I finally had a massage

That one time a miracle occurred and I got a shot of all four felines in one frame. There from the top are Ivan (14), Owen (12), Fred (14) and Roger (9). My furry matching menagerie.

(READER NOTE: If you are a cat lover, or any kind of animal lover for that matter, this might be a post you want to skip. I’m serious. I can’t bear to think I’ve shared something that would upset anyone reading. Come back next time. Seriously. I won’t be hurt. I wish I didn’t have to write this one. I felt like I had to. Also, to be clear, all four of my beloved felines pictured above are all very much still with us. Happy as little clams. I promise.)

I had a massage yesterday. A very long over due massage.

I’ve been having some super irritating pain in my neck and back. I’m not MS-savvy enough to know if this is disease related or something else related. I’ve been seeing my massage therapist Michael, for over 18 years. I found him when I moved into my neighborhood at a salon very close to my house. He has become a friend and not just my massage guy. He has an awesome wife that I also really like a lot. I am usually an every other week massage customer so he might technically be my longest regular relationship with a male person. (It totally counts!)

But, I haven’t seen Michael since before the relapse in late July. That’s way too long. My back and neck (the area I affectionately refer to as my hump) has been throbbing with pain for weeks now. Of course I have no idea if it’s MS-related pain, or some other pain related to any one of a million different things. Even after the massage I was sore all night and into this morning. Tonight it’s a bit better. It doesn’t feel nearly as bad as it did yesterday but it’s still pretty sore.

I shared my slew of great news while laying face down on the massage table for optimal back and neck access. My news sounded a bit like this…Relapse, hospital, being home bound, more steroids, more steroids again, dead father, funeral, aftermath, finally getting back on my feet, kind of, the end. A veritable slew of fantastic news that I am growing weary of telling. I’m just going to make something cheerier up for the next time I see someone I haven’t seen in a while.

Then Michael showed me a picture of his new kitten Javier.  We always talk about our cats when I visit. Michael has two cats. Max is 0nly 6 years old. I stupidly asked how he was managing with three cats now. He said, “Well, that’s kind of a terrible story.” And I said, “After my litany of terrible news, how bad could it be?” I mean, I’m a realist. I had to know. I think about how I will handle the death of one of my cats all of the time! It’s morbid. And impossible to stop doing. Turns out that was a stupid thing to say. I was thinking to myself, “You need to hear this. You have a house full of old cats. You have to be prepared. It’s inevitable.”

So Michael told me what happened to Max.

Michael woke up one morning and heard his two cats running around the apartment, chasing each other and playing. That wasn’t unusual at all. He laid in bed listening. Then he heard a very strange hissing. He said it surprised him because his cats never hiss at each other. So he got up to look. His cat Max was laying on the floor panting with his tongue laying out the side of his mouth. Something was obviously very wrong. He started making growling and mewing noises as he tried to get to his feet but his entire back end couldn’t get off the ground. He was attempting to drag himself around, moaning and dragging his legs behind him on his belly, propelling himself forward with his front paws. Michael said it was a horrifying sight and the sounds were terrifying.

Our collective vet is literally three minutes from Michael’s apartment (also close to my house). He saw that it was near 8AM and he decided to get to the vet the second they opened so that he could decide if he could make it out to the emergency vet hospital, that is at least 30 minutes away from where we both live. He somehow got Max into a carrier, Max screaming the the entire time. He was biting at the metal bars on the carrier, making his teeth and gums bleed. Michael said he’d never heard those kinds of noises coming from a cat and he was freaked out. He’s a cat person. He’s had many cats. For him to be shaken like that it had to be pretty awful.

When Michael got inside the vet office, the receptionist told him there was no vet there until 8:30AM. The sounds coming from the carrier were getting worse, as was the blood coming out of Max’s mouth from trying to bite on the metal bars of the carrier. Michael opened the door to attempt to comfort Max. But there was nothing he could do to make the wailing and panting slow down. While his hand was in the cage attempting to comfort this poor cat, Max clamped down full force on Michael’s hand and bit his thumb hard. Now, Michael is bleeding too, all over the vet and all over the floor. Thank god he was called back to the examine room more quickly than he thought (thank heavens for early risers).

The vet tech saw what was going on and brought Max to the back immediately to be looked at. Michael just sat in the little exam room all by himself, feeling sick from both the blood and pain from his hand and the condition his cat was in. The vet tech had given him a cloth to hold on his bleeding hand to stop the blood.

The vet came into the exam room. Thank god it was the woman vet we both tend to like most. She explained that Max likely had a pulmonary embolism. He was paralyzed from his waist down and in a great deal of pain. There was only one thing to do. She asked if Michael wanted her to bring Max into the exam room for the injection. He, of course, said please, yes.

She walked back through the door in the exam room to the back of the facility where the procedures happen and was back in the exam room within less than a minute. She said she couldn’t bring Max in. He couldn’t be moved without causing him excruciating pain. She would have to bring him to the exam room once he was gone. By that time, Michael’s wife Mary was there with him. They both sat looking at poor Max wrapped in a soft blanket on the cold steel exam room table, finally quiet. Hearts broken.

I was on the massage table face down as he told me this story and I could feel myself getting anxious. What would I do? How could I ever handle such an event? How could I manage to do all of that if one of my very large cats is ever in such a situation? Would I even be able to manage it? Who would I call? I would probably call my friend Sandy but she’s not at my service at the drop of a hat. Nobody would be or should be. I might call Alex, my nephew who is my go-to helper…I honestly don’t know what I would do. It was making me sick just thinking about it. I was grateful to be face down. I don’t know what my face was doing with all of this running through my head watching tears dropping to the floor from the center of the head rest.

All I could think about all the rest of the day and into that night as I lay in bed still thinking about it incessantly, was what would I do in a similar situation? I tried to send a wish out to the universe to allow my kitties to go quietly in their sleep, when they have to go. Let me just come upon them once it’s over. Let me not have a dramatic final panic (like Michael went through) that I’m not sure I could even begin to handle. Michael is a strong guy – physically and otherwise. He’s not broken. Like me.

I can’t get it out of my head. I thought if I wrote it down it might help. It usually helps. It’s not helping as much as I’d hoped it would. But I had to try. I often feel lately like I have the world’s shittiest luck. You’ve probably read those exact words in previous posts. It’s a problem I have. The thing is, that’s so selfish and ungrateful of me. I have so many things to be grateful for even now. So many things have gone my way in this life that I should never have one day where I am not brimming over with unmitigated gratitude.

I feel like this disease changed everything almost instantly. Now, I’m the “only-bad-things-girl” and it scares the shit out of me. Why would the deaths of my cats be anything but horrific? That’s usually what I get these days. I have this certainty that I can’t shake. Only bad things. Only bad things. Only bad things. That’s not true, is it? It can’t be true.

That’s some major catastrophic thinking right there. I can hear Cheryl, my therapist, in my head and I know she’s right (even virtual Cheryl is usually pretty right on).

I need to shake it. Believe in something good. Believe in good outcomes and you will get good outcomes. It’s so freaking hard after nearly two years of my health going pretty steadily down hill before my very eyes. It’s really, really hard. How can I find my own faith in good things? How can I start believing that good things will start happening to me once more, if I can just get through this part. This shitty part. I need to make a plan. I need to figure out how.

Actually, I’ve done something entirely different. I’ve decided to try not to think about it at all.

Ha! How mature of me. My “plan” consists of this: Deal with that horrifying thing when that horrifying thing happens. Stop anticipating horrible things happening. Start believing that good things will. That’s usually my only and best option. Sounds easy.

