I’ve been holding it together. Mostly. The two month flush is for real, though, and I’m back to that place where I feel like my body is just out of fuel.
I’m off work today. I scheduled a bunch of random vacation days, now known as days that look like most other days but now with less guilt, so I planned to take it easy. I was going to allow myself a bed day. After the busy pace of the last week, I needed it. My mom, though, needed to get out of her house so I rallied to meet her for lunch. And by “rallied” I mean I got out of the bed, put on yoga pants and brushed my teeth. I didn’t even look in the mirror. My bedhead today is epic.
We had a lovely little lunch. Nothing too taxing. My mom saw me struggling to get across the parking lot to the restaurant and she said, “Shake it out. Get some movement in those bones. That’s what I keep telling your dad.” I smiled at her. If only she knew! There was a time that shaking it out and getting moving really did help. That time seems to have passed. Now, literally nothing helps.
Late last week, my new primary care doctor was talking me through my medical history. What a walk down memory lane that was. I remember her saying to me, “So you don’t feel rested even after a good 8 or 9 hours of sleep?” I kind of laughed at that thought. “I never feel rested. I pretty much never feel rested at all. Nothing helps.”
Exercise might help, everyone says it does. How do you do that, though? When do you do that? I sincerely can’t figure out how that would work. I can barely drag myself up and down the steps to do the laundry. How funny…I’m out of yoga pants and pajamas so I am currently doing laundry. Very slowly. I make it down the steps long enough to sort, toss a load in and rest. I make it up the steps to rest long enough for that load to get clean before I have to climb down and back up again another time. Parsing out tiny pieces of the day between times when my body tells me it has to stop for awhile before parsing out the next tiny window of activity.
I tell myself to stop it. I have to get through this, this super shitty very long several weeks where my body has hit “E” and is literally trying to operate without fuel. It’s almost over. It’s only another week. A little over 7 days, actually, where I can give myself a pass and just try to keep up with what life I can until the day comes when I get juiced with something new. I have no idea what the new goo will do or how I will feel once it travels its way through my bloodstream, but I have to believe it will help me feel better than this. I’m kind of over this, to be really honest.
I was told to prepare for a long day at the infusion center on May 8. I have my ride lined up. I’m all ready in every way possible. Now I just have to look these next ten days or so in the face and keep moving from point A to point B even if I have to rest a really long time in between.
Get your bones moving, she said. Shake it off. Damn. I wish it was really that simple. Ten days seems like a lifetime right now. An unending span of tiny tasks and small sets of stairs that will feel like running marathons and climbing mountains to me. Ten more days of opening my eyes in the morning and immediately wishing I could close them again for at least another 8 hours (or maybe another day or maybe another week). Ten more days of stumbling around like a drunk woman who hasn’t had a drink in months.
I am running on fumes people. FUMES. Each day further away I get from my last Tysabri infusion gets a little worse. There are a few less hours in every single day that I can function even remotely like a human person.
On the upside, I received the news today of my date for my FIRST Ocrevus infusion. It’s gonna take 7 hours. But it’s on MAY 8 and I cannot wait!
I’ve been feeling particularly shitty lately, as I think most of you probably know. It’s meant taking everything pretty slow, resting a whole lot and pinning a lot of hope on an elusive drug that I was only recently approved to take. But not quite yet. I still have at least two weeks left in my two month flush post-Tysabri.
The short story is that I believe this shitty feeling that has come down on my head like a dull, aching torpor is temporary. I mean, what else do you tell yourself when you feel like the wheels are coming off of your life and you don’t know what’s coming next?
It will be fine. This is temporary. It will get better. This is the two month flush and you knew it was gonna suck.
Today got the best of me, though. Most of you know, I live very happily alone. You might also know how much I love my home, the first place I’ve ever lived alone that I bought and had restored for myself to my very particular specifications after my husband died in 1997. You could say this house, my home, has become the embodiment of my safe place. The place I can go when things are hard and feel instantly better. The place where I can hide from the world and feel happy, content and protected. The place where I feel safe.
But lately? Lately, my home has become a source of stress for me. It starts with the fact that my MS presents itself mainly with crushing fatigue and mobility issues (walking problems, muscle weakness). Have I mentioned that fatigue? Right. I guess I did. So I’ve been making little changes to help keep my sanctuary an actual sanctuary and not a source of constant stress. Living alone, taking care of an old house, it’s inherently taxing. So I did some obvious things to make it less taxing.
I got rid of a lot of extra stuff. This stuff not only bore down on me physically due to it’s constant need to be moved about, organized and dealt with in some manner but it also bore down on me emotionally. It’s not a lot of fun to look at clothes you can no longer wear because they take too much effort to don, or require high heels for length reasons. It makes you feel bad, like you’re compromising the things that make you, you. The solution seemed pretty obvious. I got rid of a lot of stuff! Bye bye extra stuff. You can haunt me no longer. And it felt good.
