One of the things I have discovered throughout my life, and especially living with a chronic illness, is that life isn’t fair and it usually comes with a myriad of unexpected circumstances. Most of which require me to do one of two things: adjust and grow or complain and stay stuck.
I’m am once again finding myself in a new place in this journey with ME/CFS. It is a very odd place to be and yet I have this amazing peace that I can do it one more time. The adjustments that are coming my way are profoud and the resulting adjustments will not be easy, but, I feel like I have prepared as best I can; I have learned and grown; I have adapted and become flexible; and I have finally surrendered to the beast that lies within me.
As I look out my window, I see a new view, one that changes with the seasons and with planned city events. It is this new view that often serves as a reminder to me that no matter what comes my way, the new changes offer me the ability to grab hold of new experiences, a new perspective, new empathy and compassion, and ultimately that these obstacles will challenge me and reveal who it is that I am when no one is looking. It will reflect back to me whether or not I have truly learned the lessons I have learned thus far about living with a chronic illness for almost half of my life.
To that end, I have come to realize that I am not in a crash but that I have relapsed. To be honest, I have not been at 20-40% since I first got sick almost twenty years ago. In addition, with this relapse I am having to learn to deal with changes that I have never encountered before.
A major red flag for me these past decades has always been when I get sore throats, swollen lymph nodes or a raspy voice. However, I have never had problems with my voice consistently. In addition, once out of the crash, I have always been able to talk without any vocal changes.
This past month, however, has been witness to repeated problems with my voice, raspiness, and swollen and painful lymph nodes, while all of these symptoms have resulted from my testing my new boundaries – gently.
Today I am back in bed with swollen and painful lymph nodes and my sexy, raspy voice. Amazingly, all it took was for me to go down to the second floor (by elevator) and check my mail and then go outside to the end of the building and grab a sandwich and a drink. That was it. This is in additional to the issue I am haivng with my eyes.
I am finding that I have to be quieter in my soul, spirit and mind and that I need to be very guarded with my energy levels. I do not want to push and end up in a deeper relapse.
I’m also trying to think about what I can do within the new boundaries I am now finding myself in, instead of what I will have to be letting go of. Perhaps life isn’t so much about what I can keep, but about whether or not I am willing to let go and make room for something else, something better.
When I look over these past two decades, I don’t see a lot loss even though there has been an enormous amount of loss. What I see, is all that I have gained.
A perfect example is of a time past where I was superbly fit. If I saw anyone who was over-weight, I assumed they were so because of bad eating habits, not exercising or just being slothful. I think back to that time now and my heart grieves. How could I be so arrogant and assuming?
Today, I look at someone who is over-weight and my heart breaks because I understand the challenges that come with a body that doesn’t work in a society that is hell-bent on being 18 years old for eternity.
Thus, all these ruminations have led me to start thinking about what I want the next decade of my life to be. The first decade of learning to live with ME/CFS was full of frustration, denial, anger, tears, questions, looking for answers – all they while praying and begging God to get well. The second decade was all about trying to come to terms with this illness and find some sort of normalcy within the every changing boundaries it imposed on my life.
But it is this third decade that is now upon me that I want to enter and change. Although I have no doubt I will have days where I want to give up, scream at the top of my lungs, push back, take control, cry or whatever, I have discovered that while perhaps necesssary, they really don’t provide much benefit to anyone other then me. More times than not, they actually make me sicker.
I think I have spent the past two decades doing the tango with this beast that unexpectedly showed up on my doorstep and chose to never leave and create much havoc in my life. We have been in a fitful battle of wits to see which one of us will win, both of us determined to not back down.
That’s when I saw it. I have been exerting my precious energy – body, mind and soul – into fighting a battle against this beast, every moment of every day, never realizing that in doing so, I was letting the beast win, more often than not.
While there may be many that see my surrender as giving up, I see it as acceptance to that which I can not change. I also see that by ending my battle with the beast, I can corral my energies and cognitive abilities into the very things that I was put on this earth to accomplish.
In essence, this beast has been a distraction. One that has literally tried to suck the essence of me out of … me.
I am not ME/CFS. ME/CFS resides – without my permission I might add – within me. But it is not who I am, nor, it is who I choose to become.
In addition, while this beast may have a strong grip on my body, is does not control my mind and my spirit. It does not have the power to take away my life’s purpose unless I give it that power.
Therefore, decade three will be one of learning to stay surrendered. It will be one of tunnel vision on what I feel called to do (write) and achieving it. It will also be one filled with long periods of quiet, rest, and contemplation, interspered with creativity, writing and reaching out to others.
I guess you could say that in decade three, it’s time to change the dance. Thus, I will no longer do the tango with the beast within me, but instead will now move on to the Waltz.