New Member... Having A Bad Day

[hollie]

Hi all!

I just got dx with POTS in Feb. I have a 2 daughters - 5 and 3 yrs. Since my dx, I'm lucky enough to be at home most of the time. But my daughters are sometimes more tiring than actually working. You all know - one day you're fine - the next stinks! Today stinks! Like many times in the last couple weeks, I walked my girls 4 blocks to the park. Once we got there, I wanted to collapse (as usual)! Of course, then they both want pushes on the swings, help climbing, etc. I feel AWEFULL when I have to say I can't. They don't understand and keep asking for help. No one understands - not even me! Other parents look at me like "Get off your butt and help your kids!" It's only the beging of the summer, and I look ahead to the rest of the summer. I can't help but think of how much more the girls will want to do outside the nicer the weather gets. I can't keep up with them and I feel like I'm taking their fun away.

I'm SO tired of the question "How are you feeling?" I'm SO tired of trying to explain myself and the disorder. When someone asks, I know they're just concerned, but I don't even want to hear it any more. Everyone asks, "Well, isn't there a medication you can take?" I don't know how to explain that it's not that simple. I'm not sure my husband even gets it.

GRRRRR!! I just needed to vent!!! I'm glad I discovered this site! It's the ONLY place I feel understood!!! Any advice?

[DSM3KIDZ]

I feel your pain. I have 3 kids 9,6 &4 they were 5,3 and 7 mo. when I got sick with POTS. I have alot of anxiety when the nice weather comes because they want to explore every where and I can not keep either. Tjis is just so hard and breaks my heart. I want to be the mom I was, the one I dreamed of being.

My kids are very compassionate from all this but that's not true from everyone. I think I have alot of people who think "your still sick" and I hate the question about meds. Don't you think we wis there was one cure for us all.

Well if you ever need to vent on a more personal level feel free to PM me.

Hang in there

Dayna

[Kelly]

well i havent got any children so i dont know what your going throught there, but i totally understand about the good and bad days and how its all people want to talk to you about, i used to chat to anyone about anything but now all people ever know what to talk to me about is my illness and people just dont understand, just because they havent heard of POTs they seem to just shut down and you can tell they are not listening!! this website is so helpful as you can talk to people in the same situation! i hope everything goes ok for you and you can get some medication to help

Kellz

x

[Rachel]

Hi Hollie,

Welcome to DINET. I'm glad you found us. I think you'll find a lot of help, answers, advice, and ideas here.

It's probably confusing for your daughters and hard for them to understand why mommy can't do the things she used to be able to do, but they will learn. When you are having a bad day, explain to them in simple terms that sometimes you are very tired and need to rest. Perhaps there could be something special the three of you could do on days like that. You could watch a princess movie, color, read under a blanket fort inside the house, or sit down and have a quiet tea party.

My husband and I have a 2 1/2 year old son, and every day is quite a challenge! We have to live with my parents because I need so much daily assistance, but I wouldn't trade my son for the world. I've been disabled since before he was born, so he has never known me when I had energy. That probably makes a difference in how he responds since he hasn't known life differently. William is becoming very sensitive to me when I'm not feeling well. He'll walk up to me and say, "No fell well, Mama?" and rub my back or give me kisses. When I'm having a better day, he notices and says, "Feel so happy, Mama?" Even at the age of 2 1/2 he is learning how to be gentle when I'm not doing well, how to play quietly, and how to be extra patient with me.

On my extra-bad days, I have to stay in bed, or lie on the couch. We will look at books or watch a movie. Sometimes my mom or a friend will watch William for the day so that I can get some extra rest. Perhaps there would be a friend nearby who could watch your girls for the day when you need a break.

Have you tried compression stockings? These might make trips to the park easier for you. The stockings are tight and help to keep the blood flowing back up to your head, making it easier to remain upright for longer periods.

Also, as the heat increases this summer, if you find that you are very sensitive to the heat, cooling vests can help your body to maintain a proper temperature. This may help you when you go out with your girls.

I hope you can find the help you need.

