How Neuropathy Runs Your Batteries Down

Today's post from themighty.com (see link below) is another post that will ring bells with many other neuropathy sufferers but sadly is generally only shared among other nerve damage patients and not the world at large, that remains largely ignorant of how it really is to live with such a disease. Nevertheless, even experienced neuropathy patients can be taken by surprise by the crippling tiredness and lack of energy that nerve pain can bring. This article explains what it's like living with such a debilitating symptom and suggests some means of lessening it but unfortunately for most people the battery analogy is so true, long lasting and a significant factor in reducing quality of life. Sharing experiences at least helps convince people they're not alone.

Why My Chronic Fatigue Is Like a Cell Phone Battery September 20, 2018 Christen Marie Contributor• 

For those of us dealing with chronic pain or chronic illness such as fibromyalgia, autoimmune disorders, or any host of other physical or mental health issues, there is often this one overriding issue that can wreak havoc on our lives and yet be very difficult to explain to the average person. Chronic fatigue.

Chronic fatigue can often be diagnosed as an accompanying symptom or even it’s own separate syndrome – chronic fatigue syndrome (CFS), yet so many people struggle with it and find it incredibly difficult explain to the support people in their lives. Personally, I struggle with chronic pain due to a nerve damage related injury, however, since then, I have also been diagnosed as having both fibromyalgia and CFS. I am constantly exhausted additionally by both pain and medication as are many people are who face the exhaustion of their illness and the side effects of medication.

In 2003, when trying to explain the units of limited energy that someone struggling from chronic pain or illness may have, Christina Miserandino, wrote an essay in which she coined the term the “Spoon Theory.” While this theory does adequately explain things, I find that most people look at me like I am odd when I start trying to explain terms of energy in comparison to spoons.

To simplify it, I like to compare energy to cell phone batteries. Each day, everyone gets a cell phone battery. People without the aforementioned health challenges, get a fully charged, perfectly working battery, charged up to 100 percent. Those of us with chronic pain, illness, etc. are given faulty batteries that are each charged to a lower percentage level.

For the sake of this example, you have the healthy, fully charged battery. Your battery also happens to be rechargeable. You can take a quick power nap, exercise, have a healthy snack – all those things act to charge your battery.

Meanwhile, I was given a battery that was only about 60 percent charged and was thankful for that, because 60 percent charged meant that I was having a better day than usual. My battery is not rechargeable. In fact, all of those things that recharge your battery, just drain mine of energy more quickly. Our batteries also do not drain at the same rate. Since I am sick and you are healthy, it takes me much more of an effort to do average daily tasks. Therefore, that shower that only used up two percent of your battery, used up 10 percent of mine. You went to work and had only used 15 percent of your battery. I went to the doctor and used 40 percent of mine. I used another 10 percent getting the kids picked up from school and then my 60 percent was already gone for the day.

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My battery is done and I can’t stay awake even if I wanted to. I try to stay awake, but am in a zombie-like mode until I finally just fall asleep for the night at 5 p.m. Meanwhile, you have worked an entire day, come home and help the kids with their school work, and still have over 50 percent of your battery left. This often leaves the healthy person wondering if the person that is physically struggling is just being lazy when in fact, they truly just have nothing left to give. This can foster resentment and anger if there is no way to explain to the healthy individual what is actually occurring in the individual with the overwhelming fatigue.

Does the person with the limited battery pick and choose their activities? Absolutely, but unlike my example where they can calculate their battery usage ahead of time, they have no way of knowing how long their energy is going to last. They just know that they have a very limited amount of energy and when it is gone it is gone completely. This allows them to prioritize certain things like doctor’s appointments, etc., and save up energy, but does not mean they are being spiteful if they have no energy left to spend at the end of the day. They need to communicate with the people closest to them in their life and find ways to express this and prioritize what is needed.

Can’t they borrow batteries from other days? Technically, yes, if they had something really huge going on and they absolutely needed to expend a great amount of energy, they could borrow a few days worth of batteries, but this is not without a huge cost. For example, they may want to go visit their family over Christmas and need to try to function at a more normal level during the visit (regardless they would still need more rest than the average person). To accomplish this, they may have to take more medication to get through the increased pain this could cause, drink large amounts of caffeine to stay awake for slightly longer periods of time, struggle to comfortably sleep in a different bed, socially exhaust themselves, and expend large reserves of energy that they simply do not have on a daily basis.

Upon their return home, imagine a two to one battery cost ratio. In other words, for every one extra day of battery energy they borrowed, they need to sleep for two extra days time. Their body simply needs this recovery time. For those of us that have lived with chronic conditions for years, we have grown used to building this recovery time in around planned activities or even vacations. However, it often causes a lot of anxiety as well, because you are aware that any significant activity you are going to do will cost you more energy than you have and this can be extremely stressful especially if those around you don’t understand what you are going through.

This loss of energy or stamina often surprises people the most about chronic pain or illness. As a former college athlete, used to working through pain or injuries, there are days where I can push through the pain to accomplish something that is needed, but then like an angry freight train, the pain plus loss of energy just runs me right over and there is literally nothing that I can do about it. There is no working through it. It literally stops me in my tracks and I can’t continue on until I get adequate rest. This is one of the hardest things about chronic pain and illness to experience and to explain as there are so many misunderstandings surrounding it.

Tips for caretakers, partners, or friends of those with limited energy and chronic fatigue due to chronic pain or illness:

Please do not accuse us of being lazy. We are already mentally beating ourselves up enough for not being able to accomplish more. We are doing as much as we can physically do, but we are battling against both our bodies and our waning energy stores. This does not mean that we are any less smart, talented, or accomplished then pre-illness, but we are forever altered and we are struggling to work within our new normal.

Hopefully, this article explains why we seem to sleep so often. It is also very difficult to have quality sleep because of our individual pain or illnesses which makes us even more tired. Pain also makes sleeping at night more difficult, whereas we may be able to sleep better during the day. Therefore, just because we are up late watching “Downton Abbey” doesn’t mean we have any energy at all. We probably desperately want to sleep, but our body won’t let us. It unfortunately holds us hostage that way.

We still love you. Sometimes we feel so bad that we don’t show it and we are sorry about that. Please be patient with us and we will be patient in return. Please remember that we are more than just our illness and we need to find new ways to recognize our talents and passions in our new normal.

We may say “no” a lot, but we still like to be invited places and included by friends. Even if that means having a friend just stop by for awhile for a movie or to talk. We still want to feel included.

Help us plan activities by building in adequate recovery time afterwards and rest time leading up to them. Keep excursions short and not too physically taxing. Building in room for rest or nap times helps immensely.

If you want us to prioritize time and energy for you, just let us know. We may need some advance notice, however, because we need to save up our battery for you. Sometimes, you may feel like we are rejecting you or leaving you out, because we don’t prioritize time for you. However, the truth is that we just might not know that you wanted our time and we are more worried about trying to do things like shower, so you won’t think we smell.

Thank you for sticking by us. You make all the difference.

https://themighty.com/2018/09/cell-phone-battery-spoon-theory-fatigue/