I'm finding that I am trying very hard to get adjusted to this new way of life. When I try to explain this to people, many assume that it has to do with my new role as a mommy and how that plays into my life as mommy, wife and self. But no, that has nothing to do with it. While I am a new mommy - I have known that I wanted to be a mommy my entire life. While many things that I thought would turn out differently for me and have not- this one has. I am a wonderful mommy; if I do say so myself! I love being a mommy and it feels like she has been a part of me for my entire life. That hasn't been a change for me at all.
The change that I'm referring to is what else, the changes brought on by the monster itself. The RSD is causing these weird feelings and changes and I'm having to get used to myself all over again. I had thought that I was used to the pain patterns, used to the effects that RSD had on my body, used to the levels and amounts and frequency of pain and the weird side effects (like the wonderful feeling of blood dripping down my leg when there really isn't any, or the feeling of an electric eel wriggling and squirming and fighting to escape from under my skin). Just when I thought I was accustomed to the oddities, my disease has ramped up and there are all sorts of new changes in how I feel, see, hear and view the world. My pain is on a completely different level than I remember it being in the past decade really. There is a buzzing and I humming that comes over my body almost - like I'm going to have a seizure almost and I know that it means that I'm going to be extra stumbly and weak and to be super careful. No favorite glass cups or mugs. Minimal lifting of my little girl. Lot's of tummy and floor time with her. I try to examine how the feelings in my body are shifting and changing - try to identify these every shifting patterns so that I can maybe start to see what is going on. Maybe start to recognize them for what they are and can develop coping mechanisms, other than ways to cry without people noticing.
I'm trying to find ways to make myself feel better. I'm trying to figure out how to heal and make time to get well. But it's hard. There aren't enough hours in the day. I wake up early and I want to have enough time to snuggle my daughter and changer her diaper and dress her for the day before I have to hand her off to her dad because I have to get ready for work. I fly off to work, plow through the 5 hours there, whirl back home, take on my telecommuting schedule and baby duty, for a few hours until I can focus on just my little girl, then it's bedtime between 7-8 and then by that time, I manage to eat a little something and I'm ready to fall on my face. No time for exercise, PT, taking care of me. There is no time for me. I don't want to sacrifice any of my time with my little girl- I have to give up enough of that as it is. It's just. It's so hard. So, I sit and I type on my blog, and I daydream about starting my own photography company. I really think that I could do it. I love taking photos, I don't feel handicapped when I do that, and I really do think that I have a talent and an eye for it. I just need a little more time to put together a website and get a few more people for my portfolio. I know that I would have to start small, but I just know I could do it. I know that there are people out there that would love to get there pictures taken by me. I know it. I just have to make it happen. Anything to not be chained to a desk and be in charge of my own schedule and maximize my time with my little girl.
And speaking of getting used to these weird pains, there are more for me to get used to right now, and they are in my hands. I feel like I grabbed a cactus plants with my hands and just squeezed away at it. I wish my hands wouldn't get into the action - I need to be able to take photos - and type!
The change that I'm referring to is what else, the changes brought on by the monster itself. The RSD is causing these weird feelings and changes and I'm having to get used to myself all over again. I had thought that I was used to the pain patterns, used to the effects that RSD had on my body, used to the levels and amounts and frequency of pain and the weird side effects (like the wonderful feeling of blood dripping down my leg when there really isn't any, or the feeling of an electric eel wriggling and squirming and fighting to escape from under my skin). Just when I thought I was accustomed to the oddities, my disease has ramped up and there are all sorts of new changes in how I feel, see, hear and view the world. My pain is on a completely different level than I remember it being in the past decade really. There is a buzzing and I humming that comes over my body almost - like I'm going to have a seizure almost and I know that it means that I'm going to be extra stumbly and weak and to be super careful. No favorite glass cups or mugs. Minimal lifting of my little girl. Lot's of tummy and floor time with her. I try to examine how the feelings in my body are shifting and changing - try to identify these every shifting patterns so that I can maybe start to see what is going on. Maybe start to recognize them for what they are and can develop coping mechanisms, other than ways to cry without people noticing.
I'm trying to find ways to make myself feel better. I'm trying to figure out how to heal and make time to get well. But it's hard. There aren't enough hours in the day. I wake up early and I want to have enough time to snuggle my daughter and changer her diaper and dress her for the day before I have to hand her off to her dad because I have to get ready for work. I fly off to work, plow through the 5 hours there, whirl back home, take on my telecommuting schedule and baby duty, for a few hours until I can focus on just my little girl, then it's bedtime between 7-8 and then by that time, I manage to eat a little something and I'm ready to fall on my face. No time for exercise, PT, taking care of me. There is no time for me. I don't want to sacrifice any of my time with my little girl- I have to give up enough of that as it is. It's just. It's so hard. So, I sit and I type on my blog, and I daydream about starting my own photography company. I really think that I could do it. I love taking photos, I don't feel handicapped when I do that, and I really do think that I have a talent and an eye for it. I just need a little more time to put together a website and get a few more people for my portfolio. I know that I would have to start small, but I just know I could do it. I know that there are people out there that would love to get there pictures taken by me. I know it. I just have to make it happen. Anything to not be chained to a desk and be in charge of my own schedule and maximize my time with my little girl.
And speaking of getting used to these weird pains, there are more for me to get used to right now, and they are in my hands. I feel like I grabbed a cactus plants with my hands and just squeezed away at it. I wish my hands wouldn't get into the action - I need to be able to take photos - and type!
Is this the real life?
Is this just fantasy?
Caught in a landslide...
No escape from reality
Open your eyes, look up to the skies and see....
Bohemian Rhapsody - Queen