It’s not.

(Sincere apologies to all of my cat loving readers…I know this one was painful to read. I wish almost wish I hadn’t written it. But I had to get it out of my head. I hope you will forgive me.)

The blog post that almost wasn’t

Not my real desk. Not my real writing. I actually journal with an app these days. I’m so tech savvy.

By now, if you’ve read anything of this blog you know that I am a daily writer. I’ve written in a journal for over 20 years. I have stacks and stacks of paper books full of my scribbles. These days I use an actual app and I journal on anything – my phone, my computer and my iPad. Along with my Precious (aka my therapist Cheryl), I don’t have much hope of remaining quasi-sane without daily journaling.

Writing is cathartic for me. It’s something I do because I need to do it – not because I want to. I can’t not do it. So imagine how happy it makes me when you guys tell me you like reading something I’ve written. It’s beyond anything I could have ever wished for.

I started putting my personal writings on this blog because I needed a community. I needed to find people like you all that I could learn from. Real people with real MS who were bound to be so much better at managing this disease than I am at present. I have great doctors, I really do, but it shocks me to this day how The Great Scott, while clearly one of the very best among MS specialists out there, still doesn’t quite get it. I know this every time he asks me, “When did you last walk a mile, Maribeth.” I resist throttling him mostly because I like him and I need his big brain.

Unless you have MS, you can’t possibly understand what it feels like to have it. You can empathize and listen and love and help. I’m grateful for all of those around me who do these things consistently every single day. But you also need a community. So I found one. Props to http://www.trippingonair.com/ for being my original inspiration to take my writing public. You should check her out. She wins awards and stuff and is one of my personal favorite MS bloggers out there.

All of that said, I still write in my journal things that I need to deal with in writing first and foremost for myself. Things that are private (believe it or not, I do keep some things private. Not much! But a small few topics). After infusion #2 of the new goo (Ocrevus for the newbies) I found myself struggling to write Musions on My Newest Infusion #2, which would have been the next logical blog post. I went to bed, tired to the bone from the juice, but not able to sleep. So I did what I usually do when that happens. I wrote in my journal.

This morning, when I’d read over what I wrote to myself last night it made me realize that I needed to share it here with you all, as well. It was the best description I could give about how I felt about this infusion #2. So I’m repeating it here (verbatim, no editing so there’s probably a million writer mistakes included).  I should first apologize for this marathon long blog post. Folks that get through the whole thing might just be super human! People generally like short pithy posts, or tips or hacks or whatever. That’s not me. Oh well. Gotta be me.

So here it is:

It was infusion day today. Big number 2.

I haven’t blogged about it yet but wanted to talk about it here, with myself, because I’m already in bed too late for getting maximum rest before attempting to both shower AND get to the office tomorrow but my brain is in overdrive. (Probably that tiny pinch of steroids injected into my bloodstream today is making sleep elusive.)

It would be notable if I accomplished those amazing feats I mention above but I’d been hoping to get the same little boost I got from Ocrevus the last time (really the first time) and when I’m feeling unrealistically optimistic, I do stupid things. Things like emailing my entire staff and telling them I’m going to be focusing on getting into the office more after infusion day number 2 is in the bag. I may or may not have committed to being in the office tomorrow. The very first day after my big nearly 8 hour day at Allegheny General’s infusion center.

Not all that smart, am I? No you aren’t that smart, Beth.

I feel like I need to kick myself in the ass. Hit restart. I gave myself until this day, big infusion day number two, to stop believing this body simply can’t operate in the outside world as a regular, if slightly ability challenged, human. Today will be over in a few hours and I feel like I have to try harder to make it happen, to stop my brain from undermining every single little thing in my life.

The trick is, figuring out how to do that without trying so hard that I kick myself back into relapse again. Or fall (again). Or end up in the hospital (again). It’s really difficult to determine where that line is. My nose is still a bit purple! It’s literally as plain as the nose on my face, one might say, that pushing too far without realizing it can have dire consequences.

How far is too far? I honestly don’t know and that scares me. But there’s a feeling that comes over me. The feeling of a good day. I haven’t had one in quite a while but it hasn’t been so long that I’ve forgotten what it feels like.

It’s not specific to any symptom. It’s not just how I feel when my feet hit the floor in the morning and I walk a little easier. It’s not a sudden burst of energy. It’s not a lightening bolt when you look back on the day and realize you weren’t popping Advil like Skittles. It’s more like a slow realization that the pain suddenly is not quite as painful. It’s a feeling of lightness. A feeling of safety. A feeling of peace. It never lasts very long, at least not lately. But it’s the good place.

Those are the days when my MS is quiet.

The thing I always fail to realize on a good day is that the constant noise in my head is somehow not there. It usually runs on a loop in my brain daily. “I can’t I can’t I can’t I can’t I can’t…what if? what if? what if? what if? always always always always always… it hurts it hurts it hurts it hurts it hurts I won’t I won’t I won’t I won’t I won’t…” Repeat. That voice allows MS to put a veil over life that makes everything slightly less vivid. Slightly less clear. Slightly less appealing. Slightly less possible.

I don’t know how to stop that voice. I’m probably stupid to give myself some kind of clear line in my own personal sand to test myself. To force myself into action. To present myself with an actual date.

Take a shower. Leave the house. ON THE SAME DAY. Believe it works and it will work. Allow yourself not to be scared.

It all sounds so inspirational and like so much bullshit. It could actually BE too hard. I might get out of the shower tomorrow and feel like my limbs are suddenly made of over cooked pasta. I might fall down when my feet hit the floor when I get out of bed. The world around me could suddenly be spinning like a crazed whirly bird. I might throw up again. I might have something entirely brand fucking new like not being able to see right or one or the other side of my entire body suddenly going completely numb.

Any of that could happen. That’s what this crazy ass messed up disease actually does to our bodies. And it’s entirely unique and different for each of us. We can relate to each other (us who are in this strange club called multiple sclerosis most of whom are my digital friends, but not all). It helps to know that someone else had a similar thing happen to them that one time…but that only goes so far. Your MS is your MS and until you look it in the face and make some kind of friends with it, every day will be a complete and utter surprise. I literally have no idea from minute to minute, second to second, moment to moment what my central nervous system has cooked up for me with her girl Friday (my immune system). I have to just accept it. I am almost two years into this mess and I’m shocked that I still haven’t accepted it.

Listen. Here’s the bottom line. Every day is a complete and utter surprise even for people that don’t have MS. My unpredictability is almost better than theirs, all of those normals I mean, because mine has a name.

Theirs is just called “life” and holy shit that’s the scariest disease of all because it also changes moment by moment. I used to be one of them (a normal) and i know how I felt. I thought I knew how my life would change for a million different reasons…I had a plan. I was reasonably smart and I worked so very hard and made such important plans. I would tell myself that by being a good, kind, loving human being I would have my happy little place in the world. Things would go my way. They had, for the most part, so it was an easy myth to believe…But I didn’t know. None of us has the first fucking clue what’s going to happen on any day of the week. We just think we do. I know!

Maybe when I look my named disease in the face and accept all of that chaos I will begin to accept that disease isn’t always ugly. It has facets and eccentricities just like we all do. I think I know what it’s going to do. It’s going to destroy me. It simply has to. That’s why it exists! But maybe there’s more to it than that. Maybe disease can be a teacher. Maybe I can learn how to stop thinking the teacher is a mindless dolt, and start listening to her.

