I had a bit of an epiphany last week while sitting in Cheryl’s office.

For those who might be new, Cheryl, aka My Precious, is my shrink. After almost 20 years of therapy Cheryl is also my friend and we share a diagnosis (MS, duh) which makes our random coupling oh-so-many years ago even more strangely wonderful. Last Tuesday I got all crazy and ambitious and dragged myself to downtown Pittsburgh and walked the 567 steps to actually sit in Cheryl’s office.

Since my confinement (that’s what I’m calling it now…it makes me giggle…OK sorry I’m back). Ahem. Since my confinement, Cheryl and I have been doing our sessions by telephone and I have to tell you, it’s a struggle for both of us. Neither of us can focus to save our lives. I’m probably reading the latest urgent email in my inbox as I’m talking about my life that’s falling apart and she’s probably doing any number of things unrelated to my therapy session which could include eating (peanuts, a salted apple, hunks of cheese) or drinking (bad coffee and/or water) or going to the bathroom (we’re very close). We both miss entire sides of our conversation when having therapy by phone. I dragged myself to the Gateway Towers to visit her in person because I really needed to focus.

I’ve had a spell of stressful situations some related to my MS, some not-so-much, and I was reaching a point of critical mass. Potential physical and mental breakdowns were on the very near horizon. I needed to figure out a way to release the pressure valve on my daily life or bad things were gonna happen, possibly worse things than the bad things that have already been happening on a day-to-day basis since completing Lemtrada Round 1 in early November.

I won’t make you sit through our entire dialogue before I tell you my revelation. I mean, it would be funny if I did do that because Cheryl is hilarious, but you might be getting sick of being my plus-one in my weekly therapy sessions so I’m trying to be sensitive to your needs.

Someone, not Einstein, once said that the definition of insanity was doing the same thing over and over again but expecting different results. I realized I’d been doing exactly that. Again. Of course, like most of my epiphanies, I’ve had this one before too. I’m nothing if not consistent. But back to my most recent epiphany, because I think it’s important even if it’s repetitive.

For the last three freaking years (it’s been that long since my diagnosis) I keep comparing my life, my abilities, my experiences etc., against the standard of my life pre-MS. I keep holding myself to the rather ridiculous standards I’d created for myself over the last 20-plus years that I’ve lived alone, independent and busy growing my very best life. I could do most anything. I was at the top of my game when I was diagnosed at 48 years old. I was living MY dream. When considering the daily random bodily betrayals that were happening, I would tell myself, “I should be able to do this! I should be fine.”

But I wasn’t fine. I wasn’t even a little bit fine.

Then another thing dawned on me that is probably very obvious to anyone who actually knows me. The comparison between who I was then and who I am now and what I should and shouldn’t be able to do is utter crap because the thing is, this weird symptom shit started well before my diagnosis on December 1, 2015 when I was 48 years old. I am acting like my body should be able to do all the things I used to be able to handle with one arm tied behind my back, standing on one foot, but the thing is, I hadn’t been OK for kind of a long time before that fateful day when I was given my answer. I hadn’t been OK for a good long while, actually.

The problem with writing so much stuff down every day is that you simply cannot bullshit yourself. I can go into my journal and actually read for myself what my life was really like before diagnosis. Things were happening. Bad things. My symptoms started about three years before my 48th birthday. I brushed them off but I was in good company. I had quite a few medical professionals of various specialties who were quite happy to let me think I was imagining things, so I rolled with that. I was still as good as I used to be! I should be fine!

Flash forward to the aftermath of this long, strange trip that I call recovery from Round 1 of Lemtrada. I’m beating myself over the head with all of the things I should want, should be able to do, should be doing better by now. So many shoulds.

I should sleep more (or less). I should eat better (or differently). I should be able to walk more than 800 steps a day without feeling like I’m going to collapse. I should want to wear cute clothes and daily creative makeup application and have a thriving social life. I should be able to get myself to the office daily. I should want to go places and do things and be around people. I should slap on a happy face and get out there with my rollator in my cute outfit and show everyone how MS doesn’t have me! I should be able to manage my life, my work, my symptoms and my mental health like I ALWAYS have.

Except for I have not been that person in a very long time. I started staying home more around the age of 45. MS didn’t do that to me. Maturity, experience and comfort in my own skin did that to me. I stopped feeling like I had to be trying so hard ALL of the time. So, I just didn’t do it. I stopped trying to be the coolest 40-plus-year-old advertising executive that all the kids wanted to be. I just didn’t have it in me anymore. I started focusing on other things like family, quality time with my favorite people (i.e. Me and a few select friends) and basically living in the peaceful knowledge that I had already been there and done that, got the t-shirt, wore the t-shirt out and no longer wanted to do anything with that shirt other than maybe toss it on the floor for my kitties to roll around on. I felt content, some of the time, in my new peaceful, happy life. It wasn’t a perfect life, by any means, but it was mine and it was pretty damn awesome.

