Remembering to say…for now, for today, for the moment

Sometimes, I forget to make the best of (sh)it.

I think I’ve had my first bout of actual writer’s block. It’s been almost two weeks since my last post and while this bothers me intensely, I think it might also mean that I’ve found some new ways of coping. So, yay me?

Kind of.

The thing that keeps occurring to me, this past week, is how hard it is to roll with whatever is happening in this moment. Right now. At THIS time.

For example, as I wrote in my last post, I’d discovered a new way to manage my pain. That’s been a huge change for me, an astronomical shift in how I can get through the pain of every day life with MS. Here’s the thing, though.

You still have shitty days. I still have shitty days.

I literally can’t rely on myself from day-to-day. And by myself, I mean my body. For the most part, my mind seems to remain mostly intact so there’s that. Thank the universe for that. But my body? My body is fickle.

Some days I feel so good it’s almost like I’m inching closer to pre-MS me. I am talkative. I find myself laughing. I sleep soundly and wake up feeling almost ok. When those days happen (and they don’t happen that often), I have to force myself to not go flying over the rainbow on my glitter unicorn singing, “IT’S OVER! IT’S OVER! I’M GONNA BE OK!” Because chances are within 24 hours, or even less, I’m going to feel completely differently and wonder where the good went again (I’m a bit obsessed with Tegan & Sara, but you guys already knew that).

Some days, I am halfway up the stairs to my second floor before I remember to hold on. Other times I go to stand up from sitting and my body literally won’t budge. Some days I wake up in the morning before my alarm and I don’t feel like I need 10 more hours of sleep. Other days I wake up and feel like sleep was a big fat freaking lie and I cannot conceive of getting out of bed. Some days my legs operate as legs should, for the most part, and I find myself feeling silly for walking with Stan (my cane, my one and only man) because he’s become somewhat irrelevant (kind of like some of my last boyfriends). Other days, I lean on him like my life depends on him. And sometimes it does.

Sometimes these changes don’t even take an entire day. Sometimes things change moment to moment.

When I was diagnosed with relapsing/remitting multiple sclerosis, I thought the spans of times when I would be either relapsing or remitting would be big long times. Weeks at least. Months even! I was led to believe that I’d have symptoms at times, at other times they would be worse, but I’d eventually level off again and get back to “normal.” Remitting means “cancel or refrain from exacting or inflicting (a debt or punishment).” Canceling or refraining is not what I’m experiencing. Waxing and waning maybe? Always on until it’s off? Firmly off before it snaps back on again without warning?

“Relapsing and remitting” might be the most deceptive term I’ve ever come across related to a medical diagnosis. It should be called “Constantly Changing and Keeping You Completely Off Balance MS” but I think CCAKYCOBMS doesn’t roll off the tongue so well, so they voted against it when choosing MS names.

The thing is, there is no normal anymore. One cannot become “accustomed” to having multiple sclerosis because one cannot ever get used to any one thing.

I’ve been thinking about this a lot lately because my MS friends and I have been riding the roller coaster together. We text. We message. We talk online. We talk a lot and thank god for that because damn, it feels good to be 100% understood.

The day usually starts with “what kind of day is it for you today?”  Sometimes the answer is, “eh, not so bad.” Other times, the answer is, “Woke up with non-functioning legs.” Or, “Took a fall, feeling crappy, here we go again.” Or something similar.

We always forget to say “for now.”

Because it could be hours, days or weeks until your current state changes again or it could be minutes. This works in both directions, good and bad. Some days I wake up thinking I can’t. I just can’t do anything. Hours later, I’m grocery shopping and things don’t feel all that bad with a cart to hang on to. Other days I wake up thinking, I can and wind up flat on my face with dishes flying through the air and a purple-ish bruise blooming across my nose. You just never freaking know!

It’s a challenging way to live. My entire life is supposed to follow a schedule of some kind. I’m employed full time running a business. Meetings are a perfect example.

I used to plan meetings and feel nearly 100% confident that I’d be able to be where I needed to be when I needed to be there. I’m a reliable kind of gal. I like to do what I say I’m going to do. Consistently. Period. Now? Chances are 50/50 at best. I’ve nearly killed myself trying to keep to some kind of regular work schedule, in some kind of reliable way (either in the office or not in the office) but the fact is, I have to roll with what my body can handle on any given day and that’s just how life is now.

I might want to be there in person, but you might also get my tinny voice on a conference line instead. I might want to plan a trip to the home office to spend some much needed time with my colleagues down south – but I can’t tell the airlines I may or may not be able to make my flight and I won’t know until I’m walking out the door which it will be! I can’t tell my colleagues I may or may not be coming to see them in person, so just hang tight and free up some time for me just in case, because that’s not how the business world works!

But it’s how my world works. Thank the universe, once again, that I’ve somehow had two of the best years of my professional life these past two years since I was diagnosed with MS. The universe has a perverse sense of humor. But the constant threat of “what if I can’t?” takes a toll on us. Being a person with MS means never getting to really plan a goddamn thing.

The obvious up side to all of this is that we have to constantly remember, or rely on one of those trusty fellow MS buddies to remind you that whatever it is that feels so horrible now probably won’t always feel so horrible. It might last months (like after my first big relapse) and you might even start to get used to your new limitations, when all of the sudden something changes. You feel better. Or you just feel different. You will never see it coming but you can rely on one thing. It will change.

