Horrible Day, So Uncomfortable!!

[Ctat333]

Today has been a bad day. My body is finally catching up to me after all the Thanksgiving craziness. I promised myself that I wasn't going to overdue it, but of course, that didn't happen lol.

My have been in IST on and off today. The highest my heart rate has been while resting has been 134. Right now I'm around 113. Whenever I have had to stand up, it has sky rocketed into the high 150's. I can't breathe, my neck and shoulders hurt, I have a HORRID headache, my brain can't think straight, I'm dizzy, I'm weak, I'm nauseas, and I'm incredibly exhausted. My lower back has spasmed up and is killing me, and my legs are aching something fierce. I have parathesia in my left shoulder, and that is acting up really badly right now too. I keep getting these electrical zings and zaps....not fun.

My patience is almost gone. Im trying so hard to hold it together until my husband gets home, but I keep getting after our kids. I feel horrible Its not their fault that I feel bad, but yet I snap at them anyways.

I don't know what to do to help myself feel better. I've been resting, I've tried to walk, I've loaded up on fluids, I've tried meditation. I am at the point where I just want to curl up into a bawl and cry. I don't feel good, and there is nothing I can do to fix it.

I am counting down the days until I am able to see someone and start trying to get relief.

Thanks for letting me vent, and sorry for sounding so depressing. I just feel like I have no where else to go right now, and I'm frustrated and angry.

[Bigskyfam]

Hugs. Those days are not fun and so unpredictable. The Calvary will be there soon and we are here

[Becia]

*hugs* I'm kinda in the same boat. Still trying to recover from thanksgiving, my birthday, and a busy weekend on top of two very long and busy days. On top if that, I think I'm coming down with something, because I'm coughing and stuffy along with absolutely no energy.

I am laying here in bed thinking of all I need to do, like school stuff (taking transcription classes at home), or cleaning, or cooking, and literally can't make myself do it, no matter how much fluids I'm drinking. As much as I need it, I don't even feel like drinking. Roommates are probably gonna have to start forcing Gatorade down my throat, lol.

I normally have insomnia, so when my body decides it's not gonna be awake, I tend to go with it. Only problem is meds. Midodrine doesn't let me lay down, so I've been skipping a couple doses the past few days to allow my body to rest.

[Ctat333]

Thank you Bigskyfam and Becia, I appreciate the comfort more than words can express.

I have so much stuff that I need to do, but can't bring myself to do it. I just have no energy, and everytime I stand up, I get close to passing out. I am trying to conserve spoons, so to speak, so that I can still take care of my children. I am a SAHM to two beautiful boys, ages 5 and 2, and they need a lot of attention lol. All I can do sometimes is enough to take care of them, and that's it.

I feel even worse, because when my husband gets home from work, he has to do the cleaning and the cooking that I was not able to get done. I am lucky that he does what he can to help me without complaint, but I'd be lying if I said it didn't bother me that I don't always pull my weight.

Here is hoping for a better tommorow

[KareBear]

I'm so sorry to hear about your day today! Gentle ((((hugs)))) coming your way. I can relate to days like you're having and it's pure misery. Maybe when the hubby comes home you can ignore the housework, order pizza, and have him give you a relaxing massage Housework will always be there tomorrow or even next week, if it's not urgent it I skip it when it's a rough day. If anyone has a problem with my messy room or house then they are welcome to clean it Hang in there! I hope tomorrow is much better.

[Lethargic Smiles]

Taking care of kids with a dysautonomia flare is awful. I don't know why, but nothing triggers my symptoms quite like a kids voice/squeals (how depressing is that) or kid's shows/movies/toys. It's awful. Then I feel awful for hating the sounds when the reason TV is being watched is because I'm so sick. I have a stepdaughter (4) and younger kids require so much up and down. I can't imagine TWO of them. They also require a lot of talking even if you are all just hanging out, watching a movie. They have lots of questions, they need corrections, they need instruction. Even when I ask for things to be brought to me or when I announce I'm getting up now, if you don't have me do something now, you'll need to wait 15 minutes... It's still really hard on my body. When the sounds are going on and I'm having a bad health day, even laughter (again, sad to say it), it makes everything worse and my brain just freaks out and can't think of anything except the over stimulation.

It melts my heart when my stepdaughter asks me to do something, I say I can't because I'm not feeling so hot, and then she thinks of a way to modify the activity so it can be done in bed. It also makes me feel so awful for the sound of her laughter making me feel so much worse during a flare. I always felt so terrible about that and thought it might be an "evil stepmom" thing until I heard a birth mother say she felt the same way about her own children's voices during flares and other moms chimed in saying the same thing. I love her so much, but she makes me so sick. I have this ideal in my head of the parent I want to be, but I can't be that woman right now. It is such a terrible, conflicted way to feel. The little person you love more than anything in the world... you'd jump in front of a bus for them, make you more sick than anything.

In terms of when I'm in a flare and what makes me worse... I'd rather be in the ER with a drunk guy in the bed next to me. I'd rather be in a restaurant with annoying music. I'd maybe rather be in a sauna. I guess I just wanted to let you know, you are not a wuss, taking care of kids + dysautonomia flare = worst thing ever.

I think you shouldn't feel guilty. Imagine you looked back on a memory and your Mom was as sick as you are and you were the kid, would you resent her? I'm guessing not. Every single moment doesn't have to be "magical" with your kids for you to be an awesome Mom. You'll always put your kids first, but there are times when your body leaves you no choice but to focus on your own well being more than you would at other times. Sometimes, parenting is just putting your head down and getting through the day in one piece!

[BeforeTheMorning]

Hi,

So sorry that you are having such a hard time. It's really awful feeling so bad and not being able to do anything about it.

You're not alone in snapping at people, when I feel really bad the snappiness can come on just because I'm so frustrated with myself and the way I feel, and I hate it.

My thoughts are with you and I'm sending you gentle hugs. When you're in the middle of a flare it can seem like it will never end, but it will, and I hope that it will end very soon for you.

Best Wishes,

Lyla