Or maybe I can’t. I honestly don’t know at this point in my own personal evolution. I have no idea what’s going to happen next. And neither does anyone else. This might sound crazy but that’s the part that makes me feel better. That I know that fact to be gospel-according-to-beth-truth. We never know. We never have known. It’s always been a complete crap shoot. And it still is.

Will I shower and go to work in the office tomorrow to triumph over the gauntlet I threw down for myself?

The truth is, I don’t know. I know I will try that’s all I know for certain.

Post Script:

My original plan was overly ambitious, after all. My day started today with phone calls at 7:30AM and then call after call after call until it was 3PM and I still hadn’t showered or brushed my teeth. I did make some important things happen with all of those calls so it didn’t feel like a failure to me. I just had to suck it up an accept that I was being overly ambitious.

It’s a good thing too. Because I did finally shower around 3:30 PM and that shower kicked my MS-having ass. I never would have been able to get done what I got done today had I attempted to go into the office after an early shower, as I so foolishly planned for the day after a rough infusion experience.

I know it will take some time before the new goo makes it’s magic. I’m there in my head now. But now that I’m finally physically clean? I’m going to the office tomorrow. Baby steps are still steps in the right direction. I’m giving myself a much needed pass on not holding to my commitment to be there today. In the end, I’m trying. I’m trying so very hard! That has to be enough.

When words fail the writer

Rest in peace, Daddy. You did good.

We all get there eventually, I guess. We all get to the point where you are just so blind with anger and frustration that you don’t even have words to describe how angry you really are. I’m a word girl. I’ve been struggling with words.

I think I may have taken the expressway to my current state but as of this middle of October, I am personally ready to put a lid on 2017. I know, I know. I hate to curse myself too, but hell, I’ve made a career of it thus far and still I’m here. So, go on, Universe, give it to me. Pour on a load more misery, a tad more challenge, a little more what the eff. Oh wait. You already have because you’re kind of an asshole.

I remember that now.

I hate feeling sorry for myself. I like to be the plucky, looking-always-on-the-bright-side kinda girl you all have been getting to know (or for some of you, who have known me for years and years) but at times, more times than I’d like to admit so far in 2017, even I get to the point where I have had enough. I have had enough.

This disease is a bitch. She lets you get all positive for like 20 minutes then you find yourself calling a friend for an escort to the office from the parking garage just across the street because you get dizzy when you actually try crossing the street (looking both ways…easier said than done for me at present).

You think your relapse has come to an end…but shit keeps going awry and life keeps happening (and eventually death happens too) and whoa. Is it possibly the truest statement ever made by some very wise and sage and learned medical professional that stress can magnify the symptoms of multiple sclerosis? Why, yes. Yes, it is. Stress is the devil.

I laugh in the face of stress! Or, I should say, I used to. Now I am stress’s bitch. Stress turned my legs into tree trunks, my body into a throbbing ball of intense pain, trembling like a rubber band stretched a little too tightly, ready to snap…and on top of that, drugs designed to keep me awake actually made me manic. Manic. At the funeral home where your beloved father is laying at rest in an open casket. Super appropriate. Thanks Provigil. You kept me from falling over but you also made me into a fast-talking, loud-talking, super-energetic ball of obnoxious at my own father’s viewing. Probably not the tone one should have going into such a horrible, sad event.

By the end of the night (it lasted five hours…just five hours where I was mostly able to sit) my entire body was shaking. I fidgeted around up and down, down and up, changing positions in my chair just trying to hide the pain I was in, weird smile plastered on my face. Once it was over and the people were gone, I couldn’t hide my shaking hands and my trembling legs. I barely made it to my car. I knew what was coming.

On top of being incredibly sad, after saying good bye to her husband of 56 years, now my mother would be worried about me on top of it. I thought I could hide it better. I was wrong. I used to be able to fake just about anything! Now I can’t. I had to arrange for help when I finally got home getting to my house from my own driveway (much less than the dreaded 100 feet) because there was nothing to hold on to between my car and my house and I didn’t think I’d make it. I’m very lucky that I have people in my life who come running when I call for emergency help. Who are willing to hug me for a while as I sit in my kitchen and sob, like a crazy person, not because my father was gone but because I couldn’t even not think about MS long enough to realize that my father was gone.

MS is always and will always be hanging around my neck like a fucking anchor, waiting to drag me down to the bottom where I probably won’t be able to get back up once I’m there. Even when everyone tells me it will get better! Stay positive! It won’t be like this forever…I hear the little voice inside of my head saying, “Um…but what if it is? What if it just keeps getting worse?” I see that happening out there too, folks, and this isn’t looking good from where I’m sitting (un-showered) trying to blend into the scenery so nobody notices. What if this is as good as it gets?

The next morning after the viewing, my mother had already texted me before I woke up around 9AM. Mass was at 11AM, the latest our church would allow for a Saturday funeral, and my mother texted that she wanted to talk to me and please call immediately when I woke up. I knew what was coming. She wanted me to know that she didn’t want me to go to the funeral. She said, “You’ve already done what you could do for Daddy, Bethie, and you can’t do any more. That was too much for you last night and nobody would judge you for not coming least of all me. Please go back to bed. Rest. Come to lunch later if you’re feeling up to it, but get your rest now.”

I try to do the right thing, generally speaking. I knew it was going to stress her out if she saw me struggling to walk into the church. I told her I’d gotten a ton of sleep the night before (I didn’t…thanks Provigil) and I was feeling much better. I told her I couldn’t bear to not attend my own father’s funeral. I asked her if she would be OK if I came because I really wanted to go. I didn’t tell her this part though. I didn’t tell her how fucking sick and tired I am of always being someone to worry about! I’m tired of wanting to help, but adding to the stress of others because they clearly know I can’t help (anymore). I’m the help-ee not the help-er and I fucking hate it. Also, if I ever used that kind of language with my mother she would beat my ass and wash my entire mouth out with soap several times, so please don’t tell her I have the language of a truck driver because it’s only getting worse the longer I have this cursed disease.

I didn’t do the right thing this time and it was selfish.

I got to the church uber early so nobody would see me walking in. I got myself into the first row of pews and sat down and tried to look calm and serene. When my family got there, we hugged, we held hands and we went through a ritual none of us are really all that into anymore but our father was a long-time singer in the church choir and would have had it no other way. We all realized at different times how much we missed hearing him on his “parts” of particular songs. We all had our own memories of Daddy singing in church. For me, it was when he sang the Ave Maria at my wedding. For my sister and brother, it was probably something completely different but our Dad loved to sing and he sang like an angel.

The bottom line is, I’m still recovering from that funeral. Something that should not be about me and how I feel, was about me and how I felt because I have this godforsaken disease that makes me needy. I cannot be a helper very often, or at all. If I was a good daughter I would have stayed home and slept more. I decided to be defiant and try anyway. I have allowed this disease to take so many things away from me. It’s been like watching tiny parts of myself erode so subtly that sometimes I don’t even realize that part is gone until weeks or even months have gone by since I last noticed it wasn’t there. I am always trying to get to know who I am now, because it just keeps changing. Little by little. I don’t even recognize myself most of the time. I couldn’t allow this stupid, infuriating disease be more important than my father’s funeral. I needed to be there.

I did my best and I made it through the mass and the after-mass lunch. Then I came home and slept for almost 24 hours. I expected that. It’s the “MS-tax” or so they call it, and I was prepared to pay it. What I wasn’t prepared for was waking up dizzy again. Or throwing up a bit more. Or being thrown back into drunk walking like I’d been doing during my relapse.