Sometimes I laugh to myself and think that MS is trying to teach me the secret to inner peace by proving to me that all we ever have in life is right  now.

Just as I type those words I got another right now but I might not have. I, of all people, should know that fact from my experience with young widowhood. But you forget! Time passes by and you start to feel normal again and you allow yourself to believe that there is such a thing as normal! You find yourself falling into a new routine and thinking it’s real but it never really is.

It is all about to change (or not) at any given second of any given hour in any given day (and so on and so on and so on). Or not.

It’s a universal truth and it’s universally ignored because there is truly no easy way to live without holding on to the delusion of control and remain a functioning member of our society that is built on plans, expectations, commitments and other silly things that are absolutely meaningless to me now.

I try to remind my friends (and at the same time myself), when we’re having shitty horrible terrible MS days that we have to remember to say to ourselves, “This really sucks balls…for now.” Or, “Fuck this…at this moment.” Or, “I love feeling so awesome…today.” Because good or bad, you kind of can’t count on any of it. And you have to be ok with that. Otherwise, you will straight up be in misery every day of your life and who the heck wants to live in misery?

I have to tell you…not me.

I’ve nearly gotten to the limits of my ability to wallow in misery. I’m sure you’ve all been waiting for me to reach that place, finally, and stop bitching constantly about how much I hate this entire experience! I was beginning to be concerned it would never happen myself. But there is a limit on how long you can feel hopeless and still find the energy to wake up each morning and play along. There is for me, anyway.

Reminding myself to put a shiny pink bow on a shit sandwich is important. It’s all gonna change! It’s not worth the energy it takes to believe any of it will last forever – now that could be your crappy legs, the rainy day or the month of January that seems without end. But it always comes to an end. And something new begins.

Now I’m not going so far into my commitment to misery-free living as to think I’m going to have more good moments than bad ones from now on. My experience of the last 24 months has not proven that to be the case. It’s just not true.

Yet. It’s just not true YET.

The search for peace (or pain relief…I’m not picky)

It’s been a little more than two full years since I was officially diagnosed with multiple sclerosis on December 1, 2015.

The contents of this entire blog are a summation of my struggle to accept or even understand what that information actually meant for me and serve as a kind of proof that this crazy shit is actually really happening. Let’s face it. These have been two rather shitty years. I got my diagnosis. I began to go downhill. It made me wonder if the mere function of knowing somehow made my body kick into disability mode. Like ignorance was my friend, and now that I was enlightened, my body was throwing a disease party and my entire central nervous system was invited.

Limbs were useless. Fatigue made me a living zombie. I learned, for the first time in my life, what real anxiety feels like. I changed into a completely different person almost over night. I stopped recognizing myself when I looked in the mirror. I stopped going out at night almost entirely. It was just all too hard. All of it. All of the life I had before December 1, 2015 became too fucking hard.

You guys already know all of that, but it’s important to understand the mental affects this disease unleashed on me to understand why these last few weeks have felt so downright amazing.

Formerly outgoing, see-and-be-seen Beth, the girl who could handle anything turned into home-bound, never-want-to-be-seen Beth who lived in mortal fear of somehow not being able to think let alone walk. Sometimes this was a physical thing. Most of the time if was a physical thing but I’d been ignoring the entire mental side of what was happening. I tried and failed to look at the bright side. I swung back and forth between dire despair and insane denial. Cheryl, my therapist, and me just keep reassuring each other that we just had to believe it would get better. We just had to.

Then the pain started.

I was just getting back on my feet after the Great Relapse of Summer 2017 (I call it that in my mind, like a title of a movie), when I was trying to get back into some kind of routine with my life. Getting myself to the office at least a few days a week. Trying to function. Trying to try harder. In the middle of all of that, I started to feel this intense fire in my body. I’d never felt anything like it before. I think I have a fairly high tolerance for pain, but this was something different.

I would feel it creeping up my spine around 3PM while I was sitting at my desk. I would begin to feel desperate knowing where it was heading. I knew I could rely on Sandy, my BFF who also happens to work with me, to help me get to my car but then I had to get in my house, do my daily cat chores. Get myself to bed. The mere physical effort it took to get me out of my house and to another location rendered me basically useless because my body was riddled with fire. I got a fancy new ergonomic chair! It’s amazingly comfortable but it didn’t help with this newfound pain.

I’d drag myself home. Drag myself up and down and down and up a bunch of stairs. I’d lay in bed in tears, my entire body on fire from the base of my skull to the bottoms of my feet to my fingertips. I was eating 800mg of Ibruprofen every four hours or so (way too much). It didn’t help me even a little bit. I’d start to think about how the next day was likely going to be more of the same. It was becoming pretty consistent. Sometimes I woke up in the morning with the pain already in full force.

I was starting to feel desperate. If living any kind of “normal” life led to this kind of pain, I was beginning to panic. How could I do this? I do pretty well acting normal in the real world, but I’m not that great of a pretender! I was toying with the idea of asking The Great Scott if there was something I could take for pain.

The minute that thought crossed my mind I shuddered. NO MORE DRUGS. Those words echoed in my head. I cannot take a single additional prescription medication. I mean, there has to be some point of diminishing returns, right? I take so, so many meds. I’d list them here but you’d probably have a hard time believing it. Also, pain medication just scares me. I’m definitely the type of person who would be inclined to abuse medication like that. If one pill helps, I bet two pills help so much more! I just know myself. It’s not a good idea.

