FOMO vs. Acceptance: The Grudge Match

Bitmoji Beth knows the struggle is real
Bitmoji Beth knows the struggle is real

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.

 

 

 

My special little snowflake

I had kind of an epiphany since my last infusion. Something clicked in my brain around the time I heard the second medical professional say to me, “That’s just your MS.” My first reaction to that phrase was anger (you might remember…I wrote about it just a few days ago).

Just my MS? JUST? Seriously? You can say that to me and keep a straight face? It’s not “just” anything, it’s my goddamn life.

But then, as usually happens, I had a few days to ruminate; a few days to let the golden juice of infusion flow through my bloodstream and listen to my thoughts and notice myself thinking a little differently. Those few days of feeling just a little tiny bit better made room for some other thoughts to creep in, thoughts that weren’t related to my general state of panic and bald-faced fear.

These new thoughts sound something like this, floating around in my spotty brain while I lie in bed at night…

I’ve been waiting to feel better this whole time. I keep thinking, “I’m going to go into remission and this thing is just going to be something that occasionally ‘flares up’ and when that happens I’ll deal with that and then I’ll go back into remission and I’ll be fine.”

Here’s the lightning bolt…I’ve been in remission this whole time. This isn’t a relapse. This is JUST my MS. My multiple sclerosis, precious little snowflake disease that it is, presents itself for me as crippling fatigue, weakness in my legs and general limitations around my ability to walk. There are a lot of other ways MS can present, but this is my MS. Right now, anyway.

My MS creates mobility challenges, challenges keeping up with regular day-to-day life from a physical standpoint, and the accompanying mental challenges when I realize that somehow I have to live with this disease alone. No. Let me check myself here…I know I don’t have to live with this disease alone. I am surrounded by people; people who love me and want to help me. But I live alone. And I love living alone. So, my particular challenges eventually lead me back to that basic fear: What if I can’t live alone?

The nature of our health care system doesn’t lend itself to these sorts of multi-systemic diseases. Nobody ever really explained this to me or prepared me for what would or even could happen. I’ve seen my neurologist twice since my diagnosis, both times for 20 minutes. He tells me the bare minimum and leaves it to me to figure out the rest. I guess when your disease is a snowflake, this is the most expeditious route for care to take. He can’t really prepare me for what’s going to happen because there are so many, many things to prepare for. I’m guessing he probably just didn’t want to leave me thinking of this disease as the end of my life – so nobody really tells you much of anything. The most specific thing he said to me so far was, “We’ll be optimistic and say you probably won’t even need a cane until you’re much, much older.” Well. Ok. I guess?

It wasn’t until the light bulb went off after this past infusion day, that it finally hit me. I am in remission. This is my remission. I’ve never perceived myself as getting any worse, because I was in treatment and the treatment was helping me to mask my MS but it was always there. The disease modifying treatment that I am on is clearly helping keep my MS in check (most days). When I skipped a treatment, that’s when things fell to shit. That’s when I could barely walk across the street, let alone walk 100 freaking meters. That’s when the wheels started coming off. That isn’t a relapse. That’s just my MS.

A relapse is defined as any new symptom that lasts for more than 24 hours. Relapses are major. They lay you out. Sometimes they blind you. Sometimes they lead to hospital visits. Usually they lead to more IV steroids. That is a relapse. What I have? That’s just my MS.

I don’t say this in a hopeless way. I feel like it’s important to point out that this is a decidedly “Bethy Bright” post. Sounds crazy, I know but bear with me.

I’ve been waiting to be better since the day I was diagnosed and someone mentioned the word “remission” to me. I never realized that this IS better. This is the best it’s gonna get. I mean, short of some miracle new treatment or some unforeseen cure, this is how it’s gonna be. Just knowing that, understanding that reality, allows me to stop waiting to feel better. I can’t wait to feel better because that’s just not going to happen. I can treat symptoms. I can take medication that helps (on some days) with my symptoms. My Provigil, for example, typically helps me get through a regular day. But my reality is now much clearer.

This is it!

Why does this feel like a breakthrough? I thought about this a lot today. I chatted with Cheryl (my therapist) about it, too. As I tried to explain it to her in her slightly too-warm office, it crystallized for me.

It feels like I can stop waiting to feel better and just allow myself the room I need to deal with the worst days. On those days, life requires adjustments. Sometimes major adjustments. Sometimes I might have to say to a client, “Oops…I have to sit down because I’m currently seeing two of you.” Sometimes I won’t be able to get out of the car and walk when I want to and I will just have to drive home and call it a day instead of sitting in a public place crying into my beef stew because my legs don’t work. Sometimes I won’t be able to leave the house at all.

That has to be OK because that is quite simply my new reality. I do have MS and MS does have me, people. That’s just reality and ignoring that reality makes it all so much harder on so many, many levels.