That whole scene I described above where I had to call the world’s best friend to be not only my friend but my human walking assistive device, happened the Tuesday after the funeral was over. I’d used my official “bereavement” time off and I felt the need to show my face in the office. I knew when I woke up throwing up that it was probably not the best idea. Goddammit I had showered the day before and I was clean and I would not waste a clean day at home! I drugged up, dressed myself and pushed myself out the door.

That was also NOT the right thing to do. I should have done my afternoon of telephone meetings from home instead of sitting in my office with the door closed where I wouldn’t be seeing or interacting with anyone there anyway. Ever since that Tuesday, I find myself in bed by 6:30PM at the earliest, 8PM at the latest. I’m still super shaky. It’s still too much effort to stay straight. I’m still wobbly and dizzy and sometimes I get sick too (not so much, though, I think that part might be over now). It’s not as bad as it was during peak relapse, not even close, but it’s not good. It’s like relapse-light? Is that a thing?

I’m sure it is. I’m sure this is all very typical and nothing to be alarmed about and not the way things will be forever. Or is it? The bottom line is that I can’t count on being able to fake my way through the hard things anymore. It might not always be this bad, but it will always be just bad enough to be a factor that I need to actively consider. I can never plan to go anywhere, not even to my own father’s funeral, without thinking of my MS and how I am going to deal with that on that particular day. I’m tired of myself. I’m tired of being so high maintenance and needy. I’m tired of having multiple sclerosis.

Believe me. I know. It can (and probably will) get worse. I should be grateful. I am grateful in my own ways. I make sure the Universe knows it, but sometimes? Sometimes I’m too angry to be grateful. I’m just so pissed off I could spit. It had been a few weeks of feeling this way, through my father’s final weeks, and I hated every minute of having to think about ME before I thought about HIM or my mother (or my siblings). I’m a burden before I’m officially a burden. And I’m over it.

What my mother said was true. I had done what I could reasonably do for my father before he died. Admittedly, it wasn’t much. I would pop over and see him. Chat a bit. Help him open up the Werther’s hard candies my sister brought for him. He loved those damn candies.

Even when he was struggling to talk or fighting to find the right words or struggling to breathe, when he saw me the first thing he’d say was, “How you doin’ today kid? You ok today?” He was worried about me and how I was doing knowing I had been struggling lately with my MS. And every single time he asked I lied and told him, “I’m doing OK today, Daddy. I’m doing pretty good. I’m going to be just fine.”

The Darkest Places (So Far)

In other words, when you get a diagnosis of multiple sclerosis that you weren’t expecting late-ish in life and let those words sink in, you understand viscerally that this is definitely not a good development. Things are about to change from top to bottom and every where in between. You pretty much get that from the very beginning (for me, early December 2015). You have to tell people who love you, first. Those are dark days indeed.

As you read and do some early research and find some voices you rely on for reliable information you feel yourself wanting to be hopeful, wanting all of those voices to be true. The voices of the Societies and Foundations and all the rest. This whole MS thing will be bad for a good long while, but it WILL get better. You will find your legs (bad choice of words or the perfect set of words. Depends on how you look at it). Just believe it. Hang in there. MS doesn’t have you!

The lazy writer in me wants to use the eye roll emoji in this post at this particular juncture. You get on that “MS doesn’t have me bus” and you listen to friends tell you stories about their friends (or friends of friends sister’s aunt twice removed) and she runs marathons with MS. Surely you can do that too! Chin up, buttercup. Better days are on the way.

And I do know there are better days on the way. Currently, better days are in speedy delivery mode as I choked down the most bitter giant 10 chalky tablets of prednisone ever made this evening after a command performance today with The Great Scott.

When TGS calls you and says be here at 1:40PM well…you put on your best black yoga pants/tank top combination. You have 75 identical versions of each so it’s a complex decision making process. You run your lint roller over your freshly laundered daily uniform because with four felines running around, and over, every surface of every item in my home that I’ve not left all that much in the last 6 or so weeks, you can’t be too careful. You don’t want TGS thinking you’re that cat lady (even though you are much much worse than that cat lady…he doesn’t need to know that). You pop an antivert and you get your growing behind off the couch to see the wizard.

And that is exactly what I did.

The Great One himself had two new students, Kyle and another Samir but not the same Samir from the last time. This Samir had some shiny and very voluminous black hair styled in a casual, not-over-done hipster doctor pompadour. It was really something. I’m a hair girl! I can’t help it. Kyle didn’t have a chance. I was covetous of Samir’s hair. Samir’s hair should have an Instagram account because MS’ers all over would follow him.

When Samir was doing my visual fields test and I had to stare at his fingertip and at his nose over and over again, I kept finding myself staring at his hair and he would say, “Down here, Maribeth” and I definitely blushed.

But I digress. After we went through the whole visual field song and dance again, twice, with each student, TGS talks to all of us as if we’re buddies. I think I’m officially one of them, now, based purely on the volume of times I’ve had to be in there in the last 6 months. He asked Kyle what we learn from the visual field test (the whole follow my finger, look at my nose routine). It was almost like TGS knew I was about to blurt out the answer and he look at me and silently shook his head ever so subtly, “Don’t.” (So I didn’t.)

Poor Kyle whiffed on both of his quiz questions. The other one was, “Can you tell me what other drugs beyond meclazine we sometimes use to manage vertigo caused by brain lesions Kyle?” I knew! I’ve been a vertigo researching fool these past 6 weeks or so. I KNOW THIS ONE TOO…I got the look again. I kept my mouth shut, again.

TGS is not pleased that his students appear to be dullards on this subject. Kyle actually stuttered. Poor Kyle.

“Sometimes we use benzos for this reason and we’re going to try that here to help Maribeth out. Also, Maribeth, this drug may kill two birds with one stone because I’m putting you on another course of high dose steroids starting today,” deadpanned The Most Great of all Scotts.

NOOOOOOoooooooooooooooOOOOOOOoooooooo!

“Ugh.” I actually said this. “Isn’t there any other option? I mean MORE steroids? I’m kind of tired of the steroid effect TGS. I just am. I know that makes me a shallow asshole but there has to be another option.”

“Well, there’s plasma replacement blah-blahtity-blah but that is an in-patient experience, is not likely to work and is really a terrible idea so we can probably agree not to go there, can’t we? You have an aggressive disease. A lot more aggressive than we thought. You like being aggressive in treatment, right? We need to give you a chance. This should help you over this hump until your next Ocrevus infusion in early November. I’m still hopeful this drug is going to be right for you, Maribeth. But you do have me re-thinking the two month flush for patients like you. I may be changing my mind on the necessity of things getting this bad before they get better.”

He has a point. I’m nothing if not aggressive.

I do the walking tests. He continues to be concerned that I am back to pre-Tysabri levels of impairment (old symptoms have come back with a vengeance). Couple that with the vertigo that just won’t quit and he’s pretty sure I can cancel my appointment with the Hearing & Balance Center. (I’m kind of bummed. I was planning to go in costume since it’s kind of close to Halloween. I was going to dress up as a crazy old woman with a broken brain who’s lost her damn mind.) So, no Halloween fun for BethyBright. Boo.

I look down. I know I am beaten. He’s not called The Great Scott for nothing. I’ll take the fucking steroids.

Here’s the thing. I know some of you get this because you have been there. Hell. You might be there right now. You know what I mean. It’s a period of time so bad that weird shit starts to happen to you inside of your broken brain. You have thoughts that people like you just don’t usually have. You think to yourself, as you consider these random scary thoughts, “Huh. I don’t normally think things like this.” That’s another concerning relapse-associated “symptom” that the docs don’t talk much about.

You find yourself mildly afraid to leave the house. The outside world starts to represent potential injury and/or embarrassment or both, so you find yourself not wanting to go out there. At all. Ever. But staying in here? That’s another story entirely.

