Tales of an elderly shut-in, episode 1

Funny things happen when you spend a lot of time alone. Your brain goes places long ago left behind. You start thinking about every little thing.

I find it odd, specifically because I have always spent a lot of time alone and I have also always enjoyed the crap out of that fact. Maybe it's because I get so much of people in my work? By the time I get home from all of the managing, talking, maneuvering, game-of-thrones-playing and otherwise interacting with my team, my clients and my colleagues I am fairly well talked out. I make a nightly call to my mom on my way home from work so that once I finally walk in the door, I don't need to talk to another single human until the next day. It's kind of glorious.

Even though I've been home for over a week dealing with this vertigo mess, I've had more visitors than I usually have and a lot more social visits – even though most of them occurred in my bedroom with visitors gazing down upon me lying flat on my back, I still got to see people. It was nice. But now that I'm facing down another Monday and likely a week where I will be working from home, it's starting to motivate strange thoughts in my brain. Like…why am I so happy alone?

Am I trying to protect myself? I mean, it's possible. I've not chosen very wisely in my long years of relationships with men. Probably because most of them weren't men so much as boys. My husband and I were as opposite as opposites get. He was fun-loving and happy, the life of every party – I was intense and responsible. Once he was gone, I took it on myself to make up for his absence by being as "fun" as I could be (you can interpret that as you will, but I think you know what I mean). I had a particular weakness for bartenders, ideally under 25.

I had a few bigger relationships, sure I did. None of them were what I would now call very real. I was looking to fill a void, change my own perception of myself, or even just experimenting to learn more about myself. Filling time! Having mindless fun.

The last big fling was such an unmitigated disaster (I was around 43? I think? It's hard to remember) that I haven't gone back to the plate since. I have no idea why I'm using sports metaphors. I literally hate sports. I also literally hate being in relationships, based on my reflections of late.

A friend of mine posted on Facebook tonight about how long she'd been single and how it might be time to head out there again. This is a really good friend, which might seem odd because we've never actually met in person but to say that she has become one of my best friends in such a short time would not be an understatement. She is my MS guru. My sounding board. She makes me laugh. She understands when I cry. That post of hers today made me think how long it's been since I've been in anything even resembling a relationship and it's a damn long time.

Like 8 years???

The funny thing is, even now that I have been diagnosed with a life-long chronic illness that makes living alone a challenge at times, I sincerely believe that the only thing that could make this whole experience worse would be to have to go through it in front of another human.

When I'm so low that I can only crawl up the stairs; When I'm so sad I just lay on the couch and sob while four animals lick my face trying to get my tears before they dry up; When I'm so tired I can only roll over and cling to my body pillow and close my eyes for a few more hours; there is nobody to pressure me. Nobody to urge me to try harder. Nobody who cares if my bedhead is so bad that it's officially become performance art.

When I need help, I've found ways to get it. Friends and family get the nod for being awesome just because they love me and believe me when I tell you, I've needed them. When things happen that aren't practical to bother friends and family for, I do what every single woman of a certain age must do. I HIRE SOMEONE! If it can be delivered, I order it. If it can be hired out, I do it. My current staff includes the following:

  • Cleaning lady
  • Yard guy
  • Window and gutter cleaning lady
  • Tree trimmer guy
  • Bug spraying guy
  • The usuals like plumbers, electricians and other handy people
  • Grocery stores where I can order online that put my groceries in my car for me
  • The people who make me feel better on the outside (hair girl, nail girl, massage guy – I have the general maintenance covered).
  • Various Postmates drivers (who may actually count as long-term relationships now that I think about it).

None of this is cheap, of course, but it makes life so much easier especially when your body seems intent on making life as hard as it can possibly be. Then there are my people at work who I can rely on for just about anything be it food for lunch, delivery of medicine, meetings in my living room while I can't stand up so good, general comradery – it's almost more productive than actually being in the office.

But I've been in this house for more than a week now and my mind wanders to strange places where I find myself wondering…why is it that I'm so happy alone?

I prefer my singular strangeness, quirks, bizarre habits and rituals when they are mine alone. Having so many people in and out all week has proven this to me. It makes me squirmy to explain to people all of the strange things/routines/rituals I have in my house day-to-day. Why everything looks super spiffy on the outside but the drawers are a disorganized mess. Why I put the cat bowls where I put them (in the same positions every single day). How I thoroughly scoop the litter boxes as if I'm being judged by a highly critical board of experts. How I make my bed the way I make it – and make it again before I get into it, if for some off chance I was too tired to do it that morning. How I fluff the pillows on my couch before I go to bed each night. How I only read in bed and how I've seen every episode of Law & Order SVU at least 500 times and can likely recite each one of them for you.

