Summer has hit, I have always struggled with summer. Even as a little girl we'd have to limit my time outside in order for me to stay stable. My face would flush, id get super dizzy and we'd have to get me into the cold AC asap. It got to the point if I was allowed outside it have to be in a pool. Now a days we have Doxi and Steroids to add to the mix. Which means my skin burns incredibly easily. The day before I turned 31 the All Father took me to the beach with Frigga and theres a pic of me on the beach in long sleeves and it came down to my feet and I kept my hair down that day to.
Because of these meds I can sit in the sunroom and my skin will start to burn which is so odd. Im reaching out to fellow CFers and going help?? How do you cope?? More so how do you balance the protecting your skin and staying cool at the same time. Sunscreen is not the answer. I know sporting stores sell these long sleeve summer shirts that help keep you cool which I might just need to invest in.
Then there the fact my body depletes salt. Which I mean I take a lot of salt, run my fluids, and eat salty snacks. But its still a concerns that must be looked out for. There could be a sudden drop in blood pressure, your blood counts can get low, and you almost have to take replacements. With CF theres elevated salt in your sweat. POTS also depletes salt, so I sorta stay in the house all summer.
Many people are shocked this is my worse season. But the reality is I am not just fighting my disease but now I am fighting the elements. Do I have my skin protected?? Am I cool enough?? Did I take enough salt?? Do I have enough water?? Did I pack a bag of saline?? This is when I catch up on reading because I am trapped inside so to speak. I do not know how to handle the out doors but I know how to handle coping with being stuck inside all the time.
Video games, reading, and cooking. I cook a lot. Oh gosh I got a phone call from Frigga earlier this week asking if I wanted fresh garden veggies. YES!! I made this beautiful rainbow tomato pasta, with fresh basil, and jalapeños. This my own recipe. Its not even a tomato sauce its just cooked fresh tomatoes. She brought me this beautiful white watermelon. Which is not as sweet but very refreshing. OK back to summer. Actually that is a trick for me to stay hydrated. Fresh summer melons.
Summer is harsh, especially down here in the south. Sometimes the best thing you can do is just stay inside and cope with the not ideal. Some times having a disease is choosing whats best for our bodies even if our mind is fighting to do the opposite. Yesterday I had to do this myself. I just wasn't feeling good and had to choose my body over my game that I was steadily working on. I got so sick that I had to pause everything and lay down. Which I guess the point of all this is. Remember to listen to your body. Remember to take care of yourself. You have one life and one body. Also its cooler at night when the sun isn't trying to burn your beaitufil skin!! The ocean is so peaceful at night to!!
But I must go I have a Rubes who is scared of a vacuum and needs an escort to the sunroom.
Love Yall
~Poppet
Because of these meds I can sit in the sunroom and my skin will start to burn which is so odd. Im reaching out to fellow CFers and going help?? How do you cope?? More so how do you balance the protecting your skin and staying cool at the same time. Sunscreen is not the answer. I know sporting stores sell these long sleeve summer shirts that help keep you cool which I might just need to invest in.
Then there the fact my body depletes salt. Which I mean I take a lot of salt, run my fluids, and eat salty snacks. But its still a concerns that must be looked out for. There could be a sudden drop in blood pressure, your blood counts can get low, and you almost have to take replacements. With CF theres elevated salt in your sweat. POTS also depletes salt, so I sorta stay in the house all summer.
Many people are shocked this is my worse season. But the reality is I am not just fighting my disease but now I am fighting the elements. Do I have my skin protected?? Am I cool enough?? Did I take enough salt?? Do I have enough water?? Did I pack a bag of saline?? This is when I catch up on reading because I am trapped inside so to speak. I do not know how to handle the out doors but I know how to handle coping with being stuck inside all the time.
Video games, reading, and cooking. I cook a lot. Oh gosh I got a phone call from Frigga earlier this week asking if I wanted fresh garden veggies. YES!! I made this beautiful rainbow tomato pasta, with fresh basil, and jalapeños. This my own recipe. Its not even a tomato sauce its just cooked fresh tomatoes. She brought me this beautiful white watermelon. Which is not as sweet but very refreshing. OK back to summer. Actually that is a trick for me to stay hydrated. Fresh summer melons.
Summer is harsh, especially down here in the south. Sometimes the best thing you can do is just stay inside and cope with the not ideal. Some times having a disease is choosing whats best for our bodies even if our mind is fighting to do the opposite. Yesterday I had to do this myself. I just wasn't feeling good and had to choose my body over my game that I was steadily working on. I got so sick that I had to pause everything and lay down. Which I guess the point of all this is. Remember to listen to your body. Remember to take care of yourself. You have one life and one body. Also its cooler at night when the sun isn't trying to burn your beaitufil skin!! The ocean is so peaceful at night to!!
But I must go I have a Rubes who is scared of a vacuum and needs an escort to the sunroom.
Love Yall
~Poppet
