Social Situations

[gertie]

How do you handle social situations? The last time I went to a funeral after about an hour I began to feel like if I stood up I would pass out. I also have inner problems & all the noise of people talking makes it worse. All the perfumes make me ill so always a migraine after it's over. Even after a shower I can still smell the odors. I feel like I'm on autonomic nervous system overload or something. I was sick for several days after.

I have another funeral I'm to attend today & I dread it, not sure if I'm going. My DH just doesn't get it.

I used to be a very sociable person but not anymore. Thanks.

[sue1234]

Totally understand. I had a rare break from the social issues last winter, thankfully, as my son got married. I was able to enjoy the whole thing(sitting!). But, now I am back to being very environment-sensitive to noises, temps, smells, etc., also. I just don't go to anything is how I handle it, but my husband understands so I don't feel pressured.

Just want you to know there are us that understand!

[gertie]

Thanks for your reply. It is a stressful situation & being pressured doesn't help.

[Becia]

I too, have issues in social situations, but lately, I haven't been in the situations completely alone, but with people who know my situation, and basically look out for me. They know when we get to church, I prefer to lay on the couch in the youth room and listen to the first service, because the volumn of the praise band is too much for me to handle, and the array of perfumes around me make me sicker. They know I have ear plugs for when noises get to be too much, and I frequently close my eyes or wear my sunglasses if the lights bother me. They know they need to warn me if they are suddenly turning lights on as well, and that action in movies surge me, thus causing me to pass out.

The few times I go out without one of them with me usually ends badly, or with them educating the people in how to handle me and my outs. I am in a wheelchair outsid of the house and in, and that's something we do for my safety, since the least bit of being up causes me to surge, and pass out.

An idea would be to try and get to the funeral area early, and see if you can scope out a place that is quiet and out of the flow of traffic, so if you do get overwhelmed, you've got a place to escape, so to speak. Take a cool washcloth in a bag with you, and if you start to surge or get overwhelmed, dab it on the back of your neck, escape to your quiet place, and recooperate before you head back out again. Sometimes it just takes time for people around you to understand what you're going though, but they eventually will understand. Just takes more time for others.

[kayjay]

This is a symptom that is much better for me. I don't take them now and they aren't for everyone, but I think Klonopin was helpful.

I have problems with smells in general. Laundry soaps, candles, unwashed hair, BO, cow manure, cooking smells. If there is a scent you can tolerate, I would consider having that smell on a scarf or the crook of your elbow. Last year I went to a baseball game with my family, the smells were almost unbearable. I had my good smelling scarf with a comforting scent. I made me feel less ill from the sausage sandwiches that were being consumed in the row ahead. Life smells are everywhere so I need to have something with me that I like the scent of if that makes sense. I often wish I couldn't smell at all

I also have no problem at this point with wearing earplugs. My husband gets me little foam earplugs. We went to an outdoor concert this summer and I'm pretty sure I was the only one with earplugs. It really helped. I would absolutely wear them to church.

As for the overload, I have a very quiet life and feel like I get a break at home.

[gertie]

Thanks everyone for your replies. I made it through without any major incidents. I did use foam ear plugs but the music was still too loud. It's impossible to avoid perfume so I'm paying the price today. I stayed away from the crowd without looking to anti social. I try to go by the saying, "fake it until you make it".

I'm sorry so many of you have to miss out on what I call a normal life. Things that we should enjoy become a terrible burden for us.

[Cala]

I think the social situation is where a sense of humor saves me a lot of grief. That and having some very thoughtful quick thinking and twisted minded friends. Things have gotten better over the years since I've figured out how this stuff affects me. My friends have learned.

The last funeral I attended I had to sit in the receiving line (old school funeral) and accept the condolences of the entire place of handshakes as they exited and my friend, bless her heart, leaned over to me when I thought I was truly about to pass out and whispered, "just think how many of those old men have been to the bathroom and not washed their hands", yeah...well that sure kept me from passing out... so you can see, sick humor has it's place as long as it's whispered ha ha ha

Several years ago, before I was diagnosed with anything other than severe migraines, my friends decided to get me out of the house by taking me to a haunted house. (So you see this coming...) well I'm a level headed person and I knew they were trying on help and I "felt" alright so I thought "what the heck"

Keep also in mind I had only been to a general doctor for my condition so he had never discussed triggers with me and I was relatively young and new to this condition and thought I could handle anything. Nor had I heard anything can't an adrenaline surge or what it could do LOL

We are at the entrance, it's cold, I'm starting to feel the effects of that cold and I'm getting uncomfortable. By us is a portapotty that really smells horrible and it's getting worse by the minute. I'm trying to hang in there right? No one else seems to be bothered so I pretend to be having a jolly good time.

By the time we get into the building I'm seeing auras around things and sounds are starting to distort so I should have backed out then but I kept pushing myself. Smoke machines and banging sound like cannons. Although up until this point nothing has really "scared" me yet.

Then it happens LOL this thing swings out on a pole, not even sure what it was exactly. IT was furry and it screamed bloody murder and it was supposed to go past us but it didn't make it. I caught it and ripped it off it's rope or what ever moored it to the ceiling. My friends were cross between laughter and awe.

The guide was seriously distressed at this. I however was more than that...I was beyond freaked out. I again continued on and went up a ladder into a room and got hit full blast in the eyes with a led strobe light. And this was the last thing I remembered for a long time.

Triggers, strobes? Pots? Ladder? Oh I had it all that night...took me a week to get over that one.

I woke up sitting in a rocking chair with Freddy Krueger standing beside me keeping an eye on me. (Yet another shock..will this night ever end) my well meaning friends wanted someone to watch over me while they finished the haunt...they did catch me and carried me out of there in one piece LOL

But I had to share my story. It's worth a few laughs if nothing else.