Then there are the days that aren’t so bad. Some days are borderline ok. Today, for instance, was a pretty decent day. I’ve made adjustments as a result of my experience of this disease and I am beginning to understand that this is a requirement, not something that is optional or temporary. My wardrobe. My shower schedule. My daily routine. Nothing is the same as it was, but things could really be a lot worse. (Things might get a lot worse! But for now they haven’t so I’m not going to worry about that yet.)

Not waiting for remission means I can deal with my MS. Or at least start to. I’m not delusional. I can’t go around telling new clients, just yet, that I have a degenerative disease. But I can stop acting like I’m ever going to be able to pretend that this isn’t a fundamental reality of my life. This is my MS. And my MS is part of my life that I can’t ignore.

I was going to go into my rant here about how our broken health care system should really work harder to not make this journey quite so mysterious and painful for the newly diagnosed. I mean, I have a fucking disease. I shouldn’t have to figure it out myself, piecing together random tidbits from web sites and blog posts, when I’m paying highly educated, respected professionals for the benefit of their care and skill. But that just feels like a futile exercise and I think I might be finished with futile exercises for a little while.

For now, I’m going to focus on continuing to work on accepting my MS and not wasting my precious energy that I get from a pill that costs me $10/day waiting for it to go away.

It ain’t going away. And neither am I. Not today anyway.

When you’re not quite bright, but not quite dark

I find myself in shades of grey more often than not, these days.

When I decided to call my blog bethybrightanddark.com a few friends told me it sounded more like a blog about bipolar disorder or mental health. While I don’t have bipolar disorder, you very well could say this actually is a blog about mental health. MY mental health. But it also meant more to me than just that. The name of this blog was inspired by how this disease makes me feel like there’s two of me. One that is regular fun, happy me. And one that is old, crippled, useless me.

It wasn’t the first time I’d felt these two me’s take up residence in my life.

I read a novel a very long time ago called “Lisa Bright and Dark,” by John Neufeld. The book was written in 1969 and is a young adult novel about a high school girl who is slowly losing her mind and nobody believes her (not her teachers, counselors or her parents). Nobody believed her but her friends, who decide to help her by performing their own version of crude high-school-girl group therapy that they create based on gut instincts and some scanning of encyclopedias and psychology books.

It’s a short book. Simply written – but when I read it in my early teens it pretty much hit me directly in the gut. I never thought I was losing my mind, per se, but I related to the idea of having two personas battling things out inside one fairly normal looking, relatively socially acceptable body where other folks would probably never guess it was happening at all.

I was in high school when I read “Lisa Bright and Dark” but I read it over and over again throughout the years even as I grew older. The picture above is of my copy – both covers have broken free and the pages are beginning to turn brown. I just read it again this past week. I may need to spring for a new copy.

I never knew it at the time, but much, much later in life I learned that some of this phenomena could probably be attributed to the clinical depression that I was diagnosed with in my twenties. But back then, I didn’t know anything about depression. Nobody I knew suffered from depression. That wasn’t a word we used in our very normal, regular family. I just knew that I felt like there were two of me. The bright girl who was bubbly, social, extroverted, outgoing and loved being at the center of it all, no matter what “it all” was.

And the dark girl.

She was nothing like the other one. She liked rainy, gray days. She preferred to be alone. A lot. She’d go days at a time wishing she didn’t have to leave the house or see any actual other people. She spent a lot of time chastising herself for not being more normal. She hated herself for being a fraud. She ripped herself apart from top to bottom on a fairly regular basis. She was never pretty enough, thin enough, smart enough, stylish enough or happy enough. She knew that she really wasn’t the Bethybright that everyone seemed to love.

Back then, I thought that when people found out what I really was inside, nobody would love me. Nobody would want to be around me. I would wind up old and alone and lonely – and I made myself believe that this outcome would be devastating. I always felt like both bright and dark lived inside of me, but they were in a battle. The bright, socially acceptable me would do practically anything to make sure the real me, the dark one, never got out. At least not in public.

A combination of therapy and medication, writing and time (a whole lot of time) helped me finally get to the point where I finally felt both of us could live in here at the same time and not hate ourselves. We felt OK.

We got through some majorly crappy life stuff, that is for sure. But we were OK. I kept on thinking of myself as Bethy Bright and Dark because I never wanted to forget that it is who I really am. I am both one and the other, all at the same time, and that was just the way it is. I was finally happy. It was finally OK.

Then I got MS.

I was thrust down the rabbit hole, once again, of trying to hide what I was, who I was, what was happening to me. I was freaked the hell out. What if not being graceful, even moderately athletic or even always basically “able,” wasn’t OK? What if I couldn’t do things? Even everyday things, like taking a shower, required major effort and planning. I knew I couldn’t wear my beloved cool high heels anymore, my fashion choices became severely limited as a result, and I found myself sometimes not even wearing makeup. I am a girl who loves makeup, people. I love it a lot.