I started to feel pretty dark. I think you could probably tell from the posts throughout 2017. I tried to keep my humor about me. I always reminded myself that there are people who have it so much worse than I do. That I should be grateful every minute of every day. Thinking those very true things didn’t really help much. Knowing other people are suffering doesn’t make your pain go away when your pain is a physical, menacing presence like a fire burning inside your skin that nobody can see but it feels like it might consume you. It just doesn’t help.

Friends I’d made online suggested to me that I consider trying cannabis for my pain.

I mean, I’ve read and researched a ton about this possibility and I truly believed it had merit. I already used some homemade cannabis edibles to help me sleep at night (I will never reveal where I get them but suffice to say, the person who makes them for me is a literal angel on earth).

Then there’s that one small detail I couldn’t get around. Cannabis isn’t legal here in Pennsylvania. I know we’re in the process of legalizing medical cannabis but that’s a process that takes a lot of time. I’d heard a bit about how hard it was to not only get the card you need to become a patient but then to get supplies from a very limited number of dispensaries. Oh. Also, as you might suspect, The Great Scott (my MS specialist) is 100% against medical MMJ across the board. Shocker.

But there is more to this struggle than those very factual, legal hurdles.

There is the fact, proven over 50+ years of life, that I freaking hate weed. I hate how it makes me feel. I hate how it smells. I hate smoking anything (except for that very short spurt with menthol ultra lights in my thirties when I was drinking my face off five nights a week…that was fun). I found weed basically repellent. It had a terrible effect on me.

It used to be a thing between my husband and I, when he was alive, because he smoked pot every day of his life. He knew I hated it but not because of any ethical or moral reason but simply for the fact that as soon as he took one hit of a joint he instantly became repellent to me. I can remember telling him, “You know, they call that shit dope for a reason. Gross.” And he would laugh and laugh. But I digress. Suffice to say, me and marijuana are not friends. I couldn’t really see it becoming a fundamental part of my life.

I watched how much it was helping some of my MS’er friends. Meg, in particular, inspired me. Watching her joyful face as she chronicled her daily walks on Instagram – noting that this new found joy for walking had been something she feared she lost forever! But not anymore. Meg credits cannabis with giving her her life back. You should read Meg’s blog. She knows so much more about medical MMJ and MS than I could ever share here. Check it out. But the smile on Meg’s face was making me really happy and haunting me all at the same time. I wanted to smile again. I wanted to smile again without the smile feeling like an internal grimace.

I remember telling some of my MS friends, “I wish I could get the benefit of the relief without the high! I’d do that in an instant.” Um. Guess what?

You totally can!

We’ll stop here and I’ll admit that I’m not entirely comfortable writing about this. I haven’t told many non-MS friends about this. It makes me feel funny – even though I’m doing something completely legal and non-psychoactive, it still bothers me. I haven’t broken this news to my mom or members of my family. I’ve told my closest friends, the ones I trust the most, but I’m not sure why this feels like such a dirty little secret.

I’ve been using CBD to relieve my pain and it’s hard for me to admit this in writing but it’s starting to really change me in all the very best ways. I started this whole exploration looking for relief from the pain and I indeed found that relief.

But I got a lot more too. Let’s start at the beginning.

I started with CBD oil from CW Hemp in Colorado. I had seen a story about these guys on CBS Sunday Morning years ago. Here’s a link to an excerpt from a CNN documentary that tells the story of Charlotte. This kid was having 300 seizures a week. The story is heartbreaking but it had a very interesting and happy ending. The CBD oil made by the Stanley Brothers in Colorado changed Charlotte’s life (hence the name of their company in her honor). It was worth squirting some pricey, nasty tasting oil under my tongue a few times a day to see if it could help my pain. AND IT DID. It took a while to come over me, but about a half hour after taking the oil, I felt the pain get quiet. It didn’t disappear immediately, but it got better. I started with their “everyday” product but it wasn’t strong enough for me. I progressed quickly to “everyday advanced” and that was much better.

Better was enough for me to dive into more research.

I discovered that for my kind of pain, the degree and severity, ingesting CBD oil is not the most effective way to get the Cannabidiol into your blood stream. By the time the oil is ingested and processed in your digestive system, through your liver etc. it’s down to something like 15% CBD. I’m fudging numbers here a bit but the reduction in concentration was distinct. I had to find another way to get the cannabidiols into my system without using the oil as the mechanism so the cannabidiol concentration would be higher.

This led me to another (100% legal) product called CBD shatter. Shatter is crumbly. A clear solid that breaks up into little pieces. To get the CBD into your blood stream most directly, I had to get a vape pen to use with it. Here was another hurdle! I know I had that short stint as a smoker in my thirties but it sucked. Literally. I hate smoking anything. I know I’m vaping (not technically smoking) but it feels essentially the same to me. I inhale vapor that comes from heating the CBD shatter in my vape pen. It looks very much like “dabbing” weed concentrates – but this is devoid of THC so there’s no psychotropic effect. I had been really skeptical about that so when it turned out not to get me high, I was super relieved. I found another form of even more highly concentrated CBD in the form of a wax.

Here’s the thing…I will share info with anyone that wants it in messages or emails, but I don’t want to do that here. I’m obviously  not a doctor nor an expert on anything related to CBD vaping. But I am here to tell you that I’ve felt happy for the first time in a months these past few weeks. I haven’t thought about taking a pain medication of any kind in over a month. I was buying Advil liqui-gels in bulk! Not anymore.

