Canceling can be so gut-wrenching! How do you feel?
Like most of us with MS, I end up canceling a lot. It's something I should be used to and be able to overcome, but sometimes it still really gets to me. It's especially difficult when it's something I really wanted to do and something I planned far in advance.
This happened to me just this weekend. Many months ago, I'd planned a trip and bought tickets to attend last night's Philadelphia Eagles game. It's been many years since I've attended one and I thought for sure I could make it. I knew it'd be difficult and would be a bit too much travel and movement and many other things, however, I had gone some years back and they really did an awesome job of accommodating me (I wrote about it here: https://multiplesclerosis.net/living-with-ms/accommodations-right-trip-eagles-game). So I really thought I could make it work and rest up in the days leading up to it. I even curtailed my Thanksgiving plans so I'd be in the best possible condition. Then the weekend came and I was a mess. I had trouble even walking to and getting to the bathroom because my legs were so weak and so numb. I was also just so exhausted and in pain. I had to make the difficult decision that I could no longer attend the game.
I cancel and bail on plans all the time but this one felt like more of a gut punch than normal. All my careful planning meant nothing compared to the unpredictability of my body. I let my friends down, and I let myself down. I think it was also just a build-up over time of canceling so much. Of missing out so often. Like let me catch a break, you know? It also makes me feel like a fool for even planning such an ambitious event for myself.
Anyway, this is me venting but also asking you to vent. Do you often have to cancel on things you want to do a lot? How does it make you feel? I feel like this time of year (the holidays), it can be an especially common problem for people like us. Also, canceling is an issue for our family and friends too, so feel free to chime in with stories about them!
My problem is I do the opposite.. I do too much and the next day or the weekend I pay for it.. I need to start learning to say no.
This past week was difficult for me it was my birthday on Thanksgiving and just started to adjust my medications with my doctors guidance of course and not sleeping well..put all that together and it is overwhelming.. I made it to my birthday celebration & Thanksgiving with the grace of God by my side. I am grateful for everything but sometimes it's overwhelming and I am dealing with depression & anxiety, along with fatigue
Happy belated birthday,
! That is a lot of celebrating for one day. For Christmas, can you arrange to slip into a bedroom or den when you are overwhelmed? Do you have supportive friends and family who will understand if you need to do that? Wishing you the best. - Lori (Team Member) Thanks and happy birthday
! I most certainly overdo things most of the time, to the point that I try to budget time to pay that "MS Tax" in the days following!
Thanks for writing back. Have not planned Christmas day yet..the good thing it will be most likely just my sister & her husband and my husband.. I am praying they will host it so I won't have an issue hopefully
Before MS I use to host Thanksgiving & Christmas for my families..alot sure has changed .. I don't stress doing that anymoreThat sounds like a relaxing way to celebrate,
, especially if they host. I hope you are feeling especially well Christmas Day. - Lori (Team Member)
Devin, thus why I live day to day. Try to make plans, even something as a Dr I need to see 100 miles away becomes dificult, and tires me the rest of the week. I am surprising all my neurologist, as I still walk with a cane. Ambulatory. Think I got some of my ranting out in one of your post. But I just know there are no expertise to this. Was to take a trip to see mom in Alaska. Pre planning, yes needed. Extra batteries, equipment check from another federal agency. The airlines instead of telling us they cancelled the flight, just refunded money. Then I thought, if had to go on another airline, would they take my equipment, recertify with feds, do I have enough back up battery?.. So perhaps next year, but more equipment has been added. And would I want to shock family that has no idea?
How wonderful that you are still so mobile,
. I know this has been a rough road for you. I hope you are able to visit your mom eventually. Most airlines are pretty good about medical equipment, but you can always call before booking a flight and ask. Thinking of you. - Lori (Team Member) I get it
, it's SO difficult, especially when things are so far away!
As I read your article, tears were flowing and my symptoms of neuropathy were just flaring through my body.. hand on fire 🔥 numb, yet like a hundred BEES 🐝 Stinging me. Fatigue beyond barely I can brush my own hair right now let alone think of the Holiday events to come.
So many times of cancelling. YES, what I feel one day May not be another. No matter how I try plan.. rest up, don’t exert, try not to flare any symptom so I can go to a simple event. Watch a rented movie with my sisters, go to lunch with them, a special day trip for once with my husband when he has a day off. It just doesn’t work out. Even to go to DR. Appointments I have had to cancel. I will have my 5 year “Anniversary “ of MS Christmas Day when I thought I was having a stroke and hike I was working as a Nurse that day. Symptoms showed up as numbness of hand, face, eye blurred vision. Of course king story short… I have MS. I have 19 l signs in my head and 2 on my cervical. I am the only one in my Family with MS. Both my parents passed away Within these years so I even have grief to deal with. My sisters try to understand. I send them information and stories of others so they can try to relate. But reality is they didn’t have it and their life goes on daily and they text me daily of what’s going on. It hard… I am alone, no children, husband works 6 days a week often 70 hrs a week.
I do have my German Shepherd who will turn 11 here Dec 23. And 3 indoor cats. That give that little purpose and my faith in God. I struggle every day though still mentally and physically and pray every day for strength. Bless you all for reading and listening. Don’t give up. Take me day at a time. You are not alone just as I read this forum that helps thank you Devin.My heart goes out to you,
. I wish you could get out and about more often and that you body was more reliable. Is your husband near retirement? I am glad that you have him and your faith to lean on. I know that it is hard to make plans, but I hope you keep trying anyway with people who understand that it might not always work out. You might have to cancel 9 times out of 10, but that 10th time might be well worth it. Sending lots and lots of gentle hugs your way. - Lori (Team Member) apologize spelling.. Hand so numb. Cannot feel texting.
