Let me start out by saying (unlike Carley Simon's song....which I think really is....) this post is not about any of you, it is most certainly about me.
I have to say that the question in my subject line drives me up a fucking wall. To explain why such an innocuous comment would drive me to profanity (like it takes much) I need to give some background information about me. First of all I hate to lie and really don't like those who do. Second I strive in life to be happy and make others happy. If you put these two edicts of mine together and couple them with my subject line they are unfortunately at odds.
See the real answer is I'm not doing well, not at all and I know my friends and family wish I were. The truth is I don't even want to wake up in the morning, not because I don't want to live but because its really hard to do so. The truth is hard to hear and I don't like having to tell people so I say as good as can be expected, or making due...getting by....etc..
See the truth is....right now the best moment of my day is the brief seconds right after waking up; just before my first attempt to breath in, when my breath is still shallow and I have not yet moved. In that moment there is no coughing, there is no muscle ache, no pressure and pain in my head. In that moment all is fine and I am good, and I try to hold onto that moment for as long as I can each day. Because the truth is it's all down hill from there. Once I start to move the clearing coughs begin followed by the deeper coughs, the muscle starts to ache, the head pressure begins, the gurgle and rattle of my chest begins its haunting melody. These days I can't even get up in the night to go to the bathroom without it being a major deal with the coughing and gasping. Hell I don't even like to roll over in bed because the coughing starts and it will wake up poor Denise who is just trying to get some sleep before work. And have I mentioned I have a damn O2 tube hanging out of my nose all the time that keeps getting caught on things!
But the question pisses me off the most because I hate that my main characteristic right now has to do with health or more precisely my lungs and CF. I have accomplished so much in both in my personal and professional lives that I am proud of despite or maybe in spite of my CF. Pretty much everything and anything I have ever set my mind to I have seen through. Over the years I have developed a breadth of knowledge in sports, exercise, psychology, nutrition, bodybuilding, design, engineering, manufacturing, computing, continuous improvement, government, health care, the list goes on and on (well not too much farther really...) but right now none of that matters. Now when people call we are more likely to talk about my health than to discuss other issues and its obviously on my mind more than anything else anyway. It sucks to let people know that this disease is sucking all the real joy out of my life, that my body is really failing me now.
So I'm sure it's no big surprise to anyone that I have unfortunately been becoming more and more withdrawn, and I know it's not good. I know People showing their concern for me is a good thing and a testament to the life I have led. So I'm putting this out there so you all understand a little more of what's going on in my mind and to explain why I may not have answered the phone or called you back right away and to say I'm going to try and do better.
We are one week away from the transplant evaluation now and it will be great to get that behind us.....
See I told you it was about me....LOL
I hate that question too. Waiting is do friggin' hard and at times I wish that people would follow me around for the day to see all that we have to do at this point just to do normal things like shower and get dressed. I'm there with you.
ReplyDeleteNow a few thoughts from the wife of the man that has accomplished so much and will continue to:
ReplyDeleteYou’ve been wondering when I would post something so here you go…
I believe that only those that have health issues for years can truly understand what you are saying. I do understand that you don't want people associating you with the condition you have because I don’t want it for myself either. I know that this is one of the reasons that brought us together. We understand each other on a much deeper level than the average couple. You have taught me how to be a tough person despite anything going on. I still have a tough time keeping that mindset but I think I’ve gotten much better. As you would say “Screw it, we can get through it, hammer it out and move on to the next thing!” That is what we will be doing albeit much more intense!
Some days I get so excited thinking about the new life we will have. You, being able to go for a walk (hell, I’d even run a marathon if necessary), play in the snow with the dogs and I must admit, it will be nice when you can do more of the household chores! *wink wink* I’m tough, your tough and we’ll make the best of it no matter what the outcome is.
Other days I just don’t know what to do with myself. I feel like if I curl up in a ball with mom’s afghan and sleep somehow it will make this easier or even disappear. Then I wake up and it’s still here and it bites!
The thought of not having you by my side hurts so deep down inside that I can’t even explain it. I wish there was something I could do to make you feel better. It is extremely hard to sit and just watch you gasp for air and not be able to do a thing!
Ok, I’m getting weepy!
Love you!
WOW! First. . . I love this post! It is really a glimpse into how you feel. . really feel, and it's important to be understood. I was the same before transplant. Life sucks! I even stopped wanting to waste my energy on talking (and I love to talk). My peaceful moment was when I would breathe out and there is that millisecond before I had to force my lungs to bring air back in. . . I had that tiny second to feel peace in my lungs. I was put on a bi-pap and that did some of the work for me.
ReplyDeleteSecond.....your wife is amazing! It takes people who I believe are stronger than we are to love us, support us, and stay by our side. Her response to your post brought me to tears because you can feel her love for you in her words. Also because I know I put my husband through all the things she is feeling, it's tough for them to watch CF take over our bodies as it is tough for us to watch what it does to our loved ones. I promise to never ask you how you're doing. . .cuz I already know! :)
Thank you for sharing this! I believe it will help others to understand you a little bit more.
ReplyDeleteSince i know how much you LOVE mushy stuff, I will simply say this: I love you. That's it. Take it for all that it means. That being said, know that I always wonder how you are doing, think about you, and say prayers for you. If you want to share how you feel, I know you will. Otherwise, I expect you to keep me posted on the latest and greatest gadgets, BMW's, politics, and Sheldon quotes, etc.
To me,you are more than your CF; you are my Sheldon. LOL. I expect to see some personal reviews on the iPad from you.
BTW...Denise is absolutely fabulous! You have a great wife and her comments are a testament to the partnership you have. Hurry up and get this transplant behind you so you can help with the chores. =)