These things don't make me sad. They make me intensely happy. I feel the most me that I ever feel when I am home alone. Sometimes I think it's because of what I've done the minute I've gotten into any kind of relationship throughout my entire life. That would be immediately start trying to change myself into who some guy thought I should be. Or more accurately what I thought some guy wanted me to be. It has never not happened. Wait. That's a lie. It has happened at least once. Maybe twice. But each time there were other reasons so concrete why that dalliance could never go anywhere at all, it was never really that much of threat to my singularity. I knew I'd be back before long. And I'd have the same overwhelmingly familiar feeling when it was over.

Relief.

I know what you're thinking. You're thinking, "Oh Beth, stop, you just haven't met the right person yet! You're putting up walls to keep others out! You aren't really happy you just THINK you are and that's so sad!" But those of you that know me well will definitely understand. You get how being myself, and only myself, is so important to me, so hard-won a battle, that I've just not met the man yet who would be worth the risk of even losing a tiny bit of me in the making of a couple.

I'm not sure that man exists and to be frank, I'm almost glad of it. What the heck would I be doing with him now? Making him carry litter up the stairs? Take out my trash? Fix things that are broken? Make me happy when I feel sad?

Nobody can make me happy when I feel sad. Only I can do that. I learned that a long time ago. I found peace when I stopped looking outside of myself for that thing that would make me whole. I found peace in my solitude.

I guess that's a good thing, too. In my convalescence, I have a new member of my staff this week who I've already fallen in love with. She's my new cat helper, Kathy. I found her through another angel of a friend who knows what it's like to be a crazy cat lady with four cats and temporarily incapacitated.

My new cat sitter comes twice a day to feed and scoop. In the mornings, it's the most amazing thing! She gets here amazingly early (before the kitties have started their morning ritual of pouncing on my sleeping form to wake me for feeding time). I sleep right through it! I've gotten the best sleep of my life these past few days. While I am still dizzy as hell, I am starting to feel a little better. I can see better. I can read! I can sit upright for a few hours and not feel like I'm going to perish. It can't be long before I can leave the house, right? Things are looking up!

Tonight, when she came by for dinner hour, I was gushing all over her about how grateful I am for her help. It eases my mind more than you can imagine to know that I don't have to bend over, use steps and generally take my life in my hands in order to keep up with my rather um, extreme, kitty care standards, I told her. She is a wonderful human. She scoops like it was an Olympic sport! After I got done gushing, she said how happy she was that she hadn't woken me up this morning when she got in to do the morning shift.

"I was trying to be super quiet," she said. "I know how much you need your rest and I would have hated to wake you. I had some trouble with my key this morning and I was worried that it would disturb you but then I got the door open and headed up the stairs and I could hear you snoring, so I knew you were fast asleep! I was so relieved!"

I COULD HEAR YOU SNORING?!?!?!?

So there you have it. I snore. I had no idea. I thought maybe I snored occasionally, and when I did it would be tiny little snorts sort of like an adorable baby piglet would make and they certainly wouldn't be heard all the way from the steps. OH. MY. GOD.

I've added to the list of reasons why I'm happy to wallow in my solitude. My joyful, peaceful, calming solitude. My personal quiet sanctuary where I can be fully myself and nobody else. Maybe when I stumble across the man who can embrace all of that (AND the fact that I snore) I'll be willing to open the door a little. Or maybe not. I mean, unless he happens to stumble into my living room, it's highly unlikely that Mr. Right for Beth is going to make an appearance any time soon.

Unless he's the UPS guy. Who also loves cats. And chicks who snore.

 

 

Tales from the puffy village

That's it up there. The puffy village. The place I love most in the world, where I come for comfort, where I lay my head when the world out there becomes too much. An old boyfriend dubbed my overly comfortable bed the puffy village a long time ago because he said it was so insanely comfortable you could live there happily for all time. The boyfriend is long gone. The puffy remains.

I take a lot of care making her as comfy as possible. I choose my sheets and bedding with obsessive care the way I used to select designer shoes. Currently, I'm in a mixed print phase.
Just looking at this picture makes me happy.

Mostly.