There was an even better after-effect of my new practice. That constant churn in my head. The fear that nothing will ever be the same. The constant “what ifs” that fly around my head quite literally 24 hours a day, even finding their way into my dreams. The ever present and sometimes crippling anxiety about what my future could hold…it’s quiet. It’s so very quiet.

That anxiety voice is still there, I know it is. It will probably never go away completely. I mean, when you have a disease that is chronic and degenerative that’s kind of the deal. Especially one as unpredictable as MS where literally things can change from day-to-day, even minute-to-minute. Having that yoke hanging around your very unstylish neck is a difficult business. Things that make that voice quiet have eluded me completely. And I’m a therapy expert! Ask Cheryl.

CBD vaping is helping me. It’s helping me a lot. I hate doing it. It still feels wrong to me even though I know it’s not. I hate how it tastes (some people actually love it! Go figure.). But I’m doing it three to four times a day to help me maintain my calm, quiet mind. To help me keep the fire in my body at bay. Even to help me loosen up these ridiculously spastic muscles that prevent me from moving around in a more natural way. It helps…nearly everything.

So there you have it. My dirty little secret. It’s really not dirty at all! I wish I knew why I’m so judgey! Mostly of myself. Maybe Cheryl will cure me of that some day but until then, I’m just trying to learn to accept things as they are.

And yes, I will be discussing this entire development with The Great Scott and I am already steeling myself for the medical debate that will surely ensue.

But here’s the thing. I’m on the mac daddy of MS drugs right now (Ocrevus). It’s not been the life changing experience I had been told it would be. It’s been just…meh. If something else helps me want to open my eyes every day, maybe leave the house a bit more, embrace the damn cane (sorry Stanley) and perhaps shower a little more often? I’m down with that. In all of my research I can find very little down side to vaping CBD. I’ve experienced exactly zero side effects. None.

It might not work forever. So I’m going to enjoy it while it lasts. I’m going to deal with the fact that I can’t really carry it around with me – it might be legal but it doesn’t LOOK legal – so I can only be pain free for several hour intervals but hell, that’s more than I had before! I’ll take it.

I feel like that little tree, up there in the picture, a lot of the time.

I try to keep things light and airy but I don’t often feel light or airy. I make the jokes and brush off the badness. But I feel dark and alone so much more of the time (even while surrounded by people who love me, both near and far).

A little ray of light seeping in is most welcome! Even if I have to suck it in through my lungs. I’d eat rocks right now if someone told me they’d make me feel better. You can bet on that.

Tegan & Sara, concentric circles and failed resolutions

One time, quite a while back, I had my heart broken pretty badly. Correction, that one time in particular, I had my heart crushed to smithereens not by being left abruptly (which I was) but by the words uttered to me when I asked my then-boyfriend how he could just leave me for someone new after all we’d been through together.

The begging for an answer went on for weeks! I couldn’t stop myself beating myself up, beating him up even more, with incessant need to know why. “How could you?” I whimpered. “How could you leave me for her?” And then one day he said the fateful words I never needed to hear…

“She was just too good to pass up,” he said.

Wait a minute. I thought I was the one who was too good to pass up but apparently suddenly I’d taken a turn into pass-up-able territory without anyone ever clue-ing me in. I was mistaken. I wasn’t too good to pass up at all! SHE was. Well, shit.

The words don’t pack the same punch they had almost 20 years ago, of course, but they pop into my brain sometimes at the oddest moments to remind me that there are, indeed, some things one can never really forget but that doesn’t make those things right or true.

Sometimes the thing that jogs these words back into my mind is a particular song, that I happen to love, that sums up the flat-out flummoxed feeling I was left with once I was actually, suddenly left:

“Where do you go with your broken heart in tow
What do you do with the left over you
And how do you know when to let go
Where does the good go,
Where does the good go?”

That’s from the song by Tegan and Sara called “Where Does the Good Go” and if you’ve never heard it, check it out. It sounds sad, but for some reason, it always makes me feel happy when I hear it. Perhaps because it’s right in the sweet spot of my vocal range and I can really belt it out in the car when it pops up on shuffle?

Whatever the reason, it keeps popping up on shuffle again and again in these last few weeks and it’s starting to mean something different to me now.

It’s not so much about an age-old heart breaking memory to me anymore. It’s more about life now. My life. Your life. Life in general that is always changing, always knocking us on our collective asses only to surprise us with unexpected joy before it knocks us on our collective asses again, then back to joy and repeat. The stanza that speaks to me now is this one:

“It’s love that breaks the seal of always thinking you would be
Real, happy and healthy, strong and calm
Where does the good go,
Where does the good go?”

I used to believe there was nothing I couldn’t do, nothing that could really ruin me. I knew that even when my heart was broken, I was strong, happy and calm. I was healthy. That thing we tend to take for granted while wishing to be thinner or prettier or stronger or more talented or able to run faster. Health is the thing I never questioned. I believed somewhere way down deep that nothing could break me.

Along the way, these past two years since my diagnosis with MS, I lost that fundamental belief. It threw me for a serious loop because if there is one thing that makes me who I am – not the way I look, what I do, where I’ve been, how much money I make, how successful I’ve been, the car I drive or even how many cats I have – it is my fundamental belief that nothing can break me.

