Token Life – A Story About How This Began

Token Life – A Story About How This Began

I might have gotten ahead of myself with this blog. Most of those I think who originally came to this blog, I assumed knew me already. I am learning that more and more are coming here who don’t. Let me catch you up.

I am a 43 year-old-woman who is on disability for suffering from neurocardiogenic syncope with dsyautonomia. Basically, for no known reason other than poor genetics, I have an Autonomic Nervous System that does not function properly. The list of symptoms this disorder combination creates is crazy long. More trouble some is the inconsistent presentation of the disorder given the inability of medical community to really understand the mechanism behind it. It is just easiest to say my autonomic nervous system is fucked up, in the crapper, completely dysfunctional.

This cause me to understand that my physical life is part of a cycle of periods of better wellness and worse wellness. At it’s worst, I will find myself hospitalized for periods of time to battle whatever the current presentation is of the disorder. At it is best, I life a daily life that is unperturbed by the disorder and only I would know I had it, if I didn’t write about it on line.

Despite being disabled, I am a reverend with a small congregation and community that I strive to serve. For me, this is my calling and how I reach beyond the confinement of illness to make the tokens I have every day count toward a greater good. I am also a writer. I have always been a writer of some form, from back in college as a journalist to know as a published author of non fiction blogs and books around spirituality and family, spirituality and disability, spirituality and trauma, and spirituality and leadership.  Of courses, my first role I play is mother to my almost an adult son and owner of Alice, the Service Dog.

I started writing and talking about A Token Life years ago when my health took its first severe downward turn. That turn changed everything. I lost my first book contract. I lost the ability to hold a full time job. I lost the ability to drive whenever I wanted to. I had to get Alice just to have some semblance of a life. I had to apply for disability to find a way for my family to financially make it through the loss of my income. Mostly, I went from being a balls to the walls kind of woman. I used to coordinate weekend spiritual retreats for hundreds of people. I used to be in a constant state of motion that produced a high level of successful work. Then I was suddenly not.

I was not capable of ever hosting a large spiritual retreat again. I was not capable of sitting up to finish edits on the book I had sold. I was not able to stand without passing out. I was not able to cough without passing out. I was not able to laugh without passing out. I was not able to regulate my body temperature. Suddenly the Southern Summers were times where I hid in air conditioned places instead of being out camping and hiking. I went from having boundless energy to having constant, debilitating fatigue.

I was lost.

Sitting in the bowling ally on my son, Sam’s, birthday,  I watched Tony, my husband, count out the exact same number of tokens to each of the boys attending Sam’s party. I watched them fist those tokens and run en mass to the in house arcade.  It then occurred to me.

I got up and life – the physical limits of neurocardiogenic syncope and dysautonomia – gave me less tokens to live my life physically than my husband or son got – two healthy people. When I entered the daily arcade of life, I was not able to play the arcade games the way I used to. I was only able to play a limited number of games and so I was very choosy about what games I chose to play. I was living A Token Life.

Since then, the language of tokens has been common in my house hold. Recently, some of my newer friends have started to use token language when talking to me, which has really warmed my heart.

Instead of getting tired, because I am always tired, I would run out of tokens before I was able to make dinner or grocery shop  or other daily activities. I began to wake up and mentally ask myself how many tokens I had and compare that with what I wanted to do today.

Of time, I picked up lots of little tips and tricks that I use to help keep my having more good days than bad. I then started meeting other Token Lifers – people whose physical life, like mine, afforded them less tokens than they used to get and less tokens than most others get.  That is how this blog came into being.

I hope by writing about my own struggles and the things I use to overcome them, I can inspire others to develop their own Token Life. A life of great abundance and meaning developed as an act of defiance against a physical life of limitation.

 

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Surrender – Knowing When and How

Surrender – Knowing When and How

I get up every day a little tired. I get up every day a little light headed. I get up every day to a “normal” that most people would not be able to adjust to. As I adjusted, as I learned how to save and shuffle my tokens around to have the productive type of life I wanted, I came to the place of acceptance of my new “normal.”

Then the cycle of my disorder kicks in and I come to a period where even that maladjusted “normal” is not available to me. I get up fatigued, not just tired. I get up dizzy, not just a little light headed. I get up overwhelmed before I even get dressed.

