World,

I haven’t forgotten about you. Life has picked up and summer has put sunshine back in my soul. I’ll update soon.

Me

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Welcome Back, Perspective

Let’s just say a couple weeks ago, I fell into some old habits…hard. They weren’t kidding when they said, yes, you will make mistakes, but it’s about recognizing when you need to slow down again, refocus on priorities, and move forward along this new path.

Things I’ve had to remind myself lately:

  • Even the least suspecting of friends may have your back more than you think. Give them a chance.
  • When I wear myself out, I get physically sick. Violently sick. As frustrated as it can be to be so much more limited than I ever used to be, I’m grateful at my ever-increasing ability to recognize where that line and to make the conscious choice to not cross it.
  • My friends are suffering too. Some I’m watching the beginnings of the kinds of suffering as I have been. It will become ever important for me to be compassionate to them, to help them in ways I know I needed it, but to also allow them to ask for help and not push it on them.
  • My stomach has been progressively getting pickier. This has enabled me to decide to start a completely clean diet (starting in July) with a possible exception of ginger ale, which I need for the ginger and carbonation to sooth my belly. For this, I am grateful.
  • Putting so much emphasis on a guy made me lose track of what I’m trying to accomplish. When I am focusing on my needs, I remember that I have reserved energy and special meal plans. I remember that I’m trying to get out of debt so I can go back to school for my Masters in Nutritional Epidemiology with RD and my massage therapy license, thus moving toward opening a wellness center. I remember that I wanted to take dance lessons because of the joy it brings me, and forcing myself into an environment that dampers that joy is damaging. I don’t need people in my life who are setting me back from truly living the life I need and deserve. The right guy will understand that.
  • While most of my life has felt like a defense mechanism, I need to continue learning that allowing fear to dictate my perceptions of what I think others think about me will only set me back. I also need to continue my practice with mindfulness, not just in bad times but also in good. That’s how to make it a habit. Focus on what I can control in this moment, today.
  • My family is simply fantastic. I have a dad who gets it (he has MG) and a mom who really just wants to connect and try to be there for me. A turd-face brother who is not afraid to call me turd-face back while putting me in a loving headlock. A brother and sister-in-law, both with the right amount of common sense and quirkiness to have spawned some absolutely hilarious and lovable offspring. A brother who, somehow, turned out to be the one who keeps me grounded, reminding me of exactly what I need to hear in a moment of need. A dear, dear sister, who, even miles apart, brings a smile to my heart. And, one gnarly grandma who opted for late-night froyo and pizza with her granddaughter (this same one let me talk her into getting her first tattoo this past Christmas). These are the people I don’t have to try around. Spend more time with them.
  • I’ve come a lot farther in the last few months than I’m willing to give myself credit for. Though, for some reason, I feel like people should recognize it like I’d gone from black to blond. It’s more internal, like my ability to even recognize stressors, think through situations, and literally slow down. It’s ok if I’m the only one who knows the changes.

I’ve been reading the Huffington Post’s Blog “The Moment I Knew”. It’s a series on the moments people knew they needed to de-stress. While sometimes the comments people leave the authors can be harsh, I try to remember that I myself was not long ago in a position where I might’ve said to suck it up because I did it or even now acknowledge that I create some of my own stress. But, not everyone learns how to deal with stress in healthy ways, and sometimes that’s not their fault. My friends kept telling me to slow down, but I literally didn’t know how. My body had become so efficient at doing it the wrong way, none of the ways I tried to change it came close to working. It took me hitting several metaphorical brick walls to put myself in the cocoon for change.

I’m thinking of submitting an entry.

Trying to Learn

I’m writing this more to get it off my chest, but if anyone reading has any thoughts they’d like to share, they are welcome. 

One of the biggest things I struggle with having chronic illness is the idea that no one, aside from others who have it, really know what I’m going through. Sure, everyone has there problems, and I’m not discrediting that. For me, it was always one thing right after the next, feeling like I finally learned about and could manage the illness/problem and within a month or two, BAM! Here’s a whole new set of symptoms and unknowns. It’s so frustrating because I was constantly on edge about what do next vs at least knowing why I was sick.

After getting my diagnosis of gastroparesis and choosing to not take Reglan, I had to know if there was a reason I kept getting sick all the time. Why, when I’d go to the doctor, I apparently had a weakened immune system, but things would check out fine? What was the missing factor? Before making a trip to the Mayo Clinic, I consulted with my PCP to see if we were overlooking something (seeing as I am a frequent flyer there). He suggested I see a PT who specializes in visceral myofascial release and craniosacral therapy. I had just read about Jonathan Tripodi’s technique on body memory recall and remember thinking, wow, that sounds a lot like me. After my first visit with my PT, he in fact deemed that my nervous system’s natural motility had essentially stopped. This was a result of my body becoming so efficient at improperly storing any and all stressors into my body that it just held things even, even when I wasn’t conscious of it. My body was habitually storing stress, and for anyone who knows me, habits aren’t things I handle well. 