See, I've spent a whole lot of time in the puffy since being sprung from the hospital on Monday evening. I mean, I'm glad I got out. I couldn't stand the idea of that hideous torture chamber they call Allegheny General Hospital for even one more second. I guess I thought it would be better at home. I'd feel better. The ruse I performed for the overly attentive PT team would turn out to be real and I'd go back to being able to stand up, walk around, bend over touch my toes and do a little jig. But as I'm sure you've figured out by now, things actually haven't gotten much better at all.

I'm so dizzy it's ridiculous. I can barely remain on my feet. I hold on to anything and everything in order to do basic things like walk to the bathroom or down the steps to the kitchen. My legs are weak on top of the dizziness I feel in my brain. I feel like my house has been transformed into a fancy house boat that happens to always traverse super rough waters.

The antivert I'm taking for the dizziness makes me tired and doesn't seem to help the vertigo much at all. I haven't left the house since getting home Monday night. I've been asleep approximately 85% of the time since. I'm still in pajamas all day and I've yet to risk the shower. I'm deathly afraid of falling and ending up in the hospital again – and lord knows, that's just not gonna be something I allow to happen.

Family and friends are at my beck and call to handle chores, to feed me, to make deliveries and make me laugh. Mostly they're there to help me up and down the steps and take care of my very spoiled menagerie of felines. Damn, I have a lot of cats.

I can't read because my right eye is wonky. I can type if I keep one eye closed. Television is hard, again, because of the wonky eye. My list of things I can do consecutively has grown shorter. I'm down to one thing at a time before I need to rest. I used to have at least two things in me, sometimes even three.

It's hitting me hard because I'm finally realizing that this just is what it is! The part I thought was the worst, where I was waiting for the magical drug to kick in and make me more human, that was the good part! I thought it was the bad part. I thought I could only get better.

Turns out, it's super easy to get so much worse. I wonder how long it's going to take me to bounce back from this episode? What will my new normal be? Will I ever get back to my doing three small things in a row self? How long will I be the queen of the puffy village?

At what point do I simply cease to exist?

I know. I'm super dramatic. Spending so much time alone in deep thought whilst listening to one's body fail all around her will do that to a girl. And that pisses me off even more!

I'm the queen of the loners! Ask anyone who knows me and they will tell you how much I enjoy my own company. It's probably a giant character flaw but it's true. These last few days I feel like I'm in the twilight zone where I'm walking from familiar room to familiar room, holding on to walls and chairs, looking for the person I used to be and not finding her. There's someone else here now. She can barely stand up and her hair is atrocious. Don't even look at her eyebrows! The horrors.

I keep telling myself this too shall pass. That's what everyone, literally everyone I know both in real life and in MS life, has told me and I believe those people. They're so much better at this MS thing than I am. They've gone to the darkest places and clawed their way back. I keep thinking I've accepted this thing in my life then something happens that turns my life ass over teacups and I'm back at the beginning looking around thinking, "what the hell just happened?"

I just want to not be dizzy so badly! I want to will it so with my broken brain. I want to sleep the sick away and wake up magically feeling a little worse for wear but generally just a little gimpy and slow. I thought that was the bad part! I thought things could only get better. As if I didn't know the truth.

The truth is that was probably as good as it gets. That whole time before this hospital incident when I felt like I'd hit rock bottom wasn't even close to the bottom! I'm looking at getting my first assistive walking device (form tbd hopefully with the help of some outpatient PT once I feel a bit more able). Once I get a cane, I'll probably need a walker soon after that. The wheel chair can't be too far behind right? At least a scooter…

I know how lucky I am to have the luxury of sleep in the world's most comfortable bed. After being deprived of sleep for so long, being in the puffy feels almost like heaven. And yet the whole thing changes a little tiny bit when you realize you're not in the bed by choice. You're in the bed because your body flat gave up on you. No combination of high thread count mixed print sheets can help you in that situation. You just have to suck it up. Try to be grateful and go back to sleep.

Every time I close my eyes these last few days I have this intense hope in my heart that when my eyes open again I'll be off this houseboat version of my life and back to my happy place where a shower isn't life threatening and awesome sheets are enough to make me feel happy.

Until then, here I lay. Flat on my back. Cultivating happy hopeful thoughts and functioning as a speed bump for my very many cats. It could be worse. It could be much worse.

Remember the hospital? Exactly. Shivers.

