Update: Improving and Adapting

The sun comes up, it's a new day dawning, it's time to sing your song again. Whatever may pass and whatever lies before me, let me be singing when the evening comes. -- 10,000 Reasons, Matt Redman

I suppose it's also time to give you good people an update about me. I want to start off by saying that I am SO MUCH BETTER, and while not fully restored to physical abilities, I have seen progress. Not everyone does. I'm still hoping for more progress, but if it comes, it will come slowly, and so every day, I have to consider: What if this is the most improvement I will get? Can I live and work with this? The answer is "Yes." So each day that I get to see even a tiny tick of betterment--slightly less tingling pain, slightly more sensation, more stamina on stairs or during a longish walk or while standing to deliver a presentation--each day something like that presents itself is a bonus to me.

I would not qualify my physical condition as a result of the transverse myelitis attack on my spinal cord as debilitating.

For that, I am so very thankful. Many people who are hit with this and similar rare spinal cord diseases suffer with paralysis, long-term pain, and loss of use of limbs and/or digits. My residual effects are minor in comparison to what I have learned about many others.

My condition is not debilitating, but it is still challenging. Pain is mostly under control with medication, but the medication does not help with the numbness that I still have in my lower left leg and foot. I have recently regained sensation in my left heel, though, and that has been super-encouraging. That numbness is a matter of the nerve damage in my spine, and there is no drug that can repair the damage. Only time, good nutrition, and the power of God can address that. 

In my case, I have insecure footing that comes from that numbness, pain in the form of tingling that is generally manageable with gabapentin, taken three times daily. The perception of movable bands of weakness and fatigue in both right and left legs--which is a phantom weakness--is getting less and less. I'm hoping that continues. My muscles are actually fine, but the damaged nerves in my spine are firing off desperate and inaccurate signals to my brain telling me my legs are shaky, weak, about to buckle under me. I keep climbing those stairs to prove to my brain that it just isn't so. 

So, I'm continuing in hope that I might see more improvement, but at the same time making some smallish changes around the house and office to accommodate my particular challenges and make regular, daily life as manageable as possible.

Most of these are taking actual physical form, but some are activity oriented. Eventually, I'm told, I will need some physical therapy, but in the meantime I try to get as much normal movement in as my legs and heart (cardio was a mess while on prednisone--heart rate and blood pressure stayed elevated no matter what I did; I am now off the steroid and already see a slight decrease in resting heart rate; hoping blood pressure will follow suit and drop back down near my previous normal range). My brothers and friends help me with this by constantly challenging me to FitBit steps competitions and I'm keeping up with them as best as I can right now. It takes a team and I'm grateful for mine!

As the weather warms, I plan to tackle some altitude in the real world.

I shared in another place that the wonderful man in my life (his name is Chris) and my good friend Jordan, with other friends Cathy and Jack and Ashley and Woody stopping in to see if they could help too, tore out and replaced my stepping stone walkway to my back door. They did a wonderful job of removing a path that was gappy, uneven, and treacherous for not-so-nimble feet, and now I walk safely and as smoothly as possible to and from my car and home. I am so thankful.

But I'm not going to be able to easily mow the steeper parts of my yard this spring and summer, and already, the grass back there is beginning to rise up in scattered clumps that demanded attention. (Chris did the initial mowing for this year for me.) The sloped area is not large, but it was already difficult for me to manage on my own with my small but hardy Murray lawnmower that I depend on to partner with me in that job. Murray and I struggled even when my legs and feet were fully in this game. So some landscaping is on the horizon, and soon.

Front slope

Back slope, where the rainwater also collects.
We've had actual algae growing on the mud at the base of this one.

A small portion of my tax refund is going to some more mulch, gravel, dogwoods, azaleas, and groundcovers. I'll have to stage the landscaping plants because they are so expensive, but the plan is to put in a few feature items, groundcovers, and then mulch the slope and use gravel at the base to turn the muddy areas (one even has ALGAE growing on top of the clay mud after all this rain) to make them as maintenance free as possible. I will still be able to mow the flat grassy strip above and below each area, but the slopes will hopefully be mostly hands-off after this project is done. A married couple who are also outward-thinking, sweet and supportive friends, have offered to come over on "planting day" once I set the date, to help dig and plant and mulch. That will make it so much more fun and help the project move along quickly as well. It makes me look forward to it. So I told Dave and Christine I would let them know after I "call before I dig" to have utilities marked, and then purchase the plants that I'm able to do in phase 1.

Dinnertime prep and aftermeal cleanup have gone fairly well with the exception of one hard day last week. I am giving myself a little bit of grace in this area while I learn how to do the same things I used to do when they do contribute to a building of late-day fatigue or pain. I am allowing paper plates at the dinner table at least once per week. But I decided that it might help me to invest in an anti-fatigue kitchen mat to remove some of the standing pressure that increases the tingling pain. Just as I was researching those, and finding them MUCH more expensive than I expected, I got a promotional email from Brad's Deals with a deep discount on a selection of cute mats. I couldn't believe it. I was looking at 1/2" mats on Amazon with mediocre reviews for $50 each, and here on Brad's Deals was a 1" mat with a number of cute, kitcheny decor patterns, for $16.00. I snapped one up and it arrived earlier this week. After using it in my sock feet for a couple of days, I must say it really does help relieve a bit of pressure. So I went back to the site to see if there were any left and whether the promotion still worked. It did, so I ordered a second one. My plan is to have one permanently between the sink and stove, so that whether I am washing or cooking, I can have a mat always there. Then the other will go at the end of the kitchen bar--the "prep" area, so that if I am chopping veggies or making lunches, I can always have one to stand on there. An easy, inexpensive bit of assistance!

I traded out my desk chair at work for one made for a shorter person and put a lumbar support pillow in the seat of it. Now there is no chance of my legs "dangling" from the seat and possibly putting pressure on any blood vessels to reduce circulation. In the past, if that happened, I would just adjust position and restore circulation. But today, if that happens, it is almost immediate pain. Let's just try to avoid that entirely.

This is adaptation. These are small adjustments. No matter how long this condition lasts--whether it is months or years or the rest of my life--there are things to do to adjust and to keep moving forward in the tasks we're called to keep doing. Life is still worth the effort.

And I can stand and walk to do almost anything I need or want to do. Running--such as in playing backyard baseball--is still really not an option. I'm sure to stumble and fall. I hope this improves. But if it doesn't, I'm still gratefull.

My perseverance is so small in comparison to others and what they are working through. I think of the Wounded Warriors. I think of those paralyzed in accidents or illnesses. I think of children born with harder hardships than mine.

But on some days, if I'm honest, I still ask: Wasn't it enough already? It seemed like enough already. I'm not whining, but I think it's realistic and a cause for me to look at others with more compassion, no matter what level of challenge each faces: No one really has it easy. To diminish one's burden with a "could be worse" response doesn't actually help encourage them. It may be true that it could be worse, but that doesn't in any way mean it isn't what it is. Lord, help me see them too. Help me see what they're carrying and say, "I know; me too; soldier on--it's worth it." And maybe, if enough knowledge and insight is afforded, also lend a hand. At least my hands and arms are strong and working. There is that.

Let me be singing when the evening comes.