I've crashed hard

[violahen]

Hi Everyone:

I've been trying to get up the energy to post this because I know you will all understand and I need a boost. I have POTS and EDS. For a week or so I've known that I' was heading for a crash...Well I got there last night. (I am home alone for the next two weeks while my husband is out of town. We are both professional musicians and he travels quite a bit. I tend to stay ccloser to home for work.) Last night I dragged myself to an orchestra rehearsal which was probably my first mistake. I should have called in sick (but I have a concert tomorrow night!). I was feeling extremely weak, shaky, dizzy, the works...

I got home around 11 Pm and went straight to bed. A couple of hours later I was dreaming that I was having horrible symptoms. I woke up and it turned out I was. I eventually stabilized somewhat and went back to sleep. A few hours later I was having another dream that I was having horrible symptoms....this time I was fainting as well....At this point I woke up and heard my youngest son who is 3 screaming for me. I guess he had a bad dream and was scared. I was afraid to get up to get him because I knew I might faint. (I am a fainter...even when lying down!) The cries continued so I got up and fell straight down to the floor. I was out cold. When I came to my son was standing over me now REALLY hysterical. Even though I desperately wanted to help him and comfort him, I couldn't move...I felt paralyzed. I tried to move and could not. Eventually I was able to get back into bed and allow him to jump into bed next to me. He seemed ok considering what he had experienced (by the way, he has experienced this before with me...both my kids have) I was not ok. I was a physical and mental wreck. All I could think about was "how am I going to get through tomorrow....and the next day and the next?" I spent much of today in bed...I simply could not get up. My 5 year old was at school for mucvh of the day, but my 3 year old just wandered around the house and played while I was "trapped" in bed. It is the most depressing and scary feeling.

Whenever this type fo thing happens I tend to be a mess for several days following at least. I am still quite debilitated from it and I'm worried it will happen again.

The worst part is that my husband seems to only be able live in denial about my illness. He is a great guy and loves me very much but he simply can't deal with this. He has had temporary moments of support and understanding, but only after Dr. Grubb has really kicked him in the butt about it. It has been very difficult, and a strain on me (and him, I'm sure). I feel like he has too much faith in me...he takes for granted that I'm going to be ok all the time, and I know that's just not true. I can't take the pressure of his expectations.

Sorry to rant....I just needed to put it down in words...I don't expect any magical answers.

Right now I feel like a need a hospital....I feel very vulnerable and weak. I don't want to call Dr. Grubb's office because he is so ill (and it's the weekend!) I'm not really sure what to do. I'm contemplating going to the Cleveland Clinic for fluids, but I have to go through the ER for that...that's a nightmare in itself.

Oh well, I am going to try to sleep.

Thanks for reading.

Kristen

[MightyMouse]

Kristen, I hope your crash is finished and you're on the upswing. It's hard enough to worry about oneself, but then to have the kids to worry about too is tough. Kids, though, are amazingly resilliant.

Nina

[ethansmom]

Kristen,

I am so sorry to hear that you've been in the midst of a crash...it can be so overwhelming anyways, but when you have little ones to care for it is downright scary sometimes. I have a 2 year old and a baby on the way, and there are days when I can barely mange with just the toddler This has also been a very tough pregnancy (with POTS and extreme nausea) and there have been many days when he has had to play by my side while I lay on my back for hours at a time.

I also understand your husband's reluctance to fully come to terms with your illness as well- this is something our family has struggled with the most in the 3 years since my diagnosis. It can make a person feel so alone- but the wonderful thing about having children is that they are so young and impressionable, that they will sort of grow up learning how to accomodate your situation, and the best we can hope for is that our kids will become compassionate adults, and appreciate the fortune of good health.

Hang in there and I will hope for you that you will come out of your crash soon. Take care of yourself

[purplefocus]

Kristen,

I am so sorry you are going thru this. I know all too well what you are experiecing. I have a 3 year old at home with me by myself 15 hours a day. What we do when I have "bad days" are stay in his room. I bring snacks and drinks, the cordless phone and whatever else we need and I lock his door. That way he has all his toys and tv with all his videos. I know this might not be the best thing but it is better than him running around the house if I faint. I too understand about your husband, mine does the same thing. Sometimes he doesn't realize just how debilitating this illness is. I put up a front too often, do you do that? I need to let him see how sick I do feel at time instead of pushing myself too hard which usually leads to a crash. The only advice I have for your crash is to drink drink drink. I find that the more hydrated I stay the better I feel. I wish you the best of luck. I wished I had more advice, just know you aren't alone.

