In aid of Heart awareness month which is all February I wanted to write a blog post about what it is really like to live with a chronic cardiovascular condition. Avid readers of my blog will know that I love a good quote, well todays is not from a doctor or a philosopher, todays 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, more than likely a connective tissue disorder, so I don’t just have the heart problems but the heart problems do take over.
The heart problems effect 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 that is 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 husbands 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 – I know within 50 yards of that park there are a set of defibrillators.
Sleeping – well last night is a great example. 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 about 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, they disappear, they rupture, they spasm, they will seemingly do anything to prevent cannulation. The hope that someone might accidently stumble on a drug or dug combination that works to stop the spasms in my exhausted heart. Instead I lie awake, in pain and hope that I get to see the morning, hope that this isn’t ‘the big one’. Of course this is not a rational sensible thing to do, and I will get told off by husband for not waking him when he reads this, but at 5am when you haven’t slept and are in excruciating pain rationality and common sense seems to be the only part of you that is asleep.
But 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 pain, glossing over everything and adapting. However sometimes I can’t hide it all, my husband brought a Harley last year and one of the times at the dealership I was having 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 me.
As I said earlier the angina is part of a wider connective tissue disorder, one that I know is not going to get better, it is a progressive disease that will get worse. One of the worse things about that is imagining in what ways it will get worse because unfortunately it doesn’t have a set progression path and manifests itself differently in others. I know that I am having problems with my spine, some people with connective tissue disorders are in wheelchairs. I know that I have severe and so far untreatable coronary artery spasms and possible microvascular spasms as well, recently the idea of revascularisation (heart bypass) has been brought back up. That is a huge operation for anyone, but for someone who’s joints dislocate because they rolled over in their sleep, its put 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, the day to day pain of dislocating joints, of torn ligaments, of frost bite because of Reynaud’s, the exhaustion because for 24 hours a day I am fighting against my body.
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 effects how you think, how you view a simple trip out and how you live your life. I now have short hair because one of the treatments made my hair start to fall out. So during February please spare a thought for those with cardiovascular problems, both chronic and acute. Or if you are feeling generous I would urge you to donate towards cardiovascular research or the local charity that I support, please click here. I would love to fill the area with defibrillators so that I don’t have to spare a thought as to where I walk the dog.