Benny
recently recommended that I write something describing how I go about my day –
to help people understand how I cope, because I was explaining how people seem to be under strange assumptions concerning what I do to
deal with my chronic illness. I’m taking his advice! Also, several have asked, and I want to help them understand as best I can.
I usually
start my mornings waking up as gradually as I can. I am incredibly groggy and stiff, in the
morning, but I try to ignore whatever is hurting.
Getting
dressed is hard. I like to lay out my clothes the night before, because it’s
hard for me to make decisions in the morning – especially when decisions need
to be made quickly. At the same time, that might not be helpful, because my
skin reacts differently to different fabrics and cuts on a day-to-day basis. I
might put out a skirt and blouse for a day, get up that morning, and realize
that anything cinching around my waist will cause too much pain, so I wear a
dress instead. I try to gauge what I will be able to wear by the forecast, but
it doesn’t always work.
Benny
blesses me by making breakfast in the morning. If he didn’t make it, it
probably wouldn’t happen. Since my brain seems to barely function, thinking
through preparing something and actually doing it seem like two huge mountains
of work. When we first were married, I really tried, but he gradually took over
without any decision being made. I was very thankful and relieved.
We eat
breakfast, have family devotions, and then my day begins. If it’s a work day
for me, I go to work. Although I can’t be explicit about my workday, I can say
that I work for five hours, five days a week, and I spread out the duties in my
client’s home over the five days in such a way that it doesn’t exhaust me more
than it needs to. I get home around 2:30PM, exhausted, and try to sit down for
awhile, collect myself, and reboot as much as possible before mentally
switching over to “housewife”.
At home, I
try to keep the house generally neat and uncluttered. If there’s only a little
bit to clean up every day, it’s far less stressful and physically demanding;
however, sometimes I can’t even do a little, and rooms get away from me. Once a
week, I dust thoroughly, vacuum, or scrub floors. Rarely do two of those
overlap in a day. I keep a clean house because messiness stresses me to a point
where I feel immobilized by the thought of having to gather enough strength to
clean it up. Every week, I try to include a more vigorous task, such as wiping
down cupboards or cleaning windows, but these rarely get finished because of
everything else.
I’m sure it
sounds like I have it pretty easy – light cleaning every day, with other tasks
spread out – but it isn’t that simple. Every task has to be outlined beforehand.
For example, if I decide to clean the living room, my list might look like
this:
Clean
living room
-clean up
floor
-clean off
coffee table
-put away
books and CDs
-straighten
up bookshelves
-dust
-vacuum
-wash
windows and mirrors
-wipe off
coffee table
It seems a
little excessive, but if I don’t write it all out, it’s hard to finish, and I’m
constantly worried about forgetting something. My “to do” lists are detailed,
and I write them every day, including the things I do daily. A recent one:
To Do
Dust:
-living room
-bedroom
-bathroom
-study
Shower
Dishes
Supper
Sweep
kitchen
E-mail Dad
Clean
bedroom
For every
task, I will have to convince myself to take it on. I rarely feel up to it, and
I would rather sit and nurse my aches and pains, but I force myself to do
everything because it’s my job. I’ll convince myself to dust and take
fourty-five minutes to do it. I plan to take at least two hours to prepare
supper, so usually by the time I’m done dusting, it’s time to start cooking.
First, wash the dishes. It will take me awhile, because I take ten to fifteen
minutes to prepare to wash dishes – by stacking them, putting hot water in the
sink, and making sure there aren’t dishes hiding in other places. Washing them
usually takes around half an hour. I have a stool to sit on so the standing
doesn’t tire me overly much, because I need to be careful about using up energy
before I even get around to making supper.
After the
dishes are washed, I can start thinking about supper. I wipe down all the
surfaces, then I look at the menu. I write out a monthly menu, which keeps me
from stressing about varying the menu and forgetting groceries. Maybe it’s an
easy day and the menu says I planned for spinach omelets. First, I get out all
the ingredients I use for omelets: eggs, cheese, whatever meat I have,
potatoes, corn, spinach, and perhaps other, random things. I chop up or measure
everything into separate bowls, just as you would see on a cooking show, so
everything is prepared, then I set out all the dishes I’ll need: plates for the
omelets when they’re done, a spatula or two, the whisk, the skillet, and a bowl
to whisk eggs in. All this preparation usually takes me half an hour to
fourty-five minutes. Then I start cooking. Omelets are relatively easy. Cook
the potatoes in the bottom of the skillet, whisk the eggs and chopped spinach
together and pour over potatoes, flip omelet and add ingredients, put on plate.
Half an hour to fourty-five minutes later, I’m done. This process seems overly
complicated, but it’s the best way I’ve found to cook without causing undue
stress.