I tried to eliminate things that required other people to help me, such as, instead of annually begging people to come over and help me with window air conditioning units each summer, I installed central air a couple of years ago. Easy! Now I can just turn on a switch and cool air come outs and I can thus deal with the summer heat. How easy was that? Done. On to the next thing.
I couldn’t get into my giant jacuzzi tub so easily anymore so I had it torn out and put in a walk-in shower that is so much easier for me to use. It was such a relief not to have to vault over the side of that insanely huge tub in order to take a damn shower. Not that I take more showers now than I did before or anything, that would just be insane, but it was a source of stress so I removed it.
I have trouble keeping up with the cleaning of this house what with the four giant shedding felines who allow me to share their domain, so I had to hire someone to clean. I did this well before I had MS, don’t get it twisted I have a very clear lazy streak that is undeniable, but once my old cleaning lady dumped me because I asked her to do some more intense cleaning after my diagnosis, I had to find a new person who would be able to help me keep up with the constant hair and reality of keeping a house clean when I can barely get myself out of bed to get to work. It took awhile, but I did find someone who came highly recommended and while it costs me much more money than my old cleaning lady did – it’s worth every damn penny and boom! Another problem solved.
But for all of those things you can pay someone to do for you, there are the things you really have to do yourself. There just are. It could be because you’re impatient, or too particular (like the fact that I don’t let my cleaning lady change my sheets because I don’t like the way she does it…hmmmm I just said that) or because you think you SHOULD be able to do them.
Today I was almost beaten by a few of those things.
The weather has changed. It’s getting warmer out and the birdies are singing so it’s time to clean up the front porch and put out the pillows and chimes and things that make me happy in the spring time. I thought to myself, “I might not be able to do this by myself.” But I quickly shushed those thoughts because I did it last year and goddamit I’m tired of no porch pillows on the swing and chairs and stuff and how hard could it be? I would rest between tasks. I’d go slow. It would be just fine!
I walked back to my garage to gather my wares. I loaded the garden hose (for porch cleaning) into my wagon. Then I loaded in the bags of porch pillows I had stored in there for the winter. Then I found my porch chimes that I love to hear twinkling in the spring time when the windows are finally opened and it’s not too hot yet for the air conditioning to stay off. I wheeled all of these things to the front of the house kind of laughing to myself because, oh my god, I OWN A WAGON! And I was using it to limit my trips and I’ve officially become that old lady. With a wagon! But I digress.
It started to go bad when I put my 30 foot garden hose back on it’s holder. Thirty feet of hose is heavy. And no, I do not need 30 feet of hose but there you have it. I managed to lift it on to the hose holder attached to the side of my house. I connected it up to the nozzle. BOOM! Victorious.
Or not. I had placed the giant hose on the holder with the loose end with the nozzle on the bottom so I couldn’t get it to unwind. I had to lift if off the holder to change it. Somehow, I lifted it off and then dropped the whole damn thing on the ground and rested before I RE-wound the whole hose back on to the holder the correct way.
I sat and rested once the whole damn hose was re-wound and in it’s proper place. I turned the water spigot on and nothing happened. Oh! Right. I had to go down in the basement to turn the water on to the outside. Easy! I walked really slowly down the steps to my basement. I was pretty shaky by this time so I sat and rested down there for ten minutes before I turned the turny-thing connected to my pipe to turn the water on to the outside nozzle. It immediately begins to drip water on to the basement floor. I’m sure it will stop, I tell myself and head back outside to hose off the porch.
I get to the hose and turn the water on and promptly drop the spigot to the hose nozzle on the ground facing upward and it sprayed me directly in the face. OK. That’s comical and nobody saw, so yay me. I can do this!
My whole body is on fire by now. I wish I could explain how few steps I’ve actually taken to get all of this accomplished but those few steps are apparently much too much for me so I sit on various porch chairs and lean on railings until the porch is hosed off and I can begin placing cushions. I sit flat down on my still wet porch swing because I can’t stand up for five more minutes. I can feel my yoga pants getting wet as I sit but I don’t have it in me to stand up.
I can’t keep myself from thinking over and over again, “I did this last year! It wasn’t this hard. I did it AND I planted flowers and it looked glorious and it wasn’t this hard.” See photo below for last year’s finished product:
OK, I did plant the flowers on another day and it took me a really long time to do it while mostly seated but I did it. And it looked lovely. Having my porch look so lovely makes me happy. I wish it didn’t because as it turns out, I can’t easily do this year what I could do much easier last year. I think this means I’ve gotten worse.
I know this means I’ve gotten worse and it is starting to really eat at my broken brain.