What if I was not myself anymore once this disease got a hold of me and began ruining basic stuff like walking, talking, thinking, seeing, hell, even sleeping? I sometimes feel like there’s not one shred of my life that this disease hasn’t changed. I often don’t even recognize myself. Bethy Dark has been winning a lot lately. You may have noticed. The lack of makeup is a dead give away.

I go around and around on this every day, these days. I still don’t really know what this disease means. I know intellectually that I have a damaged central nervous system and that interferes with my ability to do things. But I kept hearing of this thing called “remission” and I have been waiting for the remission to happen to me. I just always feel shitty so I assumed I was always in a relapse. Finally last week, it hit me.

I was in the infusion room telling Nurse A about the various symptoms I’d been struggling with. I told her how I felt like I was tanking fast. I had days where walking even across the street was challenging. I had days where I couldn’t even rake leaves or carry groceries. I had days where I was seeing double and having extreme trouble concentrating.

I thought this stuff would stop happening once my drug kicked in. I thought that was what remission meant – no longer having symptoms. That’s why I thought Tysabri wasn’t working for me and why I convinced The Great Scott to consider every-other-month for my treatment (until the new and safer wonder drug is FDA approved in December). I just assumed it wasn’t working because I constantly had new symptoms. That had to mean I was in constant state of relapse.

Nurse A let me ramble a bit, my fellow infusees looking on, until I finally finished my rant and took a breath. And she said, “I don’t know how to tell you this. I don’t want to upset you or make you angry. But all of what you’re describing? That’s just what it’s like having MS. It never goes away.”

She explained to me that a relapse means you are experiencing new disease activity and things are getting much, much worse often times involving hospitalization or immobility or very severe reactions like blindness. Relapse usually requires IV steroids to stop the progress then back you go into “remission” where you get back to your new normal. You go back to a your new normal life where you randomly wake up with new and different MS-related weirdness – like my inability to walk or my random double vision. It only counts as a relapse if these symptoms last longer than 24 hours.

Otherwise, “That’s just your MS.”

Those words came back to me again today in an email from my neurologist’s office responding to my questions about recent labs. I wondered if there was anything in the labs that explained my recent issues – like the vision problems for example. And Carol, the office nurse, used those exact words. “Your labs are relatively stable. That’s just your MS. Nothing to worry about.”

Nothing to worry about, indeed.

The truth is, since infusion I do feel better. I walked pretty well today. I stood on one foot for 10 whole seconds! Each foot! (Seriously guys, my standards are not very high.) I didn’t sleep all day today. I don’t hurt all over – just normal places where every almost-50-something person might hurt. I am planning on finding a way to attend my company holiday party in December in Atlanta because I should go and because I really, really want to go! I’m not even lying. I want to go. Today? I feel like maybe I can. Last week, I was convinced it was impossible.

But tomorrow might be different. And the day after that too. The truth is, all of this is “just my MS.” THIS IS THE WAY MY LIFE IS NOW. I think for the first time since my diagnosis almost a year ago I am finally starting to accept that this is just my life. It’s my new normal. Maybe it’s time I stopped fighting it so hard. Maybe it’s time I just figure out how not to let it ruin me (not all of me, anyway).

I could be entirely full of shit and this Bethy Bright-ish thinking pattern might be completely different tomorrow. But that’s what this blog is really for: To remind me that it’s not every day that is darker than dark. Some are just gray. And I’ve always liked the gray days the best.

Maybe just gray is OK.

(Post Script: Technically, I guess I really did wind up old and alone…but I’m nowhere near lonely and this life, however challenging right now, is full-to-over-flowing with so much love. I wish I could tell the 16 year old me.)

I suppose there will be days like this

There will be good days, perfectly productive, pleasant days on the surface but for the minor fact that when you go to walk somewhere in public (not far) your legs don’t appear to be operating as legs anymore.

You might get overwhelmed with the feeling that walking across the street to get in your car (that is parked in the handicapped spot, mind you) must be way more than 100 meters away because your un-legs are struggling to carry you there. And you are a 4.5 goddammit!

On these days you might have vivid images in your mind of, you, rolling around on 6th Avenue hoping a stranger helps you back to your feet before a bus runs you over (it won’t happen by some miracle of the universe).

You might have a day when you call your friend to meet you in the food court because it’s 12:45PM and you need to eat something but you’re afraid you won’t make it to BOTH the food court AND back to your office AND back to the parking garage on your new un-legs.

Then you might sit and eat your stupid beef stew while also crying, in a very public place, about your un-reliable un-legs while said friend valiantly watches, says soothing things and tries to make you stop panicking.

On days like this, you might franken-walk back to your office, with your friend at your side for support, because you really want to see the friends visiting from out of town that you almost never get to see, while all the time wondering how your un-legs will carry you back to the parking garage (again, parked in the handicap spot for least possible distance) without turning into solid blocks of lead (they feel like lead already).

You might stumble down the walkway to the elevator in your therapist’s office building, and pathetically thank the smiling elevator operator for helping you get up one stinking floor.

