Well, these last few days, besides convincing the world that I am some sort of disability sex addict, I have actually been trying to enact The Plan, which started on Sunday. The basis of the plan is two fold; first is attacking the limitations of my body and second is attacking the limitations of my mind.
On reflecting about my life I realized that one thing I have always hated is a bully. Indeed, I have an intense reaction and step in when I see someone being bullied, which usually ends up with me being bullied instead. That’s how it always happened in the workplace anyway. And to me, the biggest bullies in my life right now are 1) my disease and all of the friends it brought to the party. And 2) the ‘medicos’ – the vast array of people who I spend waiting upon so they can tell me what to do, or what I SHOULD do; which oddly often includes my own home care.
So, The Plan is to attack each bully with a different strategy. For number one, I have proved, through monitoring of daily living that when I should be “maintaining” muscles, I am actually damaging them, and they are slow to repair. I have also proved, through monitoring two different operations, that traumatic injury, while creating pain and imbalance in my normal autonomic systems (erratic heart rates, BP, etc), does heal at the NORMAL rate. From this my theory is that for whatever reason, my autonomic system to heal the daily micro tears and maintain muscle mass are NOT working correctly but the systems to repair traumatic injury are. So, I intend to engage in activity that is strenuous enough to both break down muscles AND cause me to sweat (something I don't do anymore; hence the heat intolerance and passing out). I hope to do this twice a week for eight weeks. Yes, my body heat and heat intolerance increases after such exercise, as does my pain, and weakness for a day or two afterward (plus my heart rate and BP go a bit crazy, and I lose hand coordination and strength). But, if I am correct the benefits are: gaining back muscle mass and strength in my upper body, an increase of use in the circulatory system and benefits by increasing my auto-immune system against colds and flu’s (which for my disease could be potentially lethal – bummer!). The question is, how much pain can I stand and for how long? The heat problem is solved because; hey, we are going into December.
The second part of the plan is to deliberately devote time and energy to activities of ABSOLUTELY NO CONSEQUENCE. Part of being a ping-pong in a medical system and having a chronic disease is that you MUST become disciplined, take your pills regularly, don't overtire yourself, monitor yourself constantly. I live in a jail with an invisable jailer. At the same time I am trying to compensate for a life which is, time to face it Elizabeth, gone (and PERMANANTLY gone), I am always having the feeling of playing catch-up ("I used to be able to do so much more!" - ah Shut it Elizabeth! That boat has sailed!). I am ever attempting to make the time I am awake, the time I have some strength, the time I can focus into “meaningful” time.
I believe the first step in taking control of my life is ironically saying “No,” and first of all, saying it to myself. I need to do things that are wasteful, wanton, and indulgent. Yes, I can write every day, but I also need to spend my time just sitting in a coffee shop feeling the winter sun shining on me through the window; and do it for 20 minutes, or an hour. I need to play a computer game (something I haven’t done in a year). Do some thing that I am not very good at and which doesn’t really matter in the greater scheme of my life. Not just do things so that I can have memories or prove that I have done them (not that I am going to stop doing those too), but because I am indulging my curiosity, I am trying something new, I am taking a road less travelled.
On Sunday, I started the second part by going with Linda to the local video arcade (the first time in over a year); we played Air Hockey (I lost, every time I would catch up, she would slam another one home – turns out when I am seated, I don’t have that reach advantage anymore). We finally found a “Driving Game” that didn’t require feet; it was racing hyroplane boats and we played until we had each won a couple times. The girl running the till liked my red skull shoes; the girl grooving on the dance machine liked my velvet corset. I wasn’t just playing Air Hockey, I was a person again, wasting away a hour or two on a Sunday. Yes, I could have, should have instead been filling out insurance forms and making lists of doctor’s appointments. But I was playing Air Hocket and racing boats and the world didn't end.
On Monday I was back to boxing for 80 minutes. This time it took me 30 minutes before I started to sweat and I freaked out the instructor a little bit (the whole loss of trunk support, eyes rolling back thing). But I hit the heavy bag, I threw over 200 punches in a three minute round of shadow boxing, I did the glove practice, did two rounds of three minute bouts and participated in everything the class did; including throwing the medicine ball around the circle faster and faster in “pass the hot potato” games at the end of class. I was high on endorphins when I left and hallucinating with pain by the time I tried to go to sleep. And when those pills wore off in the wee hours, it was another 20 minutes of moaning and agony till the new ones kicked in. So, a few drawbacks, but I HAVE a plan, and I think a person with a plan, even a plan that others might think a bit daft, is still more motivated, and trying to wrestle with life (instead of with the disease) than a person who just lets the days drift by. I am done with life drifting by.
So what if I am wrong? What if I waste a month doing frivolous things (as well as the needed things) and spend two months in pain and I DON’T get better? Well, in that case, I will come up with The New Plan. But let’s try cheering on The Plan for a while first and see how it goes. And this weekend, I am so going to kick Linda's butt at Air Hockey.
1 day ago