I finished hosing off the porch, re-wound the hose, attached all of the various cushions to various chairs – and between each step I would rest or sit down and wait out the fire in my lower back and the shaking in my legs to stop because that’s just what we have to do now! We have to rest between the steps of any job and it makes everything take longer but it means we can still do things ourselves. (We also start thinking of ourselves in the plural for some reason, because with my internal monologue that is going on the entire time I’m stumbling around outside, it sincerely feels like I’m talking to someone else and not just myself. All of us are weak and stumbly by now.)
I come back in the house and decide I better go back down to the cellar and make sure that pipe isn’t still leaking. That’s when I see this:
Ok. So it’s not stopped leaking at all and is now, in fact, creating a river that runs through my thankfully unfinished basement. I immediately turn that water back off and sit down. To rest. AGAIN.
That’s when it happens. It hits me that doing these very basic tasks, even with frequent resting, is really too much for me. I should say, “…is really too much for me today” but I’m not feeling all that optimistic at this point.
I start thinking about the flowers I will want to plant in a few weeks. I start thinking about the work I have to go to tomorrow and the busy week I have in front of me. I start hearing the three different doctors that I saw just in the last week tell me over and over again in my head how important it is for me to exercise. “When was the last time you walked a mile, Maribeth,” asked The Great Scott himself. “You really need to find a way to work out Maribeth. You don’t want your muscles to atrophy,” said my very helpful gynecologist using the exact same words she said to me last year around this time. “Maybe swimming? Some people like yoga,” said my brand new primary care doctor who didn’t even like the sound of the idea of actually doing yoga herself.
How am I supposed to do those things when I can’t even do the regular things? Regular things like waking up, working, going to lunch, doing very minor seasonal chores, feeding cats, doing laundry, making dinner, going to the grocery store, getting kitty litter, scooping kitty litter on two different levels of my home, changing the hair infested sheets…Just freaking EXISTING.
I have read a lot from other Single Spoonies. I do know I am not alone. I know there are other people out there who are trying to deal with this stuff by begging favors and asking family members for help and making dates for helpers to come over and adding to the ever growing list of people we pay to do normal tasks (I’ve taken to thinking of them as my other staff). I know this is what it’s like. I get this intellectually.
I can’t stop looking forward to the day where I finally accept it. Or where it doesn’t feel so goddamn overwhelming. I can’t stop looking forward to the day where I don’t crumple in a ball and cry on the phone to a poor friend who happened to call me at the second I metaphorically tumbled right over the edge (well, it wasn’t a total accident. I may or may not have texted this very helpful friend with a desperate cry for help).
I didn’t expect a phone call though. People don’t do that anymore! I knew I had to answer because if I didn’t he would think I was rolling around on the floor unable to get myself to my feet. I wanted to stop the waterworks before I said ‘hello’ but hearing another human voice at that very moment just made me cry more.
He made me laugh. That’s a damn good friend. Then when my god-send of a nephew stopped by to help carry the five boxes of kitty litter into my house from my car, it happened all over again. My darling boy who I usually am trying to help in some way was helping me. He sat with me in my chair and a half while I cried and told me everything would be OK. He would always help me with my chores (and yes, that made me cry harder and I’m crying again right now just thinking about it).
I thank the universe I have these people (and many more) in my life to help me get through it when I can’t see my way to feeling hopeful. I know it’s the two month flush. I knew it was going to be bad. It’s funny how that knowledge doesn’t make it any easier when your body just freaking craps right the hell out.
I’m going to bed now. It’s not even 9:00PM but that’s how I roll these days. I have to take a shower tomorrow. I have to go to the office, finally, because there are things I have to do while connected to the stupid on-site network. It overwhelms me just thinking about another two weeks or more like this. It brings forward the terrible thought that is always lurking, sneaking around in the back of my broken brain…
What if the new drug doesn’t work?
Then I immediately shoo that thought. I look out the front door at the sun setting over my neighborhood. It’s really gorgeous tonight. I remind myself that the ability to sit here looking at the sunset from my comfy chair inside my personal refuge is only one of the ways in which I am incredibly fortunate.
It was a good day today. I know I write a lot about the bad days so I thought I’d change it up and mark one of the good ones.
Here’s what made today so entirely good:
I was on vacation. Day two of guilt-free living.
I found out today I am officially approved for Ocrevus!! CVS/Caremark didn’t screw me!
I also found out today I was approved for the Ocrevus patient assistance program which means I will pay a hefty sum of FIVE AMERICAN DOLLARS for my twice yearly infusions. That is not a typo.
I saw my precious, aka Cheryl my Therapist, and we both felt very happy with my latest epiphanies.
I had a blue plate special dinner with one of my best and longest friends. We met in kindergarten. She met me at 4:30pm. She didn’t care about my yoga pants or my lack of makeup. We laughed and laughed.
I’m on my two month flush without DMT’s while I anxiously await approval for Ocrevus. Recent drama didn’t really make things easier (hello? Stress makes my symptoms worse. Good times). But now that’s over, I’m back to the waiting.