Then you might hold on to the wall as you lurch toward the room where the magic happens, because crawling in public is generally frowned upon. And then you sit in that room and cry for one solid hour. While your beloved therapist says over and over again:

You will not always feel like this. You WILL get better. Tomorrow is infusion day. It will help you. You WILL NOT ALWAYS FEEL LIKE THIS.

You will let her say it, because she has MS too and she really does get how empty those words sound. She knows those words sound pretty and hopeful when they hit your ears but feel like ugly lies deep in your heart.

I suppose there will be days like this.

But, really, exactly how far is 100 meters?

The Great Scott (TGS for short, aka my neurologist) likes to ask me about my timed walks. He says taking timed walks is a diagnostic tool for him to help decide how I’m really doing beyond the general crappy feeling I have day-to-day. I’m supposed to take a walk. Preferably outside or in a “normal” situation (i.e. not on a tread mill or on some other device where you can hold on). Preferably several times a week.

I cannot lie. As much as I completely understand why this would be a very handy diagnostic tool, my time or energy for taking these timed walks is really not something to crow about. I’m lucky I make it from my parking garage to my office carrying my laptop on most days. Other days I can push it a little further, some days I might take a longer walk to lunch than others but generally speaking I don’t walk for fun. Walking sucks. Walking is hard for me. Walking is usually a precursor to falling down, and I have to tell you, I haven’t had a black eye in a good long time and I’m kind of hoping to keep it that way.

It always occurs to me, when I’m considering this whole idea of taking a “timed walk,” just what am I supposed to do when I crap out? If this diagnostic tool is meant to measure how far I can go until I tire or feel like I might lose control, how do I make it back to where I started? You might find me sitting on the corner of Brilliant and First Avenue some night just because I thought I could go a little farther but my body thought differently. This is not an appealing prospect to me.

The expanded disability status scale (or EDSS to us MS-ers) is a tool doctors use to determine how bad off you really are – that is my own definition, not the approved medically crafted definition. The more technical definition can be found here: https://www.mstrust.org.uk/a-z/expanded-disability-status-scale-edss

Once you get above 4.5, the sole determination of your EDSS is walking. Some folks don’t like that, but that’s just the way the disability gods made it work so suck it up. I have literally no idea what TGS has muttered into his dictaphone-thingy about my current EDSS score, but based on the descriptions in the link above, I’m going to guess I am at about a 4 or 4.5. The challenge is, I do force myself to work a full day (whether or not that happens in my office or in my living room is not relevant to me). I do move around without aid – I do laundry, I do minor minor chores like changing my bed, grocery shopping – things like that. I do walk through airports sometimes and I generally make it. I’m just not entirely sure if I’m really at a 4 or 4.5 because that’s all I try to do or if I’m really at a 5 or 6 and should be considering some help.

The EDSS of 5.5 puts your disability at the level where “disability is severe enough to preclude full daily activities. Able to walk without aid or rest for 100m.” I’m beginning to fear that I’m probably a 5.5 in denial. So much so that I actually googled “how far is 100 meters?” today and once I realized how far it actually is, I realized that if I walked that far I would almost certainly need a rest at the other end. No doubt about it. It’s probably a little like my walk to my massage that one Saturday. I did it. But I needed to lay down on that table and rest for 90 minutes before I even thought about walking back home.

(If you, too, find yourself wondering how far 100 meters really is, I found this handy video quite useful https://www.youtube.com/watch?v=ew74X5z3Rgo In fact, I also found it kind of oddly entertaining.)

I feel like I’m grasping at straws. Anything to help me put some parameters around what is happening to me. I’d be a liar if I said I wasn’t really afraid that I’m getting worse. I feel things getting harder every day. Things I did just last year (like raking those damn leaves) are not possible for me barely a year later. I wonder if the difference is that now I KNOW what’s going on and therefore I am more sensitive to it and my negative mind tells me I can’t before I even try. But I call bullshit on that too because I went into that leaf raking full of possibility! I was optimistic and hopeful. I assumed I could do it. I didn’t assume I couldn’t. Then I couldn’t. Plain and simple.

Alas! There is no EDSS ranking for leaf raking and therefore that experience isn’t terribly reliable as a diagnostic tool. The Great Scott would frown at me (and quiet-talk at me sternly) about that one, I’m quite sure.

The other thing I can’t stop thinking about is that I skipped my last infusion. Maybe the Tysbri was really helping me but I just couldn’t tell because I didn’t know how much worse things could really get! I have an infusion coming up on Wednesday and I’m looking forward to it like a 6 year old on Christmas morning looking at a big old pile of presents. I’m looking forward to going to a room and having someone stick me with a needle, that’s how desperate I am to feel even a little bit better right now. I’m wishing on my lucky stars that I feel a bit better after the “golden juice” gets back into my bloodstream, like good old Nurse A likes to say. Maybe we pulled back prematurely? I’ll be emailing TGS about that, you can bet on it.

