Explaining My MS Energy

Ever Ready

My night’s sleep hadn’t been great, not restful enough so before I even got out of bed I knew that it wasn’t going to be a great day; I planned my day accordingly. I still had some energy but not a lot; it had to rationed. It is difficult to describe the fatigue that People living with MS (PwMS) experience so I won’t really try except to say that it is a crushing burden, a total wipe out. It often strikes with little or no warning and forces the cancellation of plans at short notice. It’s not that we don’t want to go out, we are just not able.

I liken my MS energy to the energy within a battery.

Batteries have a finite amount of energy stored within. Some are single-use batteries and others are rechargeable. They come in all shapes and sizes from large car batteries down to the smallest watch battery but they have one thing in common; they have no level indicator. We don’t know how much energy is inside or how long it will last; but when it’s gone it’s definitely gone. The “Ever Ready Bunny” may last up to six times longer than an ordinary battery but even she grinds to a halt eventually and is not rechargeable.

When you look at a new battery it looks exactly like it should.

When you look at me – same.

When you look at a battery you can’t see how much energy is inside.

When you look at a me – same.

When you look at a battery you can’t tell how long it will last.

When you look at a me – same.

When you try to recharge a battery you don’t know how long until it’s fully charged.

When I try to recharge – same.

I continue to do the things I enjoy doing as often as possible. I use Assistive Technology to reduce my energy wastage; my wheelchair is my biggest saver. I try to get out and about every day for a cuppa or just a chat and the days I don’t get out are the days that my energy has been reduced so people outside my family rarely see me at less than my best.

It’s not that PwMS have a load of energy to begin with and whatever energy we have can deplete rapidly. We have no way of knowing how much energy we start the day with and no way of knowing when the tank is about to empty. Everything we do takes more time and energy.

Please don’t stop asking us to join in activities. Please don’t presume that we won’t be able or want to. We may have to cancel at short notice but that is not our decision that is an MS decision. Please understand.

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Categories: Just thoughts | Tags: , , , | 1 Comment

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One thought on “Explaining My MS Energy

  1. And when we use an electric wheelchair, we must rely on its battery which runs down too – One battery compensating for another.

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