When you’re chronically ill you have an intimate understanding of how fragile the human body is because you live with it every minute of every day. It doesn’t matter if you’ve been sick for months or years, you’ve lost your health and with it has gone the carefree days of never considering your body in your day to day life. In fact, your life is quite the opposite, your body makes all your decisions for you, whether you get out of bed, whether you eat, whether you work, or even see friends and family. This hyper-awareness of just how vital and easily lost health can be; makes the thin line between life and death something we know as well as our own name.
For most healthy people death lives in another country. It’s far away, a foreign concept that they only really think about on the rare occasion that it comes to visit their area in the form of someone close dying, getting a dangerous disease, or a fatal accident. For me, with a chronic illness, death is usually a polite housemate. I live with him every day, I always know he is there, but he does his dishes, cleans up after himself and is for the most part pretty quiet. Lately, however, his manners have deteriorated, he’s leaving dishes in the sink, hogging the remote, and waking me up at night with loud parties. Chronic illness is like this sometimes, it goes through phases of maintenance and then it goes sideways. I’m in a sideways phase.
Not this again!
You see, I have dysautonamia, among other things, and it affects things like body temperature regulation and my heart. Right now my heart is all over the place. Usually, my problem is very low blood pressure and I also have POTS, but right now my blood pressure and my pulse have been running both really high and really low to such extremes that my cardiologist has decided to run tests that were run just one year ago. The first was wearing a heart monitor, which I’ve already done and the next is a chemical stress test, which is highly unpleasant. Last time they came out slightly abnormal, now, of course, they are looking to see if anything changed. In the mean time, I have to say that having your heart constantly on Mr. Toad’s wild ride is beyond exhausting. I really feel like my body and I are completely disconnected and I know intellectually that having trouble with the heart is a very dangerous thing. This is on top of all the other symptoms my body fights with on a daily basis. So, it’s got me thinking, but not in the way you might think.
Living with chronic illness and the awareness of your own mortality gives you a clearer perspective on life. You’re aware that life is fragile and precious, that your time is limited and how you spend it is extremely important. As you begin to accept these facts you start making more careful decisions with your life. You pick and choose who and what you spend your time on. You’re more mindful with your words and your actions. You really appreciate the small moments of joy that appear in your life. You treasure the small acts of kindness that the people in your life take time out of theirs to do for you. We know better than to leave loving words unsaid or leave a situation angry. Chronic illness isn’t exactly a gift, but it does provide a certain kind of awakened perspective that allows us to live more in the moment than the average person. That is a gift.
I know that I make choices every day that enrich my life. I’m very careful about whom I spend my time with and more importantly who is in my life. Even if I’m not feeling entirely well I always make the effort to spend time with my family. Everyone I love knows how much they mean to me…in detail. I make great efforts to still travel and go to concerts when I can so I still have joy in my life. “I love you,” is a phrase I speak often with no need for reciprocastion, greetings and goodbye’s with everyone even with family that I share a house with. Living with chronic illness is a hard road, but it has allowed me to live a more present, compassionate, and mindful life. So that, should that line between life and death blur from one minute to the next, I will have no regrets. For that, I am grateful.
Then Everything Changed 
My reality so beautifully expressed. Thank you
There are times when I only want to die, leaving the pain behind me. If you haven’t experienced the pain, how can you know how and what I’m feeling? The seething, writhing shots of nerves, the sheets of horrific aching all over my body is incredibly unpleasant. Trying to get in and out of an uncomfortable bed and trying to sleep in between the two exercises while dead skin from psoriasis makes me itch. And on top of it all, dealing with all the emotional setbacks of clinical depression riding on me. I worry about my family having to take care of me. When does it quit? When do I get a break from it all. I used to be a bubbly optimist, but now most of my bubbles have popped. I hurt in so many ways, I can’t explain. I feel bad for letting any word out telling others about it.
