Is your mailbox or email filled with invites? It seems like there is always something going on. Someone is having a party, getting married, or graduating. Summer at the shore brings lots of invites for barbecues as well. I love getting invites and catching up with old friends is so much fun. Today is a glimpse at life with a chronic illness…..
But these days, the excitement of an invite brings on a whole new realm of questions…. 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? Will brain fog cause me to forget names and memories?
It is frustrating to always have to mark myself as “maybe”. As much as my first thought is to say yes, I can never be sure how I will be on any given day. The outside often fools people if they don’t understand what is happening on the inside. I feel like I’m always marking off ‘maybe’ on Facebook invites, or doing at the very last minute RSVP’s. I don’t know about you but one of my pet peeves for years was when people didn’t RSVP to an invite or waited until the last minute. I always wanted to get a head count – the planner in me, but now I’m the indecisive person.
It’s not because I am procrastinating, I just have to be careful I don’t over commit myself, or you count me in and I end up having to cancel. I worry about what you will think. Which one is more embarrassing – sending a last minute RSVP or saying YES right away, only to have to cancel at the last minute.
Even though I am ALWAYS cold, it is easier for me to commit when it’s not during the warmer months (or extreme cold ones). Now, living at the Jersey Shore makes it hard to judge and often a small window. I may be cold BUT the heat is draining for many of us with MS. I stopped doing outdoor events for just this reason. It takes a lot of energy out of us. I have been at parties where everyone is outside, and I keep going inside by myself. People think I am hiding and in some ways they are right…. hiding from the heat or from sensory overload, or a multitude of other things which spring up unexpectedly.
I LOVE to plan but life takes on an entirely different planning process now. I don’t want to be mean, and I don’t want to be the annoying person who waits until the last minute to RSVP. I’m actually holding off to make sure I can actually attend and not have to duck out early or be a party pooper.
If you are reading this and you know someone with another chronic condition (you know I struggle with MS), don’t give up on them or take it personally. I’m sure they, along with me, appreciate you’re thinking of us, and we don’t want you to stop inviting us. It just requires we 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.
I am learning to “Expect the unexpected”. I’m grateful for a supportive hubby who helps me to keep this in check. I also need a lot of reminders, because I will forget thanks to the dreaded brain-fog. Or worse, I will get confused on the dates/times, etc. There are periods of never ending confusion, planning and forgetting… just to repeat the cycle multiple times.
The bottom line I’m getting at, is don’t take it personally when we don’t RSVP right away. I know it’s annoying not to have a head count, and I’m trying my best to give you one. It’s stressful trying to juggle everything in the first place. It can also be very emotional for me to deal with… It can be upsetting and depressing at times.
Life with MS (or others with any chronic disease) has changed me in so many ways…. those who are with me daily see the good days and the bad days. They get it and remind me when I tend to forget. Others struggle to understand. Overall, I’m blessed to have an amazing support system. So the next time it takes me forever to RSVP or I decline, don’t take it personally. Know in my heart I would love to be there but it may be a day I’m struggling with MS.
Have a ThirtyOne-derful day!