What a day is like for me. Life with service-connected disability.

What a day is like for me.  Life with service-connected disability.

It’s considered another day even though I haven’t been to sleep yet. It’s another night that I just lay there while my head continues to run from one thought to the next. All the house is sleeping, everything, even the cats, but I am wide awake. I cannot watch TV because that never gets me tired, as a few minutes with the TV on in the bedroom and my husband is snoring. I can hear the dogs as they snore around the bed. If I write, I could do that for hours, if I read I could do that for hours too. All I can do, to be able to get some sleep is to lie there, close my eyes and hope for sleep.

I am getting tired and feeling like sleep might be coming but one of the dogs hears something outside and is up and out the dog door. The other dogs hear her and out they go. Sometimes it is “quietly,” where I am the only one who hears them, other times they start the barking from under the bed and bark the whole way outside. Those times it disturbs my husband, his breathing changes. He could sleep through a freight training going through the bedroom. They all come back in and lay down. Soon they are all out again and I am the only one left awake. I have comfort in them. If they were not there by me keeping me safe, making sure if there is a sound that I do not hear they do, I wouldn’t get any sleep.

I glance around the room and see something, or do I? I think I saw a shadow, was it from a car coming in the driveway? Was it from someone prowling around my house? I look at the dogs, they aren’t moving, it was just my mind again. I have had the prowler outside the house trying to look into my daughter’s room. I have had the guy come into my daughter’s room in the middle of the night (who does not understand how lucky he was that my husband got to him first – had it been me, he’d been dead, not just hurt). I am an MST survivor, attacked by my own. Had someone try to climb into my room while I was in Saudi, had someone come up behind me when I opened my door and push me inside to try and rape me. I have been almost kidnapped by a taxi driver in Saudi, sold off to some Saudi guy (by my own), left to see if I’d make it back alive, my car broken into and purse stolen in the church parking lot. I have reason to think there could be someone out there. There has been “someone” out there before, but I know that it’s me, it’s because of the past that I see the shadows, wake up to the different sounds the house makes on occasion, can hear the change in breathing patterns of my children in the other room, hear the soft footsteps when they get up in the middle of the night to go to the bathroom. Hear the neighbor dog as he eats our cat foot out the side of the house. I hear it all. I had to stay vigilant for so many years, I haven’t been able to turn it off – it’s always on, when I am awake, even when I am “sound” asleep.

Finally I fall to sleep but within two hours I am up again, my daughter has gotten up to get ready for work. I can hear her shower going. It takes about an hour before I can fall back to sleep, but up again when she comes downstairs for food and to leave. The dogs hear her and are up, I was up when I heard her feet on the stairs. She’s gone and this continues as my husband gets up, then our female house guest then my son. Between all this and my getting up to use the bathroom (at least twice) I can get a good three hours of continuous sleep on a good night. Then just here and there a few minutes to an hour.

It’s time for me to get up, but this morning I have been dreading lifting up my body, another headache. The climate has changed and I have one of the annoying always there pressure headaches which feel like a beanie that’s too tight on my head. I lift up and I wait while my body adjusts to being upright. It won’t matter if I try and sleep it off, this one I just have to deal with. I figure after my morning meds are down for at least an hour, I’ll take some IB or acetaminophen. I check the calendar on the wall to see if I have any appointments for the day. I do it periodically throughout the day because sometimes I cannot remember that I have an appointment right after I have checked the calendar, that’s why it’s in the kitchen where I have to walk by it to my room and during the day. I get the meds that I determined I would take from the VA and take them with breakfast. I sit on the couch and check my emails for a few minutes getting ready for a shower.

That’s when it happens, all of a sudden I feel a rush of heat over my body. Not again. Sure enough within a few more seconds I am in the bathroom and my breakfast and meds are coming out. In my rush I forget to close the door and in comes our new four month old German Shepherd puppy, who knows since I am on the floor it must be time to play. He gets a few licks in until I grab his collar and hold him. He’s not doing anything wrong and there is no correction, it was me who forgot to shut the door. I make a mental note that I need to make sure that I do that next time. That does not mean the next time I will remember, but I may.

So I can feel that it’s one of those days. A day that I must stay home and near the bathroom. A day if I had appointments I would have to take extra meds to get me through the appointments, that I would pay for the next few days. I clean up and head back to the couch. I don’t know what meds were absorbed, I cannot take more or I get too much, I have to wait through the discomfort (sometimes) pain until the next med time. I know that I also have to wait out the headache, my stomach will not take anything but water and crackers, maybe Sprite, but mostly defizzed. I go back to the couch and turn on the TV to some nature channel. I know that my time on the computer for the day will be greatly limited, to keep the headache from becoming a migraine. My body shakes a little from the meds that aren’t in there and I wish that I could just go back to bed. I don’t because there is no reason, whether or not I’m in bed has nothing to do with how my day will go. If I was in the bed I still would not sleep, I would still shake and I would still have the headache, so no reason to just lay there, I will do a little “work.”