Honestly, I’m just not capable of not thinking about this stuff. I tell myself to stop. I tell myself not to read the articles that say the disability tends to move more quickly when MS is diagnosed later in life, but I read them anyway. I try not to fixate on exactly how far 100 meters is. How many meters is it to get to my office in the morning? Can we use THAT for the guide (because that is far easier for me to get my head around)?

It’s taken me almost four days to recoup after my last trip. Four. Days. It keeps getting longer every time. I don’t think I could walk 100 meters right now if my life depended on it or even if you told me I could personally change the results of the most recent presidential election if I did walk 101 meters. I would really, really want to! But I’m not sure I could. I might let liberal America down.

The bottom line is I needed to work from home today because I didn’t have even a small walk in me. I think that might count as “Disability severe enough to preclude full daily activities.” I don’t want to be a 5.5! I really don’t want it to happen. It feels like failure, that 5.5.

Maybe that’s why I avoid the timed walk. In addition to being afraid of being stranded somewhere and not being able to make it back to where I started from, maybe I’m afraid that I don’t have 100 meters in me and I don’t want to admit that shit just now. Each and every day of life is full of so many meters!

So. Many. Meters.

I feel compelled to note that today is the 19th anniversary of my husband’s death. Every year at this time (not just at this time, but especially at this time) I remember him for the joy and sheer silliness he brought to my life. He was kind of the epitome of the words “happy-go-lucky.” Not much brought him down.

I also remember what I wrote about him at the time. He seemed like a simple guy on the surface but he understood subtle things. He understood that I was a super independent, very self-sufficient woman who disliked asking for help. I liked to do things myself. I didn’t want to need anybody. I liked to be the one helping not the help-ee.

But he always knew that I was afraid to drive in the snow. He’d come pick me up at work when the roads were snow covered, without me having to ask, because he knew I wouldn’t ask and he liked to take care of me. “But what about my stupid car stuck in the lot? How will I get to work in the morning?” I’d ask him. And he’d smile his crooked smile and say, “I’ll take you, squid-lid. Stop bitching.”

He used to say he wished I “needed” him more than I did. Again, my life is full of more irony right now than I often care to acknowledge.

Also, I have no earthly idea why my husband’s pet name for me was “squid-lid.” No idea what-so-ever.

Chuck and Beth, 1994.
Chuck and Beth, 1994.

Sometimes it gets very real up in here

I have been telling myself to stay in the moment and not think too far ahead so constantly that it’s almost funny how much work it is, this whole staying in the moment thing. The moments are hard. One day, a mere 24 hours, is full of so many moments! Some of those moments are good. Some of them are awful. Some of them are just plain old ordinary moments.

The last few days were both awesome and horrible all at the same time. I let myself knit those many moments together into something that freaked me out a bit. I really try hard not to do it, guys. I really, really do. I don’t write about this to beg for encouragement or uplifting words – you’ve all been amazing at helping me keep on the bright side when the days look dark. It’s just that sometimes, even the words don’t help. Sometimes I get frustrated by the mere fact that I can’t muster enough optimism because I should be able to do that, goddammit, I have so much to be thankful for! But some days all I can think to myself is, “Degenerative…no cure…this will only get worse. Face it.”

An overnight work trip on election day nearly did me in this time. It was the normal stuff. A dinner date with new clients, followed by a 6 hour meeting to kick off our new relationship and get the work started. The debacle that was the presidential election kept me awake throughout the night so I guess I didn’t get my minimum of 8 solid hours. I probably got more like 4 hours of sleep when all was said and done.

I held it together. I felt in the moment. I felt like I was in my zone. I was doing what I do well and it felt good. But throughout the day I could feel myself going downhill. Every time I got up to use the rest room (kind of a walk from our meeting area), I could feel my legs not wanting to move. I did some Franken-walking through new client HQ hoping in my heart that nobody would notice. I tried to ignore it and life went on. I sat when I needed to sit. I got up and moved around when that was what my body needed. Things were going pretty well. I was happy I didn’t have to walk more than I had to but when I did, I told myself it felt worse than it looked and maybe nobody cared anyway.

Later in the day I was talking one-on-one with my new client, the senior client, about budget and legal stuff and details I needed to get in her head so we could talk about them later. As I was looking at her, I noticed that I was seeing two of her. I was seeing double. I tried to ignore it, and kept up with my spiel of things I needed to get on the table, and I believe I did that but the simple fact was that I was talking to two of her at the same time and it was hard to know where to focus. I cannot tell a lie. It shook me up.

When we left the office and headed to the airport, I was pretty much done. Fresh out of spoons. I knew I’d probably have no spoons for days after this trip, but I had to finish up some things. Regroup with the team. Talk next steps, decide on some details before we all went off to our various airline gates. I think that went ok? I mean, when I asked later, the people I was traveling with told me they had no idea I was in the shape I was in. That made me feel both better and worse at the same time! But off I went to my gate, headed to security telling myself that it might have sucked but it was almost over and I’d almost made it.

