The Hardest Thing I Do…

My Mom

Living with a CHD is hard sometimes. We deal with all kinds of issues. Often we are tired, sore, stressed about surgeries or procedures, in pain from those same surgeries or procedures, recovering while knowing that everything we went through is just a patch and that we will have to have another procedure somewhere down the line.  It’s tough and at times feels impossible.

For me the worst part of all of it, is not all the medical stuff. I can deal with that, it’s hard sometimes, but I’m used to it. I put my head down and bull my way through the bad days. I can push through pain and fatigue better than most people I know, I should be able to, I’ve had enough practice at it. For me that’s part of my normal everyday life. When I must have something done I just schedule it in and have it done. It doesn’t bother me that I have to go through these things, and I don’t stress over them. Maybe it’s my sense of humor, but I have fun when I have to spend time in a hospital.

For me the worst part of all of it, is right before I’m wheeled out of my room.  It’s dealing with my Mom. She is awesome and has always been there for me regardless or what is going on in my life. She’s also a worrier, I think all Mother’s are. I turned 40 this year and she threw a surprise party for me. At the party she gave a little speech and she mentioned that they thought I wasn’t going to make it to my 40th. I thought she was going to burst into tears. Even that isn’t bad compared to the look of fear in her eyes every time they roll me out of my room, on my way to another procedure or surgery. I don’t want her to worry about me. I don’t want her to have to live with the fear that I might not come back from where ever it is they are taking me. I also know that there is nothing I can say or do that will stop the worry and fear. Its break my heart moments like that and the fact that I can’t do anything to prevent them, that is the most difficult moments of dealing with my CHD.

No Reserves.

One of the things about having a CHD that is hard for me to deal with, is that I have no reserves.  What does that mean?  It’s simple in the same way a marathon runner has to push themselves to sprint the last leg of their race, I have to use my will power and push myself through the end of the day.  That’s a normal day.

Now lets take a day when I haven’t slept well, I’m finding out this seems to be common with CHD patients.  I might get 3 or 4 hours of sleep, a normal amount of sleep for me when I was young, now 4 hours to short a time.  The next morning I start out feeling like I did at the end of the day before.  Simply exhausted.  So now I don’t have to push for the second half of the day, now I have to push myself all day long and the later the day gets the more I need to push. This is what has forced me to stop working.  To have to start pushing after the first couple of hours, everyday is too much.  It’s detrimental to my health and I think I have enough health issues with out adding to them.

The other thing is being sick.  It takes more out of you. While others may be able to go to work and do their job with a cold, I can’t.  It just wipes me out and not just for a day, but for 2 or 3 days. Then when I do go back to work it takes me a week to get back to “normal”.

The annoying thing is that people with out CHD don’t get this.  They don’t understand.  We look healthy.  We don’t sound sick.  And many of us refuse to let our CHD stop us from living our lives, we just deal with it.  I try to explain it to them like this.

You know when you have a really busy day, where nothing seems to go right.  And you know how you might have a couple of those days in a row.  And you know what you feel like at the end of that, busy and hectic week.  Your tired and exhausted and just happy you made it through.  That’s how I feel at the end of a normal day.  Everyday.

Usually that kind of gives them an idea.  Sometimes they believe you and sometimes they just blow you off, it’s another part of living with CHD.

Waiting….

What do you do while waiting....

Waiting. We all do it. We wait in line at the grocery store, the department store and the DMV. Boy do we wait at the DMV. But none of this is what I’m talking about. This is all ordinary types of waiting. What I’m talking about is waiting in limbo. That time many of us have experienced where we have seen our doctor, taken some tests and are now waiting for doctors to get together and confer about our issues and what the possible fixes might be.

This is where I am at right now. I’ve had tests, my team here in Connecticut is compiling my history and recent testing and sending it up to Boston Children’s to be reviewed by their people. When they get the information they will get together in a group and talk about it. They may decide they need more information, which means more testing for me. Then they will get together again and review everything again and come up with a solution. What that means for me is a few more weeks or more of limbo.

I’ve been here before. I went through this same process seven years ago. They talked about the possibility of surgery and of transplant, while I sat around and waited for them to figure it all out. I know from experience that dwelling on all that dark stuff is stressful, to say the least. Do it too much and it will give you a nervous breakdown. So what do you do? How do you get through it? For me it’s been about filling my brain with new things. Looking at things in a different light. I could sit around and wonder why me? We all could. I don’t think anyone would blame us. Instead of thinking of this time in my life as a time of stress and worry. I choose to look at it as a time to learn, try to experience new things and do some old things I didn’t have the time for. After all I can’t work anymore so I have the day to do with as I like.  This is how I deal with limbo.

I go for a walk every morning (Doctors Orders) and I take three things with me when I go. My dog, Because no one likes to be alone and he needs the exercise to. My camera, because I love photography. And I take a sense of curiosity. I try to look at the world in a fresh way every day and I am constantly amazed by the things I get to see, simply because I am curious enough to look.

When my walk is finished I make myself some breakfast and look for new recipes. Lately I’ve been into baking. Apple crisps, pumpkin spice muffins, and rosemary garlic bread. The house has smelled delicious these past couple of months and I’ve had to be extra careful about my portion control. I go through any photos I took and delete or edit them.  Then I may hit Facebook for a while or bake, depending. I make myself lunch and pooped by now, eat and take a nap.

When I wake up one or two hours later I will pick up my guitar and play a little. I try to learn a new song every week. Then it’s either start dinner or Facebook for a while until dinner is ready. I am addicted to Facebook, so it’s always on in the back ground, even now.

After dinner I get together with a fellow CHD adult. A young man named Mark. Together we are currently working on an idea of his to start a Facebook group, for CHD Athletes. It will be a group to go and talk about exercise and nutrition as it pertains to CHD. We hope that it will inspire our fellow CHDers to be healthier and to do more in their lives. We will be promoting all types of exercise and working with CHD individuals to find workouts that they can do to improve their health.

By this time I’m beat and I may watch a little TV and go to bed. These are the things I do. The way I fill my day. The way I keep from thinking about the what ifs. The way I choose to keep the worry at bay. Maybe you don’t like to do some of these things, or all of them, I don’t know. But please, if you are in limbo…if you are waiting, find something, anything that you might enjoy and can do and do it. Remember, a happy patient is a healthier patient.

Yours CHD friend Jon