When 'Simple' Tasks Aren't Simple Because of Myalgic Encephalomyelitis


I’ve decided to write about a problem I’ve encountered from the moment when I got sick and never got better.

I’ve had myalgic encephalomyelitis or ME for eight years now. Over and over again, I encounter the problem of how people who aren’t sick don’t have to think about certain things because — well, they aren’t sick.

One of the things that may challenge sick people is leaving the house. A lot more that goes into leaving the house, than just walking out door. First you have to preserve your energy before any event, which means when you have to venture outdoors, you hope you aren’t going to have a random flare. You also hope that just resting will prepare you for the event.

Next, you have to figure out when or whether you can bathe before you go out. And if you can’t bathe you have to figure out what you can do to appear clean to others. Maybe you can use dry shampoo, baby wipes and deodorant.

Then you have to figure out what to wear. If it’s a high pain day, you need loose and comfy clothing. You also have to prepare for the temperature you’ll be in for the majority of the event. Most of us with ME are have a hard time controlling our temperatures, so we have to be particularly mindful of how much or how little to wear. Our clothing choices must be easy to put on, either for us or our carers. Putting clothes on can be very difficult and painful.

Then, there’s the problem of transportation. Public transport can be a struggle for many of us with chronic illnesses. We have to wait around for it and then there’s not always seating. It can run also run late. If it runs late, you have to wait longer, which sometimes is just not possible.

Taxis are great. They can pick you up and drop you off from door to door, but they’re expensive. Just sitting as a passenger in a car can be absolutely exhausting. Sitting in one position for any amount of time can be extremely uncomfortable, and discomfort often leads to pain.

Another concern is whether we are going to have to be social when we get to where we’re going. If it’s a doctors appointment, I have to have a written list of what I need to say; otherwise, I’ll likely forget something. If I’m going to see anybody else, then socialising is also incredibly exhausting. I have to listen and understand what someone is saying, and also come up with responses that make sense.

People with ME also have to take into account how far we may have to walk once we get where we’re going, where toilets are, and whether there will be any seating if we get too tired to stand.

Finally after the event is all over, we have to travel back home, get changed, maybe bathe and maybe eat.

Eating may also seem as though it takes no effort at all, however, sitting upright, chewing and swallowing can all take a great deal of energy.

Any event that requires a person with ME to leave the house is not necessarily an easy task, no matter how simple it may seem to a person without ME.

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