Here I will begin by giving a very brief explanation to some of the facts about the acute and chronic phases of neuropathic pain, then I shall continue telling my story.
Neuropathic pain is strange, to say the least. In my experience, this was a blessing in some way! Past the acute phase, the pain behaves like a yo-yo, extremes of pain for a period followed by a shorter period of manageable pain. If it was not for this short period of reprieve, nerve pain would be impossible to tolerate, and it would become a suicidal pain.
As you shall see from my future blogs, my neuropathic pain progressed through different and overlapping phases. Early on there was the predictable phase. This was when any physical exertion would trigger my nerve pain, and hence I developed the fear of any physical activity. It also forced me to rest as much as possible. Then came the confusing phase. This was when my neuropathic pain would strike out of the blue, making me look back and try to find an explanation. In the third phase, the more I forced myself through my pain, the more tolerance I developed towards my nerve pain and the more I could perform.
Once my nerve pain hits 8 out of 10 on the pain score, it tends to persist for a few days before it goes down back to a tolerable level.
Neuropathic pain is one example of an invisible illness. When my pain was tolerable, and I was able to do things, people would remark by saying, ‘Oh you look good’ and assume that I have been cured. At its peak, my nerve pain would make me disappear and disconnect from the outside world – a lonely dark phase others do not witness. My disappearance would soon be noticeable, and people responded by disconnecting from me when I needed them most!
I would never for a second blame ordinary people for not knowing any better. But when it comes to medical professionals, especially doctors who specialise in pain management, I would expect them to know and to behave in an empathetic way towards me.