Sensory overload and the holidays - help!

[Seadragon]

Hi,

Don't know if this is the right place to post this.

We are having family visit for Christmas Day this year.

I have severe sensory overload (esp. rapid mental fatigue during conversation and people talking over each other quickly resulting in exhaustion/confusion/mental PEM) and I am worried how to cope with it all especially as my mother in law is very excitable and will be at her loudest and most talkative on Christmas Day - yikes.

It will be the first Christmas for three years that I have spent with family and whilst I am looking forward to it being much nicer than last year (when I was in the middle of a crisis caused by benzo withdrawal) I am worried that I might crash in the middle of the day.

My MIL has offered to do the cooking which is really kind (although I feel embarrassed that I can't do it myself) but the thought of the whole day being long, full of conversation, gifts etc is quite daunting.

Any advice on how to cope with the day? My family understand the physical limits of CFS/ME but they struggle to understand the sensory overload part which is a really big issue for me in recent years. They don't understand why or how conversation quickly exhausts me.

Thanks,

Esperanza x

 

[xchocoholic]

Hi Esperanza,

I know just what you mean. Not that I've tried this yet but since you're not cooking or driving,
how about taking something to calm you. I would think theanine would work. Maybe a children's Benadryl ?
Chamomile tea ? Out of those, theanine would work best for me. Or I might try a tiny bit of Klonopin
since I react well to it. I have to take it daily for myoclonus anyways.

A glass of wine or spiked eggnog or eating anything with a touch of alcohol might help. Ever had homemade bourbon
balls ? Yum ... Unless you're severely intolerant, imho one day shouldn't hurt. I wouldn't do this if
you're still really sick 24/7 tho.

Otherwise I can't see anyway around not feeling overstimulated during a holiday event like this. I've tried
resting in another room but curiousity got the best of me and I couldn't stay away. I'll be trying some
of these this year too. I may go with Bourbon balls. Lol ..

Tc .. X

 

[maddietod]

Is there anybody coming who could be your buddy? Somebody who understands this illness better than the others, and could watch you and run interference?

Also, you might be able to plan the day with breaks, and let everybody know in advance that you'll be needing time alone. You could fully retreat to your room every hour or two, and plan the day's activities in chunks that make it seem natural. Or if you have a room with glass doors you could close, but see through, that could be your private space. That's what I did at Thanksgiving........everybody knows not to bother me when I'm on "my" couch.

I went to a friend's birthday dinner with 15 people (I expected 5) in a huge and noisy restaurant. I lasted 2 hours. I think you're smart to plan for this Christmas adventure so you can have good times throughout the day.

I've also noticed something. I've figured out how to say what's going on with me without sounding whiny or angry. At the party I just said "I just got really tired." After a year of such comments, my friends understand this as my normal pattern, and they appreciate that I make the effort - which is so clearly exhausting for me - to spend time with them. So what's worked is not trying to explain this illness.......how could anybody possibly understand?........but just being simple and clear about how I feel in the moment. Suddenly they're all grateful, instead of sort-of irritated and confused.

Good luck!

Madie

 

[Michael]

Madie,
Very good suggestions!
I have learned that MOST folks do not WISH to understand our situation, and yet they can easily grasp:
"I am suddenly very tired and am going to take some time alone now. Thanks."

I also find great relief from taking theanine.
Many days I take 400 mg three times daily. I have dramatically better moods as a result.

 

[maddietod]

With my family, there's a stubborn refusal to learn anything about my relationship with my illness. But with my friends, they just can't grasp what it's like. And I understand that. They have no internal referents for my experiences, so descriptions just make their eyes glaze over.

But lots of people have had, say, a flu, and suddenly felt so bad they run for the bathroom, or have to sit down, or go home. So I use phrases that match experiences they're likely to have had. And if their inner description of my illness is "Oh, she's tired all the time," I don't care any more. It's enough that they know I love them so much that I get out to be with them, even though it's hard. Because even that is a victory of communication, given that most people GET energy from going out with friends.