Now post-MS, post-Lemtrada me all of the sudden thinks I should be into the idea of going back to my old top-speed, makeup-wearing, expensive-fashion buying socializing ways! I find myself wanting to be on the way up in my job again (mostly forgetting how hard it was to be that young woman working her life away, always battling with whoever was in my way trying to hold me back). I tell myself I should be able to do things. I should want to do things. I should be doing everything differently so I can get back to feeling like ME. But that was the old me. Not the new me I started to become, and kind of liked, pre-MS bullshit starting.

All of this comparing, in general, has to stop for me. I tell myself “I should… (fill in the latest inane thing I’ve decided is important)” about a thousand times a day.

I told Cheryl, “I’ve decide to stop shoulding all over the place. I’ve shoulded myself to death. I’m exhausted from all the things I should be doing. I should be leaving the house more. I should be walking more than 800 steps a day. I should care more about my looks, my fashion choices – the face I put out there in the world. I shouldn’t sleep so much. Read so much. Be so much in my own head. I should try harder at pretty much everything, according to me. But what would happen if I just gave up shoulding all together? What would happen if I stopped shoulding all over myself every minute of every day?”

Cheryl did the thing I love most when I’m in her presence. She smiled a little smile and wrote something in pencil on the yellow legal pad that sits on her knee the entire time I’m in her office. I’ve looked at those pencil scribbles on the yellow page before and I’m not sure they’re even actual words, not in any language I can discern. I think she saves them, too! But when she smiles her little smile and scribbles on her yellow legal pad of nonsense, I know I’ve done good. I know she’s thrilled that I finally see what she could see for a very long time. I’ve had an a-ha moment that might put me in the running for Client of the Year 2019 and it’s not even officially spring yet! By-the-by, that’s probably not a real thing, Client of the Year, but I’ve taken great pride in winning said award consecutive years from 2015 through present. And yes, I do realize that she probably says that to all of her long-time clients. I don’t even care. I’m still proud.

But the bigger news is that I’ve actually stopped shoulding all over myself since I left her office that fateful day almost a full week ago. I’ve just stopped.

When my silly brain starts to tell me what I should and shouldn’t be doing more or less of, I cut my spotted brain right off at the pass. I should do exactly what I want to do to make myself feel better. If I’m stiff, I will stretch. Not because I should but because it makes me feel better. If I’m tired, I will rest because that’s what my body needs in that moment. If I’m too weak and off balance to feel safe in the Outside World, I will stay inside where I am fortunate enough to be both warm and (relatively) safe. I will wear my comfy clothes. I will look at the cold, slippery sidewalks from INSIDE my house because that’s where I want to be. For now! It could all change tomorrow. Or next week…or in a few months. And if it does (or doesn’t) I need to try and be OK with it, one way or the other.

There is no should. There is just what is and isn’t.

My body will tell me what it can and can’t handle. If it’s leaning more on the can’t side lately, I have to remember to be nice to it and not beat it up with so many evil shoulds. If 15 minutes on my Cubii mini-elliptical makes me feel like I can’t move my legs afterwards, it’s OK to do ten minutes. It’s also OK to do 5 minutes or none at all on a very bad day. It’s just the way it is.

One of the amazing things about making it to the ripe old age of 52 is the inherent lack of fucks there are to give any more. By shoulding my life away, I’m walking away from the pure beauty of being a (relatively) independent woman of a certain age. Should is a thing of the past. Should is what I did when I was young and didn’t know any better. I do know better now. That box of fucks is going right back under the bed, where it belongs. I hope I can leave it there for good.

The random picture above is to prove my recent accomplishment of leaving the shoulds behind. That’s me up there in a car selfie on the left. I went out to lunch in a public place, in my comfy clothes without make up but with my family, because a miracle occurred and it stopped being so frigging cold on a day that my legs were semi-operational. The other picture is the view of the sunny day outside of my front door today. On any other warm, sunny day I might have felt like I should go out and push my crappy legs around on the sidewalk. But these legs weren’t fully operational today. I was stumbling all over the place this morning. Badly. Outside was probably not in the cards but looking at outside from my open front door is perhaps the next best thing.

I had a good, should-free day. Here’s hoping they continue.