Paige

[ETOLY]

Hi Kristen,

Do you have some type of a child care backup plan for when your husband is out of town? For instance, a trusted friend or family member who can care for your children when you have heightened symptoms? Every parent may find that there comes a time when emergency child care is needed. You might want to build up a list of possible people you trust, and your children know well, for when these situations arise.

ETOLY

[geneva]

WOW what a horrible night you have had...I am so sorry. Sounds like you body was trying to let you know that it needed more rest. MAybe you could really use the fluids right now. While a trip to the er is no fun, it might help get you back on your feet sooner. Since you are going to have a long 2 weeks trying to care for the kids alone it might be best to consider. Can someone keep the kids for you?

Take care of yourself.

[Ernie]

Hi Kristen,

I am sorry for your syncope last night. I know exactly how you feel. Sometimes it's just so hard to know what to do and it seems that whatever we do we are bound to faint.

I would go to the ER to get an IV. This is the fastest way to recuperate from a syncope (for me at least). I would also find someone to help me with the children even sleeping at home during the time that your husband is gone on business trip.

Hope you are feeling better.

Ernie

[Guest tearose]

Hi Kristen, what a lousy time to have such a spell. Are you any stronger right now? I feel for you being without your husband and having to deal with the kids and home and yourself!

Wish I could help you at least feel stronger!

Since you are feeling so vulnerable can you at least skip rehearsals and other strenuous activities?

The husband issue is very understandable to me too. I think my dear love NEEDS to think that I am fine because he can't allow himself to see just how fragile everything is! Please just sit down with your husband when he returns (and I'm sure you've done this many times) and explain that you need him to be more supportive because it can be tough for you.

Please take care, tearose

[DancingLight]

kristen,

i just wanted to offer you support too...

you see ken davis and talk to him regularly too, right? you are super-on-the-ball, so i am guessing that you already maybe saw him with your husband to try and work out some of the tensions related to your illness? how did that go?

i just cannot even imagine what you all are going through who have children during your crashes...you have so much strength...and i know you all will get through it...and your children will too...

as for 'putting on an act'--i am not married but i do this with my dad and friends...and i really need to be better about not doing that b/c it is exhausting! hmmm....i am not helping much am i?

also, your bad dreams! i hate those! last night, after my miserable pre-op appt. lying on the hospital floor, i had surgery nightmares. i also have dreams like you had last night.

man, this wasn't a very good post on my part...i'm sorry. serious brain fog, but i wanted to support my fellow fund-raising committe buddy. (no worries, we'll wait till we both feel a little better!)

check back in with us if you can. i hope that you have folks who can maybe help out with the kids? although, honestly...i know it is so hard to find...my mom and i have found it very hard to get outside help...

goodnight...

emily

[Guest Mary from OH]

Kristen-

I pray you're feeling better today. Must be the weather!! There are so many of us feeling LOUSY right now!! Perhaps some IV's would help? Could you go to another ER besides the Clinic? It might be "faster"? Or do they have easier access to your records? Any hospital could call Dr. Grubb's office and talk to the Dr. on call (I'm sure not Dr. Grubb) and get orders for what to do.

Sending healing vibes your way!! Hope hubby can get back sooner if possible!!

[kristinp29]

Kristen, I hope you are feeling better today. It must be hard having the responsibility of taking care of your children while you are so sick. I was so blessed being the child while I was sick, with the parents taking care of me. God bless your heart for being strong for them.

Love,

Kristin

[MomtoGiuliana]

Kristen

I hope you are coming up out of the POTShole now. I know how hard it is to cope with this and care for young children as well. And how awful to go through this without your husband there. It can be confusing and scary for them to see their mother incapacitated. However, I so agree with Nina about the resilience of children. I am sorry your husband is having trouble coming to terms with your condition. Can he come with you to a doctor's appointment in the near future?

I remember that you said that you had recently stopped the SSRI you were taking. I can't help but wonder if that could be playing a factor for you now. In my case, about 2 months after I last tried to cut my SSRI, I had a relapse of symptoms. Not as bad as yours, but definitely affected my day-to-day functioning. I went back on the SSRI, and seemed to stablize within a week. I was quite surprised by this, as I wasn't sure the SSRI was still helping me. Apparently it is.

I hope you have some people you can call on for help. Please keep up your fluids and salt and try not to push yourself for a few days.

Let us know how you are.

Katherine

[DawnA]

Kristin, Hope you are doing better now. I agree with Ernie....IV fluids ahve always helped me recouperate the fasted. Which you need when you are caring for young children. Take care, Dawn A

[Guest tearose]

Mornin' Kristen!

How are you doing my dear? I hope you know that we continue to think of you and send you our support.

Are you more steady on your feet yet?

be careful, take care, tearose