That’s how I used to feel. That unrelenting optimism in my own heart protected me. I would always be happy, healthy, strong and calm, no matter who broke my heart or what might make me feel otherwise for a short period of time.

Lately, I’ve been haunted by the notion of concentric circles.

I guess it’s somewhat obvious but I see my life in a series of concentric circles that once were wide and varied and full of new and exciting colors, lately the circles have gotten smaller and smaller, more focused and built of fewer colors than I’m used to, a lot like my predominantly black wardrobe. I think this notion about life as a series of concentric circles began in 2015 right after my diagnosis when I was freaked the hell out but still not fully aware of what my new life would be like. As my health started to go downhill, the circles started to get smaller, but in tiny increments. Nothing too scary. Then with my first big relapse in mid-2017, the circles were suddenly so small, that sometimes they threaten to suffocate me.

And yet they don’t. I’m still here.

There’s always a time period, a date or line in my mental sand for when I am expecting to feel somehow better. Those dates come and go without feeling better and it gets the better of me. It makes me feel like the good up and went. It makes me wonder, in the great words of Tegan & Sara, “what do you do with the left over you.”

Like everyone else in the world at this particular time on this particular night of the year, I’m sitting here on this last night of 2017 wondering which resolution I will fail to achieve this year (last year’s was so good! And also a dismal failure…it made for a great blog post, but it never did stick).

I’m going to try a few things with the left over me, and see if any of them stick…This is my honest attempt to kick myself in the ass and start focusing on the center of the circle – I think that might be where the good actually goes.

I’m in the center. The center of my circles is me.

So for this, the last day of 2017 looking ahead into a brand new set of 365 random days, I’ve made some commitments to myself. They’re not complicated:

I will try to remember that some pretty crappy shit has happened to me in this life so far and none of it has killed me yet. This disease is not likely to do it either (not even death by embarrassment).

I will stop judging myself and my abilities (or lack thereof) so harshly. It’s not the world that is ashamed of me, it’s ME that’s ashamed of me. I need to stop doing that. I walk funny. I stay in my house a lot. I wear pajamas a lot. I read a whole lot & go out a whole lot less. So what?

I need to give myself a break from all the judging.

I do need to try walking a little more. I do need to stop thinking of myself as no longer good for anything I used to be good for (I could make a list but some of those things would be pretty embarrassing so I won’t). I’m still good for a lot of things! The good hasn’t gone. It’s just gotten more inwardly focused and to be honest, closer to my center is not a terrible place  to be.

In 2018, I will listen to more music, laugh with more friends (either physically or virtually), try harder to be nicer to myself, stress less about how hard it is and how funny it looks when I walk around…I will allow myself to just be instead of wishing for how I used to be. I will eat more ice cream. (I figured I should give myself one easy resolution just to be safe.)

I will be where the good goes, for me, on good days and bad days.

I wish all good things for you, too, dear readers. My wish for you on this new year’s eve is that you find your good, wrap your arms around it and never let it go.

A very bright and dark Christmas

Some of my favorite memories of this very bright and dark Christmas holiday.

I’m sure it will come as no surprise to any of my readers that I was not looking forward to the Christmas holidays this year.

I mean, I’m not terribly subtle for one thing. I’ve been quite outspoken about the open struggle that has been my 2017. It seems like this year, that was supposed to have the promise of a new miracle treatment and a new lease on life for Bethybright, has been one disaster after another. I’ve gone downhill so fast, its left me dizzy. I can count on one hand the number of truly good days I’ve had since going off of Tysabri in January 2017. This Christmas was going to be the one when I could look back on the time that has passed since I was diagnosed just before Christmas in 2015 and say to myself, “Wow, these past few years have really sucked but it was all worth it because now I feel so much better and I feel hopeful for the first time in a really long time!”

Yeah. Or not?

Christmas is usually one of my most favorite things. But like many of my reliable favorite things of the past, it’s complicated now. Just like everything is complicated now.  I want to feel festive. I want to help with preparations. I want to enjoy time with those I love most but the simple truth is that just the act of leaving my damn house is a major issue these days and it’s really starting to get old.

It snowed on Christmas eve. I woke up to a white Christmas morning and it was beautiful and lovely and quiet. I lay in bed snuggly warm enjoying the simple pleasure of the overnight snow outside, the warmth inside, a cozy bed warmed by four furry creatures who are generous enough to share their body warmth with me. It was early, really early because that’s when those furballs wake me to be fed so I got myself out of bed, down the stairs and fed the kitties. Scooped litter downstairs and before heading back up to bed for a little longer to rest up for the festivities ahead, I peeked out the front door to look at the pretty snow.

I noticed, the lid had flown off of my tub of ice melt on the front porch. I  opened the door thinking I better get out there and put the lid back on before the thing blew away when I noticed that my front porch looked shiny. It was a solid sheet of ice, rippled, like tiny frozen waves, made by wind that blew through the night. I gingerly stepped outside in my outside slippers, carefully grabbed the ice melt bucket lid, very slowly tossing some ice melt across the porch and down the steps to my sidewalk below, shivering all the while because I’m still in my pajamas. I crunched back to the front door being a little less in mortal fear for my life and went back to bed.

