It’s the little things, taken together, that add up to a whole different life. Looking at my day there are so many little things that are different, so many little things that I have to do differently, because of my illnesses. So many little ways I must be different.
When I wake up in the morning, the first thing I do, sometimes before I open my eyes, is move my fingers and toes. I am checking to see how stiff and swollen they are. After that, I take a few minutes, giving myself a mental pep-talk.
After I get up, I go into the kitchen to get myself breakfast right away. I can’t take half of my meds until I eat, so hungry or not (usually not), I need to eat. I have yet to find a breakfast food I consistently enjoy. Mostly I resent breakfast.
At breakfast, I take 8 1/2 pills.
On Friday mornings, I add in the need to refill my pill container. I can no longer trust myself to remember which meds I have taken each day, so I have a weekly pill holder that is divided into four slots each day. So Friday morning, I fill all the slots with the appropriate pills. Today I realized my medication list wasn’t up-to-date so I updated it and reprinted the list.
After breakfast I chill. I wait for my body to warm up. That’s how I like to think of it, like a car that needs to be warmed up before it can go anywhere without alot of noise and resistance. So I sit and warm up. Then I take kids to school. In my pajamas. I realize this is bad. I realize I should brush my hair and get dressed. But I just can’t do it.
When I get home from that, I warm up some more. I also pace my house as “exercise” so my back can get loosened up. Somewhere between 9-10, I do my back stretches on the living room floor.
My day is typically split in parts: pacing house, resting, stretching. Usually somewhere around lunch I find motivation for a shower. It is generally an hour after my shower before I find additional motivation to dry my hair. The last few weeks, drying my hair is an adventure: I am waiting to see if my hair starts to fall out. So far, no more than usual.
I pick up oldest from school at 2:30. This is also an adventure. Driving is difficult, painful. Nerve-wracking. Somehow it seems that there are too many things happening. I get over-stimulated. I forget which gear I should be in sometimes. I have to really focus on what I am doing. I find myself excessively speeding without realizing it.
I generally don’t do the dishes- my one consistent household chore- until around four. Most days I do okay with this, and for sure my hands love the hot water, but there are days that I can’t seem to do a good job. Those days Bill and Riley point out the still-dirty dishes. Those days I feel deeply ashamed that I am no longer capable of that simple task.
Some days I make dinner. Some days I don’t mess up dinner. Those are the good days.
At dinner, I take another six pills. Except Wednesday. Wednesday I take six at dinner and four more a couple hours later.
Most days, somewhere among my little bit of driving or my rare errand, I have to take pain medication. The prescription kind. No more tylenol for me! No sir. I was really bothered by this at first and put it off as long as possible, until the pain was debilitating. Then I realized that was dumb. If I can take medication when the pain first starts, then I can head it off. So now, I am a more frequent user of Tramadol. Life is easier that way.
Some other little things that are different about my days these days:
I spend a lot of time thinking about my health, my body, my symptoms, my medications, etc. Every new pain must be analyzed: is it fibro? RA? A new things altogether?
I move my toes and fingers deliberately, checking for new problems, checking to make sure they still move
I am constantly aware of how much pain I am in, of what my day needs to look like based on that pain
I try to wear a bra as rarely as possible, because they are just too uncomfortable
I wear long sleeves, and sometimes a sweater too, almost always even though it is around 70 in my house, and sometimes outside as well. I am just cold all the time.
I am foggy in the brain. Forgetful. I use the wrong words for things. I can’t remember what I am doing, where I put things five seconds earlier. Unfortunately, I am not foggy about being foggy. I always know that I am foggy, that I am forgetful. That my brain no longer operates the way it should.
It is all the little things that add up together to exhaust me, to make me sad and mad and frustrated. These things will become routine soon; these things will no longer seem extraordinary to me soon, but will be part of the new normal. Until then, it is all the little things that constantly remind me of the life I lost, and the new one I must get used to, so I can move on. Accept. Thrive. Until then, I will take it one little thing at a time.