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icesktr189

Do You Have Trouble Keeping Up, Especially With Kids?

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I feel like I cant keep up with life a lot. When my POTS is bad, I am not able to take my daughter to the park, cook, clean or anything. I basically just do the basics like bathing her and making sure I keep her alive :)

We have been eating a lot of take out and fast food this past couple weeks because I am in a flair. My house isn't disgusting, but def needs to be cleaned, but I just don't have the energy. How do all of you keep up? I only have one child who is 3 and I cant imagine having more in the future at this point.

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Dani, I feel for you. That is an age where they are on the go and don't understand that you can't keep up. As for the other stuff, I think many of us have problems keeping up.

I can no longer do many of the things I did with my daughter, and I hate it. She is twelve, so she can do some stuff for herself, but this is the time I looked forward to being able to do so much with her and now we can't. Some times I have to watch her go with others and I am happy she is able to experience these things, but sad they are not with me. One of her friend's mom is buying concert tickets to an outdoor concert for Keith Urban. She has never been to a concert, I thought that would be anexperience we would have together, but I can't climb any stairs so the concert is out for me. She is so excited and I am happy for her but depressed for myself, plus its hard to trust another adult to take care of my baby. I know this is a safer type of concert, but I want her right by the side of the momma.

As for the day to day stuff, I just try and do what I can. I have to keep hope that it will get better, if I didn't have that hope I don't know how I could go on. I think you have to just do what you can and try too not get to down. As for take out food, maybe you can get some easy to make ideas for food. When you do have good days, maybe makes some stuff and freeze it for those bad days? I admit my dinners aren't as great as before, but I have a staple list of go to menus for good days and bad. And there are some healthier frozen dinners out there now that are pretty cheap, my husband actually eats them for lunch at his work.

Hope your flare stops soon, (I am in the middle of one myself). I think that is why I am posting so much. LOL

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Dani,

I'm sorry you are going through this. I'm with Joann on this one, I feel the same way about my children (16) and (15). I'd so looked forward to this age and being able to do all sorts of things with them and now I can't.

In a few short words (which is a rarity for me :)) ...in answer to your question, one day at a time. Do what you can when you can and try not to worry about the rest. Try to focus on all the things you can do, like at least we all know now that you have a clean baby!! Don't give up!!

Here's to hoping your flare ends soon and you get some relief.

Be well,

Bebe

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I have 4 kiddos who are 4, 7, 10 and 18. I remember my husband signing my middle kids up for baseball and my eyes welled up with tears. I knew they wanted to play, they love it and are very good, but all I could hear was the frustration and disappointment from them when unavoidably my husband (Army) wouldn't be available and I couldn't get them where they needed to be.

Yes, I could ask for help and I am sure someone would, but 2 kids 3 practices a week at different times and locations. I just can't seem to ask that of someone when I can't really offer the same kind of help / support in return.

I wrote awhile ago (sorry, I know it always comes down to something I wrote) about parenting from the couch, I really did get great feedback between the blog, FB page and messages. Some new ideas were for my hubs to help set up a scavanger hunt (easy for my 4 year old). She had a "list" to check off. A water bottle, a grab bag of pretzels (these were for her snack) a few hours later it was time again, she looked for her favorite book and a specific stuffed animal (story time etc...) That one was particularly fun because she got excited when it was time to look for stuff again.

I plan on updating a new post with some of the great ideas people gave us.

http://justmildlymedicated.blogspot.com/2013/02/parenting-from-couch.html

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I'm a grandmother now - when my kids were young, I definitely had trouble keeping up - I did my best because, that's what moms do - I wasn't diagnosed at that time and everyone thought I was a little crazy - I just couldn't do the "extras" - no team sports - no PTA - etc...I tried to go to school events in the evening but, when I passed out during the science fair presentations, that ended my participation. I think I was viewed as a "bad" mom because I had to rest so much and said "no" an awful lot. I definitely recommend being a grandparent - I can enjoy the grandkids on my own terms and hand them back when I need to - Oh, I stretch at times and keep them when I'm really too tired but, they behave a lot better with me than with mom and dad!

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It's so frustrating isn't it? I try to keep in mind that that other children are in a lot worse situations. It doesn't make me feel any better about it, but it does help me keep perspective. I was asking almost the same thing on here about 1 week or 2 ago. It's so nice to have people here to support you. One thing I have done in the past year is hire somebody to come in and clean. At first it was every two weeks (and believe me, it wasn't enough), but now I have been able to do a little more so she comes once a month to do the deep cleaning. So between her and what I can do and what the kids do for chores, it's doable. My husband still gets frustrated with the house not being cleaner, but we can only do what we can do. I know I couldn't keep up with 3 year old though. My youngest is 9 so he doesn't need nor want constant supervision. I don't see any easy answers there unless you have family to help. I will keep you in my prayers.

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Its so nice to be able to relate to all of you. When I talk to my mommy friends about this stuff, they really don't get it. I say I am exhausted and they say they are too, but unless you have experience the chronic illness exhausted, then you really don't understand. I just feel like I am trying to survive each day at this point. I look back and laugh because I thought the newborn stage was tough, but at least they didn't move! It doesn't help that my 3 year old is super spirited and a normal adult probably couldn't keep up with her lol. I think my saving grace will be her starting pre k. I feel really bad about being so excited about her going, but I feel like she is not getting enough attention from me everyday and really needs a playmate. Lately, I have been really wondering if I want more kids in the future. I would love another, but I just cant keep up. I feel very bad though because I don't want her to miss out on a sibling though.

I will def try that scavenger hunt! She loves stuff like that. My mom helps out a lot,, but she also has POTS, so her energy is limited too. It stinks not being able to be the parent you want to be :/

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Can you get saline infusions when you're having flares?

I really want a PORT, but Dr. Goodman wants me to try more meds first :/ I really hope he eventually gives in because my mom who has POTS also has a PORT and its a life saver for her.

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I've been working on Dr G to do the IV's for me in flares because I have kids with special needs and I HAVE to be functional. Not that other kids don't need parents, but with mine their dad is not involved and my husband can only do so much. With all their therapy appointments and Dr appointments I have, I have to be able to transport safely etc. Dr G still won't do it. I see him next week and I'm hoping he will at least write me a standing order for the weeks when I have massive appointments (like next week...) Especially during AZ summers which are quickly approaching. I don't plan on him giving in at all. But I am going to keep asking.

I also have a 3 year old and I feel bad that I can't do more with her and that my boys 9 and 12, ask me often if I need my "sick blanket" that they named several years ago. They think it's magical :) I just remind myself that all I can do is my best. I relate to feeling like I can't keep up though!

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You are definitely not alone in this. My daughter is now 8 and I have struggled all the time being very weak and trying to play and keep her entertained. Playing tag is something she loves but it is very rare that I can chase her around. She will always be an only child and this past year she is feeling lonely because of it but I knew I didn't have enough energy to adopt another baby. She is my world and her teachers tell me she is the most loving and compassionate child they have ever met. I think it might be due to my health that she has learned to be caring and kind. Try to look at the positives always as it makes this unbearable illness a little easier to accept. I also was lucky enough to feel pretty well for the last six months but now am flaring bad. So back to this site I come and it is so helpful to know I am not alone again.

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