My so-called perfectly curated Internet life

I’ve always been somewhat of a loner. Sometimes when I say that in front of people, they are aghast. Not you, Bethie! You’re not a loner.

But it’s totally true. I am a closet loner. Somehow I’ve developed into  person who can be two things all at one time. I am both the supreme social butterfly and the extreme introvert who would almost always prefer to be at home, in my cozy lounge wear cuddled up with many kitties on my favorite couch. But since my life started going wonky a few years ago, even before my actual diagnosis of multiple sclerosis, I’ve become even more of a homebody. This is a result of realities both mental and physical.

On the physical side, there’s always some details to consider, eventualities to plan for. I try really hard to live in the now and not project into the very scary future of what this disease could mean for me but I often fail. Since my diagnosis, it seems like I’ve gotten worse physically speaking. That means that often the physical nature of my limitations directly affect my desire to get out.

My fatigue hit all-time highs to the point where it was often difficult to get out of bed to even get myself to work, let alone muster the energy to go somewhere for fun. My body felt like it didn’t want to move most of the time. The Provigil helps, for sure, but there are still those days when my legs feel so heavy that basic movement is a huge effort. My sleep requirements have always been high. I mean, I flat out love my bed and that has nothing to do with MS. But the sleep my body needs now is exactly that – it’s a need. A requirement necessary for basic functioning. I used to stay up really late reading because I didn’t want to put my book down, but doing that now means I lose an entire day to sleep. I need at least ten hours. That’s just a fact.

The wonky nature of my legs is another physical fact that often determines what I do and don’t do. I think about situations in terms of the physical toll I may experience and whether or not I feel I can withstand that toll on that particular day. The specifics of this evaluation look something like this:

  • How far will I have to walk from my car to my location?
  • Will there be a place for me to sit when my legs get tired?
  • Will it be hot where I plan to go…will I get overheated by the walk or by the environment where I will be? Will I be able to cool off easily, avoid the sun, stay out of the heat?
  • How close will I be to a bathroom? Will it take a walk to get there?

Then the inevitable question, will I be able to make an escape when I simply crap out? Because I will crap out. It’s just a matter of when. So because of all of that, and my inner introvert often winning out, I stay home a lot more now than I used to.

I love being home! I really do. But this often leads me to spending more than my share of time on social media.

It’s just always there ready to give you something to look at, read or react to when there’s not much else going on. It’s so always there that I’ve become somewhat addicted to it. It makes me feel connected to the world outside without requiring me to develop the usual check list of preparations. It’s easy to dip in and dip out again. I do it almost constantly. I check Facebook while watching TV, talking on the phone, going to the bathroom, lying in  bed. I check social media before going to bed at night and first thing when I wake up in the morning. It’s gotten completely out of hand. I call it the social media loop…check Facebook…Check Instagram…Check email…Check Facebook again…and so on and so on.

It was getting so bad that I considered giving it up entirely. Cheryl, my therapist, thinks that is far too drastic. She thinks giving up social media would make me feel completely isolated and she’s probably right. I appreciate and value the connections I’ve made online. I have friends, real friends that I’ve spent time with in the real world, who I met on social media.

On really bad days, the support I get from the many who’ve been there for me when I let it all out on Facebook can be the thing that propels me out of my funk and into a more productive way of thinking.  But lately? It’s taking up too much of my brain space. Social media has become a crutch for me. Almost an obsession. I gaze at the lives of my many “friends” and their social goings on and travels and activities and I feel sad. I feel like my life is too small. Too internal. Too quiet.

I look at your pictures of your fun nights out and your OOTD and YOLO posts and I feel myself and my life has somehow become less than enough. I used to get such a charge from seeing and being seen. Now it just feels like a lot of work. But when I see you do it? I feel like I’ve given up or lost the parts of my life that used to give me joy.

But the truth is? I’ve always loved being at home. I’ve always loved the rain. I’ve never been outdoorsy. I used to jokingly refer to myself as “indoorsy” when people asked me to describe myself. I have always loved to read and watch good TV. I love to write in my journal and spend hours doing absolutely nothing. This has always made me feel content. Now that it feels like it’s required, as a result of my physical limitations, I somehow think I’m supposed to be an outdoorsy, world traveler who goes to black tie social events each night and occasionally goes clubbing to mix things up.

It’s literally insane. I would hate doing all of those things. But there you have it.

I love being in touch with people. I love the ease of social media for keeping in touch with people from all parts of my life. I feel like I have connections to people I would otherwise have no easy way to connect with. People who are important to me. Friends from my childhood. Friends from high school and college. Family I don’t get to see that often. I’ve even made new connections with people who I might never have otherwise met. These are all really good things!

But I’ve had to give myself a good, stern talking to.

Social media isn’t real. It’s the finely curated best (and sometimes worst) parts of people’s lives that come together to create a picture of something even better, and more interesting than it usually is. It’s the best of 62 selfies to find the perfect one to post (I’m totally guilty of this). It’s the perfect sunny day that looks impossibly ideal. It’s the carousing with friends that makes your life look like a sitcom or cool HBO comedy drama. It’s the once in a lifetime sunset on the Italian Riviera that looks like a picture in a picture book. It’s a series of perfect moments – or even imperfect moments that also help to round out your interesting internet persona. And that’s why I love it! And also why I hate it.

I’m rationing my social media these days. Trying to keep my head on straight. That’s hard for me under the best of circumstances but these days, when my head has become an even darker, scarier potentially dangerous place to be – these days it’s even more important. I don’t have room for beating myself up over not being fabulous enough. I don’t have the strength to try and keep up. I want to sometimes! I really, really want to. But I just can’t.

Accepting that feels like quite a step for a finely curated gal like myself.





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