Staying in here is where it’s relatively safe (at least you can puke in private?). But staying in here sends a girl down some dark rabbit holes…

  • What did I do to deserve this? What am I being punished for? (I have some ideas, but I thought I was over all of that. Guess I’m not.)
  • Why do I live in this house that means I need help to do the most basic stuff? Why do I deserve to live in this happy place with so much freaking STUFF? I should give away all of this cursed stuff. We’re all under the same evil eye, my stuff and me. It should go, too. It’s cursed. I am cursed. We should all GO.
  • Why do I have so many damn cats? Why do they need so so much? I should never have been optimistic enough to get all of these needy, bitchy creatures. I should have known it would all go to shit! It usually does. Literally. Then I’ll need even MORE help to carry that shit out of the damn cursed house.
  • Why would anyone want to talk to me now? This utter nightmare is the ONLY thing I ever think about, let alone talk about. When I talk about it to my visitors, those kind enough to come to me for human contact, I find myself on my own damn nerves. There just isn’t a way to sugar coat any of this. I know if the tables were turned I’d leave your house feeling sadder than sad because we used to have so many other, more pleasant things to talk about. Now I have this. Only. This.
  • I’m alone. I rely on the graciousness of others. This is my reality. I am blessed (#blessed – few things irritate me more than #blessed I’m not entirely sure why but every time I see it, it sounds ironic to me). I have so many friends, family and buddies who help me in so many ways because they love me. Hell. They even help me by just giving me tiny little happy surprises! Like the card last week that I needed at just the right moment. But really how long can any of this last? People WILL get sick of me not getting better. It’s just inevitable. I’m so needy that there isn’t any realistic number of humans on the planet to fulfill all of my damn needs. It’s just not physically possible. I mean I am with me all of the time and I’m sick of me not getting better. What happens when I get worse? Or when I get MUCH worse…I can’t really think about that for very long or I go to darker places still.
  • Are there darker places than this? Oh I know there are. I have a feeling I might visit them before this is all over

I may have seriously entertained not taking the damn steroids. I definitely considered it, I may have come close to skipping my stop at the pharmacy. I’m so tired of all of the stupid side effects of fucking steroids! Why do I have to have a disease that makes me LOOK bad too. Why couldn’t I get a disease that makes you look scarily thin? Trust me. I know. These are idiotic, stupid pointedly indulgent obnoxious thoughts. I thought these idiotic thoughts the whole way home from seeing TGS.

Then I thought about how I had a virtual anxiety attack over leaving my house today. I have never had a true anxiety problem in my life. Other problems, sure, but not anxiety. And how doing basic chores has me so exhausted that I think my entire life is going to feel this way. For all time. Forever and ever until I just give up and stop, stop doing all the things let it all go to shit and just sleep. Because I am alone I am and will always be…This, my therapy loving friends is what my precious Cheryl would call “catastrophic thinking.”

Then it hit me. Out of the blue in full-on pedal to the medal on my way to Catastrophy USA, I finally got my head straight. Like BOOM.

The disease is talking right now. Not me. The disease is talking stupid because it wants to win. Its only reason to exist is to ruin me. It wants me to be depressed, full of newfound anxiety, falling apart at the seams. It wants me to hate on this body it wants to feed on because it makes the whole process so much easier, more easily digestible. Like tenderizing meat before you cook it. Those are NOT my thoughts.

When I feel better, my thoughts will be my thoughts again.

I took the damn first dose of bitter pills. They won’t be my last. I need to accept this and I have. I’ll eat sensibly and try not to go on an ice cream binge (prednisone needs no assistance in achieving maximum bloat) but I will have a couple of spoonfuls every now and then if it will give me some much needed joy.

It gets really dark in this world. Scary thoughts can kick you right in the gut and have you questioning your sanity. Your fundamental worth. Then you get to that point where you start to realize that maybe a nice gentle marinade would be ever so much more appealing on the meat than all of that beating it with a spiky metal mallet has been.

(I know at least one of my blog followers read that last paragraph and giggled thinking, “She said beat the meat! Hee Hee.” You know who you are!)

I’m going to marinade in some prednisone and some calming benzos and let this thing ride. Cliches are a thing because most of a time, they have more than a little nugget of truth inside.

And you know when they say it’s always the darkest.

I cut my hair (and I didn’t post a pic)

This landed on my doorstep, along with some amazing fall treats. Much like pennies from heaven in the middle of a very bad spell.

This might seem like no big deal to you. If you know me, you’re probably thinking, “Well thank god because who gives crap about your hair? You’re way too obsessed with your damn hair.” And you would be right.

The thing is, I’ve taken no less than 300 different selfies of my new non-blonde hair from 30 different angles and in several different locations and lighting situations and I couldn’t bring myself to post a single one.

There isn’t a filter known to the Internets that could get me to feel differently about any of those (to me) hideous photos. I should note here that it’s not because I don’t love my new haircut! I do love my new, shorter, much darker ‘do. I haven’t not had color on my hair since I was probably 19 years old. I’m kind of shocked by how dark my “real” hair is. There’s still  little blonde left on the ends. To get rid of all of it, I’d have to buzz my entire head and I couldn’t bring myself to do that. But as of my next haircut all of the blonde will be completely gone. I kind of can’t wait. Then maybe I’ll do it all over again. Who knows?

I do love my new hair cut but I pretty much loathe the rest and I couldn’t bring myself to post a single shot.

I swear to you, this isn’t one of those posts where I am asking, nay, practically begging someone out there to reassure me that I am truly not a monster; that my eyes are broken; or that my perceptions don’t mirror reality, so give it up already Beth. This is decidedly not one of those posts. You might say those things, but you should know that there is no amount of protestations that will make me see myself any differently right now, or maybe ever.

I know it’s in my head. It’s been in my head for nearly ALL of my very impressive 50 years of life. It’s the barometer that I’ve always cared about, the only fact of my existence that gave me any reassurance that things would always be ok for me somehow because at least I was pretty. I’d always have that (even if I couldn’t actually see it with my own eyes). It didn’t matter. I’d have to take your word for it but that was almost good enough. I used to take and post all of those selfies because for that instant in time, I could see it. That thing you always told me in the comment section!

Being pretty was critical to me. It was, sometimes in my own twisted psyche, the only thing that mattered – why people wanted to hire me, like me, date me, marry me, reward me, give me chances…all of it. But I couldn’t see it for myself. I needed other people to tell me, show me, make me believe it somehow.

I know! This is pure insanity hence the reason I’ve been in therapy for fifteen years and the reason why at 50 years old I still have such a twisted view of the world. Pretty never mattered as much as I thought it did. It never mattered to anyone else as much as it mattered to me. I clung to it after every heart break and disappointment, every bump in every road. The first thing I needed to know after being dumped by a boyfriend was “Is she prettier than me?” I mean, good lord. That’s messed up.

I’ve read a few articles this week about whether or not MS ruined a person’s marriage. I get that and I can understand how hard having MS would be in a marriage or partnership. As you all know, I’ve often said out loud and with great vigor that the only thing that might make this whole late-in-life diagnosis of MS worse for me would be to have to go through all of this mess along side of and in front of another human. It’s too hard to imagine trying to be a good partner to another person when I’m so openly struggling to live on my own. I feel terrible for people who’s MS has so clearly messed up something so critical in most people’s lives. This disease takes so much.