#TokenLifers invariably face those days. The MS flares or the fibromyalgia flares or you are battling cancer and catch a cold. Suddenly the “normal” you accepted is out of your reach.

Oddly, I find I struggle with this most after a sudden downward turn in my health. I have had one recently. I can remember a day less than two weeks ago that is notable for all the things I don’t remember about that day. I knew that day was coming and had already taken preemptive measures, but #TokenLifers know that sometimes those days are going to come no matter what. For me, it is like my body suddenly fritz out. Nothing seems to work right. I can’t drive because I am passing out left, right and center. I can’t write because my brain doesn’t seem to want to put coherent thoughts together. I can’t do much of anything. I know I spoke on the phone with people that day and I really have no recollection of what was spoken about or why I would call someone in my condition.

Then things start to get better. The next day comes and the symptoms are not as severe. I am not shaking like I was. I am not thinking in some bizarre disjointed way. I am back on line, so to speak, and the reboot and recover to that dysfunctional “normal” begins. It is almost like my mind and body, who argue a lot, suddenly are locked in a battle of wills. My mind won’t rest quietly to allow the body to recover and pushes my body to recover. My body rallies as if a last minute burst of energy will make-up for the lost ground.

Then a day like today finally comes. I get up and I tell my body, “You win. I give. I will stop pushing.”

I give up the joy of water aerobics because it will do more harm than good.

I stop posting my daily posts for a few days or even a week or more because it does more harm than good.

I allow myself to fall asleep on the couch.

I allow myself to sit still and just be exhausted.

I let go of hating that I am in that place. 

I surrender.

What I have found in this surrender, is that my body seems to finally rest well. My body and mind find a harmony and compatibility that was previously missing and spurs me back toward better days instead of worse.  It is almost like all my dysfunctional systems let out a long, loud, large sigh and I can almost feel my body re-calibrating and rebooting to better instead of worse – away from struggle to balanced existence.

It is so hard to do this. There is so much I want to do, read, write. There are so many people I want to minister to. There are so many place I want to go. There is so much I want to do. Did I mention all the things I want to do?

Truth is that when I am at the best health I can have, this tension between what I am actually capable of and what I can push myself to do helps breed a success that I would not have had. However, when the bottom falls out, this tension only adds to my frustration, anger, irritation, worry, and anger.

I get angry because I took two days to do “mostly”nothing which was really a bunch of little somethings instead of taking two days to do “nothing but sleep.” When I am at the best health I can have, one day of mostly nothing is enough to keep having good days. So why isn’t two days of mostly nothing restoring me?

However, after experiencing a heavy dose of really bad health, it takes more than two days of “mostly nothing.” I need a few days of mostly sleep instead. The tension between capable and pushing, though, becomes a habit that is usually successful. Letting that go is  hard because of the fear.

What if I take a few days to do nothing but mostly sleep, and don’t return better? What if that break causes me to have months of really bad days versus a few bumpy ones? What if giving in somehow leads to giving up and it sets the best health day I can have down to being one where I can barely function? What if my readers stop reading? What am I going to miss when I am not on line? What momentum will my career loss when I take this break? What will my friends think – that I abandoned them? What about my parishioners? How badly will my family unit feel let down by my sudden decision to just stop and rest for three or four days in a row?

I imagine that most #TokenLifers live in this fear. We live lives that hard won. Every load of laundry folded is an accomplishment. Every dinner we cook is a banquet. Every time we can actually exercise we have overcome odds that suggested we would not be able to do these things. The prospect of giving any of that up is scary – so so scary.

Today, I surrendered. I turned off the TV. I let go of all the expectations I had laid upon myself while I was still trying to get out of bed this morning. I did only what was NECESSARY and then I slept. Tomorrow, I am thinking will be another day to do the same. To skip working out, to skip doing anything that isn’t absolutely necessary, and nap on the couch instead. I am not a healthy woman. And if what is left of my life after I spend a three or four days sleeping isn’t the same as it is right now? Well, then I guess those were just things, opportunities, people, family members who aren’t working toward empowering me and my #TokenLife. Which means I was wasting tokens on those opportunities, things and people, any way.

Do you need to take three or four or five or seven or fourteen days and surrender? Do you need to rest, really, really, rest? If so, what fears and angers are keeping you from doing that? What can you do to address those? How can you find a way to spend a little time surrendering now so that you can gain more better days than bad?