When supper
is eaten, I do internet tasks, which I try to keep short. When that’s over, I
might take a shower. This is probably the most exhausting thing I’ll do during
my day, because it requires constant activity and doesn’t allow for breaks. I
usually take an hour to prepare, shower, get dressed and clean things up
afterward. If I’m having a bad back day (meaning I can’t stand too long;
chronic back pain means it always hurts – some times worse than others), I
either take a bath or use my shower chair. The rest of the evening I usually
spend off my feet or doing something with Benny. Once in awhile, we’ll walk or
bike somewhere or nowhere. Sometimes we finish some cleaning/organizing task
together or just sit around and do nothing. During school, I put a plate and
note together for Benny’s lunch.
I really am
very weak, and this is something I abhor about myself. I was once active and
involved in other people’s lives. Now, social anxiety and the need to preserve
energy keep me at home unless I need to go out or unless someone kindly plans
an event. I do not, however, limit myself unnecessarily. I often can do more
and am willing to do more active things when asked, but people often – while trying
to be kind – refrain from suggesting things they think might be too much for
me. Although I understand wanting to be careful, I know my limits better than
anyone, and asking me to do something that may tire me or hurt me isn’t
something to avoid. I have no problem with declining activities I know will do
more harm than good, and I prefer being able to make that decision to it being
made for me.
Depression
as a result of loneliness is something I constantly fight; I have few friends
here, at this point, and Benny has to tend to school and composing/practicing.
I try to fight this mostly by having a book on CD to listen to while I’m
cooking or cleaning and also by having open house hours when women are welcome
to visit me. I desire and need almost constant companionship. I used to think I
was a loner, but I’ve found that to be alone is something I don’t actually
enjoy unless I’m having personal devotions (although I’m not truly alone then,
either :)). When people come visit, I am often thrilled beyond words.
Which brings
me to open enthusiasm. Many people think I’m quiet, reserved, and shy. This isn’t
so much true as it is true that in public situations I find it difficult to
keep from panicking. The way I fight panic (which is something I fight as a socially
anxious person) is by mellowing out. People who meet me in the privacy of my
home are often surprised by the openness I am comfortable with there. When I’m
in my personal space, surroundings which are known, comfortable, and
predictable, I am in my element. Especially if Benny is there, I feel safe.
Being in public feels incredibly unsafe, no matter how illogical that feeling
is, and I tend to reserve all emotions to damper the one which feels most
threatening. One of the reasons I encourage people to come visit is because
they get to see me at my most comfortable. I avoid anything even remotely
resembling a party for this reason and also because I have a hard time
concentrating when more than one person is speaking at once. When this happens,
my mind is frantic to grasp onto anything, and when my brain is frantic, I can’t
concentrate on anything.
One thing
about dealing with my brain which is hard for a lot of people to understand is
that it doesn’t process things quickly. As a result of this, everything I do
has to be thought through. Most people do things mechanically, but it is rare
that an action becomes so familiar I can do it without thought. When I’m
walking, I move slowly when crossing the street or a lane. When I’m driving,
the faster I have to react, the more stressed I am. Getting ready to go
anywhere, I stop at the door and think through anything I might have forgotten
(to the great frustration and training in patience for my husband). I can have
a conversation with a person, but I think through my questions and thoughts
more slowly than many, and I rarely speak before knowing exactly how I will say
a sentence. Benny has learned to ask: “Are you avoiding the conversation or are
you thinking about what to say?” when we’re talking. I may think about a conversation
for days or even weeks before I feel as though I’ve full processed everything
that was said. People say they hate it when they think of the perfect response
a few minutes too late… I usually think of a response whole days later.
There are
other things I deal with differently than other people… to mention them all
would take far too long. I welcome questions whenever people have them, and few
questions do I refuse to answer. To end, I’ll make a short list of things an “outsider”
can take from this.
1. You
don’t need to show me kindness by not asking me to do something with you
because I might be tired or in pain. I’m always tired and in pain! You can show
me kindness by asking and letting me decide, not really caring how I answer.
2. By
the same token, you don’t need to do things for me to help me avoid pain and
exhaustion. If I need help, I will admit it when you ask me.
3. If
you really want to know me, visit me in my own home. I love visitors, and when
they are in my home, the situation feels far less threatening to me.
4. Understand
that I process things slowly. If I am moving slowly or taking a long time to
respond to a question or comment, it isn’t because I’m trying to frustrate you;
I move at a different pace.
5. I
need companionship like any person; I just have a limited way of receiving that
companionship.
6. I
don’t like idleness, and I don’t coddle myself, but I also am careful where I
expend energy. If I save energy by not doing one thing, I can spend it doing
something else. This is a matter of survival. This means I will often leave
aside things other people see as “correct”. One of the things I don’t expend
energy on is open excitement. I’m really and honestly excited in my heart, but
the energy open excitement takes isn’t worth wasting.
7. I
choose to live life outside of my chronic illness. It debilitates and
frustrates me every single day, but I try to live with an attitude of
thankfulness for all I can still do. You can ask me how I’m doing – I’ll be
honest if I’m not having a good day – but then I’d rather drop it and talk
about better things-like how glad I am you took time out of your day to say hello!