 

[Dreambirdie]

In these kind of situations I usually accept that I am going to get whacked with some serious fatigue afterwards. It's just par for the course. There are some things though, that have proven to be helpful for me.

I find that if make a late entrance and have my partner tell people in advance "SHE IS RESTING and WILL BE DOWN IN A MOMENT," that kind of helps set the tone and remind people how ill I am. Excusing myself to rest is also a good thing to do. There was one dinner where I actually set up a bed for myself in the living room, so I was able to lay down in the midst of the activity. At first I thought it would feel very weird, but people adjusted to it really well, much better than I expected.

When I am going to be dealing with a lot of noise and chatter, I often wear my earplugs. They tend to mute the volume without deafening the sound completely. And I have also worn my sunglasses inside the house. Both of these will limit how much people talk to you, but sometimes that can be a good thing.

 

[taniaaust1]

I suggest to IN ADVANCE set a "time out" time for yourself and stick to it.. In advance tell everyone that you will be having to go and rest between such and such a time for an hour,. Then make yourself leave the party to do that and go and lay down with eyes shut (to miniumize the brain overload). Ear plugs can be good too when resting thou I myself just find them annoying in such a situation.

An hour is short enough time for everyone else not to miss your presence to much but a break time which could make quite a difference to most of us (as long as we have that break before things got too bad).

You should feel much better for it and have better quality time when you then get up again. Quality time is often better then quantity time when your brain is shutting down and being overwhelmed so not properly focused and no all there anyway.

 

[Gavman]

I find with people I have to tell them several times its not that I don't like them or blame then but that I specifically can't handle it. If you yell-talk or keep raising your tone, I can't concentrate and will walk off or be unable to have a relationship with you. If I feel it won't be well received or criticised, I won't have a relationship with that person period. Listening to me is part of having a relationship with me. As is not criticising. People who won't do either aren't worth my time.

 

[Seadragon]

Thanks everyone - I have decided with my husband that we will instead have Christmas here at home together just the two of us. I just really can't cope with company right now...he will go and visit his family on Christmas Eve instead.

There are some great tips here for when I do feel ready to involve others in my life again (I hope).

Gavman - LOL at the "yell talk" - that describes my mother in law exactly - she always talks like she has taken speed or something I can't get her to understand my limits of "yell talk" (at present I can't cope with it at all) nor make her understand why I can only cope with company for a few hours at the most...with the result that I haven't seen them for a long time..

Wishing everyone here a peaceful, happy and relaxing Christmas/holidays.

Love Esperanza x

 

[Ocean]

I also find that people don't understand that visiting with them and talking, and especially listening, is tiring. I think friends now get that I need to do physically low key activities but still don't get that listening to them alone is tiring and it is kind of hard to tell people but I guess I should start to try to let them know. Not that it's personal but just an aspect of this illness.

For me it's the monologues that are so hard, those people who go on and on and on and on, I just can't handle it, it exhausts me more than if I walked a mile, I truly believe that. It's much more tiring for me and harder to recover from that physical exertion (well, depending on the extent of the physical exertion of course). I won't see family this holiday but will see some friends at one event and my goal is to have many brief exchanges as possible instead of longer conversations with any one person, and to try to stay away from the monologue-ing as much as I can.

Wishing good holidays to everyone.

 

[maddietod]

I agree about the endless talkers, and when there's also background noise to filter out, it's impossible. I've said no to 4 holiday gatherings so far, and the one I went to (because it was a birthday) turned into exactly this disaster. Not worth it.

 

[MishMash]

John Stewart talked about his Thanksgiving weekend on his show. He said it was stressful.
"The day you spend with extended family whom you purposely try to avoid the rest of the year."

I was thinking about converting to Islam or Hinduism to avoid Christmas hysteria and stress. Until I learned they have their own manic holidays that stress them out.

Maybe atheism. They don't have ritual holidays. Then again, maybe the family sits around the fireplace, and the father reads from Darwin's "Origin of Species".

 

[Enid]

Sensory overload - can you find pockets of absolute quiet - room to remove from all the incoming hiatus of the holiday season even if it means turning down invitations Esperanza.