Life on the inside, part deaux

So as most of you already know, I was rudely awakened at 3:45am with the arrival of my first roommate. One of only three such roommates I’ve ever had in my life who were not related to me in some way. 

It was rude. Bright lights. Outside voices asking about symptoms, the ins and outs of advanced directives, the ordering of snacks, the assemblage of various monitors and beeping apparatus. So. Yeah. No sleep again for this girl. My roomie is really nice. But now I have to hate her extra large because she’s getting out of here at 2pm. Today. Why?!? Why not ME?!? And yes. I am a bad person. But at least I admit it. 

I made some progress today, however. I posed what I thought was a perfectly logical and valid point to my neuro attending team. Why in the world would anyone give any human being a mega dose of Solumedrol at midnight? I mean, that practically ensures a sleepless night when sleepless nights are already likely based on my random self inflating bed with a motor located right under where my head lays each night. It’s like a water bed but with air. It gives me straight up motion sickness. But that is neither here nor there. Solumedrol at midnight! I’m no doctor. But that just seems like every kind of bad medical idea anyone’s ever had. 

The answer? Well. Because that’s what time the order went in. Oh. Right. That makes total sense then. 

My answer? So change the mother humping order you fools! I want my mega roids at 6am and 6pm. Period. There will be one day where I’m on a little extra roid juice, admittedly that’s not ideal. But want to know what’s an even worse idea? Getting pumped full of steroids and also expecting to sleep. Want to know what makes all MS symptoms worse? Two things. The horrible relentless heat. And, lack of proper rest. 

Proper rest tonight, in particular, is critical. 

Tomorrow I am being evaluated by the PT team. It’s up to them entirely whether or not I get released after my last Solumedrol infusion tomorrow at 6pm OR if they decide I am a danger to myself, they will keep me here until they can find me a room with an in-patient rehab unit. 

Oh. Hells no. Hell hell hell NO. I am not allowing that to happen. I’m adamantly opposed to in-patient anything after this debacle. No way. I’ll use my roid induced strength to stage a violent coup resulting in me wobble walking to the nearest exit and flagging me down a damn Uber. 

So I’m gonna take as many drugs as I can to help me sleep, even if I have to have family members sneak them in via body cavities, so I am well rested and not quite so wobbly tomorrow for my big test. I’m definitely doing better. I mean I can probably walk to the bathroom myself if they’d just let me. I haven’t thrown up in 24 hours at least. I’m practically an elite athlete right now in MS terms. Maybe ginger ale is some kind of magical life elixir and I just never knew about it before. 

I’m making up a new song. It’s by Beth Street and it’s called “No Wobbly” and it goes a little something like this…

I like the way you work it (no wobbly), girl ya got to walk it out. I like the way you work it (no wobbly) girl ya got to balance out. She’s got dirty hair rolling with the phatness. Solumedrol giving her the head fits. Street knowledge by the pound. Seen ’em close up with her face on the ground. But got to get her home stat so no wobbly’s where it’s at. 

My most sincere apologies to Blackstreet. But shorty’s got to get home before she loses her damn mind and Wobblies stand between me and that goal. All no wobbly vibes coming my way will be graciously accepted. 

I will not be an in-patient anywhere ever again as god is my witness. 

So I have to roll now. I have to plan this going away party for my roomie. Drink ALL the ginger ale. Load up on roids. (I was told I may require a xanax after my short term roid loading that has to happen today to get me on my new schedule. That should be interesting.)

And tonight is turkey dinner. I mean who’s really winning here? Turkeys are great walkers! It’s gotta be a good sign. 

#nowobblies

Sing it with me, folks. The puffy village is calling my name and I must get back to my precious before I go all Gollum on some PT hobbits tomorrow. 

Life on the inside, ep. 1

I have no choice but to laugh. Kind of.
So for those just catching up, I took a bit of a turn for the worst earlier this week. I woke up on Thursday to some significant vertigo that was quickly followed up by violent vomiting. 

I heard the MS Club rule book in my head, I forget which rule it is but it states that no new symptom can be attributed to an exacerbation of your disease unless it lasts for more than 24 hours. So I tried to wait it out. This may not have been the best choice. As the day went on I became basically bed-ridden. I couldn’t eat or drink without violently being ill. I called for help. Mostly because I couldn’t feed my cats or scoop their litter because stairs were pretty much out of the question unless I had a straight up death wish. Clearly, my priorities are straight. 

