"These symptoms are not dangerous, they're just uncomfortable. Nothing bad is happening."
I remember that statement annoyed me a lot when I was first diagnosed.
Although in theory, it makes sense, in practice, it was quite different. I needed to watch my symptoms often to not get a flare-up.
At first, I used to push through since I knew that they weren't “dangerous”. And that resulted in me overdoing it by walking or standing more than needed.
Then, I had a fatigue crash and felt terrible for the next few days. And so the cycle repeated, but each time it took longer to recover. Quickly, I learned that these symptoms were bad and needed to be avoided.
When I felt my HR going too high, I would stop that activity, go home, or sit more, etc. This seemed to work in the short term, but it felt like my threshold was getting smaller.
It's like I couldn't win, and the more I focused, the more anxious I became about the symptoms and the damage they could cause.
I wasn't winning either way, so I decided to try something new. When I noticed that my HR was higher, I would switch my attention to my breath instead of focusing on my symptoms.
I would repeat to myself that I'm safe and nothing would hurt me. In the beginning, I still wouldn't stand for long periods and overdo it, but by doing this, I noticed that I was soon able to stand for a few seconds longer and then a few more seconds and so on.
When I felt unwell and would work from home, I tried to focus on the work. In the beginning, it was hard. I worried about the consequences of flare-ups and not resting, but eventually, it became easier, and I could push the boundaries more.
I say all this, not to advise you to ignore your symptoms, but there's a delicate balance that everyone has to be mindful of when it comes to listening in to your symptoms.
Our bodies are sending important signals that we need to pay attention to. So it is important to respect that, but in my case, I was getting hypervigilant.
What has helped you in tuning into your symptoms but not getting hypervigilant?
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