Last Minute RSVP

Last Minute RSVP

Lately, it seems that there is always something going on. Someone is having a party, someone is getting married, and someone is graduating… There is just so much going on that you get invited to, and you’re excited you were invited and want to see everyone! But wait… what’s the weather going to be like? Is it going to be outside in the middle of summer? Do I have anything else planned around the same time where I might not have enough energy?

Always marking myself as “maybe”

It’s like I don’t want to say yes, but I don’t want to say no… I feel like I’m always marking off ‘maybe’ on Facebook invites, or doing at the very last minute RSVP’s. I used to HATE it when people didn’t RSVP right away so I could have a head count, but now I’m that procrastinating person.

However, I’m not procrastinating just to procrastinate. I’m waiting so that I don’t over commit myself, or you count me in and I end up having to cancel. It’s almost like, what’s more embarrassing? Sending your RSVP last minute or saying YES right away, then having to cancel last minute? They’re both pretty equal I feel, on the embarrassment scale.

Avoiding plans during warmer months

I tend to be able to commit to things a bit easier when it’s not during the warmer months. Which is technically like 10 months out of the year for me in Texas, but you get the idea. Needless to say, the heat is draining for many people with MS. It takes a lot of energy out of us. You don’t want to know how many times I’ve gone to a party and everyone was outside, but I kept going inside by myself from time-to-time. Someone would come inside for something and see me by myself and say, “Why are you hiding out in here for?” Oh I’m hiding all right, could be from the heat or from sensory overload, the list is long.

I’m trying to be considerate

However, I feel like I have to really plan out my schedule and make sure that I can actually commit to it. I don’t want to be mean and not answer your invite, and I don’t want to be that annoying person that waits until the last minute to tell you if I’m coming. I’m really honestly not doing it to be rude. I’m holding off to make sure that I can actually attend and not have to duck out early and be a party pooper.

So for those of you reading this that knows someone with MS or another chronic illness, don’t give up on them and don’t take it personally. We appreciate you thinking of us, and we don’t want you to stop inviting us. We just have to plan and plan and plan some more, and something still might happen to where we can’t make it the day before or day of.

Fatigue can wreck plans

MS can strongly relate to the saying, “Expect the unexpected”. There have even been times that I have looked forward to something coming up and planned for it. Decided to take a nap before the event, so that I was refreshed and ready… but slept through my alarm. WHOOPS, thanks a lot fatigue!!

I also need a lot of reminders, so I try to put all my ‘events’ in my calendar with LOTS of reminders, because I will forget thank so the dreaded cog-fog. Or I will get confused on the dates/times, etc. It’s like a never ending cycle of confusion and planning and forgetting… just to repeat the cycle multiple times. Oh I also have to remember my ball and chain of things I MIGHT need while leaving the house.

Please don’t take it personally

The bottom line that I’m getting at, is don’t take it personally for our lack of immediately accepting an invite. We know it’s annoying not to have a head count, and we’re trying our best to give you one. It’s stressful trying to juggle everything in the first place. It can also be very emotional for us to deal with… we didn’t always have to be this way. It can be upsetting and depressing at times.

Now, if we don’t show up to something we were invited to and you later find out we were sitting on our butts at home scrolling through Facebook, that was also NOT by choice but most likely because we tried to go and our MS decided to put it’s foot down and tell us no.

xoxo

Ashley Ringstaff

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (25)
  • l4u95h
    6 months ago

    Every 4th of July we get invited to a bbq and watch the fireworks thing. They have no air conditioning in there home and everything is outdoors in July. We always decline. I know it hurts my friends feelings. She is a wonderful hostess but I cannot put myself through that in that position. Did I mention I have no idea if there are steps to get in the house? or the proximity from where party is and where bathroom is? My head just swims thinking about it all!

  • Ashley Ringstaff moderator author
    5 months ago

    Oh no! I’m so sorry to hear that. Yeah, it can be overwhelming with MAJOR holidays that are outdoors in the summer. We get invited to go watch the fireworks at a festival, but I prefer to go to a near by house to watch them, so that I can see them but still have AC and bathroom, etc.

    Best,
    Ashley Ringstaff

  • DeBe
    6 months ago

    I’ve just been saying no to everything. Tired of explaining. Don”t know how I’ll feel the day of…

  • Ashley Ringstaff moderator author
    5 months ago

    I used to do that, but I stopped saying no to everything. Now everyone just knows that I’m a VERY VERY LAST MINUTE answer on things. If they can’t understand WHY, then they aren’t my ‘good friends’.

    xoxo
    Ashley Ringstaff

  • DeniseC
    6 months ago

    I went to the winery district in Adelaide Australia last weekend with a few friends. On the Saturday evening, and cold weather, we went to an award winning classy bar and restaurant. It had fireplaces in each room… I spent most of the time outside trying to cool down. They decided to drop me back to the motel as they thought I was tired…

    No matter how good your friends are, and no matter how much you may have shared about key issues around your MS journey, they will forget and definitely forget details.

