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How do you get the rest you so desperately need? What do you do with your kids when that irresistible need for sleep hits and you are the only one home? My daughter is 4 1/2, and an extremely well behaved 4 1/2 year old. She loves following rules, and has always been that way. I think they make her feel secure.
Anyways, Dad is always working, trying to pay for my medications, and we don't have family here, or anyone close that can step in and help out. Total exhaustion is one of my biggest symptoms. At times I sleep for a week or two straight, waking for minutes or sometime mere hours. And when the urge to sleep hits, there isn't much I can do, except sleep. If I have to force myself to stay awake, then I get terribly sick and start herxing pretty quickly. Most of the time, just an hour or two is enough to do the trick. Then I can get up and function. But if I don't sleep when I need to, I get so sick!
My daughter is in preschool, but only 4 days a week. It has helped tremendously, but she is about to be done for the summer. And I am panicking already. So, to my question...How do YOU get the sleep you need? Do you force yourself to stay awake, or do you give in, put on a movie for the kid and go to sleep? thank you!
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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posted
I'm a single mom of two kids. Summer time is a very stressful time. I have a 6 yr old daughter and a 10 yr old son. I have only truely dealt with the extreme lyme issues for the last couple of years. This will be my second summer.
During the school year I sleep about 4 hours during the time the kids are in school. So summer time is dreaded for me as well.
YES, a movie is a great idea. I do that often. I also make sure that I have fed the kids before I take a nap, and/or get a snack ready for them. I also put a drink for them in the fridge. (My kids tend to munch all day) This helps to prevent them from waking me up, with the MOM, I'm Hungry.
I do this on the weekends now.
My kids know the rules, NO one allowed in or out while I'm sleeping. No answering the phone. They are not suppose to wake me up for the little things.
Also, My daughter loves to color. So, I can have her bring a coloring book and crayons on my bed and color while i rest and try to nap.
When they are physically closer to us while we nap they feel more secure. As I have done this LOTS as a total nesecity I can tell you that they get use to it. And when you feel better after a nap, they will be happy to see that
And there are times that she ends up taking a nap with me, we lay down together, cuddling and she ends up sleeping too. I love that cuddle time as much as she does.
Of course if you can manage to find a play date for a few hours once in awhile.... DO IT!!!
Try not to over due it. And to pace yourself. To try to take a break before the total exhaustion hits if you can.
HUGS
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
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Laura, thank you so much for your response. I know exactly how you feel. This will be my second summer of treating Lyme as well. I will be taking my daughter to my parents house for the first month of the summer, a few sties away from home, and leaving the hubby and teenage son together @ home. I wish I could count on the teen to help out with his sister so I can rest, but he just isn't that person.
Do you think 4 is too young to not have a parent awake with them? We bought a futon for our living room, so I have a bed on both floors of the house, to make it easier. Most of the time, when I nap, we go into my bedroom, so she wont be tempted by the doors. And I too, have learned to cherish this cuddle time in bed. Granted, watching movies would never before been my idea of "quality time" my perspective has changed since I have been sick, and now I take whatever I can get.
Last summer was too hard on my little body. We were hitting the Lyme and Bart very hard, I had no help with the kids, not a single day without them, and I ended up crashing. By the end of the summer, I was so weak that sitting upright was too difficult most days. The only option was to be flat on my back. After that, my doctor put me on IV, and I have been ever since.
Maybe, since I know 2 teenage girls, I could hire one to come once a week, and just play with my daughters and I can sleep upstairs. That would be very affordable. Thanks for your ideas and support. I hope this summer goes better for you. I cannot imagine how hard it must be to do it all by yourself. Much respect to you, you must be a very sting woman. Your kids are lucky to have you. Take care...
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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First I want to say WOW, it amazes me to consider the pure effort of parenting while dealing with Lyme.
So much respect for all of you folks dealing with that challenge!
For me it's my child who is sick, so while heart wrenching I am free to do research and provide care while feeling pretty good my self.
My thought for you is don't give up on what good supplements detox and diet can do. If you add the right "ingredient" you could have significantly more energy.
I know it can be really hard to figure out what to do and to afford the cost of added products, but some things are really low cost, like trace minerals or going for a no sugar diet.
Are you able to do holistic body support?
If you want to "talk supplements" I'm all ears.
