What do you do, when everything comes crashing down around your ears? I don't mean literally, of course, although I had my doubts while Corey was up in the "attic" crawlspace to install the ceiling fan we bought for our bedroom (go tax returns, yeah!) and trying not to fall through the ceiling.
I dunno. Sometimes it all just kinda hits me, you know what I mean?
What do you do when you hate every second of your disease, but it's so imprisoning that you can never forget that you have it for any of those hated seconds? I'm talking Ehler's-Danlos here, although Addison's has been giving me a run for my money lately too, trying to manage my adrenal glands manually. Always a tough challenge for me, even more so lately.
So do you just hate your life, then, because the two are so inseparable? Usually I try to wrap my world in beauty, to find it, create it, whatever I have to do. Sometimes, though, the cold stones that weigh in the pit of my stomach overcome me and all I can see, all I can feel, is the destruction of the life that I had, the life that we planned, the future of my personal dreams and our mutual hopes. And it's hard, really hard, to not hate your life when every moment is agony and you know that there's no cure, there's no hope, there's no remission, and it keeps getting worse. I try not to think about what it'll be like in a year, 3 years, 25 years, but when I'm huddled on the bed and sobbing into my husband's pillow while trying not to move because it hurts, I think about those things. I think about them, and I am afraid.
I don't want to do this. The weight of the agony that waits for me is too heavy a load for me to bear. It's scary, but more than that I hate hate hate HATE what this agony has done to me personally, to my husband, and to our relationship. I hate what it's going to do. I appreciate, in a circumspect way, how it's going to make us better people and probably already has--as is the nature of suffering--but that thought remains rather subdued.
When he came to bed tonight and I lay next to him, trying to relax and mayyyyyybe get some sleep (no sleep to be had this night, alas), I eventually spoke up. (Choked with tears, of course.)
"I'm sorry for being so sick. I hate every second of it. I think I hate it more than you do. I hate what it's done to our life."
He didn't respond.
Not a word.
In my time of desperate emotional need, he stayed completely and 100% silent…
…except for the soft and sudden rustle of bedsheets as his foot sought out my two feet, entwining them beneath his leg and covering them with his own as he rubbed his instep against the top of my foot a few times.
All I could do was blink away the tears, sigh softly, and let this renewed sense of peace settle deep into the center of me where I will lock it away tightly and hold on to the hope that it's going to be okay… somehow. Three feet of peace--my two feet and his comforting one-- to remind me so.
"I love you."
"I love you too, lady."
I dunno. Sometimes it all just kinda hits me, you know what I mean?
What do you do when you hate every second of your disease, but it's so imprisoning that you can never forget that you have it for any of those hated seconds? I'm talking Ehler's-Danlos here, although Addison's has been giving me a run for my money lately too, trying to manage my adrenal glands manually. Always a tough challenge for me, even more so lately.
So do you just hate your life, then, because the two are so inseparable? Usually I try to wrap my world in beauty, to find it, create it, whatever I have to do. Sometimes, though, the cold stones that weigh in the pit of my stomach overcome me and all I can see, all I can feel, is the destruction of the life that I had, the life that we planned, the future of my personal dreams and our mutual hopes. And it's hard, really hard, to not hate your life when every moment is agony and you know that there's no cure, there's no hope, there's no remission, and it keeps getting worse. I try not to think about what it'll be like in a year, 3 years, 25 years, but when I'm huddled on the bed and sobbing into my husband's pillow while trying not to move because it hurts, I think about those things. I think about them, and I am afraid.
I don't want to do this. The weight of the agony that waits for me is too heavy a load for me to bear. It's scary, but more than that I hate hate hate HATE what this agony has done to me personally, to my husband, and to our relationship. I hate what it's going to do. I appreciate, in a circumspect way, how it's going to make us better people and probably already has--as is the nature of suffering--but that thought remains rather subdued.
When he came to bed tonight and I lay next to him, trying to relax and mayyyyyybe get some sleep (no sleep to be had this night, alas), I eventually spoke up. (Choked with tears, of course.)
"I'm sorry for being so sick. I hate every second of it. I think I hate it more than you do. I hate what it's done to our life."
He didn't respond.
Not a word.
In my time of desperate emotional need, he stayed completely and 100% silent…
…except for the soft and sudden rustle of bedsheets as his foot sought out my two feet, entwining them beneath his leg and covering them with his own as he rubbed his instep against the top of my foot a few times.
All I could do was blink away the tears, sigh softly, and let this renewed sense of peace settle deep into the center of me where I will lock it away tightly and hold on to the hope that it's going to be okay… somehow. Three feet of peace--my two feet and his comforting one-- to remind me so.
"I love you."
"I love you too, lady."
Dream | April 23, 2015 at 11:21 AM
I know apologizing for your situation doesn't make it better, yet, I'm still very sorry you are going through hard times, hun. But at least you are not going through it alone, you have a very special someone that loves you no matter what and that is incredible. I wish you all the luck in the world and I'm sending you happy vibes your direction. I miss you.
I'm in town up until May 4th or 6th then I leave to Alaska. I wish to see you and try, try VERY hard to add at least a little bit more beauty into your world, so you can add it to your collection. Because you deserve it. :) Keep being tough, keep being strong. You helped me so much and now I wish to do anything to help you. I know it may not seem much, it just may seem like typed out words to you and your are right, these are just words, but I at least mean every word I have said. And if I could do more, I would. Hope I can see you before I leave.
Anonymous | June 5, 2015 at 1:06 PM
I just discovered your blog. I too have Addison's Disease. Along with the Addisons I have Sjogren's, Graves Disease, Restless Leg, Neuropathy, Erosive Inflammatory Arthritis, Osteoarthritis and Chronic Migraines. Aren't we the lucky ones?!?!?!? I so understand
this post that you wrote. I feel the same. It's bad enough now. Don't even want to think about 5 or more years in the future. We just plug along doing what we can to tolerate these stupid diseases because they can't be cured. Good luck to you. I will be reading your blog. It is very good. Take Care * Bobbie
Cassandra | June 10, 2015 at 2:44 AM
Bobbie, thank you for stopping by! Yep, we are sooooo "lucky" LOL. I have some AI diseases along with the Addison's, as you do, and I know that it's a challenge. Can't even think about 5 years from now! But you're right-- just plug along. What else can we do? Thanks for the compliment, look forward to your continued comments :)