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.
