I’ve had this issue almost my whole life.
I question what’s real. I see a situation with my own two eyes. I may actually live that situation. In real time. I remember the details and I can recite the words. But, then I find myself thinking later, “but what if I just made it all up? What if it’s all in my head?”
This sounds pretty crazy now that I write it down and look at the words. But it’s happened to me a million times in my life. I may perceive things to be one way. Someone else perceives them to be another. Which is the actual truth? Sometimes it’s hard to say with complete certainty. Maybe I remember things the way I wanted them to be. Maybe I create feelings that color intention and magnify motives that aren’t actually there. Maybe my brain is seeing things the way I need to see them. Maybe I make things easier for myself by doing this. Maybe I make them harder.
The end result is I often don’t trust my own perception of reality. It went on for years with my MS symptoms. The first time my legs went “funny” I remember thinking, “Whoah. Something weird is happening.” But later in the day I talked myself out of it. I imagined that! That couldn’t have been real. Shake it off. It’s all in your head. Weeks later I questioned whether or not it had actually happened at all!
Then it happened again and I did the same thing again. And again. And again. Sometimes this involved me actually bleeding or spraining an ankle or embarrassing myself horribly or getting a black eye (or two) but I still talked myself out of it.
Then there was that day on the hillside in Florence. I couldn’t walk and I was alone and scared and sitting on the side of a fountain. Tourists took selfies around me as tears were streaming down my face, and I said to myself, “Ok. This is happening. You cannot deny this. You are alone. On a hillside very far from your hotel. In a foreign country with near perfect strangers and you cannot walk. This. Is. Happening.” And it scared the shit out of me.
The next few days I took it easier. I rested more. I tried to absorb it but still there was that voice way down deep that suggested to me once again that maybe I was doing this. Maybe I was making it happen. And just like I made it happen I could make it stop. And the reality started slipping away again and I could allow myself to think, well, maybe it’s totally ok. Maybe I just need a little rest.
But I’m not crazy enough to not have called the doctor when I got home. I knew needed to see one more Doctor. I still hadn’t seen the neurologist. And something told me, he was the one who would finally fix it – if there was indeed something in need of fixing.
A month later after a really long few hours inside of an MRI machine, they told me. You have a disease. These things that happen to you are symptoms. It’s not fixable. It’s sort of treatable. It’s all a game of waiting and seeing. There was a brief moment when said to myself, “See? You can’t make things happen with your mind! YOU HAVE A DISEASE. This is really happening.”
And a few weeks later, I started doing it again. Could this weakness be MS or am I just lazy? Is this fatigue really my disease or do I just really like to sleep. A lot. Could I walk farther and not feel like I’d run a marathon if just tried a little harder? Maybe I’m just imagining all of this. Maybe I can make it stop.
I still do this. Even after 6 months of going to the hospital and having needles stuck in my veins on the regular, I can still talk myself into thinking maybe this is all in my head.
Today I had to walk down four or five flights of stairs as we toured some real estate for work.
I had to walk DOWN not up. I hesitated for a second. I might not be able to do this, I thought, for a split second. Then my brain jumped in with, “Oh come on! You can walk down. You can go slow! Hold on. You’ll be fine.” Then after that it was, just walk the block and a half to the next site. Jesus you can’t get a car to go around the block! Then it hit me. This is real. This is really happening. And I can’t think my way out of it like I’ve done with virtually every other problem I’ve ever faced in my life. This is real!
This is real.
As I dragged my heavy legs to my car after work, dark circles beneath both eyes, feeling so defeated and physically spent it hit me again. This is really happening. I should has said, “Sorry guys. I need to take the elevator down and back up again because my body can’t handle this. It’s two days before infusion day. I’m weak. I look like a normal girl but I feel like I am going to break. I can’t do it.” I have to learn to just be ok with the fact that my body only works in short spurts. I need to build in the rest. I need to plan for the inevitability of when I will crap out.
I need to accept that this is real. This bone tired feeling like I can’t walk one more step? Probably means I need to not walk one more step.
I hate everything about that. I know I should be more grateful! But I hate everything about this. Goddammit.