One of my best traits is that I am an excellent faker. I guess it’s kind of funny to admit here in public and all but when I don’t want to do what I have to do, when I need to show respect when I have none to give, when I have to play along even when that’s the last thing I want to do – I can usually pull that off. I think it might come with the territory of being an account guy in an advertising agency. You learn early on that you play the game or you fail.

The events of the day left me with the realization that even when I could pull it off to the degree that others were fooled into thinking nothing at all was wrong with me, my body was going to find a way to make me pay. The new normal means faking it results in pushing myself physically to the point where my eyeballs stop working properly (or my legs, or my knees or whatever it is on any given day) and my body sends me a clear message, “You will pay for this.”

I also did something I almost never do. I broke down in front of two co-workers while sitting in an airport restaurant gasping and sobbing while I panicked about what the hell was happening to me. Thank god my co-workers are so much more than your run-of-the-mill colleagues (thanks girls). It could have been a whole lot worse. But I was so far from being home and I was completely out of spoons! I was overwhelmed with thinking of all of the things I’d have to fake my way through in the coming months just to get this new account up and running; To keep things moving at work; To get our new office off the ground; To make sure my team has what they need to get the work up and moving; To keep my regular life moving in the direction that it needs to move. What even IS my regular life anymore? My spotted brain was swimming.

I pulled myself together. I made it to the gate. I sat in my seat on my American Airlines non-stop flight to Pittsburgh feeling like every muscle in my body was on fire. The four ibuprofen I took didn’t even take the edge off. I couldn’t see so well to read anything, so I just closed my eyes. I didn’t sleep – I was obsessed with wondering if I’d make it off the plane before I had to pee (again) because the damn seat belt sign was on again and we had already begun the longest ever descent. I couldn’t stop thinking to myself, “Traveling sucks when you don’t have a disease. Traveling sucks even more when you do.”

I got myself home safely even though my vision was a little wonky. I was grateful to the universe for arranging for me to come home to a house without cat pee anywhere where it wasn’t supposed to be (thank god, because I was quite literally on the edge by the time I walked in my door). I fell into bed knowing I had a 10AM conference call but I could still get some good hours in and maybe that would be enough to make me feel normal again.

It wasn’t.

There’s not enough sleep possible to make me feel normal again. I think I need to accept that there is no more normal. Until this thing falls into some kind of rhythm or pattern or routine, nothing will be normal anymore.

I was talking to a friend who also has MS and she said that she was diagnosed at 45 and had three or four really bad years before she felt like it evened out and she stopped feeling like the world was going to end every single day. That made me feel better (and worse…again) because I have to keep reminding myself that this has only been my first official year. I was diagnosed on December 1, 2015. Things started getting shitty about a year or 18 months prior to that. Maybe I’m two years in? Maybe I only have another year of two of this hell? Maybe?

Maybe I loved my life out loud once too many times (again). Maybe it was always going to get hard. Maybe hard is what life just IS. Maybe I’ll be spending a lot of time over the next few days sleeping in my happy place (shown above..the view from the best bed ever), trying to collect as many spoons as possible, so I have enough energy to face it all again. Maybe I’ll be able to fake it long enough to make it.

Maybe.

 

That one time when I tried to rake my leaves?

It didn’t seem like much to ask. I mean, I did it last year and I somehow survived. My sister asked, incredulously, “You’re gonna use your spoons for THAT?” And I brushed her off. I did it last year, I told her (and myself) and besides, I only have to rake the leaves into the street for the Township to come suck them up with that machine they have! Easy-peasy.

My beloved home has a giant tree in the front yard. That’s it up there! That is my actual tree in front of my actual house. And those are my actual leaves – both on the tree and everywhere else. To be honest, it’s part of why I fell in love with my house when I first saw it. I love that freaking tree. I also love the even bigger one in the back yard – but the front tree is the one that truly grabbed my heart right from the very first time I saw it! I knew this house should be mine. I knew I needed to live under it’s leafy protection. I’ve sat on my porch gazing up at it’s limbs in all seasons, both literally and figuratively, and felt safe and happy.

I’ve never considered cutting it down! Not even when it’s branches threatened my sewer line and resulted in semi-annual poop-water floods in my basement. I mean, when you have a plumber in waders holding a tampon by the string in your basement while he’s knee deep in poop water and he’s saying, “This here’s your problem. Can’t use these with that tree out there. Can’t do both.” You question things. Basic things. I was scarred. And I gave up tampons.

I love that damn tree.

I’ve been listening to things people tell me, again. You know the things. I hear them quite frequently. They sound like this:

“I move slowly too! We’re not getting any younger!”

“I’m always in pain. Everything hurts. I know how you feel.”

“I get really tired too. You just have to push through it. You can do it.”

“Take a rest, when you need to, but don’t stop trying!”

“If you tell yourself you can’t, then you won’t. So stop telling yourself you can’t.”

