Sometimes, it's hard to keep putting a pretty face on it.
Like today, we drove the 35 miles to our closest doctor/shopping town. We intended it to be a good day. I was dressed up in my CTO and doing what I should to make things go okay for me. We made a few stops. Each time, I take off the CTO in order to go into the store. I feel like I need the break from restriction, and also, I still hate the looks from people. I wear it in to our local, small town stores and smile broadly to everyone as if to say, "I'm having a better day than you are! Don't feel sorry for me!"
But you know, it's all a ruse. It's all a bluff. I can trick even myself into believing that is true...for awhile. But the truth is, I'm not having a good day. I'm having a crappy day. I just don't want it out in the wide open for everyone to see and give me sympathetic looks!
How can I "move on" and think about normal things when I'm in this brace and yes, it gives me some relief at times, though at others, it's just like my old brace, the Aspen. The Johnson feels really good at first, but eventually, my cranium slumps back and starts compressing things and I get to thinking that I don't know if I could live with myself if it ever progressed to feeling like this all the time.
These braces are good but only up to a point. And I fear getting a halo. It's so permanent, there's no taking it off for breaks. And I fear the restrictiveness of it.
Anyway, we had planned to go grocery shopping after my husband's doctor appointment. We always try to go shopping in that town if we can because the prices are so much better than they are in the little stores locally.
I sat in the waiting room, had to tell my story to the doctor because he saw me out the window when we drove up to park and I had the brace on. I visited some with the secretary, then I nodded right off sound asleep in the midst of our conversation. The doctor came in and invited me into the room with my husband and I got up, feeling really badly. I sat and listened to what the man had to say, but then I had to say (surprisingly to me) that we needed to leave, the doctor needed to wrap it up or give my husband another appointment because I felt so weak, so much in pain, so dizzy and nauseous. That was fine, the doctor was done anyway.
We got out to the truck and I said I could not go grocery shopping after all. It's a hard decision to make, we'd been waiting to shop at this particular store. But, the right situation and it's easy to make hard decisions. We headed home and when we got here, I laid down and fell right to sleep.
Well, it was to be expected. Yesterday, we had to drive to Portland for another doctor appointment. Again, this was meant to be a fun trip. We don't get to go anywhere because of how I feel and my husband is recovering from foot surgery...so, in the spirit of a post I made a few messages back about making the little things special, we had plans for a wonderful lunch, and a lovely drive through the Columbia Gorge.
And it was, but at the doctor's office, I needed to leave my husband and go outside into a larger waiting area and lie down on two adjoining benches, just to get the weight of my head off of my spine. The arrangement was uncomfortable for lying down, but eventually doing so helped a lot. Yet, back in the car, with the CTO on, again, things just felt compressed that shouldn't be, or maybe it was due to the rolling back and forth, side to side, of just being in a vehicle.
We stopped for gas and at the station was one of those small McDonald's. We discussed that we might like to share a little dish of ice cream. But I decided easily not to go in. I didn't have the energy to unstrap the CTO, and I didn't have the strength to bear people looking at me. I don't need ice cream anyway.
This all reinforces how badly I need the fusion...but of course, I'm not going to get one for at least a year and naturally, as badly as I need to keep thinking positively, I know the truth is, they might "open you up and do a test screw and if your bones are no good, we'll close you back up and not do the fusion." (according to Dr. B a month or so ago). How easily this all rolls off the tongue! Except it directly affects ME and how I can deal with life for what's left of it.
So, I have a love/hate relationship with the CTO. I love the sporty straps on it and the headband that gives so much stability (Mendelbaum!) but I hate the clumsiness of it, the restriction of it, and most of all, the looks from people, even tho they are sympathetic.
I told my husband today that the next time I am wearing the CTO and someone asks me, "What happened?" I'm going to look at them very seriously and say, "Nothing! Why?" Of course, after that, I'd smile and let them know I was having an absolutely fabulous day.
The other little observation I have had is that when I am talking to strangers in the CTO, I talk very fast and try to dominate the conversation, or at least, control the direction it takes, so that I can avoid being asked that question.
This is all so, so hard. Most of the time. Sometimes, it's so hard, it is so serious, I have no words for it and my facade comes crashing down. Like today. And yesterday.