In recent months, there is one particular post that I wrote in July 2010, that keeps getting constant hits from search engines every day, so I decided to repost it here for anyone who may have missed it back then.

It’s A Long Lonely Road For Them Too

Imagine having a friend, a best friend, the absolute best person in the world that you enjoy every minute that you spend together. A person that you confide in, share you deepest thoughts, dreams, wishes and fears with. Someone you instantly think of to call when something happens in your life, funny or sad. Someone who when you think of doing something fun, that’s the person you want to do it with. Someone that if you could, you would spend twenty four hours a day with them.

Now imagine that you do have that best friend in the world, and you are deeply in love with them. They are your life, your everything, and they in turn love you back and feel the same about you. Does that sound like everyone’s fantasy? Well, I’m living that fantasy, and have been for the last twenty eight years.

My wife is my best and closest friend. And I know how blessed I am to have her in my life. She has been there for me in everything. Everyone says that their spouse is their rock. My wife is not just a rock, she’s the entire foundation. She’s there when I am being careless with my health, reprimanding me when I absent mindedly scratch my nose (which I constantly do) because my immune system is suppressed. She always checks in to make sure that I take my meds on time and eat when I am supposed to. She keeps me on my feet to make sure I am taking care of myself, so as she says I “can stick around for a few more years”.

In reality though, although as a person suffering from a chronic illness, true you are the one with the aches, pains, feeling crappy and having to take tons of medicine and constant blood and medical tests. But on your loved ones it is harder to some extent, because they are the one with the worry and stress.

When I had my open lung biopsy, I was in the operating room for five hours. I was out and didn’t have a clue what was going on, but my wife was the one that sat in that waiting room wondering what the hell was going on. Same for when had the hole in my heart repaired and the defibrillator implanted. I was out and she was the one waiting, looking at the monitors to see what stages I was at for each operation, and wondering if I was going to come out alive (all operations have the risk of fatality).

Now that I have heart failure, our lives have changed. We work together and used to share the work 50/50. Now it’s more like 75/25, or even 80/20, with my wife taking a lot of the load.

Every time my heart has an irregular heart beat, it feels like my heart is just having it’s own little party in my chest. It’s not painful but it’s hard to breath and I am very aware of it. It lasts about a minute or two until it regulates itself or the AICD sends little shocks to it to make it behave itself. And when this happens, if my wife is next to me, she just simply holds my hand and gives me strong, silent support until it passes. When I am alone and it happens, I find my self missing that hand holding mine.

We used to travel a lot before all this stuff happened to me, but now I get tired easily. I try to push through and pretend I’m okay, but she knows. She says I am getting those fading eyes, and she insists that I go take a nap. I need to nap every day after lunch or I am no good to anyone. Because of this, we don’t go for those long drives exploring new and different places that we love and used to do.

And through all this never once has my wife ever complained. I have seen the strain on her at times, but she never complains or loses it with me when she is over worked. It is a remarkable trait. Many couples are not able to make it through times like these, and I guess that is because their love really was not strongly founded in the first place. But for those that are able to push on, for those of you with debilitating chronic illness, just remember, it is not you alone that is suffering. Many times your partner has it harder than you. You have their support through out all of this, but who is supporting them? It is a long, tough, lonely journey for them. Every once in a while, always remember to say thank you. Tell them (and mean it) how much you appreciate all that they do. And co-operate. When they are “bugging” you about taking care of your self, it’s for your benefit.

And to my wife, I say – Thank you beautiful. I deeply appreciate every single thing that you do for me and for us. I pledge to take better care of myself so that I am here longer and so we can grow old together. You are my rock, and my everything. Of all the medicine and vitamins I take, just knowing you are here with me through all this is the most effective medicine I can ever have. I love you.

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Filed under: Family, Life, Sarcoidosis, State of mind, Surgery Tagged: | Acceptance, Death, heart disease, Heart Failure, life, Love, Sarcoidosis, Stress