As promised, my hickman line was removed today. (It was more odd sensation, than painful, just in case any of you future HSCTers out there are also needle weenies like me.)
Once it was removed, Dr. Fedorenko asked me to lay still for forty minutes before moving. He then popped back in five minutes later and and says, “How are you feeling?” I tell him that I am just fine. He says, “Then, go for a walk! Get up!” He’s such a kidder.
I went downstairs to Eric’s room, where the poor dear was still sleeping, and made him get up to hit the road with me. I bundled up, because I was certain that it would be very cold out, this being Russia and all, and we decided to walk to a Lebanese restaurant to have some lunch. Lunch was fabulous, the restaurant lovely, and I could write a whole post about how great of a date it was, but this blog is about going ninja on MS, not fine dining, and I have to tell you about a discovery I made about myself while we were out.
It turned out that I was was over bundled for the walk. Just minutes into it and I was a hot mess. I am going to stop here to tell you what it is like when an MS patient gets hot, particularly when I would get hot:
Within minutes of getting too warm, my cognitive thinking, which was already shaky, would get real foggy. I would start to get anxious, irritable, frustrated, and almost immediately would have to end whatever activity I was doing. While my brain was having its own little meltdown, every symptom of MS I experienced would immediate triple in effect. My already unsteady gait became a terrible stumbling shuffle, my hands became near impossible to use and the spasms in my back would become painful to the point of tears.
This did not mean that I could avoid getting hot. It happens. You go to a store where the heat is up too high, you step outside in August…in Texas, you wear a sweater that turns out to be a very poor choice, but you are in church and have to just deal.
It might make sense to someone who never lived in a body like that that I could just figure out some way to cool off and then all functions would return to “normal,” but the reality was that, once I got hot, I was done. For the day. This is why I was the baseball Mom who cheered only from the comfort of her shaded chair and sometimes from the AC of the car, but never standing right behind the catcher and clinging to the fences. This is why my kids learned to push themselves on the swings as tiny little things, while their Mom sat in the shade, barely hanging on to the tiniest bit of cool I could find. This is why I prepared meals in a hot kitchen, and then did not sit to enjoy them with my family, but rather went to my room to lay down and rest. I was done and there was no amount of cooling down that was was going to be restorative. I had to fight hard to not be cranky, bossy, irritated, and gruff with my loved ones and I often lost that battle on a bad day.
What happened today, was that I was over bundled and I made it to the restaurant, where I took off my coat, removed my hat, and immediately cooled down. I was not confused about where I was, what I was doing, who I was with, or what I wanted to eat. I was remarkably cheerful when the waitress approached our table and I was overwhelmed to the point of tears when I realized just how much I have lost with my family and my children and my friends over the years as I have dog paddled along.
I had accepted that I was just someone easily rattled and confused by the littlest things and I had accepted that I was just wasn’t that Mom who hung out and watched the kids on the trampoline or in the pool.
Sitting down for that meal with Eric, opened a floodgate for me of realizing just how much MS stole from me, and just how much I have already regained. It is a maddening thing to have your brain, your legs, your arms, and even your personality seize up on you and I am kind of mad now when I realize just how much of that I had come to own as my character.
By God’s great mercy, I know that I was not a tyrant always, but I do know that I battled hard everyday to maintain control of a brain that just did not want to work.
Today, I did not battle. I had a lovely meal, with my wonderful husband and now I weep and blog about it and simply cannot wait to get home to my children and sit in hot kitchens, making cookies without getting angry eyes and take walks with them that don’t end with me collapsed in my bed and done for the day. There are so many things that I am now looking forward that I didn’t even know to plan on looking forward to.
I also wore mascara for our date. And now it is all ruined. Love you all. Mean it.