My mom and my sister came to my rescue. It was after a few more hours then watching me lay in bed moaning that we decided to wait it out. My sister came and slept on my couch (where she promptly was set upon by my very many felines who wanted to play with the new girl in town). When I woke up the next morning, I couldn’t quite believe it was possible but I was much worse. No food stayed down. No water even stayed down. After a call to quasi-nice Nurse Carol, we decided a trip to the ER was in order. I couldn’t stand up without vomiting or falling over, so we had to call a freaking ambulance. I mean…good gravy. A freaking ambulance. 

Since then, I’ve determined some important life lessons…

1. Ambulance guys know their shit but the journey getting this less than petite lady person out of the house felt nothing less than death defying. It’s humbling when it takes 5 grown ass men to move your limp self to a gurney. Ego hits! They just keep coming. 

2. The ER via ambulance plan itself was definitely the best option. No problem getting in and situated in my emergency cubby thing. One can’t quite call that a room. It was a cubby. With five other cubbies full of people at least as bad off or worse than me. 

3. The “bed” in the ER cubby was barely a cot made of royal blue rubber. It smelled like a new pool floaty when you take it right out of the package and you need to blow it up? It smelled just like that. It was extremely un-bed-like in any way. 

4. It’s a good thing I had that nice bed because I was to be laying on it for almost 9 hours. Apparently the hospital was “full to the gills” based on many heat related health issues all over town. Yet another reason to love the heat! My sarcasm skills are going to a whole other level around now, in case you were wondering. 

5. Because I’m a woman of a certain age with severe vertigo, they had to rule out stroke. Even though I have MS and it was a pretty good bet what was happening…CYA levels at hospitals are off the hook. So I had several very wild and wooly head manipulations by several different neurologists. Then a CAT scan (another first!). And still not admitted. Back to smelly the blue raft bed. 

6. MRI is scheduled, then, at 9:45pm. That appointment gets rescheduled no less than 5 times because of “lack of proper transportation.” Around 10pm, though, I am joyfully told I’m going up to a super comfy patient room. Finally! Some relief from the blue puffer bed. 

7. Or not. My hospital bed is also covered with the blue pleather-like material covered in a fitted sheet, a definite improvement, but it gets so hot in the night I seriously fear I may self combust in the hospital itself. 

8. I explain to the night nurse that I’ve not had food or water in my system for almost 35 hours and I’m feeling like I need both stat. “Oh…I’m so sorry but you’re on the stroke protocol and that means no food or drink tonight.” What!? I promptly lose my shit. “Call someone,” I all but bellow. “Im dying over here.” She calls. It takes three more calls to find out they’ve made a mistake. They can give me food. 

9. “Food” is a better term for the world’s saddest looking turkey sandwich and a cup of apple sauce. I haven’t eaten apple sauce since I lived at home and my mom made hers from scratch. I scarfed up that nasty purée faster than you could whistle Dixie. That’s how hungry I was. 

10. “New plan! No MRI tonight. But we’re gonna start you on Solumedrol tonight and start the drip at midnight. The neuro thinks this is more likely an exacerbation of your MS.” Omg, ya think?!? So they pump me full of crazy energy drugs at midnight. I asked for a sleeping pill. “Pharmacy never responded.” So yep. I was up pretty much all night obsessing about how horrible my “bed” actually is. 

11. I cannot get out of my bed without help. To pee even. I stand up? I fall over. The night time nurses aids each weigh about 75 pounds soaking wet. “Hold on to us,” they twinkle at me, “We have you.” Um…just. Sigh. 

12. Thursday, the day I took ill as they used to say in old school novels, was to have been a shower day. Chew on that for a moment. I’m officially categorized that thing that my dearly departed husband used to refer to as a “dirt pig.”

13. People keep complimenting my “awesome hair.” I am being punked because I am desperate for a hair cut. My hair is the shape and texture of baby doll hair (see number 11). And because of the Great Bleach Debacle of 2017, my hair is quite literally half dark brown (riddled with gray) and half bright white blonde. It is not nice to punk sick old ladies. 

14. Secret deodorant works for a really long time without reapplying. Pass it on. 

15. Hospitals have these amazing things called “bath wipes.” They are heated. They have soap in them. They require no rinsing. I am planning to steal many of these wondrous things on my way out. I feel I deserve them. Hell. I’ve earned several packs of those wonder wipes. Easily. 