It’s weird. I don’t feel as bad as I thought I would but I also feel extra slow. Like my body just wants to sleep and sleep, resting itself for what’s to come. Or something. My body has a mind of her own and she doesn’t always let me in on her logic.
Transitions are tough on the new me. Transitioning from winter to spring is a big one. The sun is shining, the air is warmer and along with that comes a long list of transitional chores…swap out the clothes, put the coats and blankets away, clean the front porch, drag out the porch pillows and chimes, plant some flowers, drag out the garden hose and put it back on its holder for summer watering…spring cleaning in general.
My mom was telling me yesterday that I obsess over too many things. Nothing is so important that it has to get done NOW. “Just do something, one thing, and it will make you feel better, Bethie, but stop letting all of it get to you,” my wise mother told me yesterday at Easter brunch at her house. “It will get done eventually,” she said.
So this is my motto for my flush months…I’m gonna give it my some. Shout out to my awesome new friend Alicia for the find. She gets it.
And yeah, I hired someone to do the spring cleaning. I’m not that crazy. The whole working thing is good for making such things possible and for providing the vacation days (like the one I took today) to “vacation” which now means something entirely different to me than it did before. Vacation used to mean adventure and fun and travel! Now it means resting without all the guilt.
So I’m gonna give it my some. Cause that’s what I have to give.
There’s been a good reason for it, to be honest. I wanted to write a post about the situation I found myself in last Friday afternoon but at the same time, I was in a stone cold panic just thinking about the notion of sharing something so incredibly horrifying to me.
The phone call came as I was making the delightful discovery that my local boutique grocery store, Feast on Brilliant, carries my favorite ice cream brand called Jeni’s Splendid Ice Cream previously only available to me via mail order (click that link right now…do it…trust me, you will thank me later.) I was sitting in my car texting this fantastic news to my niece when my phone started ringing. When I saw that it was The Great Scott himself calling me at 5PM on a Friday, I immediately got a pit in my stomach.
“Well, Maribeth, you’ve done it again. I’m a little stumped. But based on your blood work, you appear to have tested positive for Hepatitis B.”
There was more to the conversation than that but this was the end of the place in the conversation where I felt like the same person I was before.
I had another disease? A highly contagious, communicable disease? I had a freaking STD? We won’t even get into the irony of that statement but there you have it. I was to see a liver specialist to determine more information about my new condition. TGS had scheduled it for me for 8:00AM on Monday morning (holy crap, that was fast), and we would work with her to determine if I had any chance at all of getting approved to get the new goo, what with my damaged, infected liver situation.
TGS had already spoken with the people at Genentech who manufacture and market Ocrevus. They weren’t keen on my prospects of getting approved to take the new drug. It would be very dangerous for me. I had a high likelihood of developing liver complications, maybe even liver cancer, and they didn’t like that idea at all. TGS tried to calm me by telling me he wasn’t giving up but we had to work together with my new liver doctor to make our case during the roll out of a very new medicine where there is much information unknown. “I’m optimistic,” he said. “I’m not giving up. I don’t think you should either.”
I don’t know if I can explain what went through my head in those minutes of discussion.
I was reeling, frantic, horrified, ashamed, with outraged madness raging like wildfire burning through my brain. How could this happen to me? What kind of joke is the universe playing here? Who or what cosmic entity has it out for me that mightily that things like this can keep happening to me? When is enough enough already for the love of god?
Panic would be a mild word. Desperation would come closer. I had my hopes up so very high. I know the buzz in MS circles is full of hyperbole when it comes to Ocrevus, I get it. It’s complicated and might not be all that and might be more dangerous than anyone knows, blah, blah and blah. I get it. I really do.
But my options aren’t good otherwise. Tysabri is one of the most aggressive DMT options out there and it just didn’t take for me. Dr. Scott was extremely optimistic about getting me on something new and that was a good thing because my time on Tysabri was running out. My JC Positive status always meant that I was on short time with Tysabri. I’d gone 15 months but we originally agreed that I had about a year where the risk would be acceptable and after that, it was probably not a great idea for me to stay on the drug. Fifteen months means I’m three months into the danger zone. I’m not excited about that.
And since I’m being really honest here, I was blown away by the notion that I now had a disease that I probably got from having unsafe sex in my years of wild, reckless abandon, during my insane 30’s when I took to living life like I had a little tiny death wish. Or a great big death wish.
It seemed more than a little ironic to me that the things I did to prove my lack of worth to myself, my undeserving shameful existence, might actually ruin my life. Prevent me from being treated properly for my MS. Mark me with a giant letter B that didn’t stand for Beth but actually stood for dirty whore who will infect you if you get too close.
I know, by the way, that this is insane. I know there are many more ways to contract Hepatitis B than having unsafe sex, but it seemed like the most likely option for me from all of the information I read on the many web sites, chat rooms and Reddit threads dedicated to the topic. I spent the weekend feeling like I was living in an alternate dimension where everything looked like my regular life but nothing made sense.
