Why we tend to stay home. Isolation or control ?
I happened to hear a comment the other night on a movie about a blind man. It was his Mother telling his new girlfriend ” do not base his ability on what you see him do at home, in an environment he controls” And it rattled around in my brain, until I realized, just how that applies to us with FM.
A large number of us, prefer to stay at home … period. To the point where some of us, are downright agoraphobic. The line from the movie was not the first time I had seen this effect, in action. As I recall seeing the same effect, with those I used to teach.
I was a one on one life skills teacher for persons with Disabilities. I noticed, that when they were at home ( once they got used to the apartment ) they seemed to do pretty well. It was when I got them outside of that environment, that their over all state and general performance, suffered. Once they were used to certain stores and the like, their abilities improved, at least in that place. But if I took them somewhere they had never been, again, performance suffered.
So I had to ask myself, in what way does this apply to our tendency to be ” stay at homes” ? Now, it is a given that often times, we just don’t have the energy to face the chores in the outside world, that is nothing more than fact. But how much of our reluctance, is also due to the fact that we have NO control over that environment ?
For example; If here at home, it is too hot or too cold, I can walk right over to the controls for the AC or heater and change that. I can strip down or dress warmer, in short, I have some direct control. But what if I am out and about ? Now, I am stuck in whatever I happen to be wearing, having to deal with often sudden shifts in temperature ( say from the AC in the car, to out in the heat to now back in the AC in the building ) and that’s just one aspect, the ambient temperature around us.
Light: Now I don’t know about you, but the horror of florescent lighting is enough to drive me about bonkers. Yet, such lighting is in most public buildings, or doctors offices. So yet another thing my body does not like and reacts rather badly to, that I have no control over. Not to mention, we do not do very well in bright sunlight either.
Rest to action phases: Now, at home, if I need to rest, I can just stop whatever it is I am doing on most days and go lay on the sofa and watch TV or read a book. I can even go take a nap if i want. When I am out ? None of those things apply.
Smells: At home, we can to a high degree, control what we smell. Outside and going about, we have little to no control over the major assault on our senses from all manner of things, from the detergent aisle at the grocery store, to the woman sitting next to us on the bus, who bathed in her perfume. Let us not even get into the nasal assault we suffer when walking into any doctors environment.
Noise: Now this one I know for a fact is an issue, as I wear an MP3 player around my neck with ear clamp headphones, literally everywhere I go, to block out the noise all around me. As any failure to do so and I come home even more wiped out, than if i didn’t block it all out. And again, in my own home, most of the time, unless the TV is on, which is rare … the only noise is the AC running, as total quite is preferred. ( Which is why noisy neighbors about drive me crazy )
Desensitization or over excitation:
Now some might say, we are creating our own problem by exercising such strong control over our home environment, as it does not prepare us for the assault on the body in the outside world. And in my personal case, they might even have a point. As in my current situation, I have almost total control over most aspects of my home environment, but what about those of us who have a house full of kids, husbands, wives, pets etc ? Granted, even they have some greater control over their personal space, but not nearly so much as I do … yet… they suffer the same issues as I do, when they go out and about.
So what are we really dealing with here ? A case of, we shelter ourselves and therefore suffer more when we go out, or a case of we would suffer even more, if we did NOT control our personal environment, as then we would have NO respite from it ?
Even in most of the rules, regarding persons with disabilities, there is always a clause stating that they should have in all cases, where possible, the”least restrictive environment .” In fact, in persons with the more common disabilities, there are major protocols in place to reduce the distress of the shift from a controlled to a non controlled environment. A read of the research shows clearly that you can find notations to health professionals, in plenty for just about everybody.. except us. Now, granted, the more severe the disablement, the more complex the protocols, but to my way of thinking, perhaps there needs to be some created for us.
For example: At the doctors office, less bright lights if you please, which makes it a need to….Lose the waiting around for hours in crowded noisy waiting rooms, put us in a private room to wait, with dimmer lights. Let us sit with our feet up if we need to, as for most of us the forced legs down position for hours means, we will fall down when we go to get up.
Simplified forms to fill out or have the nurse just ask the questions and fill it out for us
Bring us warmed blankets, if we have to wait, so we don’t get chilled, as most doctors offices are like refrigerators.
Just these things alone, would make what can be a horror of pain and distress, a typical visit to a doctors office, into something a lot more comfortable to endure. And I think it is high time, we started asking for them.
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