16. Mostly because after my MRI at 8am this morning we’ve generally concluded that I do indeed have a new lesion on my vestibular spine where my spine meets my cerebellum which is where balance is controlled. Hence the general hideousness of the last few days. Hence the IV steroids. HENCE ALL OF IT. 

17. Nuerologist #5 tells me they are going to keep me at least a couple more days. More IV steroids. Then she asks me, “what is your living situation at home.” I didn’t even think before I answered, proudly, “Oh, I live alone.” 

18. WHY DIDN’T I LIE?!? “Oh. Well then. We will have to get you in some PT before we let you leave then. We need to be sure you can handle yourself at home alone.” I mean, if she could see me at home basically every day of my life they may have committed me to inpatient care a real long time ago. FML (to be blunt). Honesty is FOR SURE overrated. 

19. If you’ve ever had IV Solumedrol you know that shit taste it gives you in your mouth. I asked for something to suck on – hard candy, life savers basically anything to cover the horrible metal taste in my mouth. Guess what? Yeh. Exactly. In a hospital where they administer this stuff all of the time, they have nothing. Zero. Nada. 

20. I’m gonna smash that chocolate pudding. Even if it does taste like bad metal. 


In short, I’m gonna get fat on fancy carrots, chocolate pudding and full calorie ginger ale for the next couple of days whilst being held hostage at Allegheny General Hospital. 

The one silver lining? I finally found a Law and Order channel on my tv. It’s not SVU, I couldn’t get that lucky.  But I’m learning to love Jack as ADA again. There really always IS a silver lining. 

(Sarcasm game? ON POINT).

Also for everyone who has reached out in so many ways, thank you. Every single one of you. This would suck even more without you. 

Life is made up of a whole lot of steps

Think about the average day. From the time you put your feet on the floor beside your bed in the morning to the time you lift them off that same floor again when you finally lay down to sleep. Whether you’re a person who wears a tiny computer to tick off your ten thousand steps or whether you’re just an average under achiever like me (before MS) and you hovered more around 5,000 – in any case, that’s a lot of steps.

Steps aren’t all created equal. You probably take a lot of your steps for granted. The steps you take to get your coffee in the shop up the street. The steps you take in your house between rooms. The steps you take to the bus stop. The steps you take walking to and from your car. Those aren’t “big” steps but they’re steps just the same and until you face a time in your life where you can’t take a single step for granted, you probably aren’t very aware of them at all.

I got cocky. I know, I know. I do it every time.

I have a day or two that doesn’t completely suck and I get all over confident and start to think that maybe this isn’t really happening. Maybe I’m going to just keep feeling better and better and maybe I really don’t need all of these drugs I take every day…Maybe this has all been one big long bad dream that I am now going to joyfully wake up from and go back to being the average middle aged woman (who considers herself rather happily lazy). But no. That’s actually not the case. This is hella real.

I decided to do an experiment today and skip my morning dose of Ampyra to see if I really did need it. I mean, so many things have gotten a little bit better in the last week or so that I thought it was possible, at least conceivable, that maybe I didn’t need the miracle walking drug. I’ve been wishing I could cut down on my daily drug cocktail. I don’t really walk that well sometimes even when taking the walking drug, so I talked myself into the possibility that maybe it wasn’t really working so well at all.

I had a meeting this afternoon at a local high rise downtown office building not that far from my office. I didn’t set myself up for failure. I knew walking to that meeting from my office a couple of blocks away would be pushing my luck so I didn’t even try. I worked from home in the morning. To be honest, I felt rather exhausted today for the first time in a week or so and I felt like I needed the extra rest that would result from not going into the actual office before the meeting (fewer steps…it makes sense). I drove myself to the meeting but as soon as I stepped out of my front door I knew I had made a terrible mistake.

I’d forgotten how bad frankenlegs can be!

I was walking in my head, but the messages were definitely not getting to my actual legs. My legs were dragging. My gait was wonky – as if I’d spent the morning drinking strong hooch and not resting up for a client meeting. I was walking into walls and banging off of trash cans. I tried to park as close as I could to the entrance to the building but even in the parking garage under the actual building, the number of steps you have to walk just to get inside of a high-rise office building is more than you’d think. The handi-spaces aren’t very close to the elevators at all (the close parking spaces were all marked “reserved” and I can almost guarantee they were occupied by able bodied walkers). The entrance I went through was a little further away than the usual one I go into and that meant more (guess what?) steps.