I look around the house and want to clean up. I want to do the daily sweeping you have to do with dogs. I want to put the dishes into the dishwasher, to do some laundry, but if I move too much I will be back in the bathroom and I hate dry heaving, it hurts. The little dust monsters (they would be bunnies if I did not have big shepherds) that appear every day will have to just grow for the day. My day will be on the couch, to the bathroom, back to the couch, all day long.

I get out my spiral notebooks because computer time will cause a migraine. I have dozens of notebooks with all my writings. I have written books, they begin in notebooks, they end in notebooks, longhand. I will transfer them to the computer on another day. I have the TV on for educational purposes. Because it’s summer I watch my son come downstairs, get his own breakfast then head to the video game. He turns if on and off during the day as he goes around the house, out to see a friend, back in for some food, which begins with him just stating that he’s hungry. That’s the ploy to see if I will make him something. Today I can barely get myself food. It will do no good to tell him that “I’m sick,” to him I’m always sick. He had never understood sick, he has never really been sick. I cannot remember him ever throwing up because he was sick. I do recall a time that he had a temperature high enough that I did give him some medication. His “sick” usually lasts for a few hours that he can sleep off. The sniffles is his “sickness.” I am grateful both my children are like this, they have the immune system that I had before the military. I did not know what sick was. I never threw-up because of being sick. I did not even know what a headache really was. I remember there was one time that my head hurt, but it was because my brother has taken the receiver of a phone and bashed me across the head with it. I would tell my mom that I was sick so that I did not have to go to school, but she knew better. I could eat anything, the stomach of a goat. Even on vacation to Mexico I ate from a vender off the street. My mom got sick, I didn’t even feel a gurgle. Maybe it would be easier if I had been sick, ever had the chicken pocks, or the flu, or any “childhood disease.”  In our house for medication was an old bottle of children’s aspirin, that’s it, and I think it was purchased years before I was born.

So I sit there and tell him that I have already eaten crackers, which means that’s mostly what I will eat for the rest of the day. As I hear him in the kitchen I am so thankful he does not know the pain that I am in. That he just thinks I “complain” about every little thing. At times I wish both my children would get sick, just once to understand. My daughter does know what a headache is, a headache from not drinking enough water, but not a migraine.

I move my legs because they ache when they stay in one position too long. I push the pillow behind my back lower because my back is starting to hurt from just sitting there. I lean my head back to move my neck so that it does not start to hurt. I want to get up. I want to move, but if I do, not only will I have to run back to the bathroom, but I might get dizzy again and fall. If I fall I am fair game for the puppy. Oh, four month old German Shepherd puppies are bigger than many dogs. My stomach turns because the crackers are not working as much. My intestines are mad and take it out on me in pain, off to the bathroom again for another reason.

I hate not taking a shower every day. My skin begins to itch (from the rash I contracted in Saudi and still plagues me).  I scratch and know if I do not take a shower it could spread, and if I do not keep it under control it will end up in my mouth and I hate when that happens. I have meds for that, but there is just something that is so annoying (more than normal) about a sore in the mouth that itches and when your tongue heads there, it’s just pain. So I get up make a quick detour to the toilet then into the shower for a complete scrub down. I also hate when the rash gets into my hair line, the moving hair irritates it and cause it to itch more.

I want to stay in the shower longer but I know if I try I could fall, getting a little dizzy, so I’m out. As I dry off the puppy helps with my feet. It’s not that I like it, it’s that he loves it and it’s a small thing that does bind us closer. I head back to the couch and look over the pile of things that I still need to accomplish. The bill that’s in collection because the hospital cannot seem to get VA the proper documentation for them to pay, and I’m getting the bill. I’m not about to pay it, it’s not my fault the hospital cannot coordinate with VA to get paid. There’s my claim that has been going on since 2010. I had at one point to pause it because looking over all that information again was causing serious problems (mentally). I see once again the VA has messed it up and I need to send them the same letter stating what I am claiming and what I am not claiming. They have only done this twice this time around, twice but both five months apart.

I totally believe that our records are put into a file asking the veteran information that has already been asked and answered, but it takes my claim out of “backlog” and into “waiting for information from veteran.” I snicker to myself when I see they are again referring to my 25 page statement. The one that on the top states that I am claiming and lists exactly what it is, in numbered points and then goes on to list the evidence to support them. I do this on purpose. You look at just the top and know exactly what I am claiming. But I get another letter stating they do not understand what I am claiming, again say that I am changing an already service-connected rated disability to now be something else. No, again, I am not. I know this needs to be done but that requires the computer and I haven’t been able to have a computer day to get it all taken care of. I try to do it on just one day, or I’m up at night thinking about what I still need to list.

