My alarm goes off a half hour before I actually need to get out of bed. That probably isn’t that strange, everybody likes the snooze button, but that isn’t the reason I set mine early. I need the extra time to assess my body. There is something called “The Spoon Theory” by Christine Miserandino, in which she explains that for the chronically ill every activity in life is a transaction that costs a spoon. When you are healthy you have unlimited spoons and you don’t need to worry about it, but when you are chronically ill your spoons are limited and you must spend them wisely. Each day is different, like everyone else I have good days and bad days, so some days I wake up with more spoons, some days I wake up with less and some I wake with none. Right now, I’m counting my spoons. Mornings are particularly hard for me because over the course of the night my body processed all my pain meds so my pain levels are high. I know to keep that in mind, but this is enough to make Mother Thersa grouchy. I’ve completed my assessment and my body is running very low on spoons today. For me a good day is about eight spoons, today I have about four. It is decision time. I have yet to figure out if it is better to go to work until I keel over and then go home or to just stay home. Due to my chronic illness I miss a lot of work, so I struggle to demonstrate my value to the company in the time I am there. Of course I stress about losing my job and the more time I miss the more stressed I become. On the other hand, if I push myself to the breaking point today I might miss two days of work to recover. It is possible to go into a spoon deficit and have to spend days in bed recovering. It is a balancing act. It’s also a catch 22 and I’ve been caught in it for six years with this job. I love my job, so I fight my body, which is a losing battle that I absolutely refuse to acknowledge.
In my infinite wisdom (ha!) I decide to go into the office for as long as I can. All my meetings are in the morning so my appearance or absence will be visible. I started showering at night since I got sick because a ten minute shower required a half hour to an hour recovery and I just couldn’t do that in the mornings. So, I got dressed and rested. One spoon gone. Took my meds, brushed my teeth and hair and pulled my hair back. Doing my hair or makeup isn’t even on the radar anymore. Two spoons gone. I set my kettle to boil water for my tea and sat down and rested. Three spoons gone, I’m almost out of spoons and not even out the door. Crap! The water was ready, but I wasn’t moving. The color had drained out of my face, I was in a cold sweat, I was shaking and near tears. I needed to go to work. I didn’t want to lose my job. I wanted to be normal. I wanted my life back. Why can’t I just be normal? I slumped in my chair, silent tears running down my face. It wasn’t fair. I don’t do anything but rest on weeknights. I go to bed by 8 pm so I get plenty of rest. I also make sure I have one day of full rest on the weekends. I have arranged my whole life so I can work and I still have so many days when my body just can’t do it. I wanted to scream. I imagined throwing a tantrum like a five year old, throwing my body to the ground, kicking my legs, pounding my fists, and screaming at the top of my lungs about the injustice of it all. Of course, I didn’t have the energy to actually do it, but the image was satisfying. I sighed. I knew I was hanging on by a thin thread, I hated my body, I hated the situation. I was angry and exhausted. The irony that I was too tired to be properly enraged was not lost on me. So I gave it my most emphatic eye roll, to prove to I don’t know who, that I was aware that I was the butt of someone’s cruel joke. I sat there for several minutes hoping that magically I would find more energy. That somehow my situation would change. Of course, it didn’t. Now it wasn’t really a matter of assessing my body. I knew I was down to one spoon and that spoon would most likely be used up in the course of getting out of the house and the drive to work. Clearly, the logical thing would be to call into work and go back to bed. Unfortunately, my brain wasn’t currently interested in logic. It was sorting through an entirely different kind of math. Math dominated by frustration and anxiety. In my head I was running through the last three weeks. I would have gone further back, but I couldn’t remember any further. I was counting the number of days I called in sick to work and adding in the days I had to leave early. No matter how I cut it, there were just too many. I couldn’t remember a single week that I made the whole week without issue.
Briefly I remembered the days when missing work only happened on very rare occasion and not because I couldn’t tough it out, but because I had something catching like strep or a sinus infection. I stayed home the required 48 hours allowing the antibiotics to ensure I was not Typhoid Mary. Then I moved on with my life, whatever it was went away and, like everyone else, I promptly forget the misery of being sick. Oh, the good old days. Wait. What? Why are those my good old days? I shook my head at myself. My good old days are the days when I had my health, that’s why, you ninny! Yes, I led a very fun, exciting, adventurous, motivated, and busy life, right up until I couldn’t.
This time I shook my head to clear it of the memories of what was and the comparisons to what is. That is a very long and dangerous road to wander down and I still had a decision to make in the here and now. I start to hear the lyrics to the song “Should I Stay or Should I go” by the Clash “Darling you gotta let me know. Should I stay or should I go?” That pretty much summed up my dilemma even if The Clash was referring to love and I’m thinking about work, hey, everybody has their priorities. My brain is a particularly strange place to live these days. We all think by associations, moving from one topic to another according to what your brain decides is important. Some days, I swear my brain is run by a five year old with ADHD who has a strangely pervasive knowledge of pop culture of the 80’s and 90’s. Instead of keeping me on topic or connecting me to relevant knowledge my brain pulls out tons of music, cultural knowledge, and personal (mostly embarrassing) memories of my life during that time.