Take care!
Posts: 372 | From british columbia | Registered: Feb 2012
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Thank you all for your ideas, and support. Sometimes all we need is someone to say, "wow, that must be really hard", and we feel so much better.
Canadianmama, I am not too sure what you mean by "holistic support", but I take a boatload of supplements. My LLMD is also a naturopath and chinese medicine practitioner. I take about 40 different medications and pills. None of them have really helped with the fatigue though. I think my body is fighting so hard, that it wipes me out. But I am always open to suggestions. Maybe I just haven't found that thing for me yet.
I guess I just wanted to know that other moms do the same thing, and that I am not neglecting them by putting on a show when needed. Thanks for the support, I knew you all would get me!
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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AND, I am so inspired by you all. Whether you are sick with healthy kids, healthy with sick kids, or sick all through your home, you are all amazing, inspiring, and so strong! Especially those who are single parents. I hope you all continue to get better, and have the joy of unrestricted lives very soon!
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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It sounds like you are doing holistic body support to me!
You are probably right that your body is working super hard to get well.
Having a naturopath and cmp on board I'm sure you are getting good advice, I just wanted to make sure you weren't stranded not being able to get that type of support -if that was the case I'd do my best to help you get started, but it sounds like you are all good there!
I'd also like to second your praise of all of us facing this disease, We need to be our own cheerleaders.
Healing vibes to you all.
Posts: 372 | From british columbia | Registered: Feb 2012
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Your messages have finally made me feel like I'm not alone. I feel for all of you who have to be a mom, caregiver, and deal with lyme.
I have kids ranging from 4 to 9yrs and while the school year has been somewhat bearable I am horribly nervous for summer. I have to work part-time to pay for the crazy lyme costs... thankfully I work at home and can sneak a nap. Today, however, I was at a meeting and practically fell asleep.
My Mepron is making me so spacey though that I don't know how I'm going to function with the kids and work and not enough sleep.
Maybe I can limit the TV and computer games and let them do them only when I sleep. Or maybe get a little mother's helper for a few hours... I feel like an awful mother!
posted
I don't think that your 4 1/2 year old who likes to follow the rules is too young to watch a movie while you are asleep. If you are really worried about it, then have her watch the movie next to you as you sleep.
Lock the doors, and keep the phone right next to you. Have a drink right next to her. It eleminates her need to get up and it keeps you reassured that she is safe and right there.
There are just times where you simply can NOT do it.
Some days we have more energy and focus than others. You must give yourself permission to take those breaks. It's okay.
Today, Is not a great day for me mentally. I think I will be taking a nap in my car at my daughters softball practice.
I overdid it last night. I made sugar cookies for her class (not even from scratch, just from a box. And let her decorate them this morning)
But, I'm feeling it mentally, because I didn't get enough sleep. And my shoulders hurt. I sat down most of the time, but I guess I bent over while doin some of it. (It wasn't the roll out and cut out type either)
We always remember how much we use to be able to do, and how much fun it use to be. But, we simply can't do that anymore. Before, I would have been totally grossed out that I sent in boxed cookies, instead of totally homemade cookies. I loved to bake.
But, I was happy last night that I felt well enough to make those box cookies. It was an accomplishment. And my daughter was happy:)
My son, knew that I would be in bed all day today while they were at school today. It surprised me that he observed that and commented.
They realize that we can't do as much as we want.
We do what we can. And they appreciate it!!
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
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Laura W - I had to laugh about the boxed cookies. I love to bake too.... and this year I bought my son's class Munchkins instead of making him cupcakes for his birthday. I was so apologetic to his teacher. And you know what she said? The kids all loved to donuts, and were so excited for them... Kids just want to feel special.
As long as I can accomplish that, I can feel happy.
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I have a 19mos old and a 3yr old. I have only recently been able to do more things with them but I still need a lot of rest and there are days when I herx very badly.
I have set up fun activities outside on my deck. We have a water table, baby pool, bubbles, etc. I sit outside in the shade and rest and they have fun. Then when we go inside they are quite tired too so they relax with a movie.
A lot of times i have to go to bed early so my 3yr old will bring his radio and CDs in my room and listen to them while he spends time with me.
It can be tough but we have to hang in there Posts: 98 | From Ontario | Registered: Feb 2012
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