I told a few people. I don’t even know why I did but it felt like the kind of dirty secret you had to disclose to at least three people to make it feel even a little bit real. So I did disclose to a few. My therapist. My best friends. My closest family members. I didn’t want anyone to know really but at the very same time I wanted everyone to know! Maybe if everyone knew it would make it feel more real?
Don’t drink from my water bottle, people, and for the love of god, don’t kiss me because, Jesus, this disease is no joke. It’s highly contagious. It does horrible things to your body, mostly your liver. Based on my non-stop scouring of the interwebs over the weekend, there wasn’t a whole lot good to say about my current circumstances. I, all of the sudden, found myself full of empathy for people out there who are infected with this dastardly illness. I wanted to meet them all and tell them they were good people who probably didn’t deserve what they had to deal with. I realized that was probably impractical but, still.
I counted down the minutes to my 8:00AM appointment with my new liver specialist. All weekend, it felt like that time would never come. I had pages full of questions I wanted to ask her, not the least of which was, who do I have to tell? Who is in danger from me? Do I have to call everyone I’ve ever had sex with? I mean, Jesus, please tell me no! What about make out buddies? Did I have to spend the rest of my life wrapped in plastic head to toe like the Old Lady in the Plastic Bubble to protect everyone around me from my infectious horribleness?
Dr. Goswami, my new liver doctor, was seeing me on the actual due date for her second child. She was all of about 4 feet tall and great with child. She asked me a million questions to which I answered 100% honest “NO’s” and even she looked confused.
“We’re going to do more tests,” she said. “This test you had tells me nothing but that you’ve been exposed to the HBV virus. There are many things we can do. You may need to be on medication for the rest of your life but we can figure this out.” She handed me four pages of blood work orders, an order for a liver ultrasound, and a pat on the head and a promise that someone (not her) would probably be in touch because Lord, help her, she hoped this baby was about to be born already. She was quite adorable. I felt like I was in a shit situation but in good hands. My favorite part of the appointment?
Dr. Goswami: “Are you currently sexually active with multiple partners?”
Me: “Um, no. I’m not. I am quite frankly sexually INactive with zero partners because Jesus, who can think about all of this and that at the same time?”
Dr. Goswami: “When was the last time you had unprotected sex?”
Me: “Um…I’m not sure? Maybe…um. God this is kind of embarrassing, but I can’t really remember. Maybe 5 years ago?”
Jason the Nurse (who has been in the room with us the entire time): LOUDLY CLEARS THROAT AND COUGHS WHILE ALSO SAYING “BULLSHIT” AND TURNING BRIGHT RED.
Ok. He didn’t actually say bullshit but he did choke. He did turn a lovely shade of crimson and I wondered if he was really cut out for this whole dealing with delicate conversations thing. I have to think mine wasn’t the most embarrassing conversation he’d been privy to in Dr. Goswami’s exam room. Or maybe not?
I left there and headed straight down to the lab to have no less than 10 vials of blood drawn from my veins. They could have taken more, I would have been OK with that. I kind of liked the idea of them taking all of my blood and maybe replacing it with better, improved cleaner blood, but that was not entirely realistic thinking. I went back to work with my head still in a whirl wondering what kind of Hepatitis information I would learn from all of those vials of blood and how would I ever learn to live with this? How could I tell people?
Late-ish on Tuesday night the blood results all of the sudden got posted to my health portal. I sat in front of my computer feeling sick trying to figure out if I had the nerve to click or if I’d rather just wait for the inevitable phone calls and the list of more dangerous drugs and all of the hullabaloo that would result from the confirmation of my latest diagnosis. I’m making light of this here, to tell a story, I suppose but I haven’t been in such a dark place in a very long time. I’ve visited some dark places but this one felt really bad. Maybe because of my age? Maybe because there is so very much uncertainty in my life that even just a little more felt like too much for me to handle.
I went to work those past couple of days and acted like a normal person does, but I didn’t feel like a normal person anymore. Not even a normal person with a chronic illness like MS. I felt decidedly bad. I felt damaged.
But on Tuesday night, I did click on those results. I had to! I held my breath as the little cursor arrow landed on top of the first of 6 lines six different hepatitis tests..
I stared at the screen blankly. Non-reactive? Does that mean negative? I think that means negative but I’m afraid to believe that so I better Google. Yes. I think it really does mean negative, but maybe there is more to this. I had a liver ultrasound scheduled for the next morning. Maybe the ultrasound would show my diseased, pathetic liver and prove these tests wrong.I went to bed feeling muddled. I wanted to be happy but I was afraid to be happy.
The next morning, I had the ultrasound. I drove to work. Just like a normal person. Just like before. I emailed both doctor’s offices and left messages on both voice mails. Nobody called me back.