It dawned on me, though, that I wasn’t going to be able to drive myself and my mom’s to my sister’s house where Christmas day brunch was to take place. My sister lives high atop the world’s steepest driveway, affectionately dubbed Mt. Doom. Any snow at all makes the approach to my sister’s house nearly impossible without 4-wheel drive. I was supposed to pick up my mother and head up to my sister’s but I knew if it was icy at my house, it was definitely icy at my mother’s house. I realized that I’d be basically of no help whatsoever for getting my 77 year old mother from her house to my car while also carrying the homemade danish pastry she had to bring to the brunch, across sidewalks made of ice. The truth is, my mother is almost more capable than I am but neither of us should be out traipsing around on icy sidewalks.

Change of plans. We needed transport. My sister has a Suburu that would have no trouble getting us up Mt. Doom, safely and with the precious danish pastries intact. Alex, my nephew, came to pick us up and get us safely to the Christmas feast. All good! Disaster averted. Having an amazing family willing to drop everything to make things easy for you is kind of awesome. And yet, there I was sitting in my funk, thinking to myself how much I hated the entire situation.

Something as simple as the weather can fuck up my entire day. I’m so unsteady on my feet that even a little snow or ice renders me basically useless. When it’s too hot, I can’t function. When it’s too cold, I can’t function. Low-key stress-free holiday fun all delivered without my help or support should have been perfect (and in many ways it was) but it bugged me that I wasn’t able to help with any preparations at all. I didn’t hang one single ornament or bake a single cookie. I didn’t do more than wash a few dishes, and barely a few. I did nothing. Nobody asked me to do anything, of course, because they all know that it will probably be too much for me whatever the ask might be. Hell. My only job was to get my mother to the brunch and I couldn’t even do that because I needed help my damn self.

Earlier in the week, I had a hair cut appointment in a busy part of town during the holidays. I was feeling ok that day, not great but not terrible (otherwise known as my general state of being), so I headed out not at all worried about the task. How much easier can it get? Drive to the salon. Park. Get into the salon. Sit. The end.

But it was the Friday before Christmas so people were everywhere  scurrying about getting last minute gifts or meeting friends for festive holiday drinks, doing what normal people do during the holidays. I couldn’t get a parking spot in front of the salon like I normally do. The only handicapped spot on the street was an entire block away but it was my only option. I hadn’t brought Stanley, my cane, because I’m still not accustomed to the fact that I’m likely to need him if I have to walk any distance at all. I stumbled the one block to the salon. I was dizzy and shaky. I could see people looking at me drunk walking down Butler Street trying to pass me because I was moving so slow I was barely moving at all, feet occasionally dragging. I made it to the salon but I was on my last legs. I knew I had to repeat the whole thing in the opposite direction again once my haircut was over. I sat there wishing my hair cut could take longer. I didn’t want to go back out there again. I felt so far away from safety. It was unnerving. Safety was literally less than a block away.

I love that people make things easy for me. From work colleagues to family members to friends and neighbors – I am surrounded by people who want to help make things easier for me. I am truly #blessed (and I’m not even being remotely ironic this time). I just want so badly to go back to being useful, a helpful, fixer of problems, solver of challenges, someone my people can count on. Not someone who my people need to worry about, cater to, work around.

It strikes me over and over again over this holiday break how my mother and I are oddly in the same boat though we are nearly 30 years apart in age. Neither of us can do what we want to do all of the time. Both of us move pretty slow because both of us are likely in some kind of pain. Both of us want to be able to do more and we’re both pissed off at the world about our current circumstances. My mother, a new widow learning to live on her own for the first time in almost 60 years and me, the 50 year old woman who woke up one morning feeling more like 75, has been consumed with anger every minute of every day since.

I want to have an answer when someone I love asks me, “What’s new?” My answer this year was probably better kept to myself but instead when my niece asked me that very question yesterday at Christmas brunch my answer came spewing out of it’s own accord, “Oh, you know. Not leaving my house a whole lot. Different body parts stop working every day. I haven’t showered in almost a week and I haven’t been around actual human people in weeks. I didn’t bother putting on makeup today because I knew I’d be too tired when I finally got home later to take it off. I look like a fatter, older, uglier version of who I used to be…so. I guess that’s what’s new.”

Geez. That was a lot. Nobody deserves that but there you have it. It’s very possible I should keep those kinds of responses to myself. They slip out. As if they demand to be heard and acknowledged. As if doing that might take their power away. Saying things out loud makes them not as scary, right? Not always, as it turns out.

Every year on Christmas morning before I head out to my family’s annual brunch, I watch A Christmas Carol alone at home in my jammies with a cup of coffee. I like the George C. Scott Scrooge the best. I cued up the movie on demand and enjoyed it again this year. It hit me about halfway through. I’ve been visited nightly by my ghosts of Christmases past, present and future and I want to be a changed woman much like Ebeneezer. Alas, I just keep being visited by the very same ghosts over and over and over again. Like they’re lost or caught in some kind of loop where everything bad is on repeat. And I keep waking up broken, slow, pained and angry.

My family went out of their way to make this first Christmas after my father’s death as good and happy as it could be. I am literally in awe of what my sister is capable of doing. She puts up like 5 Christmas trees! Thank goodness because I haven’t put one up in almost 14 years. My mom kicked butt too with her cooking, preparing, and generally doing more than any recently widowed woman should. My nephew Alex continues to be amazingly helpful and a source of actual joy. That kid is hilarious. Everyone was a joy to be around. I am so very lucky I am ashamed by how much I hate this entire experience. I want it to be over. It will never be over.

