I am going through a strange phase of my illness at the moment. The illness is still there, the flare ups are still there and the heart is still getting worse. The illness in itself is quite stable, in its unstableness.
The strange phase is that for the last two and half years, I have basically been a full-time hospital patient. I have averaged around three hospital appointments a week and I have had countless admissions to A&E by ambulance, surgery’s and tests.
Now however, I have reached a point where most of my doctors have done what they can. They have carried out the tests, they have diagnosed the conditions and where appropriate, have tried medication. Now, for the most part, there is nothing the doctors can do apart from keep an eye on me, so I have gone from all those appointments to probably only one a week. I have been left to fend for myself.
Very rarely now do I even go to hospital when I have a really bad angina attack. Instead, we treat it at home. All of a sudden I have vast amounts of time.
I went from working full-time, to very abruptly becoming a full-time patient, to now, just being ill. I have to be honest, I really don’t know what to do with that. What do you do with just being ill?
When I was working I had lots to sink my teeth into. When I was a patient, before we had a diagnosis, I did lots of medical research. When I finally got my underlying diagnosis, I did even more medical research.
Occasionally, there is new research published about one of my conditions and everything goes into overdrive for a couple of weeks… Until my doctors tell me that I am clutching at straws and they share the reasons why it won’t work on me. Then I am left with just being ill.
The big step now for me is to spend some time to learn my limitations within my, “just being ill” state, and to figure out what that means for my life. While the doctors can’t help it, that doesn’t mean I have given up and one way or another I will forge out a life for myself.
On my good days, I am writing my PhD. On my bad days, I knit for homeless people. I am trying to push myself to do more within my physical limitations. To avoid operation number 2o, I am desperately trying to strengthen my ankles, which involves painful physical therapy. I also have started to do ballet, which is really enjoyable, and actually a lot gentler than you might think.
Of course, as this is a degenerative condition, there is always something new going wrong to look at. But, it is also an acute reminder that this state of just being ill, may actually be as good as it gets, and I have to make the most of it.
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Thinkstock Images By: Mike Watson Images
Rebecca developed a rare heart condition called Prinzmetal’s angina in July 2014. She has also been diagnosed with Ehlers Danlos Syndrome which results in, osteoarthritis, autonomic dysfunction, widespread pain, chronic fatigue and secondary Reynaud’s phenomenon.
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