When I parked, I realized I had to pee. I wasn’t sure where the closest bathroom would be (the bathroom that would require as few drunk steps as possible) but when I finally got to the elevator I noticed with joy that it was located one floor down on a lower parking level. I pressed the button down, and not up, where I was actually going, hoping the extra steps to get to the bathroom wouldn’t be too many for me. I saw the bathroom door just outside of the elevator doors as they opened and I heaved a sigh of relief! Not too many extra steps. It was a single. I tried to open the door. It was locked. I waited about ten minutes. I knocked. It wasn’t occupied it was just locked. Awesome.

I head back up the elevator to meet my team in the upper lobby by the security desk where you sign in for meetings. The escalator to get to the upper lobby moves at some insane break-neck speed that required me to focus and concentrate really hard in order not to break my neck whilst jumping on. People are walking very fast all around me. Some of them are obviously annoyed with my hesitation to get on the escalator. They have places to be! I ignore them. I’m used to being in the way of other people who are used to walking anywhere and everywhere without any effort as fast as they please. Don’t they think I’d LIKE to walk faster? Probably not. They assume I’m lazy or just in their way.

I make it to the top of the escalator and explain my leg predicament to the three co-workers I was meeting and told them I was going to be walking extra slow because my legs just weren’t, well, super operational. They were extremely understanding. They walked slow (really slow) with me. I was surrounded by support as I stumble walked to the elevator to the 57th floor. If you’re wondering, that’s a lot of steps between the escalator and the elevator bank to the 57th floor.

When we arrived on 57, there was yet more walking to the conference room where our meeting was to be held. My co-workers, again, were awesome. They stood around me like a fortress, making it almost certain that if I did fall on my face, one of them would break my fall and probably help me back up again. I was grateful for the support and embarrassed that I needed it. I’m supposed to be in charge. I’m the leader! It does a number on your psyche to hobble to a meeting. I mean, I’ve done it before. I’ve done it a LOT in my recent past but it never gets easier. It never stops being frustrating, embarrassing, and just plain annoying but having people around you who get it does make it a bit better.

I made it to the conference room but then I remembered I had to pee. Guess where the bathroom was? Right. Exactly. It was around the bend, through the kitchen and to the left, which is exactly the path I just stumbled to get to the conference room and now I would be doing it three more times. Mandy, one of my co-workers, offered to walk me there. It’s humiliating, no question about it, but I was in no shape to turn down an escort to the ladies so I gladly took her up on it. Bless her. Really. Life with MS would suck (even more) without understanding people.

We had a great meeting. I’m still me (especially when sitting down). My addled feeling stopped the minute I sat my ass in the seat around the conference room table.

But I couldn’t get it out of my head. Walking, not very far, is a fundamental part of life! What would have made this experience better? I started to think about it. What walking aid would even help me in this situation? A cane won’t help my legs remember how to be legs. A rollator would make it even harder to navigate escalators that move at the speed of light. A scooter? Would I have to get an old lady car to accommodate my giant scooter so I could scoot from the parking lot to my destination (somehow) following the signs that indicate that you have to go completely out of your way to get where you’re going if you happen to need handicapped accessible pathways? None of these options seem workable to me.

Thank god I had some Ampyra in my bag and I popped when once I got to sit down but I still had some time before it would smooth out the walking signals and I know the whole concept of medication needing to maintain therapeutic levels to be effective. I got even more pissed at myself for experimenting with something so important. I walk funny WITH Ampyra. Without it, turns out, I can barely walk at all. Color me informed.

This is on my mind because I have some potential work travel coming up and I’m trying to get my head around how I’m going to manage that in my current state. If driving to a meeting in my own town causes this kind of consternation, imagine what happens when you add in a couple of airports, a southern climate (my travel would be to Atlanta. In July. FML). I’d have to be in good enough shape once I arrived to not only function but to engage, interact, be delightful even. Or make words in sentences that make sense, at the very least.

I thought I’d be farther along by now.

This disease isn’t moving at a speed that I find acceptable. I got cocky. A couple of good days had me booking airline tickets and throwing caution to the wind. A really bad day made me realize how bad an idea that is, right now. Right now? Right now I can manage only the fewest possible steps. I have to plan every detail of every day like a military operation focused on efficiency and minimizing foot traffic as if my life depended on it. When I’m home, I know where to park, where the paying machines are, where the bathrooms are, who I can call to help me, what my escape routes are in case of extreme distress…all of it! It’s not easy but I do it.