So, under the guidance of my PT and a PsyD, I began a journey of healing (one I’m FAR from finishing) by which I had to re-experience all the things in my life that have ever really stressed me out – and the memories came a’flooding. Until you have experienced that overwhelming, knock you to the corner of your couch and cry hysterically for hours because the pain is too much, just be there for anyone going through it. These last few months have been some of the hardest of my life. I have been working on identity issues, coping with familial, social, and work stressors that go back to my childhood, on top of trying to manage the amount of stress activating my gastroparesis, and learning more effective ways to wade through all of it.

And, the whole thing can be very isolating. You want your friends to be there, and often, they want to be there for you, but neither of you know how. You have to learn who you trust with what. And, then there’s that line of not wanting to be a burden on them or feeling like they can handle it. When you have so many bad days, it’s hard to not turn people off because you are simply trying to express your feelings and those feelings just aren’t the most uppity. So, do you put on a guise of happiness and hold those emotions or do you feel them?

I, thankfully, for awhile, was able to walk the line fairly ok, though I definitely cry more now. My biggest struggles are with accepting myself and loving myself, something I think too many of us are afraid to admit. I struggle with allowing others to accept and love me and recognizing when they do. I struggle with saying no, no to doing too much, no to peer pressure at times, no to the lifestyle that got me here that I’m working so hard to break. And, when I stumble, I feel guilty and angry. I judge others for judging me. It’s not pretty, but it’s something I’m trying to overcome. It’s crazy when you go from uber successful, very well-liked, with crazy ambition to being smacked into a stop sign, disoriented, and still trying to identify with yourself with these new glasses, just how long it must take for things to focus again.

One thing I’ve been doing to pursue things that actually make me happy is to take dance lessons. I’ve been doing this now for a couple months and am joyful at the the act of doing it but critical of myself for feeling like I should be farther along or be able to go more often, etc. Last Friday, I went to a “practice party” with several of the people I’ve been dancing with, including a friend of mine who I like. He’s been taking lessons with the owner of the studio and she’d recently had an “aha” moment in life about needing to slow down so she wouldn’t become ill. We got to talking about how a fast life can get to you and that I’m learning from experience. We agreed to chat more at a later time. After the party, she, my friend, and another invited several of us to his lakehouse for a night cruise. Everything was great, and I may have had too much to drink. 

On the way home, my stomach started convulsing, the gastroparesis kind, which looking back, doesn’t surprise me. I’m supposed to take it easy and am still trying to find the line between too much and not feeling like I can’t do anything. I think the boat trip crossed that line. And, the alcohol only exacerbated it. So, here I am, suddenly violently ill and an emotional wreck thanks to the alcohol (I can usually contain my emotions when sick in public). I turned down their multiple attempts to call 911. At one point, the girl starts yelling at me to suck it up and that crying isn’t going to get me anywhere. Here enters anger. It’s like she flipped that switch of “You don’t fucking know!” I know I snapped back and asked my friend to take me home, where I ended up throwing up horrifically. 

You can imagine how bad I felt the next day, both physically and emotionally. I called my friend to take me to my car, but it was just so awkward. I apologized and thanked him and expressed my concern that I must’ve pissed off the other two. He just said that they were trying to help. I knew that I would want to apologize and thank them for trying in person next time I saw them. 

Well, the tricky thing about getting sick that night is that I’ve been sick since that night. It’s like having a bad hangover for days plus your illness being a tyrant and your emotions out of check. I have a vice (thank you, Virgo Moon) of being over-analytical of my emotions. So, at this point, my friend is giving me the cold shoulder. I apologized through FB to all of them and the girl proceeded to block me. This is the girl who owns the studio I take lessons at. My friend is supposed to be my date to a wedding in my hometown next week, and I am afraid he won’t ever talk to me again. I’m analyzing every move, and I feel like I’ve lost all control over that portion of my life. Even when I think of being present and mindful of my thoughts, it’s like I’ve ben set back months of treatments, and am reliving a nightmare I struggled with in high school. 

These are the things I’m trying to learn from.

You Must Accept Some Things Must End to Build Something New

This subject really hit me today. I’ve been in the process of reconstructing my life and lifestyle for 8 months with different therapies after chronic illness really kicked in.  When people used to tell me to slow down, I heard them. I just had no idea how. Now, I do. And, it’s one of the hardest things to do. Say no. Should be easy enough. But, your body is a powerful structure. It is highly trained to do things without you even thinking. And, your brain? Also prone to habit. When you put the two together, that’s a whole lot of force working against you. It takes consciousness, determination, and prioritizing the new things in life to help you break through.

For example, I hate feeling sick. Duh. I hate even more knowing when it was my own decisions that made me sick. I’ve determined that when I drink, I make poor choices, poor choices about my food intake, my energy levels, just poor choices. When you have gastroparesis, making some of these poor choices can really kick you. Because once you make the stomach cranky, all of you is cranky. The last three weekends, though, I have gotten drunk and then chosen to eat without thinking about what I was eating or allowed the alcohol to get the best of me by flaring my emotions in times of nauseous convulsions. In these moments, I am upset and unable to clearly communicate what’s wrong and why, even to those who think they understand. Really, they don’t. And, I’m upset because I’ve brought it on myself. I had even made the choice to start allowing myself only one drink when I go out to help prevent this, but I’m still not good at moderation. I’m an all or nothing girl working toward the middle ground. And, today, I think I’m going to have to choose the nothing road to begin letting go of the guilt of when it’s my fault.