    Is it hot? Where are the toilets? How far away? Are there stairs? Well to keep friends this mainly goes on in my head. If they only knew…

    While each “holiday” may seem like a gruelling adventure I have learnt over the years I want adventures, even if it is hard yakka at the time. As memories, these become good times and the nasty bits seem to disappear.

  • Ashley Ringstaff moderator author
    5 months ago

    Denise, Thanks for reaching out. I love your outlook on the the good times making the nasty bits disappear, very true.
    It just doesn’t make it any easier to deal with when the negative is happening right then and there.

    I’m sorry to hear that your friends weren’t ‘getting it’ and understanding of what you were doing, and the issue you were facing. Sometimes people just jump to conclusions, or try to fix the problem they think is going on without fully understanding.
    At least your friends are caring… even if it was misplaced reasoning.

    xoxo
    Ashley Ringstaff

  • braindeadmom
    6 months ago

    Oh my gosh, U vocalized exactly the process I go through all of the time!!

    I have great sympathy for folks who live in warmer climates. I live in MI and this summer has been brutal! I can’t imagine feeling like this all of the time!!

    I make “cooling kits” and plans for everything. I was excited to find a light weight cooling vest to try out this year, so I “ignored” the ridiculous cost and ordered one with extra cold packs. (thinking I could throw them in an ice bath tiny cooler as a swap-out) Unfortunately, I need the extra packs to “fill out” the front of the vest, since the cold pack pockets are only on the back side of the garment. using it DOES allow me to do indoor tasks a little longer without overheating, but it has little effect on the outdoor heat.

    As an avid European Futbol fan, I am excited every year when teams come to the States for preseason games. I have a son who shared my luv of the game, so when the tournament came to our area, my first thgt was, “Let’s get tickets”.

    Tickets purchased…all set, right? Then I started thinking about the obstacles….. navigating to the stadium, dealing with crowds, the wait before/after the game. Oops, I forgot about the stairs. Oh crap, temps in the upper 80’s(I have no idea how u folks in AZ or Texas ever leave your homes). I don’t think most folks understand ghe amount of time and energy that goes into every decision to go somewhere.

    No coolers allowed in the stadium/no purses or bags( which means no ice packs…) Instead, I had to budget for 4$ bottles of water, snowcones without syrup, (but with every bottle of water, it means s trip to the BR…So up and down the stairs…..).

    I traded fashion for practicality and wore a light cap, gobs of sunscreen. My can was at least colorful:) I paid for prking close to the stadium(worth the extra $$)

    Armed with my “kit”, my son drove us to the game, I cooled down with ice packs prior to the game ( Yep, that’s my version of tailgating) and we headed to the Big House to see Real Madrid play Manchester United. The only item I forgot was a pair of ear plugs to dim the “stimulation”. I also forgot that our “great seats” meant a descent into the stadium. Lots of apologies for holding up the traffic on the stairs, and I made it to my seat to experience my first European Soccer match!

    I’m not sure most folks can truly understand why all of my preparation and concerns are so impt, and I imagine most of u experience something similar too.

    Thx, Ashley, for sharing your thoughts. I feel like less of an anomaly:)

  • Ashley Ringstaff moderator author
    6 months ago

    OMG! I can’t even imagine how you survived that trip, but it sounds like it was a blast! Made me tired for you just reading it!

    Yes, you would think that us in Texas and AZ wouldn’t leave our homes and I really try not to go outside as much as possible. I’m to the point now that as long as it’s under 105, i’m usually good. But two weeks ago it was 114… and I couldn’t function. I got off work and came home and went to bed with AC down and two fans blowing on high.

    Best, Ashley Ringstaff MultipleSclerosis.net Team Member

  • Thomas Bellas
    6 months ago

    Like the others have stated. Very true and well written. Thank you for this.

  • Ashley Ringstaff moderator author
    6 months ago

    No problem! Thank you for taking the time to read it and reaching out!

    xoxo
    Ashley Ringstaff, MultipleSclerosis.net Team Member

  • AnywhereOutOfThisWorld
    6 months ago

    It sounds like I could have written this myself.

  • Ashley Ringstaff moderator author
    6 months ago

    Ha! I get that A LOT. It’s like we’re all the same person, but not. That makes sense, right?

