How do I get through Christmas?

Our tradition, which I always look forward to, is to have everyone here on Christmas Eve for a German dinner and then open the presents here that we give to them.  Then we go over the same night and watch the grandkids open their presents, as well as getting our presents from them.  It turns into a pretty long night and it has always been a blast!  Finally, we go home late and go back to our daughter's and have Christmas afternoon dinner with her, our son-in-law and the kids.  Two days of hectic fun that we all look forward to and that I think of as one of the best times of the year.

Here is the catch: Last evening we had them over to our house for a small dinner and dessert and to celebrate the 4th Sunday of Advent.  Only lasted from 6-9 pm, three hours.  By the time they left at 9 I was in sad shape.  I was having trouble just sitting at the table, shaking, exhausted, weak and all the other symptoms that this autonomic dysfunction or failure or whatever has been causing me since this summer, all that I have listed earlier.  I am wondering how I am going to get through all our Christmas Eve and Christmas day activities if I can't even handle 3 hours in my own house.  Does everyone go through this?  And how do you deal with it?  My wife says I'll just have to go lay down once in a while to rest.

I finally, and pretty quickly, actually, got a referral from the VA hospital to see an outside neurologist for a consult about autonomic failure.  So, at least I am still working on it.

Just venting.  Thanks for listening.

[beema36]

Heiferly, Great ideas! Thanks!
Beema

[beema36]

Oh yes I go through this. It's terrible and I get so.frustrated. I don't have any answers really. I just try to push through and then I suffer bigtime for doing that. It's just that family times so important I have to try. I have lost so much of myself I don't want to lose this. Hopefully some of.these wise people here can give u better advice.
Just try to have a Merry Christmas and enjoy your family as best u can.
Beema

[evo123]

You sound like you have a beautiful and very close family around you and from this I would take the comfort that however this effects you, they will understand.  I totally relate to struggling to try and 'keep up' and on many occasions having to miss out, but my advice to you would be pace yourself, listen to your body and keep up with the basics - plenty of water, salt etc.  

I try and deal with ocasions like this by sitting as much as I can, and if possible, as your wife has said, lay down.  At one birthday celebration for my daughter, it was her 7th birthday, I invited some of her friends and family around.  I spent most of the time horizontal (what a party host!) I was in the midst of severe OI and massive chest pain on even attempting to sit up - but you know my children and my family where just happy I was there, they are sad to see me like that but take comfort from the fact that I was with them to make future memories.  On my better days we have a little giggle! My children are now 2, 4 and 8 years, I have to make this 'light' for them.

I really hope that you manage to feel as well as you can throughout the festivities and have a lovely time.

[Richard1030]

Thanks for the encouragement.  I know that my family is great and will be understanding and we will get through this.  I saw my primary care doc today and she suggested that I might want to consider the Vanderbilt University Hospital Neurology Clinic in Nashville, TN.  She seems to think that the VA will approve going there to see them, since they do specialize in dysautonomia.

Meanwhile, I stumble along.  And I mean that literally.

[Heiferly]

It is okay to "push yourself" a little when something important to you like this comes up.  These are the times when I pull out all the stops as far as coping mechanisms go, and know going into it that I will be "out of commission" for days (maybe even a week or weeks) afterward to "pay" for pushing myself like that.  So get yourself in that mindset, and start listing ALL the ways that you can maximize your coping throughout the festivities.

The key to the whole thing is getting and maintaining bloodflow to your heart, lungs, and brain.  But your greedy legs and abdominal bed are going to try to steal it every chance they get, and if you lift your arms over your head, this will pinch off the vessels that return blood to your heart from those limbs, effectively stealing that blood away too.  So here's your plan of attack:

Salt and liquids.  Oh, you've heard it before and you'll hear it again.  You can increase your total blood volume by increasing your salt and water intake.  If your total blood volume is greater, then you have more blood left for your needy heart/lungs/brain when your greedy legs/abdomen/arms steal some away!  Accept that you will be racing to the restroom every 2 seconds and drink like a fish!!  If you don't have any gigantic 32 oz mugs, I *highly* recommend getting one to drink your water from.  That's roughly 1 L and psychologically it's much easier to trick yourself into drinking 4+ L a day of water if each cup is a L than if it takes 4 cups just to make 1 L.

Don't let your feet touch the floor unless you are WALKING on them!!  Only use a footstool if it is the footstool to beat all footstools and is tall enough to elevate your legs up so that your hips are at a 90 degree angle; otherwise, find a chair the same height as the one you're sitting on to put your feet on or just put your legs up on the couch.  I've developed the habit of sitting cross-legged ("Indian style") all the time to keep the blood from pooling in my legs, but I have to recommend against this, because I'm now developing joint pain in my knees and hips that we're fairly certain is secondary to such prolonged time in this posture day after day for years.  It's actually very bad for your joints, so do as I say, not as I do!  