Toss in a trip down south for a day of executive training and all of that goes to hell. Will a cane help me? A rollator? A goddamn segway? Good lord. Imagine the damage I could do to myself and possibly others on a segway! I shudder to think of it.

I’ve already reached out to explore my options for attending remotely. I know people will understand if I can’t pull it off just yet. I think so, anyway. How long will that patience last? How do I not consider that question? It’s valid. But I don’t have room for it in my broken brain right now. There are too many other things to consider…like what I’d do if I happened to pee myself while hobbling around at super slow speed in search of a bathroom on unfamiliar turf.

Here’s what this cursed disease is teaching me.

Don’t get too cocky. You will be knocked on your proverbial ass. Keep trying, by all means keep trying, but also be realistic. Your B cells are still being killed off in droves and your body isn’t reacting well to the process so give it some time, girlfriend. Patience is a virtue and it’s also not an option in your life just now so suck it up, buttercup, your steps must be numbered and that’s just the way it is for the time being.

But while you’re doing all of that, don’t lose hope that every step won’t haunt you for the rest of your life. This will get easier. You will get used to it OR you will get you a goddamn segway. One way or the other, it has to get easier.

Oh. And stop experimenting with your medication, Einstein! The world is full of so many steps. Stop making things harder for yourself for the love of all that is holy.

And it continues. Sigh.

The most important rule of MS Club

I almost hesitate to say this out loud (or in writing, which is the same thing, really, maybe even worse)…but I’ve been feeling a little better these last few days. Not “jump out of bed and run a marathon” better. Not “these boots are made for walking” better. Nothing quite like that.

Just not quite so bad, better. I took a shower yesterday. I didn’t feel like I was going to perish. I didn’t have to take a nap after my shower. Also, I woke up several days in a row without the aid of an alarm while it was actually still morning. I was on “vacation” from work last week so I had the luxury of not setting an alarm. Even so, I found myself awake and quasi-mobile well before noon. Imagine! Also, I noticed last week that I haven’t been eating Ibruprofen like skittles.

Strange things are afoot.

Do you know what happens when you’ve felt like utter excrement for so long and you start to feel even a teeny tiny bit better? You want to do ALL OF THE THINGS. ALL. OF. THE. THINGS. Every last one of the things. But then you remember that you’re a member of MS Club.

The Most Important Rule of MS Club is you need to never forget that you’re in MS Club.

This means something pretty simple. Definitely do NOT give in to the urge to believe you can suddenly do all of the things. And for the love of god, don’t try to do even two of the things at the same time on the same day. Just ease on into the whole not feeling like death warmed over thing and take it slow. Very, very slowly. Do not push yourself to pre-MS levels of expectation thinking some crazy ass miracle has occurred.

Just pump your brakes and take it slow.

Go to bed early after a long day in the office (I wore makeup and clothing and walked to and from my office without falling and omg it was awesome).

Do not stay up late writing all of the blog posts that have been swimming around in your broken brain for days now. Just jot down some ideas so you don’t forget what they were and then GO TO SLEEP. You need to work again tomorrow.

In that spirit, following are some of the blog posts I want to write but will not write on this night because I am a responsible adult with Multiple Sclerosis. Consider it a kind of “coming attractions” preview:

– Is it MS? Or is it middle age? An exploration of the age old answers to the burning question: what is really happening to me?!?

– Not all Flat Shoes are Created Equal: an exhaustive treatise on why flat black sandals can be almost as bad as four inch heels.

– How many days can one stay inside one’s home with the air set at 64 degrees before one is officially considered a shut in?

– Cane/hiking poles/rollator…which MS mobility aid will I be least likely to injure myself using and how does one decide?

– When your doctor cancels your appointment without explanation is it ok to send them a bill for your pain and suffering? And other MS Specialist dilemmas.

– What does “feeling better” really mean? Better than what? An existential debate.

– Witty replies to the question, “how are you?” That are not instant conversation killers.

…these and many more intriguing topics will be explored in future episodes of bethybrightanddark.com.

But they will not be written on this night. On this night I’m going to allow myself to read one chapter of my book before I close my eyes. I’m going to attempt to get a good solid eight to ten hours of sleep. Then I’m going to try to wake up tomorrow, put on suitable outdoor appropriate clothing, drive to my office downtown and attempt to do it all over again. Two days in a row!

Ideally, I will accomplish all of this while also making a better shoe choice than I made today. It’s gonna be awesome.