For Now, the Pain Is Receding

It has been a very long week.

As I write this at 4 p.m. on Friday afternoon, there are finally signs that things may be starting to turn.

I have no idea what tomorrow will bring. I do not know whether this improvement will continue, whether the pain will flare up again, or what challenge PSP has waiting around the next corner. But for the first time in days, it feels as though the pain is beginning to retreat rather than advance.

The long-term medication appears to be gradually taking effect. The dose of Gabapentin has increased significantly since we started, with further increases still to come, and the pain now feels duller, less sharp, and less overwhelming.

It is certainly not gone.

Managing severe pain often involves powerful medications, difficult decisions, and a great deal of trial and error. What works for one person may not work for another. In my case, one medication we tried caused a very negative reaction, while another appears to be helping.

Every patient is different, and I am not offering medical advice. My experience is simply that there are treatments available, and sometimes finding the right one requires patience, persistence, and expert guidance.

I know my GP consulted both a pain management specialist and my neurologist and psychiatrist. It was reassuring to discover that there are experts who truly understand this field and who devote their careers to helping people navigate it.

My hope is that I can now rely less on opioid medication, which I have used only sparingly during this episode. I have been struck by just how powerful those drugs are. They do not merely affect pain. They affect mood, thinking, and perception as well.

They can be enormously helpful when needed, but they have also given me a greater appreciation of the challenges faced by anyone who depends upon them.

More than anything, this week has taught me about pain itself.

Pain narrows your world. It dominates your thoughts. It makes it difficult to focus on anything else. Yet it has also reminded me of something far more important: how fortunate I am to be surrounded by people who care.

I have been supported by outstanding medical professionals, including my GP, my neurologist, my psychiatrist, and others involved in my care. I have also benefited from the wisdom and generosity of friends who happen to be doctors and who have willingly given their time, advice, and encouragement.

Most of all, I have been reminded of the extraordinary people closest to me, who have carried me through some very difficult days.

To all of you, thank you.

More than I can adequately express.

This week has also reminded me of something else.

We are capable of facing challenges that once seemed impossible. We do not choose many of the battles life gives us, but we can choose how we respond to them.

For me, this week has reinforced why that fight is worth it. The love of family, the support of friends, the chance to continue finding meaning and purpose, and the opportunity to contribute in whatever ways we still can make the struggle worthwhile.

Pain may narrow our world, but it does not have to define it.

The pain has not disappeared. Chronic pain remains part of my reality, just as PSP remains part of my reality. But I feel as though I have learned some of the basics of living with it. I have chosen a strategy. It may not be perfect, and it may need to change over time, but for now it is helping.

Pain is, of course, a much broader issue than PSP. Millions of people live with chronic pain arising from countless different conditions, many of them invisible to those around them.

To that end, I recently wrote an article for The Times of Israel, “Chronic Pain and the People Who Cannot Describe It.” Some readers may find it useful, particularly if they do not regularly follow this blog:

https://blogs.timesofisrael.com/chronic-pain-and-the-people-who-cannot-describe-it/

I hope that science continues to move forward and that better treatments for chronic pain and PSP arrive sooner rather than later. Too many people live with these challenges every day.

PSP is progressive. I know there will be more obstacles ahead. That is simply the nature of the journey.

But after a week like this, I have learned not to underestimate the value of a small victory.

For now, the pain is receding.

And for now, that is enough.