Whenever possible, but at least once every few hours, spend some time lying down fully.  During this time, use pillows stacked under your lower legs/feet to elevate them above the level of your heart (so if your head gets one pillow, your legs get three!) ... this will help "drain" some of that pooled blood back where you need it.  

If you have compression stockings, now is the time to wear them!!  At least it's winter, so if you're in a cooler region of the country they shouldn't be miserably hot to wear ...

Move those feet!  While you've got those legs elevated, you can point and flex your toes to work your calf muscles and help stimulate venous return of blood to the heart.

Stay away from the fire.  Chestnuts roasting on an open fire?  Not for us!!  If there's a fire burning in the fireplace, keep your distance.  Close proximity to that kind of heat will dilate the blood vessels, making at all the easier for our blood to pool.  If you think you're overheating, speak up.  Our families would rather make small adjustments and have us near than enjoy a crackling fire without us (hopefully)!

Avoid the temptation to eat amounts of food, types of food, or meals at times of day that are atypical for you.  Almost all of us are very sensitive to dietary changes.  Many get blood pressure fluctuations around mealtimes, and these can be more severe with larger meals or with meals that have more of certain food groups (I'm looking at you, carbs!) so unfortunately we have to be mindful of this even at holiday celebrations.  That doesn't mean we can't enjoy our favorite holiday foods, but we might have to limit ourselves to smaller portions, or break it into two smaller meals rather than eating one big meal like everyone else.  Plan in advance what you think your body can handle and STICK TO THE PLAN.  (Do as I say, not as I do, hahaha.)  Also, remember which of your meds need to be taken at certain times and with or without food and try to plan accordingly.  If you need to plan snacks and bring those along so as not to derail your med schedule, do it ... your family will understand!

There is no shame in napping!  This is where your babies and grandbabies TRULY become gifts!!!  Offer to help put them down for a nap!  Snuggle up with them in a quiet room away from the hustle and chaos and take a quick nap with them once you get them settled down!!  Now THAT'S quality time with the kids!  Trust me, everyone will be thankful that the little one went down for a nap and no one will gripe that you were missing for a half hour or an hour.  Plus, you will be much better off for it.  (This might work to get pets out of the way as well if there are pets that are calm enough that they will lie down with you and go to sleep.  I know that can go either way, depending on the temperament of the dog/cat.  Please do not attempt this with fish.  Little Timmy will be sad to hear that you removed Goldie from the tank for "naptime.")

Well, that's all I've got for now.  I hope you don't mind my sense of humor mixed in there ... we don't know each other well yet, so I hope it won't offend you.  It's just how I naturally end up writing, especially when I have long posts ... have to throw stuff in there to keep myself awake (I have narcolepsy on top of the dysautonomia).  

Happy holidays,
Heiferly.

[beema36]

Heiferly, Great ideas! Thanks!
Beema

[Richard1030]

I loved it!  And there is no way your sense of humor could be offensive.  You gave me a lot of good ideas, some that reinforce things I am already doing.  I keep a 2 liter jug of water next to my recliner and drink throughout the day.  My grandkids are a bit old to nap with (almost 9 and 13) but we have 2 dogs and 2 cats, one of each has decided I am theirs and when I lay down they are sure to show up to keep me company.

I'll have to reread your post from time to time.  I've already read it through 3 times and it is great.  I'll keep reading it just for the humor itself.

Thanks a lot and have a great holiday season.

[mtgardner]

I would not be able to sit at the table area for hours unless my feet were elevated so might say something after dinner like "Let's retire to the living room."  Then I would prop my feet up on my favorite footstool.  If it is going to be a long affair and you are tired reserve the sofa for yourself and lie down stating you want to enjoy the activities but are a bit tired.  

Another option would be to request all be divided into three days or even more so that you have longer between events.  Others might enjoy that too. You could always query everyone.  

It all sounds very festive and I think your family would be willing to modify things so they work for all.  By the way Happy Holidays!  Marie

[Heiferly]

Ha!  I just saw that you're in GA!!  I guess you don't get quite the same symptom relief from heat in the winter that we do up here in the snow belt (I'm in OH) ... but I have to say I'm a wee bit jealous that you're not freeeeezing your tokhes off every time you step outside this time of year!  It's so hard to keep fingers and toes warm in the winter with the weird circulatory stuff we dysautonomia folks have going on!!  I guess no matter where you are, there are pluses and minuses.

I hope everyone is getting along well today.  I'm taking it easy and just visiting with one uncle today (in pajamas, no less!  It's one of *those* days!) so I can save my energy for tomorrow, New Year's, and then "Xmas in January" with my folks/sis/sis's hubby.  

:-)  Heiferly.