Living with someone with a disability

I write this both as a person with a disability and as a person who cares for someone with one. It may be easy to see that someone has a physical disability, missing a limb, paralyzed, blind, whatever, but there are so many other forms of disability out there. Just because someone appears physically fine does not mean that they are not struggling to get simple things done, to live in this world of appointments and obligations that you may find so easy to exist in. While their disability may not be readily apparent, that makes it no less valid, no less debilitating, and no less of a struggle.

In our case, we both deal with mental illness and disability, though my wife also deals with fatigue, chronic pain, exhaustion, and nerve pain. We live in a small RV and don’t have that much to maintain and keep clean, we don’t have any children to care for, and yet every day can be a struggle. Its not that we can’t physically manage to do things to keep it nice and clean and orderly in here, but it runs far deeper and leads to other problems.

Motivation and Depression

Everyone feels sad at some point. They may say they are depressed about something. Unfortunately, chronic, long-term depression is not a matter of simply feeling sad about something. For those who have never actually experience real depression, it can be confusing to understand, difficult to comprehend, and near impossible to respect. This is not a matter of simply feeling sad about something specific and defined. Its and overwhelming feeling of worry, fear, hopelessness. The feeling of wanting to give up despite things seeming okay on the outside to others.

I’ve had people tell me I shouldn’t be depressed. We live in an RV, we were able to travel for awhile, we had our bills accounted for, things should have been great. But none of that matters. That’s not how depression works. You can’t think your way out of it, you can’t use logic or reason to force yourself to feel that things are okay. Its a crushing despair where everything seems pointless despite things looking okay to others.

From this develops a lack of motivation. Why do something if nothing matters? Why wash the dishes if there are just going to be more tomorrow? Why shower if I never leave the RV and have to deal with anyone else? Why try when there is no point? Things get worse and it soon becomes overwhelming. What could be handled in an hour has not avalanched into something that will take days to fix. And with other things that need to be worked on, where does one start? There’s always something that needs to be done, and yet nothing gets done because we can’t focus enough to figure out what to start with first.

Anxiety

And this of course, leads to anxiety. The pressure of getting things done and yet not knowing what to do first makes us anxious. I had a panic attack this morning. I was mopping a floor, but my thoughts were all over the place. I was terrified something was wrong with my wife, that I was going to go back to the RV after my work was done and something terrible had happened. I had to come back and change clothes, so I was able to check on her and she was fine, but the anxiety still made things unbearable until I knew for certain. Was it logical? Absolutely not, but that doesn’t make it any less real.

Anxiety makes us less willing to be around other people. It makes us stressed and makes simple things difficult. It makes the world seem like a very scary place, despite things not being that bad. It doesn’t make sense, it isn’t understandable to others, and yet it can so easily consume us.

In the case of my wife, anxiety keeps her up at night. She’s worrying about things, many, many things, to the point where she can’t shut down her mind and fall asleep. That means she’s up until its light out, then sleeps until the afternoon the next day, doesn’t get much done, and gets anxious about not getting done what she feels she should have.

How does one help with this? Honestly, I haven’t figure that out. I’ve been slowly taking care of things and getting things done, trying to get things under control, but its taking time. I would love it if I could spend a day or a weekend just cleaning and organizing, but that requires a lot more effort and motivation than I currently have. I can do things like laundry and dishes and try to keep it under control. I may not get it all done in a day, but if I do a little each day, I can maintain the pile at least, or slowly chip away at it possibly.

And with Depression comes Exhaustion

We don’t do much each day. We might go for a walk, I’ve been working in the mornings, but we aren’t out doing all that much to physically exert ourselves. And yet, each day we are continually exhausted. Part of depression is a simple lack of energy. We can supplement with caffeine, but that only does so much. We eat enough, we have enough caloric intake, and yet every day it seems a struggle to not be constantly yawning. Its hard to get anything done when you don’t have the energy to do anything, and then compound on top of that the other issues of anxiety and becomes almost impossible to get anything done. Even if we had the energy to get things done, the anxiety and depression inhibits any ability to actually do those things.

And so complacency sets in. Piles of dishes and laundry mount. No one gets invited to visit because its a mess inside and embarrassing to show them the RV. Loneliness sets in because there is no one to visit, depression gets worse and the inside gets more cluttered and messier. Its a vicious cycle, and one I have not yet figured out how to break.

A month or so ago, I got us caught up on the laundry. We have so much laundry though, we don’t have anywhere to put it all. We need to go through it all and get rid of the stuff we don’t wear, things we don’t need anymore, things that don’t fit. Whether donated or to the trash, things need to go. But even something like that seems daunting. Where do we start? How do we go through things when there is so very much to deal with?

The End.

If you have gotten this far and are wondering why we don’t just start with something small to make a dent in things and then everything will domino from there, then you’ve missed the point. Its not that easy. Its not as simple as just taking the first step because the first step is the hardest. Even after taking one step, there are so many more to keep things going and getting the ball rolling seems impossible most days.

Next week is our four year wedding anniversary. One of those years has been spent in an RV. Its been a struggle, we don’t always get along, we have had so many things go wrong, but we are trying to make things work. I have projects I want to work on, things I want to get done. Things I want to build and areas I want to remodel. None of that matters if we can’t keep up with the simple, basic, day-to-day things that need to happen. I want to make things awesome, but first, I need to make things livable. I need to go through our clothes and reduce the amount we have. I need to go through the cabinet above the sink and get rid of the stuff we never use and don’t need. I need to figure out the best way to store things and keep it organized.

After we have figured out how to live in here with what we have, then we can figure out how to make things more comfortable and convenient. Its pointless to add things that won’t be needed when the necessities are not be done.

That first step though, its a bitch.

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