What Is Stable? Predicting Tomorrow?

when I first contracted pmr it was a bit akin to falling off a cliff and bouncing on the way down, never sure what the next impact would bring.

When it became apparent that it wasn't going to go away of its own accord. When it became apparent that it wasn't a trapped nerve. In the absence of any likely medical assistance for the following few months I changed what I was doing. We still had 8,000 km to drive which was difficult to avoid. But we could travel less each day. Less sight seeing. More rest. More local transport less walking. No cooking or dish washing (a terrible impost). Certainly no spontaneous walks up steep mountains.

Trivial essential maintenance became major chores.

A minor diversion to discover that gentle massage, which normally brings relief to aching muscles, cost a couple of days of increased pain. This is serious!

Thus, after for 4 months, I was stable. I could reasonably predict from today's activities how I would feel tomorrow. By trial and error I recognised what aggravated my condition. What I should avoid. And most importantly how much I could do of the things which made it worse but I couldn't avoid.

I've always worked on the basis that if I can make predictions I understand sufficient to have some control. I wasn't getting better, but at least I wasn't getting worse. Stable.

Once diagnosed and treatment with pred commenced a new roller coaster began. I was no longer traveling. I was settling back to life at home. An overgrown, oversized, garden. A truck to rebuild. No routine.

But none of that could start until I was ready.

The combined effect of changed situation and pred meant a new roller coaster. A change in the course of the pmr. What had been stable was no longer. A rather frightening experience as I wondered what new symptom would arrive with a new day. The pain was gone, a little stiffness remained, but replaced by a chasm of uncertainty, and constantly changing symptoms added to the underlying stiffness..The advent of wall staring fatigue, which I'd not recognised while traveling (the schedule wouldn't allow), was particularly debilitating. Certainly not prepared for the mind altering effects of pred that besieged me.

Unable to decipher what was pmr, what was pred side effect, what may be something unrelated but serious. Frequent trips to the doctor to check. Almost a loss of objectivity, at least a concern at the possibility.

I could no longer make reliable predictions about tomorrow.

Pacing helped. A different way of looking at the things I'd stopped doing. I could slowly experiment. Doing things more slowly. Doing a bit and stopping, to carry on again tomorrow. Finding different ways to do things. I no longer had the routine pressure of having to drive each day, I could take my time. 

Three years on I'm reasonably stable. I know that if I haul on spanners too often for too long it can take a couple of months for stiffness and pain in my hands to subside. A rowing machine requires great caution. Stationery bicycle is ok as long as I do some every couple of days. I know I can walk a few km over steep hills and recover within a couple of days. Chain sawing a large palm tree can be done in a couple of hours, but needs about three weeks until the next one. Cutting the grass with the ride on mower has no after effect. Whipper snippering happens over a couple of days, surprisingly with no after effects. I nervously embarked on a couple of months traveling in the truck - with no misadventures. I've decided to give fishing a miss.

I do sometimes wonder why I have a chainsaw. The truck (motorhome) is much more useful.

Over the three years the pred dose has been reduced to 3mg/day. A very slow process that can't be hurried. A few minor flares, under control within a couple of months.

So here I am. Stable. A belief that the pmr is slowly fading, reinforced by being able to reduce the pred.

Most importantly for me, and the starting point for making this post, I can reasonably predict what I can do for the next few days based on what I've been doing and how I feel. Though I still get it wrong occasionally, and I continue to experiment to find out where the boundaries are.

Its taken me a long time to figure out that rather than just pacing myself I predict the effect of any activity on my next day.

Perhaps wishful thinking, but I also have a sense that the course of pmr has a beginning, a middle, and, hopefully, and end,

The change in my life due to pmr has been significant. Some change has been simply a result of growing older - the older I am the faster I age. Either way there are things I can no longer contemplate doing. But the forced changes of pmr arrived suddenly, and unexpectedly - I think I manage well, but I'd much rather not have to..

At the end of the day I can accept "stable". But I'd prefer a slightly faster improvement.

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