I’m sure it’s not much of a surprise to anyone that I find myself in the grips of full on FOMO quite regularly. I’m in a constant state of evaluation where my inner monologue sounds a lot like this:
…If you don’t go, you will regret it…You really need to get out and see actual people. Just do it…You can do it! You aren’t that bad yet. You should try. If you don’t even try, you’re a quitter. You let the disease win! The disease can’t win…Don’t stop doing things you love…if you do that, it’s all down hill from there…You’re becoming a shut in. Get the hell out of the house! CALL SOMEONE. MAKE A PLAN. Take a shower…just go. If you don’t, it all goes downhill. Everything. You can’t just STOP. You have to GO…
And on and on, pretty much on repeat.
It got bad yesterday mainly because I got out of my pajamas at 1PM, hung out in my living room for a few hours (in my weekend uniform of yoga pants and black thermal shirt which is pretty much pajamas anyway) then around 5:30PM I decided to watch some stuff on my DVR, so it made the most sense to just put my jammies back on (so I did).
My mom called and I told her what my day consisted of and she said, “Sounds just like your father’s day.” Which was the single worst thing anyone could have said to me. I spent the rest of the night beating myself up for letting myself become a shut-in who only wears pajamas. It got ugly later that night lying in bed. Tears were involved. (PS. No, my mother didn’t intend to make me cry. She was making a joke at my dad’s expense, not mine.)
I was determined to leave the house today. So I set an alarm. I set an alarm for 11AM (I’m realistic, I have to give myself that) and I was out of the house by 1PM. Granted, I was in my weekend uniform again so it really barely counts as getting dressed, but I left the actual house which felt like a win. I had a few errands. Talked to some actual living humans. I did some Small Business Saturday shopping. I got the big idea to head to the shoe store I love in the city called Little’s (it’s a big store, but totally qualifies as a small business in my book). Little’s has a great selection of unusual brands. I often find comfy and practical yet not-orthopedic-looking shoes there. I wanted to walk a bit. I need to prove to myself I could.
I see people walking around everywhere. It looks so simple. They look effortless. They talk on their phones and push strollers, they jog and run in place at traffic lights. They walk carrying large purses and toting briefcases. They look happy.
I parked in the lot about a block away. I knew my legs were feeling bad to start with. When I have a bad leg day, one way that presents itself is that my legs feel stiff and heavy, as if they’re made of stone. It makes walking tough. I often trip over my own feet because they’re kind of dragging along because they feel so heavy. I talked myself through it. “Just keep going. Walk slow. Nobody cares if you’re walking funny, it only matters to you. Just go slow.” And I did just that.
People don’t like slow walkers on the sidewalk. I nearly got buzzed by a biker riding on the sidewalk probably because I was sort of taking a not-very-straight path down the street. Sometimes a bad leg day looks a lot like being drunk. Not one, but two, very busy women nearly mowed me down because I was clearly not walking fast enough for them (I knew this based on the very loud and heavy sighs I could hear as they blew past me). But the inner voice said, “Who cares? You will never see either of those very important women again and it doesn’t matter.”
I got two pair of stylish yet sensible shoes and began my short journey back to the car. I took a quick detour to Starbucks because I wanted coffee and because I thought the quick rest would help a bit and justify the tiny little bit of extra distance it took to get there. I got my coffee and began my stumble-walk back to my handicapped parking space.
I sat in the car and felt defeated (even as I stared down at the bag of cool shoes I just scored). I just don’t want to be this person! I just want to be normal. I want to be able to walk super short distances without having to talk myself through it the entire time. I don’t want to be a goddamn marathon runner! I just want to be able to walk from the parking lot to the store. From the parking garage to the office. From point A to point B. I’m not asking for miles (or even meters). I can’t imagine how I would ever go on another vacation where I had to walk around to sight see. I really want to sight see again. There’s a lot of the world I haven’t seen.
My brother had tickets to a concert tonight that I really wanted to go to. He asked me along and I had a brief moment where I told myself I could rally and it would be super fun. Shortly thereafter, I knew had to be honest. I knew I would crap out probably before the opening act even got done. I knew I wouldn’t be able to stand for longer than ten minutes (this was a concert at a venue where you stand). I knew that I could probably limit my walking but I knew I wouldn’t have fun because I’d be listening to the inner monologue the whole time as it wondered when my legs would actually just give out. Then what? I texted my brother and told him that I really wanted to go – but I knew I wouldn’t be very much fun. He should take someone else.
I’m missing another event that’s happening this week (I had to RSVP and I got pretty sad when I clicked “Will not attend”) but I knew it was another one of those things. I would want to shower. I’d want to look nice. I’d want to socialize and mingle and drink champagne. These are all normal, fairly easy things to do. But not for me. At least not lately. The simple truth is that the act of showering in and of itself wipes me out to such a degree that going out after doing it is simply not realistic.
I have other voices in my head, too. They’re from the perky MS bloggers. They’re out there…They’re every freaking where. They are fonts of positivity! I am definitely not one of them. They write about MS and talk about how rich and full their lives are. They use the infamous “I have MS – but MS doesn’t have me!” line that makes me want to stick an ice pick into my own temple. They write about their cool shoes and their happy lives with their happy little families and their husbands who pick up the slack on the chores and provide a handy arm to hold on to when their legs get tired. I hate them. I hate how much I hate them.
Then there are well-intended acquaintances. These are the ones who tell me about their friend-cousin-uncle-mother’s-fifth-cousin-once-removed-frat brother-neighbor-lady who also has MS. They are bikers-tri-athletes-aerobics instructors-yogis-competitive mall walkers-world travelers-speed walking-personal trainers! They are in better shape than my well-intended acquaintances (they tell me with a little self-conscious laugh). You’d never know that they have a disease. Don’t give up! You can do this, Beth.
And I walk away feeling even worse because a) I can do none of those things and b) now I’m failing at having MS too. Great.
Maybe tomorrow I will have a better leg day. Maybe some day I’ll be able to do normal things again like a normal girl. But what if I can’t? I can’t bear a life of feeling badly because I have to lay low and I have to be slow. I have to think long and hard about what I choose to do and how I choose to do it. Sometimes? It’s too much. It’s just easier and less stressful to just stay home. Just like my dad. And when I do that? Sometimes I will cry myself to sleep because I’m just not sure how to be OK with doing that so often these days. It’s fun when you choose to do it! It’s something else when you don’t.
I get so overwhelmed sometimes just trying to figure this out. One good day is followed by three bad ones and there’s literally no way to know what each day holds. I tell myself to have zero expectations. I tell myself not to be afraid. I tell myself that it doesn’t matter that I’m not graceful, that I walk funny and that I’m super slow. I tell myself that I’m still me – even if I don’t leave the house that much and even if nobody actually sees me.
Sometimes, I think that’s what this blog is about. It’s about my need to be seen. It’s about a fear that if I’m not out there, not doing, not seeing and not experiencing things…maybe I cease to exist. What then?
I know. Stop thinking like that. Stop imagining forever. Focus on today. This time though? I’m going to focus on tomorrow. Maybe tomorrow will be a better leg day.
Or maybe it won’t and I can just drive around and look at clouds and sing? Or something.