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Why Having a Chronic Condition Makes You Rethink Your Daily Routine

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I wanted to write about what it is really like to live with a rare illness which is causing a chronic cardiovascular condition. Avid readers of my blog know I love a good quote. Well today it’s not from a doctor or a philosopher, today it’s from Rocky Balboa.

“The world ain’t all sunshine and rainbows. It’s a very mean and nasty place, and I don’t care how tough you are, it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain’t about how hard you hit. It’s about how hard you can get hit and keep moving forward; how much you can take and keep moving forward.”

That pretty much sums up every day with a chronic condition. My cardiovascular condition is part of a wider problem, a rare genetic connective tissue disorder called Ehlers-Danlos syndrome (EDS). I have type 3. This means I don’t just have the heart problems, but also autonomic dysfunction, widespread pain, chronic fatigue, osteoarthritis in all my joints, spontaneous joint subluxing and dislocation, secondary Reynaud’s phenomenon, vascular spasm in my brain resulting in parkinsonisms, migraines and this list could go on forever so I am going to stop there.

The heart problems affect every single thing I do, even something as simple as walking the dog or sleeping. Let’s focus on walking the dog. In an ideal world, I would take her up to a nice common a couple of miles away and walk through the forests, appreciate nature, the greenery and the vast space. Sounds idyllic doesn’t it? However, my husband’s at work, so I am doing this on my own. What if today is the day that one of my arterial spasm completely cuts of the blood flow to my heart and my angina turns into “the big one” — a heart attack. That lovely common doesn’t have many people around to call an ambulance if I collapse. If someone does find me, the common is away from the road, so it would take paramedics longer to get to me or they would have to call the air ambulance and there is no immediate access to defibrillators at the common. So I stick to my normal route, on the pavement, by the road through where I live — there are plenty of people around to call an ambulance if I collapse. I go into the small park that is by my house because I know within 50 yards of that park there are a set of defibrillators.

My heart issues also affect my sleep. As I lay awake in bed with severe angina pain, I wonder if I should wake my husband to get him to call an ambulance and face the inevitable. The explaining Prinzmetal’s angina to doctors who stand over you and say, “This is fascinating. I have only read about these cases.” The poking and prodding with needles of someone trying to cannulate me. You see, my veins don’t respond like everyone else’s. They close up, disappear, rupture, spasm; they will seemingly do anything to prevent cannulation. The hope that someone might accidentally stumble on a drug or dug combination that works to stop the spasms in my exhausted heart. Instead, I lie awake, in pain, hoping I get to see the morning, hoping this isn’t “the big one.” Of course this is not a rational, sensible thing to do. But, at 5 a.m. when you haven’t slept and are in excruciating pain, rationality and common sense seem to be the only part of you that is asleep.

Of course, I am British and have had it inherently ingrained into my very being that one should never show weakness. So I don’t talk about the angina pain. I have become incredibly good at hiding it, glossing over everything and adapting. However, sometimes I can’t hide it all. My husband bought a Harley last year, and during one of the times at the dealership I had a particularly bad angina attack. The poor Harley guy thought I was going to drop dead in front of him; I think he was almost as pale as I was. Having a cardiovascular condition effects every single part of your life, even the times when you are not having angina attacks, which for me are few and far between. Yesterday, I had 27 separate angina attacks. It affects how you think, how you view a simple trip out, how you live your life and even how to cut your hair. I now have short hair because the treatments are making my hair start to fall out.

As I said earlier, the angina is part of a wider connective tissue disorder, one I know is not going to get better. It is a progressive disease that will get worse. One of the worst things about having a progressive disease is imagining in what ways it will get worse. Unfortunately, many progressive diseases don’t actually have a progression path, and it manifests itself differently in others. I know I am having problems with my spine, as well as other joints and I am just starting to use a wheelchair on a part-time basis to help. I know I have severe and untreatable coronary artery spasms and possible microvascular spasms as well. Recently the idea of revascularization (heart bypass) has been brought up again. That is a huge operation for anyone, but for someone whose joints dislocate because they rolled over in their sleep, it puts a massive complication in the way. The vascular spasms in my head could easily cause a stroke, and they are very painful when they happen, usually in the form of a thunderclap headache. Of course these are the big things. Then there is the day to day pain of dislocating joints, of torn ligaments, of frostbite because of Reynaud’s, and the exhaustion, because for 24 hours a day, I am fighting against my body.

Despite this, I remain very positive and optimistic about my future, although I don’t really know what my future looks like yet. For me the best defense against the day to day drudgery and pain of chronic illness is a sense of humor, keeping busy and a very understanding family. I also believe that giving yourself permission to have down days is really important. If you bottle all your emotions up and feel guilty about being sad, angry etc., then it eats away at you. Let yourself be angry — give yourself a day every now and then, to shout, scream, cry and get it all out. It is OK to be upset.

After all, in some ways, coming to terms with chronic illness is a little like grieving. But you are grieving for yourself, for the loss of your old life, the old plans, hopes and dreams that you had, that have now changed unrecognizably.

Follow this journey on From the Heart

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

Originally published: May 26, 2016
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