I’m letting it ruin my relationship with the one who matters most. Myself. I can barely look at myself. I struggle every time I have to leave the house. I struggle even more when I’m forced to try and make any effort at all. Like on the days I actually make it into the office. I put makeup on and choose an outfit that works with my very sensible shoe choices – and pack up my backpack and walk out the door like it was any other day. But it has yet to feel even remotely close to any other day. I’ve begun to wonder if this is going to happen, and potentially get worse, after future relapses. I being to wonder if I can actually survive something like that.

There’s nothing attractive about pulling your bright green plastic puke bag from your backpack when the random wave of dizziness and nausea take over. Nothing can make you feel pretty after that.

When I got home from my pedicure on Saturday afternoon, the note above was in a bag left at my front door, along with a plant and some fall treats. The card fell out of the handwritten note when I opened it. I picked it up, read it, and promptly burst into tears. I never burst into tears. Well, almost never but it’s gotten a lot more prevalent since my diagnosis on December 15 of 2015 that I randomly burst into tears. But this time the tears just sprang out of my eyes, I didn’t fight them or even attempt to stop them, not that I could have if I’d even tried.

This face, this body, all distorted by high dose steroids, has become my enemy. It makes me fall down and not be able to get up. It makes me want to sleep 24 hours a day. It makes me hurt and spasm and tremor without warning. It makes me want to never leave the house when it’s hot outside and never actually leave the house for days on end this last goddamned hot, humid summer.

This face looks so much older than it ever has. I used to take great pride when people would tell me how I didn’t look anything like my real age. As if I had any control over the DNA my parents gave me so graciously! It made me proud.

Nobody has said that to me in a while now. If they did, I’d probably laugh right out loud. I might not look 50 years old but I feel like I’m 550 years old and nobody can tell me they can’t see that written all over my face. I’ve got steroid gut. I’ve got gray hair and I don’t even care enough to cover it up. I’ve begun to hate putting on makeup not just because I know I’ll have to have the energy to take it all off again at the end of the day – but because I don’t think it’s fun anymore. It’s no fun at all putting makeup on this face. In fact, it just pisses me off.

I miss myself so much! I haven’t seen myself in such a long time, that when I read this card yesterday, it was the first time it dawned on me that maybe it shouldn’t matter to me as much as it did. I want to be a bigger, better person (not just in my clothing sizes) where none of this matters to me. I sat in Cheryl’s office last time, I actually made it there to her office before I threw up, and I cried for a solid hour. WHY could I still care about all of this stupid shit when I have actual REAL things to worry about now? Why can’t I get over this once and for all? Why does it matter so goddamn much? No matter how much I resist it, how many times I’ve written about it both here and in my journal where things get a whole lot uglier…it’s always there. Like an irritating itch you can’t quite scratch for over 50 years.

OK. So here’s the best of the worst set of selfies I’ve ever taken since the advent of the selfie about 10 years ago. I do love my new hair. I do love seeing what color nature intended me to be. But I’d be a liar if i didn’t admit that I’m including it here, way down here at the bottom of my post, because then it won’t haunt me every time I look at my blog comments.

At least it’s finally convertible weather? For me anyway.

Effing MS. It ruins so many things. I need to figure out a way to not let it ruin the me I have left in me. It was never about the way I looked. I wish I had known that earlier.

Relapse: the Post Script

The thing is it doesn’t really matter how fed up I am. When you go through something like this last relapse, you tell yourself that it’s a minor set back. It’s just a hiccup. It can’t last forever! But then 6 weeks go by and you’re still feeling it and you start to think maybe it will indeed last forever.

There’s a lot of waiting involved when one has multiple sclerosis, particularly if one is young in their MS. Like me. I’m about 21 MS months old. I’m practically a MS baby but I’ve had my share of waiting in those 21 months.

First I waited to get approved for Tysabri. Then I got approved and I was waiting for the 6th or 7th infusion when I was told I’d feel better…and didn’t. Then I went through the 2-month flush before starting ocrevus, two months of feeling like such utter excrement, I could barely get myself out of bed. But once again, I got through it by telling myself that this amazing new drug would be the one that gets me back on the road to feeling more like myself again, but the thing is, it didn’t. I had about a month of feeling suddenly energetic and it felt awesome. Then, out of nowhere, I had a relapse two and a half months after my first Ocrevus infusion. I landed in the hospital for four days. Then I was waiting again, entirely focused on when I could get out and get back home so I could feel better. Then I got home, finally. But the feeling better part didn’t really happen.

I mean, it did. It did get better but when “better” just means occasionally throwing up as opposed to every time I ingested food and feeling like I’m drunk only 75% of the time versus 90% of the time but you could argue (and you would be correct) that I am better than I was. But better, better? Nah.

I’m back to waiting for the next great hope. That would be November. I find myself looking forward to November when I get my second full dose of Ocrevus hoping that maybe that will be the magical dose that helps me feel better once more…But the little voice in the back of my brain whispers, “Then again it might not…”

This disease requires a long game that I have never developed. To have this disease you have to be OK with your entire life being turned upside down over and over again, with more promises of “better” that come and go without the relief you were told would be coming.

So you focus on the next milepost. The next thing that might get your “overly active” disease under control for the first time since this whole crazy ride started so you can maybe not get back to “normal” (normal is probably never to be again) but maybe establish some new normal where this disease doesn’t affect every part of my every breath of my every second of every day. I have the experienced MS-er friends. They, who are much older in MS years than I, assure me that this is coming. I believe them! But sometimes it just makes me feel stupid for believing in fairy tales.

I did make it back to work last week. I made it to the office two days in a row. It felt awesome to finally leave my house but I’d be a liar if I didn’t admit that it was hard as hell. I practically had to force myself out the front door. I don’t look like myself. I forgot how to wear real clothes. Putting on makeup (which I usually enjoy) felt like putting on a disguise, someone impersonating the old me, not me at all.

I was so very happy to be out there, I really was, but I was also scared to death. What if I’d used all of my good hours in those days getting myself out of the house and into the office? What if I ran out of good hours before I’d make it home again? What if I had to use one of my handy portable puke bags but this time not in the privacy of my own home but in public among people who look to me for leadership? I’m supposed to be inspiring, the inspiring leader of the office! I was afraid for every minute of every hour I was outside of my home. Who have I become?

I’m back home now for a week of rest taking a long-ago scheduled week of vacation because I think I obviously need more rest. Ya know what gets tiring after a while? So…Much…Rest. Rest is wearing me out. Resting a faulty body that never feels rested no matter how many hours I’ve been able to stay unconscious, though I know it’s the best and only thing I can do, it feels anything but restful.

Nobody is pressuring me. Everyone, from my peers to my team to my colleagues and bosses is being as supporting as you would expect them to be in a situation like this. The one person who isn’t cooperating is probably me. I have higher expectations for myself. I’ve not allowed myself to believe that THIS life is my new life. This is just one of those waiting periods, another thing that I need to deal with, wait out or get beyond. I tell myself that I love my quieter, slower life but much like anything else I’ve had imposed on me, I might like it but I don’t really want it. I only like being quiet and slow when I’m doing it on my own terms. These are decidedly not my own terms. I’m not sure who’s terms I’m working with but MS and its terms are not acceptable to me.

I struggle with the whole phases of grief thing. I remember it well from when I went through this after my husband died almost 20 years ago. It used to frustrate the hell out of me to realize, as I was going through it, that those phases didn’t happen in a nice, planned, consecutive order. They happen all at once. All at the same time, sometimes completely out of order. When you think it’s over, those phases start happening again all willy nilly. Once you’ve experienced grief, you know that nothing about grief is at all tidy. You cannot control it. You just have to let it do its thing and wait.

