1/27/2019 0 Comments Dear, painDear Pain,
By now we’ve gotten to know each other quite well. You make my bones ache and my muscles hurt, you make my nerves shock, you make me feel weak, and heavy.. you make me exhausted, but you make it impossible to sleep. Most days, when you’re acting out, you make it hard for me to do much of anything. Most people don’t know you as well as I do.. I’ve seen firsthand, people who meet you for the first time, and they don’t know how to handle you, and they really don’t like you.. for most, you don’t stick around long.. But for others, they think you’re going away soon.. little do they know, you never will.. Pain, I hate you, but I’m not mad at you anymore, not like I was when I first met you. When I first met you, I loathed you, I hated everything about you, I wanted you to go away, I thought I could make you leave, but little did I know, there was nothing I could do to make you go away. Maybe you'd ease up a bit, but you've never gone away completely, not since I first met you.. I was so mad at you for taking so many people, opportunities, and experiences away from me... When I met you, I was in middle school, and I was so mad at you.. I prayed and I wished and I hoped that you would just go away.. Pain, i’m not mad at you, because I know you taught me so many things. For some reason, in this life, I’m supposed to know you. I’m one of those people that likes to believe that everything happens for a reason, so for some reason, for some unknown reason... I’m supposed to know you. I don’t cry over you as much as I used to, I used to cry because of you every single night.. Most days, I’m completely frustrated and fed up with you.. Most days, I wish I didn’t know you... You’ve caused so many surgeries, scans, and ER trips, medications, and injections.. You've created a lifelong battle, I never wanted to fight.. Not only have you caused excruciating physical pain. You’ve caused many arguments, and you’ve made my mom shed so many tears. Because of you, I will never live a normal life. So, I have to learn to live with you, and it’s been the hardest lesson I’ve ever had to learn. I never wanted to know what it felt like to hurt, every minute of every day. I never wanted to know, what it was like to be chronically ill. I never even wanted to know what the words “chronic illness” meant.. I never wanted to know, what it was like to wake up from surgery, or to even know, what the inside of an OR looked like. Pain, you taught me so many things I didn’t want to know, but you also taught me so many things that I needed to learn. I wish I didn’t know you as well as I do, but because of you.. I know how to empathize.. Because of you, I can help others who are just getting to know you.. I believe, because of you, I feel deeper, I love more, I care more.. Because of you, I learned who my true friends are. Because of you, I learned there’s no one better than family. So, I would like to thank you for the many good lessons.. But with you around, it makes my life harder than most.. I have to work harder, push through more obstacles, and endure more, to get through every day.. If I could choose, whether I had to know you or not, I would choose to never know who you are, what you do, or how you make me feel... As much as I know that you’ll never go away completely, I’ll never stop fighting you. I don’t expect you to go away, but please, let me breathe. Love, your lifelong friend, Madison
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1/21/2019 0 Comments if i had 24 hours to be normal..When you have extreme Chronic Pain and Rare Chronic Illnesses, you often wonder what it would be like to be "normal" to not live with any pain, or symptoms, you wonder what you would do if you only had "24 Hours to be normal." I often look at healthy people and wonder what it would be like, "what would it be like to be able to clean the entire house and still have energy to get on with your day." Or I wonder what it would be like to be able to go on a long road trip and still be able to enjoy the day after a very long car ride. I wonder what it's like to go to the grocery store, and THEN go home and cook the food too. I also often wonder what it would be like to be able to walk the dog every single day without horrible pain.
I don't wish it was my life, I'm happy with my life, I truly believe my pain, illnesses, the way my life is, all has a purpose, there is a reason my life is, the way that it is. But if I sit down and really think about what it would be like to be healthy, it's fascinating. When I look at healthy people I can't help but be fascinated by them, by their energy levels and lack of pain. It is SO fascinating to me that there are actually people who are able to clean the house and grocery shop and walk the dog, and go to work, all in one day. So, if I had 24hrs to be healthy and "normal" here is what I would do. I would probably wash, dry, fold, and put away all of my laundry. Yes, I do actually wish that i could do my laundry, without horrible repercussions. Generally when I do laundry, I wash it one day, then fold and put away the next day. While the laundry was cycling through, I would clean and organize my room, REALLY good. Remember, I only have 24hrs before the pain returns, so I want to get the important stuff done. When the chores were out of the way, I would go for a long run, with my dogs.. On a normal day, I'm not able to walk my dogs without being in bed the rest of the day. When I first got sick, I dreamt of going for long runs, I used to be able to run before my back started to hurt when I was 11. I don't dream of running anymore, I know my limits, but if I had one day to do anything and not deal with pain, I'd run. After my laundry, my chores, and my run, I would take a LONG HOT shower. When I got out of the shower, I would do my make up and curl my hair. Because of my adrenal issues, I sweat too much to wear make up, and my hair doesn't stay curly, because, well, sweat! Pre-Illness, before my extreme pain and illness really set in, I would do my make up and hair everyday. After I was dressed for the day, I would sit at my desk, and sketch, color, and paint. I usually have to craft in small increments, because sitting for too long causes pain, so I would love it if I was able to sit at my desk for a few consecutive hours! When I was finished crafting, I would go to the grocery store, buy food, come home and make my family dinner.. I would probably take my dogs on another evening walk, and love it! In this 24hrs, I would be able to put my head on my pillow that night, and just fall asleep, no meds, no tears, I would just sleep. I wouldnt fill my one day of normalcy with too much, wait, yes I would. Because when you deal with life long illnesses - a day without pain would be a dream come true, so I would just jam pack my day! You mean, I can do ANYthing I want, and I won't deal with horrible, horrible pain?!? Heck Yes, I am going to do everything! Again, I don't unhealthily long for a different life, I don't wonder everyday, I love my life, and I believe my pain has a purpose, but sometimes I wonder, what I would be able to do if I didn't live in pain. |
AuthorMy name is Madison, I have quite a few rare diseases and chronic illnesses. Archives
July 2019
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