Strategies To Get Through The Day With Neuropathy

Today's post from psychologytoday.com (see link below) provides some wise words for those people struggling with neuropathy on a daily basis. Sometimes it's the pressure from other people that makes you over-extend and do more than is good for you and sometimes it's the pressure of the relentless symptoms that can make life so miserable that it's difficult to see a way forward. This article may help you form a strategy to deal with all that. It's realistic and not too 'new age' or clichéd and provides some genuinely helpful tips on living with a chronic illness. Worth a read but putting it into action won't be easy.

Pacing: The Chronically Ill Person’s Best Friend
Toni Bernhard J.D. Turning Straw Into Gold Posted Jun 15, 2016

Five effective strategies for pacing when you’re sick or in pain

Pacing refers to spacing out your activities during the day so that you’re able to stay within the limits of what your body can handle without exacerbating your symptoms. Another way to think of it is that pacing is a way to keep you inside your "energy envelope"—the envelope that contains your energy stores for any given day.

First, an admission: Even though pacing may be the single best “treatment” for me, I have a love-hate relationship with it. On the one hand, I love pacing because it keeps my symptoms from flaring. On the other hand, I hate pacing because it keeps me from doing everything I want to do.

To complicate matters, I’m much better at pacing when I’m at my best, as opposed to when I’m at my worst. This means that when I’m feeling intensely sick or in pain, I tend to ignore pacing and overdo things which, of course, only exacerbates my symptoms. Why in the world would I do this? Because doing things distracts me from my symptoms. In other words, activity keeps me from tuning in to how my body feels. Of course, this always backfires. The time comes when my body imposes itself on the situation and tells me in no uncertain terms: “That is enough for now.” Then, when I do give in and lie down to rest, I have to deal with feeling worse due to all that extra activity. When will I learn?

This tendency of mine is the exact opposite way that “pacing failure” is usually described. It’s usually described as overdoing it when you’re feeling good, and then having to pay for it later, often by being confined to bed for a time. This is called the “push and crash cycle.” I can do that too, but in this complicated relationship I have with pacing, I could call my tendency to overdo it when I’m already feeling terrible a “crash and crash cycle”!

I’m pretty sure I’m not alone in doing this.

The odd thing is that I’m generally a very disciplined person, so because pacing takes discipline, you’d think I’d be good at it. But I’m not. I admit that one reason for writing this piece is self-interest: I need to work on my pacing skills and writing about it will inspire me to do so.

Here are some ideas for pacing that have worked for me when I’m being “good” and following them: 

1. Alternating activity with rest.

This is the essence of pacing.

In my experience, the best way to do this is to write out a schedule for the day that incorporates rest in between each activity you want or have to do, be it mental or physical. This way, you’re dividing your activities into manageable chunks of time.

Here’s the secret to success with this: if you don’t stick to your schedule exactly, don’t abandon it. This is a common mistake. When I was teaching, I recommended that students create a schedule during finals period in which they set out what subjects they’d study on any given day and time. Then I gave them this final piece of advice: “Stuff happens that can keep you from sticking precisely to your schedule. Don’t throw it out. Revise it and start from your new spot.”

This approach to scheduling has helped me tremendously since becoming chronically ill. For example, if I put on the schedule for the morning, “10:00-10:30: work on blog post,” but then wind up working until 11:00, I revise the schedule and move on with the day. Simply having that schedule in front of me keeps me from deviating from it too much. Without set time-frames, I’m likely to lose track of time and work for several hours straight; then of course, I have to suffer the consequences. Some people find it helpful to set a timer; when it goes off, they know it’s time to stop the activity and rest for a while. 

2. Slowing down when performing tasks.

I tend to do things quickly. This causes my heart to begin racing and it can even make me dizzy. Slowing down is an excellent way to pace. And so, when I catch myself going faster and faster, for example, when I’m folding laundry or doing the dishes, I consciously tell myself to slow down. Not only do I save energy this way (and so I’m pacing), but I enjoy the task much more.

3. Following the 50% rule.

With this pacing tool, given how you feel on a particular day, you decide what you can comfortably do and then only do 50% of it.

One reason this is a great strategy is that I tend to overestimate what I can comfortably do, so this keeps me safely within my energy envelope. I also recommend that you think of that unexpended 50% as a gift you’re giving yourself to help you feel less sick and in less pain. 

4. Using a metaphor to help allocate available energy.

Many of you are familiar with the “spoon theory” by Christine Miserandino and find it very helpful. Here’s a link to it: The Spoon Theory.

I use a “marbles in a bowl” metaphor because it works better for me. When I wake up in the morning, depending on how I feel, I imagine that I have a certain number of marbles in a bowl. They represent the available energy I have for that day. It might be 50 marbles on a good day…and 10 marbles on a bad day.

Then, before I start an activity, I estimate how many marbles it will use up and subtract that number from my total. When there are no more marbles in my bowl, it’s time to “shut down” for the day. Initially, I had a lot of success with this strategy. Unfortunately, several years ago I stopped doing it. (Note to self: start thinking about marbles again!)

Don’t forget that mental and emotional activity use up marbles too. In fact, stress is a marble gobbler. For this reason, if an unexpected source of stress arises, you may suddenly find your bowl empty. That’s the time to make a commitment to rest as much possible for the remainder of the day.

5. Using a pedometer or a heart rate monitor.

These are inexpensive devices. A pedometer counts the number of steps you take in a day. A heart rate monitor keeps track of how fast your heart is beating. Once you figure out your limits—how many steps you can take or how high your heart rate can become before you feel the energy draining out of you—you keep your eye on the pedometer or the heart-rate monitor; when they get to a certain reading, you know it’s time to rest.

The reason I’m not using either at the moment is that, in my case, I can overdo things without taking a single step, for example, working too hard on my writing even though I’m reclining on the bed. Nevertheless, I know from others that these two devices can be valuable pacing tools.

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A final word. Expect the unexpected, meaning that no matter how carefully you’ve planned your day for perfect pacing, as John Lennon wrote: “Life is what happens while you’re busy making other plans.” Stuff happens that may keep you from sticking to your pacing goals. When that happens, don’t abandon your pacing plans and don’t blame yourself for getting off-course (that’s a useless waste of your limited energy). Instead, revise your schedule and then try again. In an earlier piece, I referred to this as keeping a “Try Mind.”

https://www.psychologytoday.com/blog/turning-straw-gold/201606/pacing-the-chronically-ill-person-s-best-friend