People will tell you that you will be able to see the other side when you’re grieving but you really can’t. When it has moved on and you have a new life, it’s almost like a surprise. When did that happen? You really can’t put your finger on it. Once it happens, you wonder how you never noticed it as it took over. The feeling of seeing grief in your rear view mirror is more shocking than that. It’s like an old childhood friend who suddenly moves away. You’re sad because you’ve spent so much time together that it started to feel comfortable, but you guys were never really very good friends. You know you won’t miss your friend, grief, not as much as you thought you would, but then again, it will never really be gone. You will always feel it. Lingering on the edges of your life that is mostly happy it will be back there to remind you that it could all go away. Poof. Just like it did once before.

There is a silver lining to all of this. It’s a pretty obvious one, really. The silver lining is that I’ve done this before. I can do it again. I thought I’d never get any sort of normal life back after the one I had went POOF, but I did. I actually made a life that I really started to love. I just have to do it again!

We all have these transitions that we go through all through our lives where we are suddenly forced to acknowledge that having plans, being focused on anything but the moments, is really kind of a lie. “Nothing gold can stay.” Ponyboy Curtis taught me this when I was a pre-teen.* It might not be gold, anymore, but you learn to get great joy from silver and bronze. Sometimes you even get some platinum here and there. My slow, strange life might change or it might not. It might just one day feel like it should. Real. Until then, there’s always November.

Also, it’s not hot anymore. I can’t even believe I’m saying this but I almost turned my furnace on tonight! I thought better of it. But I almost did. It’s gorgeous sleeping weather. I better get to it.

 

  • “Nothing gold can stay” is an iconic line from one of my favorite childhood books, The Outsiders by S.E. Hinton who was referring to a poem by Robert Frost in 1923:

Nature’s first green is gold,
Her hardest hue to hold.
Her early leaf’s a flower;
But only so an hour.
Then leaf subsides to leaf,
So Eden sank to grief,
So dawn goes down to day
Nothing gold can stay.

-Robert Frost

 

 

The spaces in between might be the hardest

The bright…and the dark. I guess this post is mostly the latter.

Nah. That’s probably somewhat of an overstatement but it keeps occurring to me, in the last week or so, as I wait and rest and do everything I am told I should be doing to help myself get back to non-nauseous living that the spaces in between are the things we never talk about. I’ve avoided writing this post all weekend because I don’t find it very interesting reading, let alone writing.

When you have a flare or are in the thick of a relapse there’s something inherently interesting about that, even if you’re the patient. There are problems to solve. A thing that must be dealt with. Procedures to consider. Drugs to take. Hospitals to escape from. Information to share. All very interesting things to write about should you happen to be a blogger who writes about your life with multiple sclerosis. But once all of that excitement is over, there’s the rest.

The in between stuff is what really sucks because it’s really a whole lot of minutes that turn into hours that turn into weeks and then suddenly it’s been a month since the whole drama started that are full of a whole lot of nothing at all. All of the rest.

You fill the moments with email and conference calls and Law & Order reruns running in the background and talking to friends and being occasionally visited by co-workers, friends and family. You walk around your house seeing corners and details you never knew were there. But you don’t walk too much because you have to conserve your energy for exciting things like cat feeding and litter scooping before your energy runs out. You can’t quit doing those things because you are already so very weak! You need your “exercise” even if it’s just a few flights of steps in a day. You can’t give up your special work outs!

The days look alike because you’re wearing the same clothes (sometimes clean versions, sometimes not because laundry is suddenly like an Olympic sport) and you’re looking at the same face without makeup and without clean hair. The days go by and the nights get longer because even doing the very small things you are able to do leaves you physically exhausted and likely to be happily in bed before the sun goes down.

You read to keep yourself from thinking. So, you read a lot. You read so much you’re on book number 23 of 2017 and there’s no end in sight. You might break your personal annual book record. When you get tired of reading, you write. You write to help get bad thoughts out of your head and into the journal where they can fester without directly threatening your sanity. You journal about the things you could never write about on your blog. People would worry. You can’t have people worrying.

You are always waiting. The days and nights are chock full ‘o waiting.

You go to bed each night wishing and asking the universe to make tomorrow the day when you finally wake up feeling normal again. You get pissed off after you take a short trip outside and realize that the very most minimum of moving about in the outside world leaves you dizzy and eventually heaving into a portable puke bag that you stole from the hospital (I’m very slick like that). Every morning offers new hope of possible normalcy that is usually dashed by around 3PM when you frantically rinse out the stolen puke bag because you never really believed you would need so many of those damn things so you only stole a few.

Other moments are full of experimenting with medicines because in all of your alone time you’ve convinced yourself that you can manage this entire stupid situation if only you could figure out the right cocktail and timing for said cocktail. The drugs that help with the dizziness don’t help enough to make up for the horrible tiredness that they cause. The nausea drug added to that makes for an instant torpor that makes leaving the house out of the question. You aren’t sick when you take the drugs, but you are also pretty much a zombie and you need to function well enough to have all of those conference calls.

You begin to feel like a prisoner in your home. You convince yourself that mind over matter works with brain diseases and then you find out violently that you are terribly wrong. When you move around too much, you get nauseous. When you get nauseous you get sick. Repeat.

Yesterday I drove. My brother was my co-pilot for safety’s sake. I did OK. I walked around quite a bit. I didn’t feel dizzy. It was my experiment to see how I might get through a day should I decide to finally give in and make it into my office this week. I was initially jubilant because I felt like it was a good experiment. I got a little bit hopeful that I had finally come to be outside world friendly! I might be able to leave the house. In clothing that isn’t clothing I could and do sleep in.

Then around 4PM the dizzies hit. I was feeling very worn out. Food wasn’t even an option because my stomach was roiling. I desperately stumbled around the house looking for the clean, recently rinsed out puke bag and gagged into it for what felt like the millionth time in the last three weeks. Or has it been four weeks already? I think it’s been four weeks.

Going to my office involves a few really minor actions. Minor if you are a normal. I have to get dressed. I have to pack up my bag and get my computer in my backpack and get from my house to the car, from my car to my office and back again at the end of the day.

The thing is, before any of that happens I will have done two set of stairs down and two sets of stairs back up to my dressing room after doing my cat chores. So I’m already going to be worn out. Crazy, right? But even knowing that, I’m almost sure I could make it to my car once dressed without using one of my special portable puke bags.

But what happens once I get there? I’d have to walk from my car and into the office which involves actually going outside, carrying that backpack that holds my computer and my giant bottle of water, and probably using Stan, my new cane, to help make sure I actually make it from the parking garage to the building just across the street.

I’m not sure how long it would be that I was actually IN the office before I’d be desperately heaving into a portable bag but this time in public with people all around me. I mean, randomly pulling out a bright green plastic bag and hurling your guts into it at random intervals is often considered anti-social behavior in polite company.  Many of my closest work colleagues are traveling next week (to meetings I should be traveling to along with them but of course that’s impossible because I can barely drive or walk let alone fly) so I’d be forced to impose myself on people who maybe don’t know me as well or who I might not feel as comfortable with asking to hold my puke bag for me, ya know?

It’s also still hot here in Pittsburgh. Above 80 degrees hot and that, on top of all of the little things that are involved with getting me from point A to point B is the perfect combination of factors to ensure that this imagined scenario will play out exactly as I’ve described here. I know the weather for the next week promises some relief from the heat and humidity so maybe I could plan my week around that to give myself more of a chance of success. I am an obsessive user of any and all weather apps that help me plan out days when I am less likely to feel like shit on a shingle. This is also completely normal to me. This obsessive weather watching.

