A day in the life

Let me share with you the shape of a day since I developed this autoimmune disease:

I wake up. The room is pitch black, partially because I have purged it of all electronics including my alarm clock with a digital display, partially because I have the blinds closed, and partially because it is four a.m. and the sky hasn't begun to lighten yet. The first thing I'm aware of is the pain in my right shoulder and the inability to close or fully open the fingers of my right hand. Next I feel pain in the small of my back - this has been with me since July fifteenth; I don't think it'll be leaving me any time soon. I try a cautious stretch, and hear the succession of pops and crunches as my joints stir for the first time today.

I assess the damage. Will this be one of those days - still infrequent, thank God - when I just can't get out of bed? Will I be able to shake off the stiffness and stretch out the soreness and get to work on time? Or will it be the kind of day when I manage to make it up, get ready, and get out the door, but have to rely on the cane and take huge quantities of NSAIDs to get through the day? The signs point to the third value being most likely. I can move, but it hurts. I'd like to settle back into bed and sleep - I have two more hours before I have to get up - but the pain and stiffness prevent me from achieving a comfortable position, and given how hard it is to move, it'll take me a couple of hours to get going anyway. So I get up. This takes a while. The days when I could sit up and then hop out of bed in the course of a couple of seconds are long gone now. It takes pushing, prying, cautious sliding, lifting my legs over the edge of the bed and putting my feet on the floor, waiting until the pain equalizes enough to stand. Once I'm on my feet, it takes more than a minute to ratchet myself upright. I stand, bent-kneed, feeling my vertebrae align themselves slowly, one by one. The collection of disks, nerves, and bones at L5/S1 shriek in protest, but they finally comply.

Thirty minutes later, I am showered, I have coffee in hand and am seated on the sofa. I read, stretch out more muscles, rotate the joints that seem stiffest, and work on getting my body ready for the day. By six thirty my daughters are out of bed, and I'm thankful again that they are both in their teens and don't need my help in the mornings. They are out the door by ten after seven and it's time for me to start getting dressed and ready for work. This morning, I am able to fasten, snap, zip, and button everything that needs it. Rotating my shoulders is painful but not impossible, and I can even bend over to tie my shoes. Now it is almost eight o'clock, and I have to leave for work. The journey outside to my car means navigating three steps. Even on the best days, this is difficult. This morning, each downward step takes its toll on my lower back. By the time I get into my Jeep, the pain is intense. I breathe through it for a few minutes, then start the car and head out.

It is eight o'clock when I park my car and head into the building. My grip is so bad that it takes over a minute to unlock the door, and then I'm unsteady enough that I can't hold it open, and it falls into me, knocking me forward. I stagger but don't fall. Saving myself from a trip to the floor cost me, though. My lower back and my right hip are throbbing. Navigating the next locked door is a little easier - the door is lighter and the lock isn't as stiff. Finally, I am in my office. I spent three hundred dollars on a Serta office chair that is specially made for people who have a lot of back and hip pain, but I know that after twenty minutes in it I will be in agony. I have to work, so I don't have a choice. It isn't the chair, anyway - it's leaning forward and back, typing, looking at a screen, sitting in one place all day. No other job would be easier on my body, but it is always better when I can work from home - I can sit with my feet up on the couch, or even lie down, with my laptop balanced on my knees or my ribs, or on a bed-side tray. This keeps my body from stiffening up and helps with the exhaustion, too. Even though I am able to work from home, I push myself to come in. There are a lot of reasons why, and I haven't even really begun to understand them all yet.

It is eight-thirty now. I have answered all the pertinent emails and I begin reading through the informational ones for details, updating my calendar. By the time that is finished, I need to get up and walk around. I have shooting pains in my right side, radiating outward from L5/S1. My upper back aches in the area between the left shoulder blade and spine, and every time I move or flex the area, I can hear minute popping noises. The joints of both thumbs are swollen today and it is difficult to type. Since I have a mass of data-entry to complete today, this is really going to be problematic. My pain level is at a seven on a scale of one to ten, and it isn't yet nine am.

By eleven, I have taken all the NSAIDs and Tylenol I can have for the next six hours. My pain has escalated to a nine, and I feel nauseated. The only improvement is that my upper back has grown numb, and all I can feel there now is a cold tingling sensation. By one p.m. I am exhausted. My eyes keep closing on their own. Since I was too queasy to eat lunch, I decide to take a break now and move to the comfortable chair in the corner. I set the alarm on my phone to wake me in forty minutes, just in case, and it's good that I do, because I fall asleep almost immediately afterward. The alarm goes off and wakes me. I am more tired now than when I sat down. Exhaustion rolls over me in waves and it takes physical effort to keep my eyes open. In a perfect world, I would be able to lie down and sleep for a couple of hours, and when I woke I would be refreshed and ready to work. But this world is anything but perfect. I get up, make coffee, and get back to work.

The work-day ends at five, but when I get home there are dishes to wash from last night's supper. The kids have decluttered the living room and kitchen area, but the floors still have to be swept. The bathroom is a disaster, and I can't imagine scrubbing the toilet or tub, so I just close the door on that mess. After I clean, cook, and sweep it is after seven. The pain is so far off the scale now that I'm not even going to try to quantify it. I brush my teeth and collapse into bed, but I leave the light on and the door open so my daughters know they have access to me. They come in and out with questions and things to share about their school days. It is after ten o'clock when the house gets quiet. I know I am not going to sleep for quite a while - I hurt too much. The last time I check my phone, it is ten after twelve. I finally fall asleep, only to wake up again at four fifteen, when it starts all over. Welcome to my world.


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