Easter Was Rough For Me And Family

[Guest sonotech]

I was feeling normal (for ME) on saturday evening and got all of the Easter stuff ready for my kids. We were also planning to have both MY family AND my HUSBANDS family over on sunday eve for a little party (and yes, I do have that social anxiety thing).

Anyway......woke up sunday morning when I heard the kids going through their Easter baskets in the living room and decided to get up and hide the eggs for their egg hunt (outside). My husband and I were outside hiding the eggs when I started to get "that feeling" so I dashed for the house where I PASSED OUT on the sofa (luckily on something soft).

When I opened my eyes my husband said he was going to take the kids out to hunt eggs while I rested (he video taped so I could watch it later). Well I took my midodrine so that hopefully I would be able to get up soon, but passed out again instead (after taking midodrine.....is that a big no-no??.

Woke up 2hrs later with a RAGING MIGRAINE and the right side of my face SWOLLEN!! I felt so dizzy, nauseous, and in pain that I was in bed ALL DAY (til 10pm) and missed the party AND MORE IMPORTANTLY I missed Easter with my husband and CHILDREN.

I feel horrible (mentally) and am angry at myself for not being able to "pull myself together" long enough to be there for my family.

Could the midodrine have caused the problem since I passed out after taking it? I took my BP after waking up and it wasnt high (at THAT time).

How does everyone ELSE deal with that "failure" feeling when you feel like you let others down?

I have been crying all day today and it still bothers me.

Laura

[joiedevivre516]

Hi, Laura!

I'm SO sorry you had such a difficult Easter. I'm sure (although I know this is not very much consolation) that your family understand and are just happy you're okay!

It seems like there are a lot of important life events/holidays that get stepped on by POTS; this disease is so hard to plan for! I think part of it is that the very act of working hard to get things ready wears us out and makes us even MORE likely to have a difficult time and experience symptoms.

I hope that you can watch the tape with your family and have a lovely post-Easter celebration! Maybe your husband could even recreate things for you and the kids? I'm sure the kids would LOVE that - a second egg hunt! And this way, you wouldn't have to do too much - you could even take a lawn chair outside or a chaise and relax but still participate.

I hope you feel much, much better, and stay happy! There are a lot of people who care about you!!

Kate

[morgan617]

I am so sorry Laura! I missed a lot of stuff when my kids were younger too.

You have no control over what your body is going to do. I never pick up my little grand daughter anymore, for fear I will pass out holding her and hurt her. This kills me, so I cuddle her in my lap all the time.

I guess we can kick and beat ourselves up mentally 24/7 for all the things we can't do anymore, but it sure wastes a lot of what precious little energy we have, doesn't it?

Do I ever feel like a failure? Oh yea, a lot. But then I think about how much it takes out me to feel this way. It's energy I could put to better use. Have another Easter egg hunt this week end. Just a special one with your family. No "social obligations" attached. They are little and will think it's great and you can still have a little Easter with them. Do you care it's not really Easter? Maybe. Will they? No way! Good luck! And stop beating yourself up! morgan

[gwen]

Hi! Felt great Thurs and Fri and Sat morn. Overdid it I guess, made a huge meal for sat night. I don't know but have felt terrible since.

Midodrine has a warning to not lie down for 4-5 hrs after taking it. It doesn't bother me, NMH, but if BP is high it is a bad idea. I try the recliner although sometimes that just doesn't work. Passing out kinda takes the choice out of it:-).

get some little things and put around the houseafter the wee ones are in bed. next day tell them you were cleaning and apparently they didn't do a very good job on Sunday. Or "Mrs Bunny" dropped some more stuff by. They will be more suprised and less stress. Try a carrot cake one night for a vegatable at dinner:-). Or jelly beans on thier plates. Both families!?! I barely did it with jus the 4 of us and then sun my mother-in-laws. The energy thing I wish I had the answer for!! I'm sorry it didn't turn out as expected but spread it out this week (it is holy week) a little each day and I know the kids won't object!! It may start a new tradition at your house!! You have a blessed husband. My husband told me I have a big butt. I've lost 27 lbs. I 'm now 2 sizes down on pants . 126 and 5'8". I do not have a big anything anymore. Back to the padded bras!!:-)my thoughts are with you. :-)

[lthomas521]

Hi Laura:

You had it together enough that there actually were baskets and eggs, etc. You probably even had a fresh videotape and charged-up batteries for the video camera. That's very high functioning for someone with POTS. I recommend taking pride in that accomplishment, rather than feeling guilty for getting sick. The only possible thing that you could reasonably feel guilty about is if you KNOWINGLY went beyond your limits. But it doesn't sound as if you did.

It sounds as if you were probably running on empty by Easter morning. I'll bet that the bending over and standing up involved in hiding the eggs probably did you in. At my house, we call that the "Japanese drinking bird maneuver." (http://www.sciencekit.com/category.asp_Q_c_E_755940) I find that it is particularly important to avoid extreme orthostatic stress like that when your condition is already marginal from being overly tired or emotionally stressed. My spouse has learned not to let me do stuff like that, and to reel me in when I'm overextending myself.

[Ernie]

Hi,

I don't really have a social life anymore because my body is totally unrealiable.

I don't plan much ahead of time, only doctors' appointments. Everybody that hangs around me knows and accept that I can cancel at the last minute or even faint during the event. If they don't like it then they are out of my life.

I have lots of experience fainting with the Proamatine. It does not bother me to be supine after (I can't sit or stand) because my blood vessels are too dilated. When I start to recuperate enough, about one hour later I have to slowly start to recline.

I can even swim with the Proamatine and it does not bother me at all. My doctor told me that it's because my BP is low so that' why I can handle being supine with it.

