“You don’t know what you’ve got till it’s gone” goes the saying. It’s intended to caution those who might be taking something good in their lives for granted.
I experienced the opposite of that recently, and it made me realize how much we’ve gotten used to, or even think of as normal, after so many years of living with multiple sclerosis (MS).
Accepting Symptoms vs. Ignoring Them
In this case, it wasn’t an MS symptom (I don’t think), but rather the experience of increasing pain in my hip. I have been rehabilitating that area for months after a series of falls this past winter.
X-rays have shown no sign of structural damage to the bones or the replacement joint — a replacement that was due to MS, in an indirect way. My physiotherapist has assured me that we are dealing with soft tissue damage, but the pain has changed over the last couple of weeks.
As I did with my prediagnosis symptoms, I’ve been explaining away an increase in the level of pain as well as the fact that the sensation has changed from blunt to acute and from aching to stabbing.
Will I ever learn?
I’ve noticed it getting worse, but just got on with things. Caryn, my wife, however, has quietly been noting my reactions to the pain and doesn’t think that I’m “just getting on with it.”
Pain Relief as a Wakeup Call
After a couple of long days on trains and in various hotel room beds (of varying levels of firmness), I found myself kept awake by the increased pain to the point that I could not sleep and finally, at 3 a.m., succumbed to the temptation of a prescription pain medication I had in the drawer.
And then the pain was gone — mostly.
I was able to get to sleep and sleep well for a few hours, something I hadn’t realized had eluded me for weeks. When I woke, I was still pain-free — mostly — and realized how much my body and brain had been compensating for what had become an excruciating level of discomfort to which I’d simply grown accustomed as it increased.
I know now that I’ll have to deal with the issue and not just pretend that I’m getting on well enough. But there was another lesson for me in there as well. Perhaps for all of us.
MS Symptoms Tend to Accumulate Over the Years
Over the years, MS symptoms come and go. They wax and they wane, ebb and flow. Sometimes, in the beginning, they leave altogether after a while. Then, as our lesion load increases, more of the symptoms hang around after an attack and become layers like sediment after the floods of exacerbations.
These layers stack up and compress into one another to the point that we may grow used to them (or grow accustomed to our coping with them), and we just get on with the living of our lives.
But it’s a different life.
Only when I was able to stop the pain did I realize how great it had become. We don’t usually get reprieves from long-term MS symptoms. Once they stop coming and going and just come and stay, then we learn our way around them (as best we can).
It’s Time for Some Mindfulness
Maybe it’s time for a yoga-like awareness for me. Time to examine without judging, to observe without panic. Time to really look at what I’m experiencing every day and note where I am and where my disease has advanced. Not for the sake of woe or to try and fix anything, but rather to give myself a bit of credit for the work I do, every day, just to stand up and move from point A to point B without falling off the edge of the earth.
RELATED: What Is Mindfulness?
Things I Can Change, Things I Can’t
There may be some things to which I can attend, but most will be things that are just part of my life with MS. Unlike this hip pain — which is structural in nature — the damage the disease has caused my central nervous system isn’t something I can rehabilitate (for the most part). And I’ve grown to accept that such things happen with multiple sclerosis.
After understanding how much of my life was bending around the pain, however, I think it would be appropriate to acknowledge that I may not be doing great, but that I’m at least doing well. And sometimes, that’s quite an accomplishment.
Wishing you and your family the best of health.
Cheers,
Trevis