Then today, I got word from The Great Scott himself, again, but this time on my voice mail…
“Maribeth, it seems we were wrong. My first impression is your first test was a false positive. I have to investigate more, however, because this is deeply concerning. I need to find out more about how this happened. I will be in touch, but the good news is this is good, very good news. The bad news is we probably caused you a very fretful couple of days and that is just not good. I am investigating with the labs and will get back to you as soon as I know more.”
In an email I received later this afternoon, it was explained further that the particular test the drug company requires for Ocrevus is so sensitive, it has a rate of more than 50% false positives. TGS and his team were unaware of this before this experience with me, but in his investigation and discussions with the liver specialist he was enlightened. He ordered this particular test originally because it is the test that is required to be in the Ocrevus Study. TGS wanted to apologize for “making me go through this. With a brand new drug we are all learning about this drug and the requirements together.”
“That being said, two good things came out of this–1. Your liver is fine, the second set of testing verifies this. 2. We can move forward with getting you switched to Ocrevus. I know for a fact, Nurse A is working on our Prior Authorization as I walked back to the Infusion center and informed her you were approved to move forward with the medication.”
So…there is a lesson to be learned here. Lots of lessons really.
Don’t panic until you get more information.
Don’t assume you’re a bad person who deserves the bad things that keep happening to you. You’re probably not. Nobody is.
People have a lot to deal with. From what I learned about Hepatitis B in my mad lost weekend of research, I can tell you that the people who have it suffer badly not just from the impact of the disease itself but from the incredible burden of being judged harshly by so many people all around them.
I will be more empathetic to all people who suffer. I will be more empathetic in general. People all around you are dealing with heavy shit. They may look just fine, they may look a little tired but they may mostly look just fine and you have literally NO idea what they are going through. None. Zero. Nada.
Don’t be judge-y. Don’t be cruel. Try to understand. Oh. I also learned to never forget that there can always be a false positive! I never believed in such things. I thought I deserved all the new bad things that were happening to me on top of the bad things that were already happening to me and you know what? I didn’t. You probably don’t either. Nor does that lady sitting across from you on the bus.
Be kind. Try to understand. People are dealing with a LOT and even if you can see it, it’s worse than what you see, I promise you.
And I’m having my damn soufflé, anyway, so take that Great Scott. Take that.
Instead of my infusion I got to sign the paperwork for the new goo. Three signatures. No giant black type telling me “THIS COULD KILL YOU” on any of the pages (good sign). New order for blood work since there’s a one in 200 chance I have hepatitis B and would therefore need to pay close attention to my liver functions (“we’ll get you approved either way…it just makes things complicated,” said TGS). I knew I wouldn’t avoid the needle completely today. I just knew it.
This extraordinary exchange happened:
TGS: We’ll stay in touch over the next couple of months. We don’t want you to relapse.
Me: Well. As we’ve discussed and agreed to before, I’ve never actually gotten to that whole remission thing yet so I’m really hoping it doesn’t get too much worse. I need to function.
TGS: If that happens we may consider steroids.
Me: I know you insist there is no difference but oral steroids don’t work so well for me. IV steroids are the only thing that has ever made me feel better.
TGS: I’m sorry but you’re just wrong. The studies – there are many studies, prove that they are exactly the same.
Me: Ok then, so my actual experience with both methods means nothing?
TGS: Listen, some patients think what they think. You think eating ice cream makes your pee orange so that has to be true. It’s just not.
Me: Didnt you tell me last time I saw you that physical lesions on my MRI aren’t indicative of how my disease is progressing? Didn’t you tell me that the ‘way the patient experiences and reports their symptoms’ is the best tool you have for evaluating my disease progression?
TGS: Yes, yes I did tell you that.
Me: But my actual experience with oral steroids versus IV steroids isn’t relevant? How is that different?
TGS: Well, in that case, you’re just wrong and I’m right. That’s all there is to it. (Laughs)
Oh. Well then. Consider the gauntlet thrown, Great Scott, challenge accepted. I will be googling studies to prove you wrong in every second of every day where I am not either sleeping or working because I really hate when someone tells me “you’re just wrong.” Even when that someone is The Great Scott. What I actually said to him after this last statement?
“Well whatever. You could be wrong too.”
He laughed. Then he started quizzing his student, Aviva, random questions:
TGS: How do mononucleotide blah blah stuff I can’t say work?
Avila: Well I believe they blah blah blah things I don’t understand.
TGS: Well no. That’s wrong. I guess you had a fifty fifty chance. Now check Miss Nigro’s visual fields please.
Poor Aviva. She and me are on the same team. I smile at her. She says, “He’s funny that way.”
I say, ” Well that’s one way to put it.” She winks at me. The Great Scott laughs again. My visual fields seem just fine.
I got to Quest to get my blood work in time to also get to Panera before 11am when they mysteriously take away the soufflés somewhere where you cannot buy them. I enjoyed the crap out of that soufflé.