“Don’t go courting troubles you don’t yet have. Think positively. Stay in the moment!”

And in that moment around 2:30PM on a gloriously sunny Sunday afternoon, I listened to those voices and I said, “I can do this! I did it last year. This is nothing.” And happily walked to the garage to retrieve my rake. I bought it brand new last year! That’s partially how I’m so sure I raked last year. I had to buy a damn rake.

I started out OK. I made progress. By about one third of the leaves in, I started to feel the pain creep over me. It started in my shoulders and began quickly running down the back of my legs. Very soon after that, it was the “shaky legs” – when you put a foot down but you feel like rest of you could just keep going right along with it? That’s what I call the shaky legs.

Then the “franken-leg” feeling kicked in shortly after the shaky legs started. Franken-leg syndrome is when each leg hits the ground with a resounding thud and when you start bending over because you can’t really stand up straight because your knees have inexplicably stopped working like knees are supposed to work. I thudded to the steps and sat down. I took a breather. I used my rake like a cane to stop myself from going down on the way to the steps. A few minutes later, I started again.

About halfway through my knees started to feel like they couldn’t support my weight. I had gotten a bunch of leaves into the street – but there were a whole bunch more left and I hadn’t gotten to a logical stopping place yet. I hobbled to the steps again and sat down, and waited again for the feelings to subside. Then I went at it a third time. By this point in the process, my thighs went numb. I did a little bit more – but had to give up. That was gonna have to be it. I was plumb out of goddamn spoons. I had to stop or go down. And I wasn’t gonna go down. There were neighbors outside frolicking all over the damn street! I wasn’t going to put on that particular show that day.

I had to pee but I was too tired to walk to the bathroom. I sat on my porch swing thinking, “Of course now I’m gonna have to add ‘leaf raker’ to my list of people to hire to do work for me! Of course, because these people are SO EASY to find and are so READILY AVAILABLE.” I closed my eyes and continued swinging. I felt so defeated. I was defeated by some stupid leaves after a relatively nice, quasi-normal-feeling weekend. It was a glorious day so I tried to focus on how nice it was just to be outside and sitting on a porch swing watching the leaves continue to fall in the light breeze, completely unaware of their irony.

But it bummed me out. A lot. It bummed me out the most as I crawled upstairs to use the bathroom, on my hands and knees, so I wouldn’t pee my damn self. I feel compelled to note that I did not pee myself. It was close. But I made it. 

Here’s the thing: I’ve listened to those good-intentioned voices before. I’ve found out the hard way they don’t really understand. They want to. They truly try. They intend to make me feel better, not worse. They attempt to make me feel not-so-alone and not-as-hopeless. They have the very best of intentions. but unless they’re sitting with you in the infusion room, and unless they too have MS, and unless they too have MS that happens to affect their strength and legs predominantly (MS is much like a snowflake…no two experiences are the same)…they just don’t know. They can’t. It’s not their fault,but it is my own for succumbing to them yet again. I know better.

So I’m starting out a new week with a shortage of spoons. I’m popping ibuprofen like candy because even after a long night of sleep, my body can’t recover. I have a business trip tomorrow (after I vote, of course!) that will require me to be “on” for most of the next two days as well as travel by planes, automobile and wonky-legs. I don’t WANT to be a ‘what if I can’t?’ person, but despite my best efforts, I find myself haunted by those thoughts all day and all night. Even in my dreams! My dreams aren’t even safe.

What if I can’t?

Because the truth is, there’s a pretty good chance I can’t. Then I guess I can hire someone to do that? And the list of “thats” gets longer. Sometimes I think I’m eventually going to have to hire a “life live-r.”  Can I find one of those on Care.com?

 

Keeping up with the…krazy

I’m not the easiest person to figure out lately. As a result of my current “situation” I’ve become somewhat of an interpersonal nightmare. Being my friend, right now? Not so easy. I mean, it’s just hard to even try to figure out what balls-out insanity might be happening in my head on any given day.

I learned this week that I need to try harder to be more direct and clear with my communication. I need to ask and talk and deal with it when I feel hurt. I need to tell people how I feel – even as it’s changing from minute to minute, second to second. I know I can be hard to read because of that. The thing is, sometimes I’m lonely when I’m alone and I’m often tense and unhappy when I’m NOT alone. I want to be out having fun and being my old self…Until I actually make a plan to go somewhere and then immediately stress out about how much I would REALLY rather stay home.

Sound familiar? It’s exactly how I was after Chuck died. Exactly. Somewhere in my stack of handwritten wire-bound journals from those years of my life there must be those exact words scrawled on a page. Maybe more than once.

I’m mourning again.

This time, I’m mourning myself. I guess I’ve known that all of this time. I just have a hard time accepting it or imagining that it could be real. It’s real. Really real. It feels familiar, even. You’d think I’d be better at it! I should consider giving a masters class in “Effective Mourning Without Doing (much) Permanent Damage to Yourself or Others 101.”