My mom had a tough time this holiday season. It broke my heart. It broke my heart even more to know that I am yet another thing she will continue to worry about. I am another reason why her mind can’t be at peace.

I had a wonderful Christmas. I really did and I am deeply grateful for all that I have and for the wonderful people I am surrounded by (including all of you, my readers). Yet, I am simultaneously also grieving. I’m grieving for my mother but I’m also grieving for myself. I’m grieving for what I lost, which feels like most of me, things I can never get back. I’m not sure what to do with that reality.

So, yeah. I’m a big holiday downer with a side of desperation. I have a trip to make for work in late January. I have literally no idea in the world how I’m going to make it happen. It’s lurking back there in my mind taunting me, telling me I can’t expect people to be patient with me forever. Hell, I’m not even patient with me! When am I going to finally wake up and laugh about this horrible dream I’ve been having?

When will I finally stop being so angry? 2018…you’re facing a lot of pressure. 2017 set the bar pretty damn low. Don’t let a girl down, 2018, ok? Don’t let a girl down.

I got a new foot for Stanley

That’s me. Doing what I do best. Thinking too much.

Stanley is my cane. I dubbed him Stan upon looking upon him for the first time. I use his more formal name when I’m displeased with him. You see, I never use Stanley because he’s kind of frail and not very reliable. But when it arrived, this new more stable foot for Stanley, it changed all that. The new foot for Stan is so much better than the little one I used to have. It feels more stable and more like I will be less likely to kill myself using Stan, so I may use him more. I may actually stop stumbling around without support when there’s no handy friend, family, wall or grocery cart to hang on to. It also makes Stan able to stand on his own without me holding on to him (independence is important to me in a man). It’s a good thing in all ways. Well. In most ways, really.

Such a good thing got me to thinking. As you know, that’s never a good sign. According to my Precious Cheryl, therapist to the stars, I think way too much. Certain old ex-boyfriends might agree. When I get to thinking, there’s not a force in the universe that can get me to stop.

Let’s use an enormous hyperbolic cliche of a sentence starter, here, to describe what my new cane foot got me to thinking about: My descent into a brand new, much smaller life continues. With no end in sight.

I’m not sure how I feel about that. Sometimes I feel completely OK with it. Sometimes I look around my new smallish life and I think, “Well, the truth is, this isn’t half bad at all. I have a nice place to live, I have snuggly cats that I love, family & friends that are crazy awesome and more than enough of most things I need.” None of that can be categorized as anything near bad.

Other days, I look around my new smallish life and I think, “What the mother fuck has happened to me? How can I find any joy in this existence? How can I accept the fact that there is more that I can’t do than I can on most days? How can I become OK with the fact that there are more days than not that I am un-showered, wearing comfy clothes (again) and not a stitch of make up and I truly don’t give a fuck? How can I live a life that is so very antisocial? I will miss people. I will miss laughing and drinking and dressing up to go out. I will miss it all.”

It’s all very dramatic and complicated and lets just face it, not terribly healthy. For once, I have experienced a turn in this life that I have literally no idea how to deal with. That’s also not entirely true since I felt much the same way the day I was told Chuck was taken to the hospital after collapsing at work. We all know what happened after that. I didn’t know what to do with myself after all of that insanity either and I behaved astonishingly badly but somehow life went on and so did I. This experience is so much the same and so much different. It has completely boggled my mind, plain and simple.

I had my two year MS-versary on December 1 and it came and went without much fanfare. I had to actually look back in my journal to see what day it was that my actual diagnosis came and there it was. December 1, 2015. I remember the holidays that year being in a Solumedrol-induced haze. My first time on the ‘roids. How grateful I was earlier that week to hang out, in a hospital, with one of my oldest friends from high school who came with me to the three-day outpatient infusions. I remember laughing, like not a single minute had gone by since last we laughed, when in reality it was more than 25 (closer to 30) years since we’d done so for three days in a row. I remember how she ran around the hospital looking for Lifesavers when the Solumedrol gave me that nasty metal taste in my mouth, also for the very first time. They were butterscotch Lifesavers and they were perfect.

On Christmas Eve a few weeks later, I wore green shoes with kitten heels (Fluevog of course) with a simple, swingy black dress (the harbinger of uniforms to come) and bare legs. It was unseasonably warm in 2015 in December and I remember being grateful that I didn’t have to navigate through snow. I remember putting on makeup before heading out with my giant bags full of gifts and thinking how everything felt the same but also completely different.

I can’t remember last year much at all. I guess I’ll need to go back to ye good old journal to see how I was feeling on Christmas 2016 but I don’t remember feeling very festive. Or maybe I did and I’m just projecting my 2017 melancholy on to that holiday memory.

Lately, I find myself uncomfortable around other people. I find myself wanting to be normal and not coming close. I find myself wanting to enjoy myself and laugh and be with friends and family – and at the same time, I find myself a fish out of water in nearly every one of those situations. Grasping for the strength or will or whatever it is that will make me feel anything like any of these people I used to know so well and at the same time trying not to let anyone see me grasping at anything at all.

In my old life, I could enjoy myself in pretty much any group of people. I loved being around people, being social, doing my social thing. Don’t get me wrong…there were just as many times that I felt outright antisocial back then, too, but I had the uncanny ability to fake it. These days, though, I don’t feel like I could even fake faking it right now. I’ve tried it a couple of times so far this season – like for my office holiday lunch and gift exchange – where I had such a terrible day physically speaking, the pain so intense, that I could barely focus on acting festive.

