. My house used to be spotless!! Now I have to tell myself that a little dust is ok and it can wait but my kids can’t…there will be plenty of time to worry about dust when they are older and don’t want our attention as much. Point being I know how hard it is and how frustrating and sad it can be. You are not alone nor are you any less of a mom. One more thing on days that you can muster up the energy to actively play with your kids do it and then give yourself a break later in the day by taking an evening off in the kitchen… An occasional pizza never hurt anyone ;). Best wishes!!
thanks everyone I appreciate the advice and all of the stories. I'm still getting used to the diagnosis and limitations.
Taesra,
I remember when I was first diagnosed and my emotions ran from mad at the disease to mad at the world but I have dealt with this for over 25 years and while I do not like it. I have learned to cohabitant in my life with it and quit fighting against it. It was a hard lesson for me to learn because I have always been able to do as I wanted and just deal with it but over the last two years things have gotten a lot worse and there are days I do not get out of bed.
Taesra,
Stress is an emotion that will drain your energy faster than just about anything. Your disease does not define you nor your ability as a mother. You are doing a fabulous job and reaching out to others for help is NOT a sign of weakness. As you listen to your body and learn to recognize the signs of impending tiredness, that might be a good time to pop in a DVD for the little one. Kids love cuddling with mom on the couch...If it's an option, with the job market, you can find help for a very reasonable price a couple of days a week. I used to have a girl help me 2 days a week just to help clean, now I just do what I can when I can. You have gotten a LOT of really great advice here and there are a lot of dietary changes that can help you keep your energy throughout the day. I know that there are days that I don't want to eat at all, but if you can make yourself eat protein (a couple of scrambled eggs) that will give you an energy boost.
What I have found (I was diagnosed fairly recently) is that when you get a disease that is going to be with you forever I notice that I have gone through many of the stages of grief. Anger, depression, etc. until finally, acceptance.
The fact that you are asking for alternatives for taking care of your children just goes to show that you are a good mother.
It will get better. :)
Hugs,
DeAnne
Hi and bless you. I am a mother too. My children rsnge from 11 (twins) to age 31. Two things really help. Look for ways taking care of your children the easiest way for u to get thru repetitive needs. When my twins were born i had to stop my meds eccept for steroids. But even the steroids didnt really boost me. I am a single mom as well (even the 1st 18 mo of my twins life). Theres 1 word u wl love everything ab. Its PAPER! Buy coffee filters-paper plates-cups-cheap paper for a copy machine. Then get on the floor w/your kids. TV optional… I use to use my long preg pillow on the floor when they had art time. Use the filters to put the snacks on. Let then draw on the paper plates-paper etc… make them planes. Use the paper towels to wipe clean everyones faces. I found that very simple things-& easily svail in the house paired telling with your fatigue but entertaining them @ the same time helps. I used filters for old key(s) parachutes. Filters good for dolls hats. Its hard. When my twins were 2 my other kids were in their late teens. They helped too. But im u paper was a lifesaver for me. That with camomile/peppermint tea.
MUGSMUGS those are amazing ideas!!!!!! thank you
Mugs,
I thought I was the only one who used coffee filters for everything under the sun. They are great for cleaning mirrors and glass, holding cookies for the kids (they catch the crumbs), etc. My children are 18 & 24 although I don't see the 18 year old often as he is with his father. That said, I still recall the time we would do special things together. As a former teacher I can tell you that there are dozens of websites devoted just to activities that children can do with minimal assisstance. Beads & strings for jewelry, decopauge (sp) picture frames, and dozens of other ideas. Google "activities for children" and you will literally have hundres of free fun activities than the children can do create or play with.
Have fun and don't be so hard on yourself...
Hugs,
DeAnne
MUGS said:
Hi and bless you. I am a mother too. My children rsnge from 11 (twins) to age 31. Two things really help. Look for ways taking care of your children the easiest way for u to get thru repetitive needs. When my twins were born i had to stop my meds eccept for steroids. But even the steroids didnt really boost me. I am a single mom as well (even the 1st 18 mo of my twins life). Theres 1 word u wl love everything ab. Its PAPER! Buy coffee filters-paper plates-cups-cheap paper for a copy machine. Then get on the floor w/your kids. TV optional... I use to use my long preg pillow on the floor when they had art time. Use the filters to put the snacks on. Let then draw on the paper plates-paper etc... make them planes. Use the paper towels to wipe clean everyones faces. I found that very simple things-& easily svail in the house paired telling with your fatigue but entertaining them @ the same time helps. I used filters for old key(s) parachutes. Filters good for dolls hats. Its hard. When my twins were 2 my other kids were in their late teens. They helped too. But im u paper was a lifesaver for me. That with camomile/peppermint tea.
I was diagnosed with lupus right after my sons birth so he grew up with "mommy's" issues. The b-12 is a great idea, so is a prescription strength multi we seldom get the nutrition we need. And do have your iron checked I had anemia for over a year before it showed up on the tests. As for playing with your kids when can run around and act the crazy woman...when you cant reading to them or coloring building blocks was my sons favorite quiet play we would build an elaborate city and then he would bomb it and laugh like a loon. dont forget age appropriate board games like hungry hippos slap jack even candyland. Your kids dont care what they do with you they just want your time. Oh almost forgot we got a used kariokee ( cant spell sorry) machine and from 3 on my son was a mini Elvis. and jaon jett lol hope that helps
Mugs here again… wow I made a dozen type Os in my long reply to the tired of being tired disscusion. SORRY ALL. But I recalled even more ideas for paper fun &games with everyone playing on the floor. I remember an idea using paper towel roles for my daughters 18 inch dolls. We were able to slip the rolls of the doll-pretending it was a cast for the injured doll. Thwith e kids signed the cast. Another thought adding to beads idea. I too did/do quite a bit of beading. But more in the last few yrs. (When my girls were @ least 9) But a good beadpaper idea for younger kids is letting them sort them out for u. So back to the paper ideas again. Best reason using all kinds of paer so u can kinda rest is- just throw out when u are done. I recommend it when fatigue can be onging even for the sheer fact,meals can be served on plates. Plastic utensils used too. Its one lupus related cost worth the cost. Its always factored in my budget. Well Im going to bed. Its after midnite. Speaking of fatigue. LOL
I don’t have kids but I know all too well about being tired. As soon as I wake up. I’m tired I can’t take it!!! I guess it’s just one of those things we need to live with 
hope you all feel better