I surrender all.

I surrender all,

All to thee my precious Savior

I surrender all. 

Christian Hymn
Lyrics: Judsan W. Van de Venter
Music: Winfield Scott Weeden

Where are you at?

So today I am about half way back to my normal. I am trying new dosages of medications and trying some different general approaches. I have worked this morning at my office (read “Starbuck’s”) and am about to go home and have lunch and run my boy around town a bit before my church has a meeting tonight.

Remember recovery after a crash is a slow process. Give yourself space for that process. There is nothing wrong with that.

Keep On – Surviving a Down Turn

Keep On – Surviving a Down Turn

Last week, I crashed very hard. I spent three days straight doing little to nothing while I waited on some test results and a doctors appointment to address what was found. This has lead me to think about how this down turn is different from past down turns.

  1. You Know When It Is Coming: People with chronic fatigue or illness know when bad times are coming. They monitor their body in a more intimate way than others. I knew this was coming about six weeks ago. I could tell that everyday I had fewer and fewer tokens to use and I found myself crashing hard at night, going to bed earlier and earlier. What I have learned is to take action when I see a downward trend in my fatigue levels and not wait.
  2. Take Action: This goes to a core issue that I think all Token Lifers must deal with: having a medical TEAM on YOUR side. For me, I have a solid relationship with my primary care physician. (There is another whole blog around selecting your physicians and having a primary care physician.). Most Token Lifers will have different doctors of different specialties. What Token Lifers need is a doctor who coordinates their care. Someone who gets ALL test results from all physicians and then cross references those when you visit. Someone who can in turns stream line your care and send you to specialists with very specefic instructions about why you are seeing them.  Further this primary care physician should know what their role is with you. An internist is an excellent choice for this coordinating care physician (mine is an internist). I went to this doctor and told her that I needed a coordinating care physician. I told her that I knew my body and I needed someone who would listen and respond accordingly. After years of working with my CCP (Coordinating Care Physician), when I show up and say, “I am fatigued, something isn’t right,” she listens to me and we always formulate a plan. This involves doing blood work and checking levels that have caused issues in the past. That is what I did several weeks ago.
  3. Scale Back: While I waited on these results, I scaled back my activities. On another blog, I was posting a daily blog and I stopped. I was pressuring myself to do other daily activities that are important but not necessary. I let go of lots of things and only allowed myself an hour at most a day to work. In my Token Life I know what is my base activity for a week is. These are things I have to do no matter what in a week. I let go of everything else. For me this is my water aerobics twice a week, my little part time job that takes eight hours a week, and any doctor appointments. I continued to go to water aerobics but scaled back how hard I worked out. I will get out of the water if I think I am using too many tokens on the activity. Last week I was able to do my little part time job and then hit rock bottom.
  4. Stop. When you hit rock bottom the sooner you accept your place and spend time resting and recovering the sooner you will be back on your feet. I have daily accountability partners (John and Disa) that I answer to. I posted in my family’s private Facebook group giving everyone a heads up. I try to set very, very small goals for myself and if I don’t complete them that is okay. Nothing is as important as recovering from hitting rock bottom.
  5. Ask for Help. This time, I had my son drive me some places so I wasn’t using tokens in that way. I told my son and husband that they would be cooking and doing the normal chores because I would not be. I basically let everyone I know, I was in a temporary, semi permanent timeout.
  6. Try Different Things. When my test results came back, I DECIDED – not the doctor – I DECIDED – what needed to change in my care that would help get me back in the game. After I read the results and consulted past results, I decided what I needed to do that would be different. I went to my CCP and told her what changes I wanted to make and together we settled on a new plan of action.
  7. Give It Time. Since the changes started to be made about four days ago, I am seeing a daily incremental increase in energy levels and tokens. I am seeing a change in my attitude and how I feel. I have a new plan of treatment I will be working for the next few weeks. And I would be foolish to start right back at the same level of activity. I will do a little more very day and I will continue to focus on healing and resting. I will give these changes time to take affect and I will see what happens in time.

What this episode has exposed for me is how many different types of support I have put in place in my life to better utilize the tokens I have and gain back tokens I have lost to my disorder. I hope to explore these slowly over time with you and help you better create a life that is more than the sum total of tokens your illness has given you.