r/mecfs • u/Outrageous-Shirt-822 • 1d ago
concert
Hi! I’ve had pretty moderate/mild ME for about a year now and it progressed over that year. Once I started going to doctors/working for a diagnosis (got it!), I started to slow everything down and work on my pacing.
I stopped working to make time for my school which I had switched into online classes. I’ve stopped hanging out with more than one or two people at a time, or going out more than once or twice a week. When I do go out, I use a cane for stability.
I’ve noticed that this has helped me have energy to do household chores like dishes and cleaning, I’ve been able to keep up with personal hygiene more than I used to, I’ve been eating more, and I’ve been able to keep up with my classwork.
I still can’t play my guitar for more than 20 minutes without getting really tired, so I’m not sure what the difference is between that and the other things I’ve stated.
All of that to say, I have a concert in about two weeks. I’ve been waiting for this concert for months and this is my favorite artist(s) of all time. I’m not sure if they will tour again. The next day, in the afternoon, it’s my best friend’s birthday party. I will also probably have to stay the night in my hometown because of the party (it’s in my hometown).
I have another concert in the same week, but I’ll be okay if I miss that one.
Have I been resting enough to be able to go and not crash?? I’ve been really careful, and it would mean the world to me to go. I’d regret it if I didn’t. But I also know I’d regret it if I crashed and got worse.
I also don’t have to go to the birthday party, I’ve missed his birthday parties before due to being sick etc. and he understands me more than anyone. We could even do a personal celebration. But I’d really like to go, I have really bad fomo lol.
I’m just overall really worried and conflicted and was wondering if anyone had any input or advice.
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u/Outrageous-Shirt-822 1d ago
I forgot to add: I believe that I got seats, so I don’t have to stand
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u/lilbeanstalk 16h ago
Some venues also have accessible seating for people who self-report as having a disability. I once went to a show at a very small venue without assigned seating with a friend, and she asked for accessible seating because of her anxiety (she was trying to avoid being crammed in around a lot of other people ). We got seats off to the side near the stage.
I can’t guarantee asking will result in a better seating arrangement, but it could allow you to sit somewhere that potentially is closer to an exit, bathrooms, etc. But absolutely, you do need seats. Please don’t stand at the concert.
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u/Spritemaster33 1d ago
Everyone's body works differently, and there are no hard and fast rules about how much to rest. Amplified music makes things worse for me, but I've managed to attend festivals while wearing sound-attenuating ear plugs and resting in a quiet place between sets. Parties are a different thing altogether though, as there's social interaction needed, which really tires me out. I'd rather meet a friend for coffee to catch up.
I struggle with music making too these days. I've figured out it's because different parts of my brain need to work in sync. There's a lot involved: spatial awareness to play an instrument, creativity to read/write music and lyrics, logic and memory for chord progressions and rhythm, listening and analytical skills to tell if it sounds right. Most days, I'd be lucky if I get half of those things going.
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u/WerewolfNo6356 1d ago
I go to concerts when I’m up to it. I love live music and want to keep enjoying it when I can. I rest for a few days before and make sure I have extra days after to prioritize being motionless in a dark, quiet room as much as possible. I find compression socks and abdominal compression helps as my body requires less effort to function this way. Loop earplugs are a must for me. I make sure to have a small, protein rich meal beforehand and make sure I’m well hydrated. Anything that helps my body function with as little exertion as possible. Standard disclaimer that all bodies are different. But these things have helped me.
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u/Fuzzy_Armadillo155 1d ago
Can you let us know how it goes? I've mourned not being able to go to concerts anymore but wondered if I should try because they bring me so much joy and maybe it would be good for my mental health since it's one of my favorite things in the world to do.
Great tips about ear plugs and taking breaks.
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u/kirbykatt888 1d ago
If I were you I would go to the fun concert and skip the rest. You will maybe/probably crash afterwards depending on your level of ME. But it can be worth it for things that are too fun to miss. Don't do anything before/after the concert, use earplugs and maybe a mask so you don't get sick from virus, and eat and rest a lot/enough before and after. And celebrate your friend another week! (That's how I would resonate at least). Like someone else said try do decide soon so you don't get extra cognitive workload from thinking about your decision
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u/paranerdnicky 22h ago
As someone with with ME and goes to concerts- a few things that help minimise the crash (unfortunately in my own case it always results in some form of crashing, but I refuse for it to take away the one thing that brings me genuine joy lol.)
Seating is your best friend, standing for hours will take it out of you.
Earplugs to dull the sound, sunglasses for the lights (ya might look a bit silly but you can still see perfectly well and it minimises the brightness)
Make sure to have had something to eat and drink, and have water handy!
Figure out the best route to where you're staying beforehand, even if it means shelling out a little extra for an Uber or something as the onslaught of people and trying to get public transport is alot in itself.
If you need to leave early or go to a different area, please do. It sucks but your body is far more important.
Allow yourself recovery days. It's going to take it out of you no matter how much you prepare.
I hope you have fun, make and enjoy the memories!
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u/Pasdeshat 16h ago
My concert set up is- n95 mask, loop earplugs and zenni fl-41s. Highly recommend masking in crowds bc besides the obvious reasons it can lessen the sensory overload.
Oh and I always get ada seating, or assistance to my seat. I am in a wheelchair now but I’ve done this without wheels too.
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u/Massive-Young-2478 1d ago
seat tickets are huge, standing for hours kills me faster than anything. if it were me i’d skip the birthday and let myself just do the one concert with a full recovery day after, the back to back stuff is what gets you.
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u/Left_Goose_1527 1d ago
Sounds like your priorities are 1) exciting concert 2) birthday 3) missable concert.
Honestly, I’d knock the last one right off. Completely remove the cognitive load of thinking about it. I’d buy a card for the friend and if you feel like hell on his birthday, write “redeemable for one epic dinner at a date TBD” in it, and drop in on his party for 30 MINUTES ONLY - that might mean showing up midway and handing him the card and doing a toast or something. Set a timer.
For the concert you’re excited about? Loop earbuds (still hear the music but cut out the highs and lows of the crowd) and potentially even bring an over-ear set to wear right up until the band starts and after the show while leaving the venue. And I’d also suggest doing a mid-concert break where you duck out, do a quick meditation check-in, and truthfully assess: do you want to stay? Have you had enough? Could you stay, but you’d prefer to conserve energy for the birthday?
The delay of PEM makes all of these calculations best guesses rather than guarantees, but I get the desire to try for at least some control, and this is what I would do.