    Best,
    Ashley Ringstaff

  • Octavia
    6 months ago

    Ashley and others
    I agree about the invites to things and the hedging about going to them. This summer for me, like 2 summers ago is a heatwave and I have missed an outdoor wedding and yesterday a graveside service for a very good friend.
    Luckily my longtime friends who understand how MS affects me understand, appreciating that besides all the other things I need to assess before I can go, like Access, stairs? Can’t do. The distance to walk with my walker to destination, restroom location, ADA accessible, and Crowd size if hard to get around, into, out of if needed, PLUS AC? If not, right now because of temperature or humidity it’s better to say NO for me:(

    It’s frustrating and my workarounds to attend the very important events my heart wants to go to are getting harder and harder because the heat affects me so I cannot speak sometimes and when it happens it looks like I’m having a stroke, when really I just need to be cooled down and get into AC but also because the heat is making it hard to walk normally, I walk like I’m drunk, wobbly and a fall risk.

    So I say no more than I say yes this summer so far hoping it cools down and I have more opportunity to say thank you for the invitation and Yes, I’ll attend…

  • DeniseC
    6 months ago

    Totally agree Octavia. Here in Australia the summer is just a time waster for me. Great beaches that I loved swimming in. Now it is winter and hubby has a 4WD beach permit so at least I can feel the sand on my feet while I walk around the car in a hoody to keep warm. I hold onto the car and drag my bad leg around with no fear of scraping my toes. Ah the small pleasures!

  • Ashley Ringstaff moderator author
    6 months ago

    Yeah. People wonder why I love the winter… I can do more. Luckily, a lot of the things I’ve been doing over the summer included being on the water. So I had that to cool off.

    But I get what you mean with the heat affecting you like that. I’ve had it happen to me.. and it’s why I refuse to even go grocery shopping after work during the summer. I will do curbside pick up before I go in there shopping and having to go back and forth in the parking lot.

    Best,
    Ashley Ringstaff

  • Nancy W
    6 months ago

    This is so true. Thank you Ashley. It is especially hard when you have invisible symptoms and seem “fine.”

    I sometimes try to forget my MS when I meet new people at a meeting. But the activity planning is always in the back of my mind. Recently, I went to a political organization meeting. They need volunteers for canvassing and phone banking. Those things would exhaust me.

    Tomorrow I am going to the pool with my sister then out to lunch. But, after that, will I have enough energy for the free concert in the park that night? Fortunately, she is understanding of my need to wing it.

  • Ashley Ringstaff moderator author
    6 months ago

    Yeah. I’m always winging it. Some people think i’m just a ‘flake’ but my good friends know that I’m just taking it one step at a time… literally.

    Best,
    Ashley Ringstaff

  • Pam
    6 months ago

    This describes it very well. I live in Arizona, the summers are tough. My friends birthdays are all in the summer and they always want to have outdoor pool parties…I’m usually hanging out in the kitchen and even then I can’t get cool enough. I make an appearance then leave. This year my friend wants to spend the weekend at the lake…it’s 110 degrees out, so where will I be, in the motorhome with the airconditioning blasting, but I will be there because they’ve always been there for me.

  • 1woknb
    6 months ago

    This is SO TRUE!! Heat just sucks the life out of us!! 🙁

  • Ashley Ringstaff moderator author
    6 months ago

    Noooo joke! People ask me sometimes, what did you do over the weekend?
    Nothing… I did absolutely nothing. I avoided the sun like it was a crazy ex.

    lol
    Best,
    Ashley Ringstaff

  • jn99
    6 months ago

    Thank you for putting this into clear words!! I tend to sound lame and undecided (I think) when faced with this issue. I don’t like being THAT person, and I know people get hurt because they don’t understand…nor would I have understood before it was me doing it!
    Thank you, Ashley.

  • Ashley Ringstaff moderator author
    6 months ago

    Oh I completely agree. I feel like I was a bit judge-mental back in the day… before I was diagnosed and living with a chronic illness.
    Best, Ashley Ringstaff

  • WeenieDogMomma
    6 months ago

    Thank you for putting this out there Ashley!!! I definitely struggle with this but I didn’t know how much until a friend caller and asked me today “to plan, not to plan to get together in the near future”. What?!? I felt terrible knowing I am that person that cans out on people. It’s so hard to make plans in the summer with MS. I too live in TX and the summer heat has made outtings with friends very difficult.

  • Ashley Ringstaff moderator author
    6 months ago

    Your so welcome! I figured that many people did what I do… and I wanted to voice it out there for people that know someone with MS. We don’t cancel last minute on purpose… we don’t give last minute RSVP’s to be annoying. We just hate over promising.

    xoxo
    Ashley Ringstaff

  • Strider
    6 months ago

    Ashley, you sing my song so perfectly in all that you write. Thank you for using your precious energy for us.

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