Social Gatherings

[gertie]

I know we've discussed this before. I keep trying to be involved with people so I will have a feeling of be semi normal but it just isn't working for me. It had been months since I had been to be in a social gathering. So I accept an invitation/reunion & when I start out I feel like my brain will work enough to carry on a conversation, but the more people I come in contact with & try to think of something to talk about the worse I feel. The more perfume & scents of their clothes I absorbed the more I felt like I was going to pass out in the floor. I shouldn't say this because everyone here will think I'm nuts, but my DH actually agreed with me on this. One of the cakes tasted like laundry det smells. I'm assuming they had stored them in their laundry room prior to the event. It's been several days & I haven't recovered yet. I've had a seizure & migraine since then. There is no de-sensitizing myself to these

environmental toxins because I've tried everything, even exposing myself to perfume.

How do you gracefully decline when people are nice enough to include you? If you don't go they think you don't care & they certainly don't understand the illness. Sorry so long. Thanks.

[kmichaelson]

Hi Alicia, I'm sorry you're having such a difficult time. I've been very isolated lately as well for the same reasons you mention. I actually couldn't go to my family's Thanksgiving last week because I was so sick, and I just can't get out and socialize very often because I get so dizzy and it's exhausting. Like you said, it's even hard to make conversation sometimes--I feel like my brain is moving in slow motion compared to how I used to feel. However, when I am able to do something social, even if it's hard and I'm tired afterwards, it makes me feel so much better emotionally.

I'm fortunate that I'm not affected by smells and chemicals the way you are. This might be a dumb suggestion, but I wonder if you'd have an easier time if you were somewhere where you could get fresh air more easily. For instance, maybe you would feel better if you could socialize in an outdoor setting where the air isn't being recirculated, or if you are indoors, maybe you could go outside for fresh air occasionally to refresh yourself. I don't know if any of these would help, but I'm just trying to think of things because I know how you feel.

Like you said, it's hard to explain to people WHY I don't feel well enough to do things because this isn't an illness most people understand. Also, I often accept an invitation to do something, and then I end up not feeling well enough to actually do it because the way I'll feel is so unpredictable. I'm sorry I don't have better advice, but this is something I'm still struggling with as well. At least we can talk on this forum to people who understand--that means a lot to me these days.

[lgtaylor100]

I have a bridal shower to go to next week. The bride is my best friend's daughter. I am planning on going but need some strategies to get through it and perhaps enjoy it. The timing is also difficult because it starts at noon and I don't start feeling even a little bit better until after 3. Any suggestions?

[rubytuesday]

If I am invited to a gathering, I ask the host/hostess if there might be somewhere I could lie down if need be (not that I am planning to but in case). I get migraines and asthma attacks from spicey, strong perfumes and colognes and cigarette smoke. And if there are pets in the house, I tell them that I am so sorry that I will not be able to attend due to health issues (if family--they know that pets, my allergies and chronic sinusitis and migraines spell disaster). Nephew and then niece both got married last fall. For one, I had to drive about 2 hours to the church (warm in church) and then it was hot outside, trying to stand, waiting for bride/groom to exit. The reception was held in something like a very big pole barn and while I had been hungry, I was cold in there and then nauseous with the smell of all the foods on the buffet. I stayed and ate but I'm usually one of the first to leave. The other's was an outdoor wedding and DM wore perfume (me allergic to bees, and all the flowers and that raised my stress level a bit). It was also about an hour's drive to a place I didn't know where I was going either. Then the reception was what was like in a big lodge. The metal chairs are hard on me to sit with hip injury. The legs swell with the driving and sitting. It was really hot and I ate light (nausea) and left 'early' as being in country at dusk with deer, I had the added stress of that. DH never goes to my family's big events so that added more upset. With his family reunions, I just go by whether I'm having a good day or a bad day and how the weather is.

Mostly in circumstances, I will say that I will really try, but I can't really plan ahead as I just don't know what the BP will be doing that day. I don't think I've ever offended anyone. I attend a church meeting every other month and I really have to drag myself to it because it takes me til mid-morning/noon to get going and then after the middle of the afternoon, I start to lose the momentum and my cognition seems worse and my body is ready for rest--not the shock of going out like a cold rainy night that we're having now, already having fluid retention that will build as I sit and a bad hip that will be throbbing, and then trying to warm myself up really good when I get home because I cannot fall asleep when I am so cold and my hands and feet already feel like ice. I make myself do something though. If I'm really bad and DH asks me out for coffee w/ friends, I decline but if I'm not quite as bad I will drag myself out to go.

[gertie]

Thanks everyone. dizzyblonde, getting outdoors in the fresh air even if for only a moment would be good.

lgail, I wish I had an answer for you. Maybe if you stayed seated with you feet up as much as possible. If you're

sensitive to perfumes you might ask that the other guest refrain from wearing any.

rubytuesday, I can see you & I have a lot of the same problems. I also make myself do things I know will make me sick.

When I ask my family to not wear strong fragrances I'm totally ignored. I don't like to bring attention to myself so I

stopped mentioning it.