To see the introduction to this guide, please click here to see part one.
There was one morning in 2015 where I woke, supposedly ‘recovered’ from a nasty virus, with another headache. I resolved it was time to go to the doctor. Since then, I have had a nagging feeling of waiting.
The thing is – with most chronic illnesses - there are few scenarios where your life is in immediate danger. Chronic illness tends to be characterized by persistent symptoms which don’t cause an immediate threat to your life. They just suck. Sometimes, particularly with POTS, something weird will happen with the rhythm of your heart that will get doctors excited and moving quickly. In EDS – the complications can get so severe they really are life threatening and need emergency surgery. However, this is kind of a ‘1 in a million’ thing. To be honest – probably more – but there are no statistics - of course.
This common lack of life-threatening complication leads to you as a patient being continuously put on the ‘routine priority list' as they like to call it in the New Zealand public health system. This translates to a wait time of 4-6 months between asking for help and seeing the right doctor. if you're lucky. The final diagnosis and treatment point can be years away.
So, we wait. A symptom such as chronic daily migraine pops up, we see our GP (PCP), and we are put on ‘routine priority’. We wait. Our digestive issues get so bad we are vomiting every day. We injure ourselves to the point that we can’t walk. Routine priority. We wait. Because we are not dying, and someone else needs help more urgently. So ever since that say where I woke up with a headache for the 30th day running, I’ve been waiting. Waiting for a specialist to see me. Waiting for surgery. Waiting for test results. Waiting for the improvement of symptoms. There have been times where the waiting has become so preoccupying that I forget to live. It’s almost like I’m on the outside of my life looking in. Waiting for this to be over. Waiting for the end. For the next chapter.
In July of 2018, my partner and I got engaged. He planned the most elaborate proposal – at least on the scale of what my partner has ever planned. We went on holiday for a long weekend. We rented a little batch in a beautiful secluded part of the mid-North Island New Zealand. We ate at fancy restaurants. Slept in a comfy bed, and on the morning of our “anniversary” when we had been together 5 years, he popped the question. Of course, I was happy (though not altogether surprised). It was almost a given I was going to say yes. We were already committed to each other. We spent the day telling our family and riding a high.
But I was distracted.
Something about being away from routine was playing havoc with my body, which didn’t help. I had been waking early in the morning with my heart rate skyrocketing. I would have to take my heart meds, a large glass of electrolytes, and go back to bed until all of that did its job. Our holiday was marred by the fact that I couldn’t make it through a 20-minute stroll. Something I have never taken for granted again. I've never been able to do it again.
And – I was waiting for something. In a month from that date – I was to have my second heart surgery. A complicated heart ablation under general anesthetic. It was a surgery where they would insert a large needle right next to my heart and inflate a balloon to move a large nerve out of the way of the surgery site. They would then trace a surgical instrument through my arteries to my heart, a bit like a stent procedure, and burn off a cluster of nerves the size of a 50c piece. This was to stop my heart from beating in the wrong rhythm. I was nervous. Impatient. I had lived with an arrhythmia for nearly 2 years now. The first attempt at this surgery had failed, and I was ready for the whole ordeal to be over. So for this whole trip – the beautiful scenery, wonderful food, all my partner's painstaking planning - I wasn’t all-the-way present. Because I was waiting.
In short, the surgery happened, it “worked” and I put inverted-commas around that because while “working” it also made other aspects of my health worse. I’ve written about the time since that surgery, a month after this picture was taken. The learning experience of healing, and thinking. One of the other things I learned is that there is no point in waiting for the next thing to happen. If you’ve got a chronic illness anything like mine, with almost constant doctors appointments booked, new symptoms popping up just as quickly as others subside, there’s always going to be something to wait for. So just don’t. That’s been my philosophy for a while now. And it’s very freeing. This is our life. Chronic illness is a part of us. We can keep working. Keep booking those appointments. Keep hoping. But in the meantime, just live.
The act of ‘not waiting’ is no easy feat when you’re plagued by symptoms every day that you don’t want to deal with. That cause you pain and sometimes lead you to suffer. I think the act of ‘not waiting’ requires the practice of all the suggestions I have made in this 10 - piece guide.
To first grieve the loss of your old life. Of the old you. To allow that grief to continue coming in waves and accept it as it is. To practice self-advocacy so that your time is not wasted. To choose people to surround your self with who will support you to live in the moment a little more. To become literate about your illness and “know your stuff” so that you are always able to look for ways to improve your quality of life. This makes the waiting feel less like waiting, and more like doing. To take the good days and the bad days as they come, and not to overthink. To rise above that bullshit you can’t avoid, and let it be part of your life. Choose not to wait, as you choose not to suffer. Chose instead to just live.
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