[Hoshistorm]

Becia, I too am in a wheelchair inside and outside of the house. It has helped a lot with the passing out.

I also struggle with being out in public, especially with being around people who do not know me and do not understand what is going on. I prefer to stay home or go places with a small group of people who know me.

[Becia]

Oh my Cala!!!! I busted out laughing at your story... You got more guts than I do going to places like that. I would even make the trip down the road to a haunted house.

My funny story happened when they thought I broke my hip right after my diagnosis. It had been maybe a week since I was diagnosed, and I was trying to come out of the bathroom, passed out, and woke up and couldn't move. That is typical of a bad out for me, so when my friends got home, they did they usual "let's try to move her up to bed," routine, and yeah, I screamed bloody murder. Called an ambulance after about 30 minutes of me trying to move my leg, but not being able to, and got these four totally hot dudes. I of course, was in my pjs, not wearing underwear, and the pain kept making me pass out. I speak a couple different languages, sign language being my fluent one, but I also speak enough Arabic to be dangerous. I came to as they were trying to move me, and started cursing in Arabic. Everyone was like "what tha...!?". I then also flipped a couple of them off. I wasn't very nice, but it had everyone laughing because most people would just curse in a language everyone knows, nope, leave it to me to find some obscure way of telling them off.

My friends also noted they had to neck brace me in case of injury, and that there is a setting on the brace called "neck less". We found that hilarious after I got a shot of pain meds, lol.

Social situations I too like to met with humor if I can, but some days are easier than others. I carry my kit around that has my survival stuff that helps me, but even then sometimes it's still a rough go. I had too many triggers while out today, so I'm sure I'm paying tomorrow for everything, but at least I managed to laugh a couple times, even if I did pass out.

[Cala]

I probably need a wheelchair sometimes but to be honest I'm truly terrified of what my friends would do to me if I did LOL

I don't speak other languages and I'd be a fright if I did ha ha ha I wish I'd been a fly on the wall during that episode. Not to witness the pain part but the look on their faces when you started hurling that! You must have sounded like a demon! ROFLMAO

But in all seriousness, I do very much avoid most social things and have become quite the hermit. Or aka crazy cat lady because I prefer staying home with my kitties to risking all the things that can go wrong out and about among other people.

It does seem that everything can and will become a trigger, given enough time. Smells, sounds, lights even temperature shifts. Emotional up and Downs do it too, traffic, store lines etc.

I think I've been out twice this year, aside from Dr visits. Both were just out to eat and neither was comfortable. I'd much prefer hearing all about the party afterwards or reading about it on Facebook any day than actually going :-)

[Becia]

I guess I'm kinda a rebel. I make myself leave the house at least twice a week, if not three. I attend church, surrounded by people who mostly understand, or I stay to myself in the youth room and listen from there. On Wednesdays, we have a church dinner, and I attend a class with a guy I live with leading it, so I've got security there, and he knows where I go when I feel like I need to escape. Being a musician, I also still try to attend band practice on Thursdays, using my ear plugs, going to the youth room if needed, and I stay to listen to thy choir. Things like that I hope I can get back into someday soon, but being a drummer, I know I don't have the endurance for it all right now, and I do good just trying to stay conscious. On those days, we also do grocery shopping, any other errands I may need, etc.

I also like going to the local band competitions to watch the marching bands, but those outings are done very infrequently right now, just because I'm sensitive, but I at least want to try them, and my friends give me that chance.

I've been given the option of not going places many times, but I don't want to feel like I'm giving up in my mind. I had been a homebody all my life, and just the past few years gotten the nerve to get out more, and then here comes pots taking it away. I try to use my best judgement, and have an escape plan in place if needed.

[Becia]

And we still laugh about the Arabic thing to this day... All I can say is maybe I thought I didn't want to offend anyone by cursing outloud where the kids could hear or whatever, but to be half out of it, and that's what comes out of my mouth, was indeed a venture!

[Darlene72]

I am finding these discussions more and more helpful with each one! Cala, I had no idea that the adrenaline was part of this too. This is the illness of many hats!

I was just telling someone that I hate not being able to do or say anything that may cause the slightest bit of a confrontation without the "fight or flight" tingles and trembling throughout my entire body. I pass out also (even crashed my car into a telephone poll) and sometimes I get so dazed I feel like I'm dreaming. WOW!

[Cala]

I tried attending church and it didn't work well for me. I'm a member of a very large church and bless them, they are all very helpful friendly social loving....yeah...you can imagine what happens LOL

They do however record the sermons every Sunday and I can watch them televised from the safety of home. I know it's not the same but it's safer for me :-)

You ARE a rebel Becia, my son was in band in college and I tried doing some of the shows and such but I couldn't handle it. Even with earplugs. You need a medal of honor for keeping that as a part of your life. My dog ears were my undoing LOL

However I have no problems listening to music on my headphones which I don't fully understand. I'm grateful though. I couldn't live without my music...

And I have Rosetta stone, I looked up Arabic but it won't teach me curse words /sulk

And Darlene, those adrenaline rushes are like warning shots to me LOL I know when I get one that disaster is looming.

If I'm driving and someone "almost" runs over me and scares me, I pull over and stop driving as soon as possible. If I'm shopping and a child almost falls out of a lady's shopping cart and terrifies me, I find a place to sit, pronto.

I know it's like the coming attraction LOL and it's usually fairly soon so I try to chill out, snack on something and try to head it off. Doesn't always work but it sure beats telephone pole tango, which sounds awful by the way....

Yes even losing my temper at the return counter can bring it on at times LOL thus I try to avoid confrontation as well