A multiple sclerosis staycation
Last week, EMD Serono/Pfizer invited me and nine other MS bloggers from around the country to a summit. They wanted to pick our collective MS brains about MS blogger things.
It was an honor to be included among this talented and eclectic group, a bunch of folks as different as our own personal MS symptoms. EMD Serono/Pfizer wanted our brains in the best possible MS blogger working order and so they put us up overnight. As the closest to the summit headquarters I was able to drive to the event. My other new blogger friends flew. In airplanes that is, MS has not yet given us the ability to fly although one never knows what the future may bring.
This was a bit of a staycation for me. The fatigue of my MS, (as well as the cost of living with a chronic illness,) makes an actual vacation somewhat difficult. I am able to travel to visit family but the energy expended on those trips goes to chasing my little nephews, not to sightseeing.
Anyway, arriving at the summit I checked into the super nice, super clean hotel room reserved just for me. I was impressed. It’s not often I am treated to such a lovely extravagance. The bed was huge and looked super comfy, topped with a ton of soft pillows I would not have to worry about putting back in order in the morning as I was in a hotel, not my own home-sweet.
After putting down my bag I ventured to check out the place and sat in the lobby for a while. There I met a fellow blogger who also had recently arrived for the summit. How do MS bloggers recognize each other as fellow MS bloggers? Is there a magic sign? Canes help, as do the long lines to the lobby restroom.
But I recognized her by her forearm crutch and she likely recognized me by the confused, brain fogged expression that seems to be on my face even when I am having a “with it” kind of day. Turns out we knew each other and had communicated online. We chatted and then we each went up to our separate rooms to get ready for the planned banquet.
At dinner, which was delicious by the way, I sat among some of my fellow bloggers, some with companions, some not and we got to know each other. What do a group of MSers do for laughs over dinner? Tell bladder jokes, of course!
It started with the competitive me proudly announcing that I was the first to need the bathroom. I was hoping there would be a prize for this. Unfortunately one of my dinner companions announced he had already gone, twice, so I lost that game.
From there, bladder jokes followed. I’m proud to say we were the most raucous table in the room. But after dinner I began to fade.
Although I had only driven to the event and everyone else had dealt with airplanes and missed connections and long hours and taxicabs, I was the most beat. Many of the group wanted to head to the bar to chat some more but I wanted to go to bed, my nice, huge, soft bed. Even among MS lightweights I am a lightweight! I said goodnight and left the group. I think most of them called it a night too- we MSers often have great ideas but teeny tiny reserve.
I checked some emails, changed into pj’s, pulled out what I would wear to the summit so I could get ready quickly in the morning, and climbed into bed.
There was a noise.
I ignored it.
It didn’t go away.
I buried my head under all those super soft pillows.
I could still hear it.
I figured I was so tired I would just sleep right through it.
I figured putting the TV on would drown it out.
I buried my head under the covers and under all the pillows to muffle the sound even more.
I could hear it still.
I told myself that if I stopped thinking about it, it would go away.
The more I stopped thinking about it the louder it became.
I got up to see if the sound had anything to do with the heating system, something I could control.
It didn’t and I couldn’t.
The sound was like a particularly obnoxious motor, motoring sounds being particularly difficult for me. I have complained about weird ear noises with my MS since before doctors knew MS caused weird ear noises. Was I imagining this horrible sound?
I was reluctant to call the front desk for fear of two things- what if they couldn’t hear it because it was all in my head and what if they moved me? I was in pj’s and my clothes were unpacked and all laid out. I didn’t want to move. I just wanted to sleep before the big day tomorrow.
The tossing and turning went on for three hours. At 1AM I called the front desk and they sent someone up. He didn’t hear anything. He offered to help move me. While I repacked he did admit there was a generator outside of my window and that could be the noise I heard.
As we walked to a new room on the other side of the building he also told me he was hard of hearing! Oh, and he worked near the generator all the time so he had gotten used to the sound.
The new room was just as lovely and I again unpacked and crawled into the second super soft bed. It was quiet. NOW, I could sleep.
Except I was wired. I thought maybe TV playing softly in the background would lull me to sleep. I got up and grabbed the remote. Back in bed I realized the volume was too loud. I picked up the remote to turn it down. The batteries were dead. I got up and manually shut the TV off. And sometime after 2AM I drifted off to sleep.
Here is a picture of all of us at the summit. It might be hard to recognize me so let me help you. In front, see the beautiful, fashionably dressed black woman on the scooter? I’m next to her, wearing purple and what I THOUGHT was a slimming outfit.
At the summit the next day we were asked to list what gives us strength. On auto pilot from the events of the middle of the night I listed my strengths as God, humor, family/friends, and the Rolling Stones.
As the day wore on and our collective and usual MS fatigue combined with the after the delicious lunch fatigue, all of us entered a slight brain fog state. Still, we did our best and I hope the company found useful information sprouting from our foggy brains.
The thing was, as tired as we all were, we didn’t want the day to end. As it did, we found ourselves lingering, chatting and exchanging info. As beyond exhausted as we were, we didn’t want to say goodbye.
So here is what I learned from the EMD Serono/Pfizer MS Summit. When I listed my strengths, my brain wasn’t just meandering through the autopilot zone. My strength that day came from my awesome new friends. This little group who became family through a weird genetic trait of happening to be MS bloggers, managed to hold each other up as we got to know each other. Zombie brains, scooters, crutches, canes, and all….
For you friends, here are the excellent websites/blogs represented by this incredible group. One is so spectacular it doesn’t even need mentioning- www.yvonnedesousa.com haha!
Here are the nine others- in no particular order except the order in which we sat during the summit. Please check them out!
Image courtesy of foto76/FreeDigitalPhotos.net
Image courtesy of Gualberto107/FreeDigitalPhotos.net
Image courtesy of Suat Eman/FreeDigitalPhotos.net
Image courtesy of Stuart Miles/FreeDigitalPhotos.net
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Image courtesy ofsurachai/FreeDigitalPhotos.net