How to Ride the Waves

“You don’t have to let that one thing be the thing that defines you” -Will Traynor”

There’s some preparation the doctors gave me for these symptoms: Pain, hives, flushing, loss of hearing, increased WBC, seizures, and blacking out. There’s the possibility of knowing at any given time, any physical ailment could be directly related to my mast cells. What no one ever prepared me for was how my body wasn’t just going to change physically, but how it would so drastically change emotionally too.

Most days, I’m constantly fighting an upward battle to stabilize or reduce symptoms in any way possible. As described in earlier posts, my energy is typically consumed in this, whether it’s planning what activities are the priority, when I can take my medicine, what to eat, or how many hours I can be out of the house without going into a full flare, there’s little room left for the emotional energy needed in “life.” I have come to find this to be the most difficult part of my diagnosis so far.

I feel myself changing day by day, getting further away from the bubbly, vivacious, independent person that I had worked so hard to become. It feels as if I’m watching myself morph into this new person that I’m constantly resisting.

Always thinking.. “I want my old life back.”

After a diagnosis occurs, it’s like the universe expects things to be better. They think..You have an answer, so now you must have a solution. Thing is, there isn’t a solution. One day something may work and I’ll “make it” without a massive episode, the next day, I’ll do the same thing and I’ll be sick for hours. There is no control, prediction, or making sense of it all.

So, I begin to ask myself, “How can I stop from pushing against the current and instead, decide to just ride the nonsensical waves?”

It’s a cycle that I haven’t been able to step out of. The energy it takes to decide to go out, to spend time with people, to be present with them, it takes a great toll on someone with an illness. This in no way implies that it is work or something that I don’t have any interest in doing. The reality is that as a therapist, this is a top job requirement. I spend the majority of my days being there and holding everyone’s pain.

When it comes to life after work, I am left holding my own. Because of that, it takes a tremendous amount of energy at times to be present, to be fully there, engaged in a conversation with the people I care and love (even those that I don’t!). I have to be able to tell myself to not think about the severity of my stomach pain, to not think about how it feels like my esophagus is being crushed by a freight train, to not panic about how my brain is utterly shaking (yes, I’ve found this to be a real thing). Now give those symptoms to anyone else, and most likely they’d be in bed calling the doctor or going to the ER.

For me, it’s not an option. I want to live. I want to live a life full of these activities and gatherings that everyone else participates in. On some of my worse days, people will ask, “Are you sure you want to go? Are you sure you’re okay?” No, I’m never sure. No, I probably would rather stay home and feel safe knowing I had some control over the environment or that I knew the exact time it would take to get to the hospital. If I answered that way every time I was asked, I would never be able to function with the quality of life that I feel I deserve.

Yet for me, most days, it’s very hard to push those things to the side and be present in the ways I hope. I then get to the event, am surrounded by the people who typically bring me up when I’m struggling, yet cannot engage in any way that feels satisfactory compared to how I was pre-diagnosis. I’ve used all my energy, focused all of my thoughts towards making and preparing for the event that when I get there, it’s gone.

I’ll spend the whole time trying to muster it back, telling myself to “cheer up” as if it’s a choice. MCAS will quickly remind me that enough is enough. It will let me know that I’m lucky to just be able to stand for an extended period of time, that I’m lucky to not have to use the bathroom X amount of times in an hour, or that I’m lucky I’m not losing feeling in my legs or my arms.

It won’t care that I’m not satisfied in simply just existing.

It goes against everything that I stand for. Passion. Zeal. Presence. Enthusiasm.

Existence makes me feel disinterested. Cold. Aloof. Rude.

I know that underneath the folding of my arms, the disconnected gaze, the lack of constant smile, there’s still passion. There’s still zeal. There’s still presence. There’s still enthusiasm. It’s just that the physical pain keeps finding a way to sneak in there and cover all of those traits up.

Sometimes when the me before diagnosis starts to feel so far from reach, I begin to worry that others aren’t able to remember that person. It feels as if they will lose sight of all of those positive traits that caused them to be pulled towards me in the first place. Luckily, I am still having moments when I’m laughing so hard that I snort. Moments when others tell me I’m as enthusiastic as a cheerleader. Moments when others have no idea the pain I deal with, yet love me anyway. It’s in those moments that I so importantly remind myself that this MCAS will keep on trying and trying, but it does not have to be the one thing that defines me.

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