As I write in the notebook, I forget what a certain word is. My husband isn’t around so that we can play the “what is it game,” that I do constantly. So I put in parentheses the definition of the word that I cannot remember. Just a few sentences and I am starting to not remember how to spell certain words, so then the spelling leaves, then I have to continually read over what I wrote because by the time I am at the end of the sentence I cannot remember what I was trying to say. The day writing is now over with. I look up to hear my son ask what I am burning. I go into the kitchen and see that I have put something into the microwave. What it is and when I did it I don’t know but it’s done. I do not cook (use the oven or stove) when I am the only one home because I do not remember that I am cooking until the smoke alarm goes off and I enter the kitchen to battle flames on the stove or take something burning out of the oven when the timer has been going off but I did not recognize that’s what the sound was.

I know that I am not getting better. I know that someday it will be up to my husband to which home he puts me in for my own safety. I know this and I have accepted it, but I still fight it. I still want to see my son head off to college and my daughter graduate, but I might not. I had thought that I would not make it to see them both graduate from high school, but my son is now a Senior and I am still not to the point of heading to a home.

I think of the job interview I have coming up. I know, sounds like I can barely take care of myself. What is most annoying is this is just a day. Tomorrow it would seem (other than the sleep) that there is nothing wrong with me. My medications stay down, I don’t have a headache. I can do the few hours on the computer at a time (still must be careful, too much computer and it’s a headache and then maybe a migraine). But it’s those days that I volunteer at places. Again back to the job interview. I want to work, my kids are to the age that working a little is not going to affect their upbringing, but only part-time while my son is in school. The job is helping other veterans. It’s part-time and because they want another veteran to have the job, it might be a match. They understand that I may call in and say that I cannot make it in that day, well my husband will mostly call in. He calls in when I have appointments that I cannot make. Most employers (and I understand and agree with them not hiring me) cannot hire someone who cannot say when they will be able to work. They have positions that even what they consider are “flexible” I cannot do. I have a good college degree (Ph.D.), I have a great volunteer track, I even great experience, but even with that all, I cannot even get to be hired, let alone keep the job. The last time that I officially worked was 13 years ago where I had no more leave or sick days to take and eventually had to quit. On the days that I could work, I would stay longer to give me the “extra” time on the days that I would leave early or call in. I lasted three years, two different agencies, so really it was a little over a year and all the available take off days were gone, and so was the extra time that I could accumulate.

I hope that I can keep this job. The criteria for it is a high school diploma or GED.  The HR department had to be told yes, that was the position that I was applying for, and yes I understand the pay. I have tried to have my own business, but when you cannot be on the computer some days, well you need to get orders out. And trying to promote your business when it’s pretty much an online business is difficult when you can only be on the computer for a few hours here and there. (Yep days to do this posting). Retail I can just forget. A note on the door apologizing you are not in during your normal working hours doesn’t keep customers. I have thought about teaming up with someone, but I don’t trust easy and that’s something you need to do in a partnership.

I use to be good with numbers, loved statistics, love percentages, but at times you might as well put a kindergartener there because that’s how the brain works, or doesn’t is more like it. One day I can sit and look up how an article did their research numbers and see where they are off, just by looking, they gave too much on each side for radicals. Other days if you give me two numbers that have two digits and have me add them, I need paper and a few minutes, or longer, if I can do it. I can forget how to divide by percentages, something so simple on other days. Then there are things that did not come back. I was an expert shot in the military, ribbon with two stars (three separate weapons). I do not have that depth perception any more. I cannot tell how tall a person is by just looking at them, even looking at them next to something I know the height of. Measuring is only done with tools, guessing is so off. I cannot look at a building and “see” what it would look like if it was another color, or higher. My husband has the hardest time understanding when he says, “so if we put a wall here…” There isn’t a wall there, when a wall does get build there I can see it, without it I cannot. I can pull out of my memory (when it’s working) what a tree looks like. I cannot see what a tree looks like if I have never seen that tree before, no matter how long and detailed you try to describe. I need visuals, pictures.

Oh, do not get me wrong. I am so thankful for what I still do have. I am thankful on the days that I can be me, well the now me. I am blessed for all that I do have. Blessed that I still have a positive outlook, even when the VA gives me another letter that asks the same information that was answered months ago. Blessed that I found such a great husband who does understand that I need more additional help each year.

The ends as it begins, me in the bed, lying there waiting for sleep. Will it come? Yes, when and how much is really the questions. This is a day that I stayed in, a day I did not have to deal with other people I do not know, crowds or appointments at the VA. Today I did not have the other thoughts, thoughts that someone is looking at me odd, or I did not understand that comment that was said, was it sexual, is he hitting on me, am I allowing my past to dictate my reality? That’s for another day. This day was ok, it was at home, and I am still here.