Guess what? All of this thinking and planning and strategizing has me exhausted again. It’s only 4:20PM and way too early for getting back into the bed that I just dragged myself out of at 12:30PM.

There will be more waiting. More days of wearing lounge wear and sporting bed head as I take conference calls and respond to email. More days of being annoyed by my cats who I really love a lot but whom I’m not accustomed to spending quite this much time among. They are needy little jerks. Sometimes I forget I love them. Then I remember and I feel guilty.

This is all to say that when you have so much time to just wait and think and do nothing much at all you get a little overwhelmed with the idea of making your life even a little bit more complicated by trying to accomplish any of it in the outside world.

My new plan is to wait until Wednesday to head to the office. It’s cleaning lady day. I need to vacate the premises. It’s supposed to be cooler and not as humid by Wednesday. Another good sign. Maybe a few more days of resting and sleeping and waiting and nothingness will leave me feeling almost human by Wednesday! I can hope. I never stop hoping.

The image above is a self portrait I did probably ten years ago before all of this insanity started. I used to paint with oils. I used to love painting but I can’t really do that anymore because I don’t have a studio in the house where I can shut out the kitties from chemicals that could harm them. I used to paint on my front porch which involved carrying my easel, my canvas and my paints outside and then back in again once I was done for the day. I keep my painting supplies in the basement out of kitty reach. More steps. I haven’t painted anything in a really long time probably all because of those steps and that carrying and my literal lack of energy for anything other than trying to live the most basic kind of life.

The moments in between are when you start resenting the hell out of things like that. That’s why you don’t like writing about them. The moments in between are the things you would really like to forget but you cannot because there are so damn many of them!

I’m told it won’t always be like this. I believe that, I really do. But it doesn’t make you any less pissed off in those many moments in between. You’re only human and so am I.

Don’t call it a comeback

I got cocky again.

I know. Shocker but hear me out. I had a decent day yesterday. I got through the whole 8 or so hours of my work day without taking antivert. I participated in a day long training session that I actually enjoyed and felt included in even though I was on the telephone and all of my colleagues were together in a room. I thought it would suck and it didn't. I had a good day.

I went to bed super early after reading a few more chapters of my super scary book (another distraction technique). I had cranked the thermostat down to my usual nighttime temperature of 60 degrees and I slept like a damn baby.

But I'd gone to bed after putting the chain on the door – which was dumb because I should have remembered that Kathy would be coming in the morning around 5am and she'd not be able to get in the house. Sure enough my phone ringing at 5am alerted me to the problem. I stumbled down the steps to unlock the door and then stumbled right back upstairs to go back to precious sleep. I knew I was going to try day two without antivert and I needed the rest.

But when my feet hit the floor once my eyes opened for the second time today, I knew I wasn't all together steady. I still decided not to take the antivert. I needed to try. I had plans later that afternoon to go pick up some groceries I had ordered online. My mom insisted on coming with me – just to be sure I was ok. All I had to do was drive a few blocks to the grocery store, call the number and wait for the guy to come out and put the groceries in my trunk. Easy peasy!

As soon as I stepped outside I knew it probably wasn't such a good idea. It was muggy and humid today. The air felt thick. As soon as it hit my skin I shifted into super slow mo. I opened my car door, the car that hasn't been driven in over two weeks, and went to sit down when the wave of dizziness came over me.

"Do you want me to drive?" Asked my mom.
"No, I want to see if I can. It's literally like two blocks and we'll be going slow," I said.

She didn't love the idea but we were already in the car so off we went. It took longer than usual for the air to cool off the car that had been sitting in my driveway in the heat for two weeks. I felt like I was suffocating. But we drove super slow. Every time I turned my head to look at traffic or see if I could turn my stomach did a little flip. We got to the grocery store without incident. I drove through McDonalds so my mom could get her favorite treat of late (iced coffee sugar free vanilla) and I got a vanilla ice cream cone. Then we drove trough the ATM so I'd be sure to have some cash if I was gonna be home and taking deliveries and paying off helpers and such.

By the time we got home, I declared myself a failure. The dizzies were back. I felt like I could lie on the floor and sleep for a year. I had another meeting to get through today and a tentative plan to go in the office tomorrow for a quick company meeting I'd planned earlier in the week when I was feeling optimistic. But after my short foray into the outside world, I quickly realized that driving more than a couple of blocks would be idiotic. I'd be doing that meeting by phone. Goddammit.

I've read all the articles and blogs and talked to all the smart friends and experienced MS'ers about how hard it is to come back from any setback when you have this disease.

I knew, intellectually speaking, that this would be the case after my short hospitalization. But in the back of my broken brain, I always seem to think I'm going to be special. It might be hard for other people, I'd think, but not me. I'm pretty stubborn. I can do things. Lots of things. MS is different for everyone! I could be an exception. I assumed I would be an exception.

I'm an idiot. As it turns out, the only thing about me that is exceptional as it relates to my multiple sclerosis is my incredible ability to deny what's happening right in front of my own two eyes. I didn't really believe I'd be going to the hospital in an ambulance (an ambulance for chrissakes!) until we were pulling into the ER ambulance bay and even then I was still in denial. Every night that I was in the hospital, I'd convince myself that tomorrow I HAD to be going home.

The depths of my denial are really difficult to grasp. I can be laying here in bed at 8:30pm, feeling my limbs give out and my back begin to ache and my head slightly spinning and still wonder if maybe I could be a-ok tomorrow and make it into the office for my little meeting anyway…

…yeh. Not gonna happen. I'm not outside-world-compatible just yet. I'm hoping that after (another) weekend of extreme resting and generally doing a whole lotta nothing, maybe I'll be feeling outside world ready by next week? Maybe?

I guess it's firmly in the wait and see camp right now.

Something knocks you down, in this case quite literally, then the ripples emanate outward into your life like rings in a placid lake hit by raindrops. They get bigger and bigger until they finally disappear and the lake is still, like a mirror, reflecting your own image back at you. The question is, what image is it that you finally see once the ripples stop?

Well. That, too, involves a whole lot of wait and see.

I've mentioned to a few people I've been in telephone meetings with this week how much I suck at patience. I'm not so good at the waiting and seeing game. I'm more the make it happen and change it if you don't like it kinda girl. Maybe that's why I'm good at my job? But this is one very clear example of a situation where taking too much action can put you right back where you started…and we've already established how I will not under any circumstances be going back to the hospital any time soon if I can help it.

Even if it kills me, I need to find my inner zen and wait this shit out. Then I need to take baby steps, literally, before I can really walk. Then I will start PT and little by little I will get stronger – but it will be little by little. That's just how this stuff works.

Sometimes I think this is happening to me because the universe is trying to teach me an important lesson. Slow down. Stop trying so goddamn hard. Just be. Just breathe. I wonder how dense I must be for the universe to think she needs to give me a freaking chronic illness with which to teach me these important lessons. Couldn't the universe have just made me like yoga?

Nah. I'm a "learn the hard way" kind of girl. I will be dealing with these particular ripples for as long as they feel like sticking around and I will just have to accept that.

On the upside…I can read a bit easier and also watch television. I bought some new sticky tread things for my death trap of a shower hopefully making getting clean not so much of a feat. I also have mini-hair and eyebrow day in my kitchen tomorrow evening because my beloved friend and hair wizard knows me well enough to know I need to be cleaned up a bit in order to feel closer to normal and going to the salon right now is also pretty low on the list of things I should be doing right now.

It will all work itself out. I will be ok. I just don't know when. And that just has to be ok.

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.