Having myself a merry little MS-mas

I’m not kidding. My family gets me. Obviously.

I have always loved the holidays. I know. It’s lame. I have a family that I mostly like. (I used to say “I have a perfect family” but I’m thinking as a grown ass person it’s OK to admit your family isn’t perfect but it’s also OK to say they are also pretty awesome considering.)

I don’t dread the holidays like a lot of people I know. I love them. I love buying gifts. I love spending time with with the fam and watching them open said gifts. I really love that I am that aunt who is the eternal “guest” who never has to work very hard but gets to show up, partake, enjoy and then head home with my bags of thoughtful presents that my family got for me.

I’m horribly spoiled. I know this. And for this I am eternally grateful.

But this holiday is forcing me to admit a few things. As I look back on how this year is different than last year, that activity I’ve spent almost every single day of this entire year indulging myself in, I can’t deny that things have kind of taken a bit of a nose dive in the past twelve months.

Last year at this time was the last time I felt “normal.” That’s because my body was pumped full of that magical substance called Solumedrol and I was still feeling like I was rolling on the ‘roids, full of energy, looking at the holidays like the joyful time of year they are for me and hoping that things were only going to get better from there.

But that’s not how MS works. Or, more specifically, that’s not how my MS seems to be working.

A couple of weeks after Christmas 2015 was when I realized that the effects of the Solumedrol weren’t lasting as long as the docs hoped they would. I remember sitting in Dr. Scott’s office for the very first time on December 29, 2015 and him telling me I’d probably be old and gray before I even needed a cane. I remember listening to him and thinking…Well, OK! This can’t be that bad! It’s going to be OK. Remission is coming and then I just have to figure out how to deal with relapses and I can do that.

But remission isn’t all it’s cracked up to be, or at least it’s not for me. In the course of this year I’ve gotten weaker and weaker. I can still walk, most of the time, but I can’t walk very far without taking a rest (I’d guess just about that 100 meters that haunted me recently, thanks to Google). The problem is the lack of energy more than the lack of ability though my ability sometimes goes wonky too. I thought Provigil helped, but it really only helps me get about 4-5 hours in a day where I feel moderately alive. Moderately. I mean, I feel just OK in those 4-5 hours. The rest of the hours, I just want to stop. Sit. Sleep? Or maybe just do nothing.

The holidays have me feeling a certain kind of way because it’s giving me a year of data to analyze and the top-line results on my qualitative report aren’t super positive. Tysabri hasn’t been the miracle drug I wanted it to be. I’m not sure I can do without it, (based on that one month that I skipped my infusion and I could barely walk), but it’s only keeping me from getting worse. Or more accurately it’s preventing me from getting a lot worse. Because I’m definitely not better. I have fewer and fewer days that I can classify as “good” based on what my old definition of good once was. In the last year, I’ve had to develop a new way to classify what I consider “good” and I can’t say I’m thrilled about the new scale.

This holiday was low key in a really good way. The kids are all old enough now that there’s no fighting, no stress, lots of laughing. They were a delight, to be honest. The food? As usual, my family outdid themselves and everything was delectable. Yummy. Indulgent. I was home in bed by 10:30PM on Christmas Eve and I was pretty happy.

Christmas Day was harder. I didn’t sleep well that night before no matter how happy I felt when I laid my head on my pillow. I think I might have a UTI? Tysabri sometimes causes them, or so I’m told. I’m not sure, but I was up peeing just about every hour on the hour. When I had to leave my house to get to my sister’s for Christmas Day festivities, I was already dragging.

I told myself not to worry about it. I didn’t have to do anything more than get myself there, sit around, open some presents and eat a bunch of delicious stuff. The thing that is killing me to admit is that even that felt like too much for me. I got to my sister’s house around Noon. I put on my happy face and hung around all day. I did the things, ate the food and had the fun. Mostly I just sat around! I mean, how hard is that?

By 6PM I was hitting the wall. I was trying to just last long enough to eat Christmas dinner. But since we ate so much at brunch, nobody was ready for dinner by 6PM, but by 6PM, I was on my sixth hour being vertical and I was ready to eat and go to sleep. Dinner was just starting being made at 8PM – not starting to be eaten – and I literally hit the wall. I knew it would be (just) another hour or so until we ate and cleaned up and everyone went home but I didn’t have another hour in me. I didn’t have another ten minutes in me.

My entire body was throbbing. Pain seems to happen when I am overly tired or sometimes it comes on me more aggressively when I’m on Provigil (again, no idea why) but my entire body was aching. I was dreading getting home and doing the all the steps (the usual routine was ahead of me…litter boxes down the cellar, feed the cats in the kitchen, little boxes on the second floor, then bed) and I was not sure how the steps were going to be possible with how I was feeling.

I knew it would seem ridiculous for me to actually leave half an hour before dinner was served. I didn’t really want to leave because I was actually starving and I really love Christmas dinner but I also knew I was breaking down. I get really crabby when that happens and I knew I should just go home and stop trying to pretend I was OK when I wasn’t.  I wasn’t pretending very well by that time anyway.

The broccoli casserole was just being mixed up and put in the oven when I called it. I said my thank-yous and left. I got home and did my usual (slow down the stairs, one foot at a time, then crawl up the stairs, fall into bed because thank God on Christmas I pretty much stay in comfy clothes all day and there was no makeup removal involved).

Then I experienced that feeling. My most favorite feeling of all! That is the feeling when I am physically done, and my body is on fire with pain and my legs barely move like legs are supposed to move but my brain remembers that I took that drug around 11AM that morning and it’s not anywhere close to being ready for unconsciousness. So I lay in bed, awake. Feeling the pain, but happy to be there all the same.

Holidays are hard, even when they’re not hard, when your body isn’t playing nicely like it used to.

Sitting around, laughing and eating and socializing with people you love is tiring and I keep overestimating how much I can pretend before I hit the wall. Maybe it’s the pretending to be my old self that takes so much out of me? But even when I don’t, even when my bitchy self bursts out and gets super short and obviously irritated, that makes me feel badly, too, so that blows. Who wants to be the big grump on Christmas Day?

Again. I realize the obvious. I need to accept things have changed. I need to accept it and move on. The fear I have on this last week of 2016, the year of total suck, is what happens once I accept it? Then what? How do I live this new life and not resent it 100% of the time? How do I not lose my mind with frustration, loneliness and fear when I spend so much time alone doing nothing but reading and thinking and being quiet (because that’s what my new body can manage)?

What happens once you accept the quiet?

I honestly don’t know because clearly I haven’t accepted anything. I want to be better at this. I want to be the person who sees the silver lining and accepts the hand she’s been dealt gracefully and with a happy little laugh and accepts that all of our lives are changing every minute of every day. That makes my life not very much different than yours. Or yours. Or yours. It might actually look a lot better than yours, on some days. It might be easier than yours, on my worst day. I want to be more grateful for that fact and I want to focus on the positive.

I am alive. I am surrounded by people who love me. Things could be a lot worse. There are worse things than being the grump on Christmas.

I’m going to work harder on remembering that.

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