Wednesday. Hump day. Alive after Five. Dollar beer night. Thanks to the brilliance of American marketing Wednesday’s are now meant for partying despite it being a school night. Like many before me, I use to take full advantage of this social convention. Don’t get me wrong, I don’t think I was an alcoholic or party animal; I was just another person doing what the t.v. told me what was accepted behavior for a Wednesday after work.
Now as we all know, things change. The basic construct of life is change. School night parties are now replaced with books and The Daily Show. We get older, sometimes wiser, and beer hangovers hurt more than they use too. Many think that change is supposed to be scary, it’s not, it’s just change. My particular change took a hard left and ran right into methotrexate. For those of you that don’t know, methotrexate is a low dose chemotherapy drug given to autoimmune arthritis patients in the hopes of convincing my body to quit attacking itself. I’ve gone from Henry Weinhard’s beer and cheese burgers to a medicine that glows in the dark that I have to inject into my thigh muscle once a week. Life.
I’m not sure if it’s my personality, the way I was raised, Idaho culture, or just my life but I don’t spent time thinking about what my life could have been if I didn’t have to take methotrexate or didn’t have X diagnosis. I have a hard enough time remembering my age or what I’ve accomplished in my life. Instead of living in the past, I work hard at keeping my focus on the moment or tomorrow. Sometimes I do spend time wishing I continued to climb upwards instead of falling off a cliff rock climbing but even then you would be surprised at how little I wish for that. Sure, I never said growing up that I wanted to be a chronic pain patient that has to take a medicine that glows in the dark. No one does I’m guessing. All that means is that I’m probably not going to make a living as a fortune telling gypsy, I should stick to being a senior financial skiing patient advocate specialist with a cookie addiction. I wonder how that would look on a business card.
That said the very first thought I had upon waking this morning was that tomorrow is methotrexate day. This happens often now. For my own sanity, I like to call methotrexate meth just to let you know. Meth gives some wicked hangovers. The worst symptom of these wicked hangovers is the near constant nausea that can last for as little as 24 hours or my worse has been a full week. Food becomes scarier than snakes or commitment, sometimes even low calorie Gatorade can be too much for my system. Dehydration is a close second to the nausea which becomes an issue if water and Gatorade exacerbate my hangover. Two weeks ago even my boss could tell that it was Meth Wednesday based on how I looked and sounded on Thursday. Man, I miss dollar beers and cheeseburgers.
My chronic pain and arthritis types are invisible. You can’t see my pain or my destroyed joints unless I show you my x-rays. I would also include in that invisible tag the days I’ve lost to meth. Yes, I continue to come to work with my meth hangover. Yes, I’ve foolishly tried to muscle my way through rides, skiing, mowing my yard, dinner with family and friends, conferences, and general life activities. No, I don’t go to dollar beer nights or eat as many cheeseburgers as I use too. What you don’t see from me and my fellow patients is how hard we have to fight in order to overcome this bizarre medicine. Quality of life is just as much about time management and time choices as it is wanting to live a meaningful and productive life.
Quality of life is a tricky term because it means something different to all of us. No one wants a poor quality of life. Personally, I don’t believe I even have the right to argue that my quality of life is poor because of things like my meth or chronic pain. Although no child is wanting to grow up to be like big Al, I have a good quality of life despite what many of you might think or my writing might lead you to believe. This post isn’t necessarily about my life though. My intent in writing this post was to make you think about the time management function involved in being a chronic pain and autoimmune arthritis patient. Like life, time changes constantly. Yes I would rather be skiing or listening to music at Alive after Five on the grove on Wednesday’s versus taking my meth, but that is life. I can only accept that and then work towards skiing on Saturday or Sunday instead of fighting the fact that I have these moronic conditions and medicines.
My life has changed; there is very little sense it playing the “what if” game in my opinion. For me, the how might we (I)… is a much more beneficial use of my time and leads to a higher quality of life regardless of what my meth tries to do to me. For example, last night I was looking at how I might climb a 14er mountain in Colorado. My meth and opioids are not meds at this point, they become time management tools so I can use my strength and heart to reach the top versus letting the pain win. Here is the somewhat hard part to remember since I am so competitive, even if I were to fail to reach the top my quality of life would still be high because I choose to try instead of continuing to live in a past beer garden or at Alive after Five.