Rachel

[Tammy]

Hi Hollie,

I know also how your feel. My daughter is 3 1/2 and very energetic as all toddler and kids are - which of course, I am not! I have also gotten looks from people wondering why I'm not playing with my daughter outside or running after her. However, I could never walk 4 blocks to a park... Just walking inside my house is challenging, so you may want to try playing closer to home if you are able to. I'm not sure if you have a backyard, but if you do, and it's big enough to play back there with them, find things they can do and enjoy - such as a water sprinkler pad, water activities seem to keep them busy for hours! Sand boxes are good too and also a tricycle / bike in the backyard is something they can do too. I hope you can find activities this summer that keeps them busy but yet allows you to not over=extend your energy limits

Take care,

Tammy

[calypso]

Hollie,

I hear you -- I have two daughters (1 and 4) who often want me to lift them, carry them, help them, etc., and usually I am wiped. However, I have found two things in general help: Exercise (without kids). I started a weight training program about six months ago that has really, really helped me get stronger, and it's actually boosted my endurance for trips to the park and lifting the kids. I also have less fatigue in general.

The other thing that helps is connecting with the kids. I think when I spend more time with them, they aren't so demanding for me to help them at the playground, and they seem to sense when I'm having a rough day. I am sure you already spend a ton of time with them, but even having a conversation with them (something like "Mommy's feeling very tired today. Do you remember when you felt tired on XX day and needed to rest?" etc., etc.) may help. I would not do this very often, though, as they will get desensitized to it and not take you seriously when you need them to.

Good luck! Eventually, another day will begin and hopefully will be better.

Amy

[carinara]

I can relate to so many things that you all wrote. I wanted to be the best mother in the world myself, but when my daughter was 1 year old i got really sick with pots. i was bedridden for a while. But back then nobody knew what was wrong with me. Doctors always told me that they can't find anything. I felt so sick almost every day. I couldnt lift my daughter up without bad symptoms or change her nappies and since everybody told me that i should just try harder, i pushed myself to a point where i felt bad 24 hours a day . I put myself under a lot of pressure because i wanted to be the mum i always dreamed of.I dont remember how often i just cried because i wasnt able to take my daughter to the playground and if i did manage to, i was so dizzy that i couldnt play with her and ring somebody to pick us up.

Since i got diagnosed 10 month ago, i startet to learn about whats been going on with me in the past 10 years. If i only would have known all this before, i would have gone about it in a total different way. For years people made me feel as if i am a lazy mother because i couldnt keep up with all the activities healthy people do with their children, and i cant really blame them, because i had no diagnosis then, I had such a bad conscience all the time. The harder i tried, the worser i felt.

now, that i know so much more about this illness, i wished i would have known this years ago because now i know that i was always right when i said there must be something really wrong with me. It's not lazyness ist POTS

[tobel17]

Hi and welcome...

I'm sorry it's been so hard, and I hope that you've found some solace in a diagnosis. I know that trying to keep going with a normal life is difficult, and trying to cope with everyone elses understanding is hard. But accepting your own hardship is the worst. For me, I knew something was wrong, but when everyone kept looking at me like I was crazy for being so fatigued, or when others would whisper or even say things to me directly It totally wiped out the confidence I had in myself to keep going. I thought, if they think of me this way, then how hard do I really want to try to keep pushing my niece on the swing, or go up and down the stairs with my nephew over and over because he loves them so much.

Its good to hear you have good days, too. I'm sure that your little ones will come to understand that you're not just tired, and that you're helping them. Have you tried talking to them about it, in simple terms? Sometimes I find that telling my nephew that I'm not just tired, but that since I'm such an "old" aunt, that I need his help in keeping me going. He loves it! He loves to help encourage and be a part of keeping up the "play."

Please feel free, any time you would like to talk, to do so. It is good to meet new people, and to share in this together.

Best wishes, and I hope you have more good days ahead.

Tobel

[wireless]

Well, upon reading your post my ideas are... Telling people politely "awww, it's nice of you to be concerned. I'd much rather talk about something more fun and positive." And maybe launch into a topic right away. At the park, sometimes you might be able to ask someone else if they could give your kids a push, if they are standing right nearby pushing their kid anyway. Possibly say you are feeling a bit dizzy or nauseous. Maybe they can play frisbee or something else?