We’ve been together for 25 years but there are still times when we feel like strangers. We go to sleep at different times, she’s always sending mixed signals, we argue about simple things like what to eat, and we both just always want something different. You would think by now we would have grown to know each other and become much more in sync. I know this sounds like an old married couple, but I’m talking about my body and my mind. One of my biggest struggles with MS has been figuring out my body. We haven't gotten completely on the same page yet. There are days when I think we are getting along great, but then the next day it all back fires. I’ll give you an example.
A few weeks ago I went to go see The Pixies, a band I have been wanting to see since high school. This is a band that I would picture seeing in a dimly lit beautiful theatre, surrounded by others on cloud nine and red wine (humor me and divulge in my visions.) But, rather they were playing a short set at an outdoor music festival. Where I was to be instead surrounded by floral head band wearing teenagers, drunk moms and natty light. Anyone who knows me well knows that an outdoor music festival is a nightmare for me. I have a lot of trouble handling being in the heat for long periods of time, a difficult feat living in Florida, it gets me very dizzy and disoriented. I also sometimes have a hard time handling constant loud music, another thing that sets me off balance. Now to throw in the anxiety problems of being surrounded by crowds all day.
But these are all things I’ve been working on. I have been making myself go to the beach a lot lately, poor me right, to get used to being in the heat for longer periods of time. I’ve been slowly learning how to handle loud noises better. Which actually I’m surprised still bothers me as much as it does because I go to a lot of concerts. But, I stopped yelling at my boyfriend to turn the music down in the car. I have also been getting a lot better at being in crowds over the years, as long as I am not alone. We will get to my fear of being alone another day, I don’t mean poor me no friends alone, but physically being by myself. Anyways, all stars seemed to be aligning for this concert.
It was a great day. The heat didn’t bother me much, despite my great decision to wear leather boots to an outdoor event in the sun. The noise didn’t make me dizzy and the crowds didn’t bother me at all. I went home with a minor sunburn and my pride still in tact. It’s frustrating sometimes to even have to consider all these things when going somewhere. I wish I could have someone ask if I want to go the beach and just say yes. Yes, with out having to think about if I have enough water, will there be an umbrella, is there a way for me to leave early if I need to, where can I pack medications just in case. Sometimes it doesn't phase me having to think of all these things, thats just how it is.
The next day though, my body was now realizing what we did the day before. It was like I was having too good a time for my body to be paying attention, but when it had time to think about it the next day, it was pissed. I woke up feeling the exhaustion of the heat and the dizziness of the loud music. I was instantly angry and felt like my body had tricked me. But again, thats just how it is. Despite the day after blues, I was thankful for the good day I was able to have.
Someday we will get on the same page, hopefully. I wish my body could give me better warning signs, like texting me that its time to leave once its had all the sun it can handle. Until then though, we are stuck communicating through snail mail it seems.
A few weeks ago I went to go see The Pixies, a band I have been wanting to see since high school. This is a band that I would picture seeing in a dimly lit beautiful theatre, surrounded by others on cloud nine and red wine (humor me and divulge in my visions.) But, rather they were playing a short set at an outdoor music festival. Where I was to be instead surrounded by floral head band wearing teenagers, drunk moms and natty light. Anyone who knows me well knows that an outdoor music festival is a nightmare for me. I have a lot of trouble handling being in the heat for long periods of time, a difficult feat living in Florida, it gets me very dizzy and disoriented. I also sometimes have a hard time handling constant loud music, another thing that sets me off balance. Now to throw in the anxiety problems of being surrounded by crowds all day.
But these are all things I’ve been working on. I have been making myself go to the beach a lot lately, poor me right, to get used to being in the heat for longer periods of time. I’ve been slowly learning how to handle loud noises better. Which actually I’m surprised still bothers me as much as it does because I go to a lot of concerts. But, I stopped yelling at my boyfriend to turn the music down in the car. I have also been getting a lot better at being in crowds over the years, as long as I am not alone. We will get to my fear of being alone another day, I don’t mean poor me no friends alone, but physically being by myself. Anyways, all stars seemed to be aligning for this concert.
It was a great day. The heat didn’t bother me much, despite my great decision to wear leather boots to an outdoor event in the sun. The noise didn’t make me dizzy and the crowds didn’t bother me at all. I went home with a minor sunburn and my pride still in tact. It’s frustrating sometimes to even have to consider all these things when going somewhere. I wish I could have someone ask if I want to go the beach and just say yes. Yes, with out having to think about if I have enough water, will there be an umbrella, is there a way for me to leave early if I need to, where can I pack medications just in case. Sometimes it doesn't phase me having to think of all these things, thats just how it is.
The next day though, my body was now realizing what we did the day before. It was like I was having too good a time for my body to be paying attention, but when it had time to think about it the next day, it was pissed. I woke up feeling the exhaustion of the heat and the dizziness of the loud music. I was instantly angry and felt like my body had tricked me. But again, thats just how it is. Despite the day after blues, I was thankful for the good day I was able to have.
Someday we will get on the same page, hopefully. I wish my body could give me better warning signs, like texting me that its time to leave once its had all the sun it can handle. Until then though, we are stuck communicating through snail mail it seems.
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