Then today I had a decent day. Just like back then, out of the blue for no good reason at all in the middle of the semi-darkness that is my psyche, a regular old decent day happens.

I did some client calls this morning, even though it was technically a vacation day. Talking to clients, directly, always re-connects me to what I love about my job. I feel useful when I can solve problems. Come up with solutions when challenges are presented. Help make their lives easier. I did that with all three of my clients today. It was (mostly) gratifying.

After that, Brooke and I had lunch at the old Aspinwall Grille, now called The Tavern on the Wall. It was a good call. The food was good. We had a lot to catch up on. And it kept me out of the house while Sue, my long-time cleaning lady, was at my house cleaning maybe for the last time.

Yeah. Like I need another thing to deal with! I talked to Sue a few days ago about how I wanted her to take better care when cleaning for me in the future. Things have been kind of less than perfect. Spots missed. Details ignored. Her response took my totally by surprise. She basically told me she really didn’t have the time to do a really thorough cleaning each time, she’d been meaning to cut back because she’s not getting any younger, ya know, and oh by the way, cleaning up cat vomit turns her stomach.

Well then.

I’m officially in the market for a new cleaning lady. Maybe a cleaning man. I’m not sure, but whoever it is they will need to clean the shit out of this house (cat vomit and all, I mean they do live here too) and maybe even do some other heavy tasks like emptying the litter lockers every two weeks. Those bags are goddamn heavy.

I’m sure it’s going to be awesome trying to find someone new. It will likely be more expensive. And let’s be honest, I’m not the easiest person to clean for. I’m rather particular, you might say? But I have to get it done. I need to limit my investment of spoons related to basic home maintenance. Taking care of this house is too much for me. That’s just the way it is. Now. Now, that’s just the way it is.

After lunch I went to Target, driving with the top down on the car and enjoying the warmish but-not-too-warm gorgeous fall weather. The trees are really amazing this time of year! And the clouds lately? The clouds lately have been magnificent. Like a painter took his brush to the sky each day and then lit his work at twilight for the ultimate gallery exhibit.

I laid on my bed texting with my friend, BB, after I put away all of my Target purchases because he entertains me and because I needed the rest. But I made the rest enjoyable, right? I didn’t resent the rest. It was fun rest. Thanks, BB.

I’m also kind of embarrassed to admit the joy I felt when looking at the stats on my blog today. Thirty five people looked at/read my blog today. Thirty five! I’m amazed that there’s more than three! I expect my loyal supporters to check it out (Amelia the angel, my old hilarious friend David, Amy G who just gets me). They are the ones who always seem to want to read what I write and I love them all the more for it. But thirty five people read something I wrote. Maybe my standards aren’t very high, but it kind of made my day.

Later this afternoon, my old friend Susie G. called me from Atlanta to check in and we had a really nice chat. She said she thinks about me every day. She also reads my blog (she asked me if she could subscribe! How sweet is that?). Luckily, at the minute she called, I was actually in the mood to talk. It’s hit or miss these days. Again, minute-by-minute, things shift and move around in my spotty brain and it’s really a crap shoot on whether or not I will answer the phone. I’m glad I did. It made me happy.

I guess today, all in all, I had a good day. Today was a Bethybright-ish day. It was sunny out, and for once, I didn’t curse the sun.

I have to learn take them when they come.

I need to look them in the eye and say, “Thanks, fairly-decent-sunny-day. You’re not so bad. I might not have walked around the block like I always tell myself I should when the weather is pretty and I feel semi-ok (I almost never do, but one should have goals). I only accomplished one short, semi-frivolous errand. But you didn’t suck. Thanks for not sucking, day. I needed that.”

Sometimes bright-ish is just bright enough.

Something scary

I came home from work today, did my kitty chores (the feeding and the never ending scooping), changed out of my work clothes and prepared to do what I would normally do – get into work email, surf Facebook and then finally get comfy and watch something on television. 

But tonight, after changing out of my work clothes, I decided I wasn’t in the mood for tv. I was in the mood for my book and my bed – so off I went, happy that it’s at least dark early these days and I wouldn’t have to feel guilty for reading in bed before the sun went down. 

Usually the noise from the television is also pleasant to me. I wasn’t in the mood for background noise tonight. It puzzled me…mostly because I usually love some good tv at the end of my day. It helps me turn off my brain. Lately, it’s not performed it’s job terribly well. 

The book I’m reading is one I’ve read five or six times before. It’s called Ghost Story by Peter Straub. It’s the absolute most terrifying book I’ve ever read. Every time I read it, I ask myself why the hell I can never get this book out of my head.  I don’t know why I always go back to it – I guess it’s also terrifyingly good! Then, it occurred to me. 

Maybe I needed something scarier than what’s been flying around in my brain lately. Maybe not just any story, or novel, or biography of some obscure historic figure would do just now. 

How to distract yourself from compulsively thinking really scary thoughts? Read something scarier. 

Seems perfectly logical to me.