Ok, I ushered my thought process back on point. Stay or go. Logically I should stay because I know without a doubt I won’t make it eight hours at work. I may make it a few, but I will be very close to useless and run the risk of running a spoon deficit and missing tomorrow and possibly the next day. Additionally, there is the embarrassment factor to consider. It is entirely possible to be so exhausted or in so much pain that you vomit. Doing so into the garbage can in my cube in front of everyone ranks pretty high on the mortifying scale. Again, all reason and logic states that staying home is the right choice. However, when you are chronically ill and in pain one of the biggest issues is that rational thought and reason go out the window. You can be aware of this fact and still make decisions based on emotion instead of reason. Somehow you can’t help it.
My decision is based on anxiety. I love my job, I’m proud to be a part of my company, I believe in what we do, and I believe we are making a difference in the world for the better. I may only work in my tiny corner of a very large company, but the company makes it easy to see what discoveries and inventions have changed lives. Family members and friends use the products I work on and they love them. This place really matters to me; the job is an important part of my life and one of the last things that keeps me grounded and moving forward. I don’t want to lose my job! It is that sentence repeating ruthlessly in my head that moves me to pour the hot water and drop a tea bag into my to go cup, walk out the front door and drive to work.
Once I get to work, find a parking spot, I turn off the car, but I don’t move any further. I stare at the laptop bag as if it was an anvil and I have to carry it and me out of the car to my desk. Just getting out of the car period seems like a herculean effort. I sit in silence and stillness for about ten minutes psyching myself up for the next step. I only have this step then I just have to sit in my chair, read my emails, and dial into my meetings. I finally manage the long (to me) trek to my desk.
I take a huge sigh of relief that I made it, well, this far anyhow. I can sit silently and rest while my computer boots. The early crowd is streaming in and people are saying hello. I manage a weak “morning” in response. I suspect that most of my coworkers think that I’m a jerk because I don’t socialize much. The reality is that socializing is just another transaction and I decided long ago that it was more important to get my work done than to win any popularity contests. I’m sure they all wonder why I still have a job with all the days I miss. I don’t tell people about my illness. I don’t want them to think of all the things wrong with me before they think of who I am or my function within the company. These were all calculated decisions, even if they have cost me emotionally to have no one at work understand my struggles. A lot of my decisions since I got sick involved picking the lesser of two evils. No fun, but we all do what we have to do, right? The computer is up and running, my inbox is plenty full, and I have one meeting in half an hour and another right after that. I take a deep breath, I am out of spoons, my body weighs a million pounds, most of that is my head, my body is covered in sweat, and I have another decision to make. I’m in pain, it has been increasing since I opened my eyes this morning. I have my meds with me, I always do, but I have to estimate how much to take. The meds will make me sleepy, they sometimes blur my vision, they make concentration very hard, and they can make me a little loopy, which is a dangerous thing to be in a meeting. So I have to determine how bad the pain is and how quickly it is increasing versus all the side effects and what I need to get through in the next few hours. On top of it my body doesn’t always react to the meds the same from one time to another. Sometimes I don’t have any side effects, others the side effects are very intense.
I don’t want to go into a meeting and have everyone think I’m drunk, but I also don’t want the pain to get out of control. Managing chronic pain is a balancing act, if you let the pain get too bad pulling it back can take huge amounts of meds and days, not hours. The goal is to keep the levels of pain meds in your blood even, which requires a bunch of trial and error. You need to learn your meds and how your body reacts, learn the signals your body gives off when you are too low on meds or too high. Its all about learning to read and interpret your own body, its an imperfect science, and even after years of performing this balancing act everyday holds the possibility of mistakes and consequences. My pain is pretty significant because I took the least amount I could when I got up. I was already worn out and fighting meds drowsiness seemed too formidable. I screwed up though, I didn’t take enough to control my pain and I can feel it getting away from me if this next dose isn’t enough not only will I be paying a spoon deficit, but I will also be spending a lot of time leveling out my pain. I take my best guess, swallow the pills and hope there are no regrets at the end of the day.
I’m moving slowly through my email. I get a few lines in and have to go back because I’ve forgotten what I just read. I read and reread and reread again all of my responses, making me the slowest employee on the planet, but I want to make sure I’m making sense. A message pops up on my screen, I’m due in the meeting in ten minutes. I grab a pen and notebook and start the walk, knowing it will take me longer than anyone else to get there. I get there just in time, fall into a seat, close my eyes, and try to collect myself. People are making small talk and laughing around me, yet another instance where I lose the opportunity to improve my connections because my body is too busy just surviving.
The meeting starts and the words on the screen are starting to blend together and the presenter is starting to sound like the adults from Charlie Brown “Wah waah wahhh wah wah.” I smile, I’ve hit the point of exhaustion where you think everything is funny. Having the giggles is not optimal in a meeting. I manage to keep my amusement to myself, but I retain nothing from the meeting and am immensely grateful I wasn’t asked to contribute anything.
At this point I know I’m beaten, no amount of anxiety or stress will enable my body to get survive this work day, actually, I’m not entirely sure how I’ll manage to get out and get home. I need to get back to my desk to get my stuff and drive myself home. By some miracle I drag myself to my desk, grab my stuff, and limp to my car. I make it home only to find myself sitting in my car again. This time I sit for a good while working up the strength to get into the house. Once I’m finally in the house I take a full dose of pain meds, crawl into bed and everything goes black. Today I tried and failed. I’ve certainly had better days, but if I were honest, today was my normal, making it through the work day, much less the work week, was the rarity.