[MomtoGiuliana]

So sorry for your difficult holiday. Don't blame yourself!

I agree with lthomas--from my experience, I must avoid repetitive stooping or leaning over on days when I don't feel well (POTS-wise) or I will get worse. Also, I generally avoid much of this in the AM. Sometimes emotional stress (like preparing for a big family event!) can trigger symptoms in me--and I think that is a common thread with POTS as well.

Hope you are feeling better today!

Katherine

[Be Still]

Argh! That is so frustrating. I'm sorry it wrenched your heart to miss all of that fun and memories.

The grieving that goes with this condition is horrendous. It may help to list the stages of grief, they can come in any order (followed by some application to POTS):

Denial (Refusing to acknowledge our limitations)

Anger (Getting freaked about anything and everything, remember, this is a stage of grief)

Bargaining (Trying to find ways around it, like blaming ourselves, getting mad at ourselves, trying harder, etc.)

Sadness/Depression (Finally realizing the reality and being sad and, maybe, crying over it)

Acceptance (Moving on, knowing that we're doing our best under very trying conditions)

You know, I'd like to add a stage, and I guess I'll call it courageous Thriving (not there yet) where we realize that we are heroes considering what we are having to fight through. It takes incredible mental strength, emotional fortitude and heroic resilience to deal with the whims of this condition and keep smiling, trying, hoping. There is no instruction book for POTS.

Please, everyone, never underestimate the enormous thing you are all doing by living a with a disease you can, at times, wish was fatal! People with fatal diagnoses get so much more consideration, but we aren?t going to die from POTS. No, we have to LIVE with it. That takes way more courage, and is grossly undervalued in society.

So, Laura, you?re a hero, though you don?t feel like one. Dust off your cape, and try it again. (Kind of makes you think of that old TV show Greatest American Hero, he had trouble flying, was always running into things, and sort of ?just managing? to get somewhere. He was given a super hero suit, but didn?t get instructions, either.)

[Guest sonotech]

Thanks to everyone for the encouragement and great advice!

I really didnt think about all that bending over (Japanese drinking bird maneuver...ha ha thats funny, thanks for the laugh). I should have known better since mornings are so difficult anyway but I guess the excitement of the holiday caused some amnesia or something.

Bending over is particularly tough on me because I have had knee surgery on BOTH knees and have lost so much range of motion that I cant squat or bend my knees, so bending over is the only way I can reach (well...ALMOST reach) the ground.

I am still TRYING to get over the emotional part, but with everyones help I know it will get better.

LAURA

[morgan617]

Well said Be Still!!!!!!! morgan

[Guest Julia59]

Laura,

I just wanted to send you a big hug. Also, don't be hard on yourself. Chronic illness is a hard thing to deal with, learing the adjustments can be disheartening, but somehow we figure out a way to live with this, and still manage to have a little fun---

I do things way in advance sometimes and get backup help. If I need to prepare a meal---or cook a dish for a party, I do that in advance too. Otherwise, I may not be able to join in the fun.

It's because of you that they were able to hunt for easter eggs----

Keep your chin up---and be good to yourself.

Take care,

Julie ;0)

[lthomas521]

I have gone through those stages of grief numerous times, almost always during the course of a single doctor's appointment:

Denial I can't believe that this idiot can't figure out what's wrong with me and doesn't even believe that I'm sick.

Anger Plus, the idiot is rude!

Bargaining Doctor, could you please measure my blood volume, or at least put me on a tilt table, or even just take my pulse while I'm standing up? Pretty please?

Sadness/Depression I came all this way/paid all this money/waited so long for an appointment, etc., all for nothing? What a bummer!

Acceptance Okay, so this one's an idiot. But the law of averages suggests that the next one I see won't be quite this stupid.

Fortunately, I have smart doctors now, so I haven't had any grief lately.

[Ernie]

Hi Laurie,

I enjoyed reading your answer. I go through the same process with idiot doctors.

[mtkim]

The first time that POTS ever really put me completely down was between November and December. I don't even remember much of that holiday season. I know that I was spending between 16 and 18 hours a day in bed and going back and forth to the ER for fluids. I do know I had a head CT on New Years Eve of that year. The one thing that I do remember was that every night at about 10:00 or 11:00 o'clock I would have a short period of time where I would almost feel human and could even eat. Everyone would come up and sit on the bed with me and just talk. I don't think you ever get over that "failure feeling", but I can tell you that the people who know us and love us never look at us as failures and that is what makes the good days so special. I guess that is my advice. Make every good day special and those are the days that your kids will remember, even if it means sitting at the dinner table, eating McDonald's and listening to the events of their day.

You are NOT a failure. You sound like a wonderful Mother who really cares about her family.

Take care,

Kim

[Guest sonotech]

Thanks again to you all!

I really am starting to feel better emotionally. It helps me so much to get advice and words of wisdom from people who have actually experienced similar things and who can truly understand. I find it frustrating when my family and friends (ok, 1 friend, the ONLY one who hasn't abandoned me due to this illness) try to tell you how you can do things differenly to help you feel better or say that they "understand" what you are going through when they CAN'T.

I value all of the different personalities and opinions on this site and think that is what we all need...diverse and honest responses!

Laura

[jclair]

Giving you a hug..I know how you feel.. The whole crowd thing gets to me at times, especially if i know its coming. I took midodrine before..I have to say that medication was the worse for me.. It dropped my bp too low, (I have orthostatic hypertension). But I know from reading Dr Grubb's information that it helps some..

I feel for you.. I wish someone could wave a wand and take this illness away..

Thank God for the boards..and so many people who understand..

Jan