Oh. One more thing. “What can I do about this physical fatigue over the next several months while I’m waiting for the new goo?” I asked.
“Lose weight. Exercise. That’s all you can do,” says TGS.
I sigh. “Really? That’s what you have for me? Does it make sense to you that I am so fatigued that it wears me out walking from my parking garage to my office and you want me to exercise?”
“Well it’s your only option. It’s just the way it is,” he says to me. I see Aviva roll her eyes behind his back.
“Well it’s stupid. I have to work. I have to maintain my home. I am single. I need my job. I can’t just ‘find time!’ Who do you think I am? Goddamn Montel Williams?! I actually have things I need to DO that suck up what little energy I do have. Things like showering. And laundry. Yeah. That’s just the way it is,” I say.
“Ok then, it was great seeing you today Maribeth. See you again in August. Aviva, please bring my tools to exam room 14. Have a great day Maribeth. If you don’t hear from us to schedule you in the next three weeks, give us a call,” TGS says as he walks out the door.
This basic thought has been bothering me all week but it’s such a fundamental “a-ha” moment for me, I feel compelled to record my discovery.
It’s so simple it’s kind of annoying. I’m talking about the simple fact that we live in an “and” society but thanks to multiple sclerosis I am quite firmly becoming an “or” girl. I used to be an And Girl. I was trained from a very young age to do this and that. Go here and there. See that person and this person. Have this job and this social life. I was taught to believe that I could have it all – everything I wanted – if only I worked hard enough and gave my best effort at everything I did.
It worked. I did pretty well for myself being an “and” girl. I worked hard and I had fun. I did chores and I socialized here, there and everywhere, with this person, that person and the other person. I loved my home and I loved exploring the world. The list of places I racked up under my “been there, done that” column got to be pretty impressive. I was living that dream and enjoying (most of) it.
That’s why it’s so hard for me now to realize, like I’ve been hit by a ton of proverbial bricks,that I am now quite literally being forced to become an “or” girl. A wicked combination of a later-in-life diagnosis of multiple sclerosis, and just freaking being later in life in general, combined to create this person I have become who must choose daily, even minute-by-minute this OR that. Very rarely both.
I’ve been living in the land of denial. Complaining to friends about how pathetic it is that I get tired so easily. My daily life takes so much out of me that sometimes I find myself only out of bed an hour or two before I’ve run plum out of spoons. But I still have the rest of a long day to get through. Spoonless. It happens more than I’d like to admit.
My best friend often tells me, “Don’t be so hard on yourself. You have a reason why you feel this way. You can’t help it.”
Yeah. That doesn’t really sit so well with me. I’ve never been a person who does very well with being told I could have this or that, do one thing or the other. I wanted both. I wanted more. And goddammit, I would be the person who proved everyone wrong by doing exactly that thing people told me I couldn’t (or shouldn’t) do. I took joy in it, really. I reveled in having it all, while being on my own, and living my very best life. I felt victorious.
Imagine how I would deal with my own body forcing me to say “uh-uh you can’t do that.” You are probably imagining the very struggle I find myself in each and every day.
I can shower OR get to work before noon. I can be effective at work OR I can put my health first. I can be successful in my career and thus pay my bills OR I can have fun. I can get up early OR have a late afternoon meeting. I can’t do both. Not both of any of those things. I can put on makeup OR I can sleep longer. Guess which things I choose?
My favorite illustration of this concept is my recent experience attempting to take a business trip (and failing). I realized I could shower OR have energy to walk through two airports and get myself to our corporate “campus.” I could do my presentation and put on a good show OR I could have dinner with colleagues later that evening. I could have meetings all day long trying to be my in-charge managing director self – OR I could walk without falling. There were so many ORs that I knew would be ANDs that it overwhelmed me.
Oh wait. There was one more. I could take the drug that helps me be focused and alert for a few hours OR I could be sane and able to function. Turns out, when I take Provigil too consecutively at my full dose it does bad things to my brain. Really bad things. Color me informed.
I am getting better at accepting this. I have two 9AM meetings next week on consecutive days because, well, it should be obvious by now that if there is a god, she pretty much hates me. I know that to make this happen, I will have to be in bed by 8PM or thereabouts the night before to make sure I can be out of the house by 7:15AM (have I mentioned that my body literally doesn’t work in the morning? I need very much extra time built in for pretty much everything).
There will be no showering. I can’t shower AND get to my meetings on time. Something has to give. I have to accept that I can do basically nothing else next week. There’s the OR busting up my plans to live a full life! I can make it to two 9AM meetings on two consecutive days and perform effectively AND have two days (or more) of recovery to get back to basic functionality.
