A Day in My Shoes

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!