How to handle parties/social events when you HAVE to go

hamsterman

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I've been doing everything I can to minimize going to parties the last year. I know with certainty, that the PEM fallout from one party can ruin me for weeks.... even worse than if I had to jog a couple blocks. I used to think if I never stand up during the party, I'd be ok, but apparently not.... its just the non-stop talking.

There are certain events that I just can't skip... (birthdays, major holidays, etc). There is one coming this weekend. Its 3-4 hours. If anyone here has a method of how to deal with these, let me know.

I was thinking maybe hide in the bathroom after every 60-90 minutes of socializing for like 20 minutes. But not sure if that will work.
 

Bansaw

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I've been doing everything I can to minimize going to parties ...
Totally sympathise. It takes energy for me to be extrovert.
What I do is simple. I turn up, make sure everyone sees my face, then indiscreetly, leave pretty quickly. That way I turn up, honour the person whose birthday it is, and everyone knows at least you made the effort to come along. Generally, most people will not know when you left, but they will remember seeing you there.
 
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One I get stimulated by noise (is what crashes me the most) I wear earplugs that muffle the noise. I only hear when somebody address me directly.
2) I keep a pillow, blanket, blackout mask, headphones and an ambient app for white noise in the cell. Then I take naps (I do turn on the car for AC or heater).
3) wear compression stomach high.
4) Oral IVs (if in US I use pedialyte).
5) I up the Mito supplements: COQ10, Lcartinine, D-ribose.....
6) That night schedule extra sleep the day before and days afterwards (14h on).
 

rosie26

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I've found a meal with chick peas gives me a bit more staying power physically than I would have had otherwise. I would also take a multivitamin and B complex the day before. Drink plenty of water. The loud music and talking would be a major problem for me though. It crashes me very quickly.

Have you got a stretcher armchair that you could take, if the party is outside? You could set it in the lowest recliner position.

Can you park your car in a spot where it is not too close to the house? You could go and sit or lie down a few times and close your eyes.
 
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helen1

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Resting in your car is a good idea so that your wife and kids can stay longer. If you have a van you can put an airbed in the back. I survived this past weekend's family wedding by lying on the airbed on the trip there and back. Also by lying down between the ceremony and the reception. You could pop out early, lie down in the car with pillow, blanket, etc and wait for them to come when they're ready.

Another thing I've done at my parents, my inlaws and at a friends house is ask if I can go lie down in a bedroom when I feel symptoms coming on and it's too early to leave - say, we haven't sat down to dinner yet. They've been very gracious about letting me do that and it's very helpful. That's better than resting in the car I find.

@hamsterman
 

Thinktank

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I plain old just don't go to these things. Anyone in your life who would want you to go while knowing how ill it will make you isn't worth having their feelings considered.
Exactly. Thankfully my family and girlfriend are very caring and considerate, they understand my struggle and never force me to attend anything. Others.... well I've had to cut ties with most.
 

hamsterman

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Have you got a stretcher armchair that you could take, if the party is outside? You could set it in the lowest recliner position.

Can you park your car in a spot where it is not too close to the house? You could go and sit or lie down a few times and close your eyes.
I try to find a couch that has an armrest so I can rest my chin on my palm whenever I need to sit. It feels like the least energy consuming position for me, not sure why. I try to stay inside at all costs... sunlight magnifies exhaustion for me... by a lot. But a recliner sounds nice if the opportunity presents itself.
 

hamsterman

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I don't go to most anymore, but I have hidden in the bathroom many times.

I would try to avoid socializing with 1 other person where you're expected to talk a lot. I always had someone with me who could do a lot of the talking. That way I could nod and smile and conserve my energy.
That sounds smart. It sounds to me like the big drain in parties are the situations where you have to keep a conversation going. So maybe if I try to limit these.... to maybe 15 minutes or so... that might help things.
 

hamsterman

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Resting in your car is a good idea so that your wife and kids can stay longer. If you have a van you can put an airbed in the back. I survived this past weekend's family wedding by lying on the airbed on the trip there and back. Also by lying down between the ceremony and the reception. You could pop out early, lie down in the car with pillow, blanket, etc and wait for them to come when they're ready.

Another thing I've done at my parents, my inlaws and at a friends house is ask if I can go lie down in a bedroom when I feel symptoms coming on and it's too early to leave - say, we haven't sat down to dinner yet. They've been very gracious about letting me do that and it's very helpful. That's better than resting in the car I find.
Yes, I've been doing that.... but things fell apart the last party I went to... when that room became occupied as the party got to large. I wish I had gone back to the car... but instead I tried to grin and bear it... that was a huge mistake. I guess live and learn.
 

u&iraok

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I do the things the others mention:
  • try and get dressed up and look nice so you don't feel worse about it
  • Get dropped off at the door so you don't have to walk much
  • rest before and after the event
  • show up and leave shortly after unless you start having fun then you need someone to make you leave (my husband)
  • wear earplugs
  • eat my healthy food beforehand that I'm used to so no shocks to system or unhealthy food and pretend to eat the party food or only eat a little. No alcohol!
  • sit at the table in the corner or furthest from the dj, music or the most action and/or sit in a chair facing the wall
  • have a pillow in the car to go out and rest. Park close to avoid a long walk. They won't miss you if you're not gone too long.
 

hamsterman

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Thanks for all your suggestions. Unfortunately.... Party 1, Me 0. I'm in a full-fledged PEM at the moment, and Im sure it'll last 3 days... it always does.

I wasn't able to rest enough before-hand... but did as many breaks as possible, and left early. I am trying to rest as much as I can now to get better.

On the positive side, I also found this old thread with some more great suggestions:
http://forums.phoenixrising.me/inde...-get-togethers-with-family-and-friends.32814/

Will try to work on all of this, I've got father's day to deal with shortly. There are some nice mental tricks that might help.
 

hamsterman

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Just an update here. I finally found a way to stop the post-party PEM :).... but its definitely not for everyone. A megadose of prednisone (35mg) around 4 hours before the party.

I've tried it 2x, and its worked flawlessly both times. Theres no way its a coincidence... before this... I havent had a party without PEM for years. I'm still staying away from parties in general, but having this tool at my disposal is really great. I hope it continues to work.

But I hesitate to recommend it to everyone... especially if you get post prednisone PEM after 1 day. And of course... staying on prednisone for more than a day is a BIG no-no... This is a 'once in a while' fix.