Today I allowed myself to sleep in (pretty much like I always do on weekends) but I knew I had a few chores I wanted to accomplish over this weekend. Nothing too scary! My list of things to do included:
Go to Target for necessary supplies
Get cat food at Petco
Go to Giant Eagle- grocery store- for the things I can’t get at Target
Drop off dry cleaning
Do laundry (most of my favorite clothing, i.e. my pajamas are dirty)
Make myself something not terrible or unhealthy to eat
It’s a reasonable list. Not very taxing. But for me, here’s how my morning went:
Get distracted by overwhelming desire to purge my life of excess stuff. Find myself organizing excess makeup into a bag for giving away. Get even more distracted pulling things out of my closet for the great clothing give away I am planning in the coming weeks. Get through fall/winter dresses and shirts, think about doing spring/summer dresses too – and stop myself knowing I am already worn out.
Brush my teeth. Scoop litter on two different levels of the house. Put on “clothes” – meaning my weekend uniform of black yoga pants and black long sleeve t-shirt. Stumble down the stairs to take morning meds. Realize I left the dry cleaning upstairs – head back up the stairs to get it. Walk out the door realizing I’ve yet to eat actual food or have any coffee. Dammit.
Drop off dry cleaning. Head to Target and spend $300 on things I definitely needed and some I probably didn’t. Drive home. Sit in the driveway for 15 minutes posting on Instagram because my legs are too tired for unloading. Realize I forgot to go to the Petco or Giant Eagle. Tell myself tomorrow is another day and unload my bags from Target. Put away kitchen supplies, begin making food. Realize I cannot stand in front of the stove, so I sit on my kitchen step stool while cooking. Stand for five minutes. Sit for five minutes. Repeat.
I had every intention of doing that laundry. But guess what? Ain’t gonna happen. I’m currently resting after enjoying my delicious (and healthy) concoction that I’m calling “fancy girl hamburger helper*.” I paid my nephew $15 to go down to the basement to scoop my litter boxes. He probably would have done it for free but I like to help a kid out, ya know?
I stand at the kitchen sink long enough to do the dishes and feed the cats when I realize I need to sit down for awhile. I decide to write this blog post while I rest, gathering up the energy required to climb the stairs to my second floor to don my pajamas (please dear god let there be one more clean pair of pajama pants in my drawers). Once that is done, I will go back downstairs to try and watch something on TV before I climb the stairs again to collapse in bed once more. I will lie there, a few minutes, and wonder what things I didn’t do today I will find the energy to do tomorrow.
I will probably read a little before falling asleep, because that is my reward for getting through a basic day. I will sleep in late tomorrow (again) and try to choose between this OR that really basic stupid chore.
I watched a video online this morning where Montel Williams (who also has MS) talked about how he has basically dedicated his life to his health, 100%. He always eats right, he always exercises, he makes sure he is always well rested and he finds the right doctors to help him. He is 100% focused on optimizing his life in such a way that MS will not destroy his happiness. It’s a full time job, said Montel, if you want to live your best life.
I found myself wondering…Hmmmmm.
I guess Montel probably doesn’t have to get himself to work every day like I do. He probably removed the things from his life that got in the way of his 100% focus on his disease. I envy him for exactly one minute then suck up a big dose of reality telling myself that this is simply not possible for a Single Spoonie such as myself. It just isn’t. So I organized more clothes for giving away and went about my daily business (see above).
It’s hard not to resent it. It’s hard not to imagine this getting really old really fast. I want to be an “and” girl again. I really loved that girl. I really loved how she found time, energy and verve to do exactly everything she wanted to do. I love how she would do nothing as often as she wanted to and enjoy it, not resenting it or feeling badly about it. I now have to choose between things that are so basic it doesn’t seem fair that I should have to choose at all! It pisses me right the hell off.
Then I remember the wise words of yet another friend…”It can always be worse.”
Holy crap. It really, really could. It really, really will probably actually BE worse at some point. I better figure out how to stop resenting this shit. I better just suck it the hell up and start choosing between this OR that and getting on with it.
I’m not Montel Williams and I can’t dedicate my life to optimizing my health. So I should probably figure out another way around all of the “ands” in my life.
They just don’t work anymore. That’s all there is to it.
*Here’s how to make Fancy Girl Hamburger Helper…Get yourself a pound of grass fed ground beef from Aldi’s for $5. Saute that in a large skillet with a bit of olive oil. Boil water for some Barilla Plus Protein elbow macaroni (both high protein and high fiber, chick pea pasta). Once ground beef is browned, add in some chopped organic green onions, salt/pepper, a dash of my mom’s secret ingredient (celery seed…sorry, Mom). Add two cans of organic, no-sugar added tomato soup. Marry the pasta with the beef by adding one can of well-salted pasta water to your beef/tomato soup mixture…Simmer for a while. Viola. This is really delicious. Not even a little bit high-brow but so tasty I will have yummy dinner for most of the week AND not kill myself doing it. Winning? Sort of. It can always be worse.