I’m sorry you’re feeling so hopeless. I know how pain affects us and runs our lives. Hope you can find some relief soon. When I get overrun with pain and feel like I’ll never get away from all this unless there was death. I’m only telling you all that to let you know I do understand what you’re going through. These illnesses can have my body but I am still aware of the important things. How I do it is think of my “Heart’s Song ” that’s the part of you that makes you who you are and stay in touch with it for example my “Heart’s Song ” is my love, concern, and compassion for animals. I was a Veterinary Tech befor I got sick and couldn’t do it anymore. I would have to rethink ways to be true with mine. I did volunteering at a shelter twice a month running the pet food bank and that was great but eventually couldn’t even do that anymore. I started a Facebook group for lost and found pets in my community, it has been a great success we have a 75%rate of success, it may not sound like much but I’m helping and doing something that helps me stay in touch with where my heart is, this helps give me purpose. Sorry this was so long but I empathize with your pain and struggles.
Vicki, “It doesn’t sound like much?” Wrong. You are doing something wonderful to help reunite families with their lost pets, who are dearly loved and missed. Thank you for what you are doing. I’m glad it helps you to deal with your pain.
Among my other issues I also have dysautonomia and POTS. It’s been an adjustment but I’m working on retraining myself, my heart rate goes from a resting 80 hr to 140 bpm in ten minutes of being up just walking no excessive activity. But this is the one thing I have that I can be proactive in my treatment. I definitely think what you said about death was perfect. I’m not afraid if death either but do try live my life in a regretfree manner.
My BP is 80/50, while my HR is 120,,I,run a constant fever between 99.5 & 100.5. I have CRPS times right-years and sometimes forget how badly I Burt until I start to burn and shock. I take so many,meds my husband has to track them all because I have such brain fog I can’t handle it. I tell my family and friends I love them constantly. I pray every night to die. I’ve attempted suicide twice. I just don’t want to live with the pain anymore. I love this blog because I always identify with whatever topic is written. I pray,death is near at hand for me. Maybe my heart will just stop beating from the stress of such a low BP and high HR. I can only pray.
Have you been dx with dysautonomia? That’s what my bp and hr do. Sorry you feel so discouraged.
Sorry for the errors. Eight-years for CRPS.
I appreciate what everyone has said. I think we have all had a moment, or many moments, where we think death is the answer. Personally, I’m worried if I were to take my own life the pain might come with me. Ghosts and all.
But I also really appreciate what I have learned since being sick as well. I’ve learned to slow down, look at the world, and what place I have in it. I’ve learned about how to choose people who will lift me up, and not waste time on anyone who won’t. I’ve learned how to express my emotions to those people, and be honest about how much I love them. It has been a huge change for me. Slowing down my life, yes it has been a gift. I’d have liked it in a different package of course, but this is what I have. My one life. I’m doing my best moment to moment to enjoy whatever time I have left with the people I love, and who love me.
Very well said!
Reblogged this on Brachial Plexus Injury.
So recognizable. I have a similar attitude towards death. Wrote about it in https://irelandms.com/2014/09/20/deathfearful/
You write so beautifully! I love your metaphor of an unwanted visitor–how very apt: “sometimes quiet, but lately throwing a loud party!” Very well said, indeed. My illness is also always present. I share some of your illness, and you and I seem to be undergoing some of the same tests of late. It’s my path right now to read and somehow “hear” words written/spoken to the many being while is as if being written/said directly to me. Thank you for your words this morning. I heard you loud and clear; I, too, and changing my life (and words, and actions, and attitude) to reflect who I want to be. I yearn to be a better Juli Wordgirl to gain the respect that chronic pain/illness doesn’t presently garner, but it does earn by right of its existence. Have a blessed and restful day, Leitis23. I’m Juli Wordgirl; I say Word Up! because it’s from a cartoon that used to be on PBSKids–Word Up! means “fight on” in my mind. (It actually means “define words” but it’s all the same thing, right?) People can still see some “Wordgirl” shows on YouTube. They are hysterical (in my opinion). Anything to make us laugh these days . . . . Word up!
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beautiful post! it is hard to admit it because I don’t feel like owning sth to a disease that took so much from me, but often it seems to me that it made me a more considerable person.