I suppose there are worse things in the world than to hear you don’t have a disease. Typically, when a person gets the news that their body isn’t betraying them it is a happy occasion. For me, it’s a mixed bag.
After weeks of intensively journaling my every waking move from food to medications to supplements to sleep habits to social calendars, I was positive I was walking out of that clinic with a Chronic Fatigue Syndrome diagnosis. I think my doctor was sure she was going to be giving me one as well. But after going over all of my notes and the discussing my wide range of symptoms we came to the conclusion that I do not have Chronic Fatigue Syndrome (now known as Systemic Exertion Intolerance Disease) but a medical condition that mimics the disease, sometimes to a T; Systemic Deconditioning.
I know what you’re thinking; Deconditioning is just a fancy way to say I am a lazy blob who needs to get off the couch.
Oh you weren’t?
Well I was.
My primary is great, and she made it clear that she wasn’t calling me lazy and she explained the way my pain and all it’s baggage could have led to this situation and I believed her.
Until I got into my car.
That’s when my brain starting telling me all about the reasons that I did this to myself. All the sitting around, all the resting and saving up my spoons. All the times I thought about exercising but didn’t. All the times I tried to work up to a schedule and got slammed with a fatigue episode so intense I could barely breathe and I should have just kept pushing.
Then I got home and enrolled into the University of Google and began to really understand what Deconditioning is, how it comes about and what it means for my body. It’s so much more than just being “out of shape.” It is literally every system in your body losing stamina, losing it’s ability to keep up with what once was.
The more I read the more I found connections with all of my symptoms; memory issues, forgetting my words, muscle twitching and the inability to stay focused on tasks at times. And the fatigue episodes! Oh man the fatigue episodes triggered every single time I got going on a good workout regimen. It was like being hit by a bus!
My muscles would twitch constantly all over my body, and I would shake from feeling so, so weak. I would slur my words as if I was drunk and would be unable to remember what I just said and I was SO exhausted. Not just worn out from a busy day, but so exhausted it was too much work to breathe, to chew my food, to fall asleep!
Seriously. I was too exhausted to fall asleep.
What I thought was a flare up of CFS was actually my body systemically freaking out because I had pushed it too hard, too fast, too much. It’s not just about the muscles or the cardiovascular stamina; it’s my cortisol levels and my metabolism and the way my brain works. It’s everything.
I am grateful to understand that this is not a condition I have to live with for the rest of my life, and that there is hope that I will get back to a place where I can be more active. But I have to say, I feel –very strongly- that I did this to myself. Or at the very least, that this is a bi product of every other issue I am dealing with that simply cannot be cured. Which sucks.
How did I not see this happening? If I am honest with myself I did. In fact, I have more than once mourned the loss of my “pre-pain” self. The 25 pounds lighter version of me who could dance for 4 hours a night and then go out hiking the next day. I go through cycles of accepting myself how I am, and hating every inch of this new me who seems to be so sluggish she needs a nap after a simple weight lifting session. This is simply another confirmation of exactly how much my life, my body, has deteriorated in the last 5 years.
So what now?
Well….after spending the rest of the day yesterday in a constant state of weeping, complete with a good 20 minutes of balling my eyes out I am pulling on my big girl pants and getting to the part where I take action. I am a Superhero after all no?
The best way to reverse deconditioning is Graduated Exercise Therapy (GET). It’s basically a workout plan, but in baby steps. And I do mean baby steps. Which will be the hardest part about this for me. My favorite part of a workout is the sweaty, exhausted elated feeling you get when it’s over and that is exactly what I have to avoid. According to my GET I shouldn’t even feel like I did anything when my workout is complete. No sweat. No wiggly arms or legs. No elevated heart rate. Nothing.
We are talking like 10 minute walks around the pond or in a heated pool, 2 pounds weights in a chair, meditation level yoga workouts here.
(insert spitting noise here)
Eventually, I get to tack on a minute or two to each session, but it’s slow. Like 3 months slow, to get to the point where anything exciting starts to happen and it feels condescending if that makes any sense. I feel like a baby. Like a whiner. Insufficient.
I feel insufficient and it is breaking my heart. And I’m lonely. Because no one else I know understands this in the slightest. There isn’t anyone else I know who can look at me and say “I know exactly what you are feeling right now, and I have felt it too.” Just like every surgery, every recovery, every single day I wake up and have pain this is something I have to do alone.
Am I going to do it? Hell yes.
I’m just really tired of doing it alone. Which is where this blog comes in so handy for me. My hope is that if I am accountable to you guys to keep updating on my progress, I will be more inclined to stick to it. If I know I have to come on here weekly and update my GET and share my experiences, and you guys cheer me on, it will take the sting out.
Oh! I just got an idea! If anyone wants to do this together, or trade stories or tips and tricks I would love that. You can comment on the posts, or send me an email at TheseNext6Months@gmail.com. Or you can find me on any of my social media pages (listed on the Home tab) and send me a private message.
The rest of this week I will be developing my GET plan (and getting over this stupid cold) and next week I aim to get started. So alright then……here goes……everything?