I felt like a bitter, sad, broken woman sitting in the corning flashing her best fake smile around a room of happy, healthy, festive people. That smile of mine probably looked more like a grimace and I knew it. I could feel it. I kept at the act for most of the party until I sneaked out when I reached the point where I couldn’t even sit without feeling pain. It made me feel like a failure as I stumbled to my car, just across the street to the hotel where I’d valet parked just a couple of hours earlier.

I read a lot this year. Thirty-three books so far. That’s one helluva lot of books. It will probably be 35 or 36 before the year is actually over. I read so much because it keeps my mind busy and away from thoughts about what’s to come. I also read so much because I just love reading. I resent this disease for intruding on my favorite things and somehow making them bad to me now. Things like staying home, being cozy, reading books and writing. I did all of those thing before my diagnosis and they felt good. Now they feel like giving up.

I’m going to tell myself what I usually do at this point in a time of so much discontent and that is simply this: it can’t last forever. It will get better. Things will even out or they won’t and my new cane foot that feels more stable will give me the ability to get out of my house (and my head) even on a bad day so I can accept whatever I need to accept and not give up. A stable cane foot can make all the difference, is what I’m telling myself today. It’s a little thing, but maybe it will help. Maybe something will help. Maybe something will change. Maybe I will change. But for the better, this time.

It’s all so cliche! Major life changes after a cataclysmic diagnosis (this felt at the time and continues to feel cataclysmic though it should probably not feel as such. I mean, there are lots worse things). Events such as this, though, typically create melancholy that runs its course at its own speed until it peters out into some kind of begrudging positive thinking that feels more like lying than anything else. But it’s better than feeling angry all of the time so one tends to give in.

I used to think about how lucky I am that this disease hit me after I had such an amazing time in my earlier life. How this disease hit me after I’d traveled, did impulsive things, lived for decades as an unfettered adult without a care in the world because I had no idea what was to come and I just wanted to enjoy it. That time I took a year off work and just…painted. And sewed and wrote in my journal. Those trips I took with my friends to tropical places. Those trips alone to various other places. Paris and Florence and Denmark and London.

How lucky I am that I had so many drunken happy hours when I laughed with my friends until we peed. The wins (and losses) in my crazy career in advertising. The men, mostly boys, who I allowed into my life, sometimes only to break my heart, until I booted them out again when I started to yearn for solitude once again. Or they booted me out and I thought I’d die then I never did and things went back to normal again. I’ve lived. I’ve lived a lot.

I’m not sure I know how to live now. No! This is not me saying I don’t want to live (I promise you), it’s me saying I don’t know how to live.

I keep trying to figure out how and what will make this new life happy again. Simplify/get rid of unnecessary stuff (check). Change routines (check). Eliminate unnecessary obstacles, (mostly check). Get a uniform (done). Slow down (like I had a choice). Alter perspective (Um…working on it). Ask for help (check). Accept help (check). I’ve done all of the things! I’ve taken all of the advice. Even the advice I didn’t know to ask for.

We used to joke, my friends and I, when I would ghost every now and then and have a weekend or a day where I just caved up, did nothing, and luxuriated in my solitude. They would say, “You’re spending time with your favorite person, aren’t you?”

And I would chuckle. I sure was. And I didn’t even care who knew. It was occasional, after all, a much needed rest from trying to be the happiest, most free, most successful, most full-of-life person I knew. That shit was exhausting. Who wouldn’t need a break every now and then?

So now it’s a disease that’s making my life exhausting. I have no idea why the reason for the exhaustion has such an impact on how I think about how to deal with the exhaustion. I have no idea why it’s so hard for me to accept that this disease has given me the rare opportunity to live the life I thought I wanted to live – the life with unlimited time for my favorite person.

Maybe I haven’t figured out how to allow this new, broken somewhat less shiny person become my favorite again. I’m so busy picking her apart inside and out, I never get the chance to luxuriate. I never get the chance to just be…me. The only way to change any of this is for me to somehow fall in love with this new version of myself, the way I did such a long time ago after having my heart utterly annihilated by the latest guy to let me down. It took time then. And it’s taking it’s good old time now! I’m just as impatient with the process now as I was then.

Everything is the same. Everything is different. Time is the only answer. Fa-la-la-la-la and all of that rot.

Been there, done that (and I’m so grateful)

You have. Not me. And I’m so grateful for the wisdom.

Here’s the thing.

We call multiple sclerosis a snowflake disease and with good reason. MS is never the same for any two people. Things that are major issues for me, may not affect your friend who has MS at all. And I will be the first one to tell you to shut your damn pie hole when you tell me about your cousin’s friend’s grandmother who runs marathons with MS because…just shut it. We can still be friends that way. But I digress.

Things that have never gone wonky for me, may drive you crazy on the daily. There are many symptoms I haven’t yet had the pleasure to meet. And no. I’m not stupid enough to actually write down a symptom I do NOT have. That’s terrible MS karma and I’ve fallen victim to it before. Fool me once! You know how that goes.

The thing that amazes me lately, though, is not how unique and special my disease might be but how utterly normal and mundane my MS is in almost every way. The problem is that nobody of the medical professional variety has ever told me, warned me, or talked to me at all about some of the weirder things that can happen, therefore I spend a lot of time with this soundtrack flying around in my mind…

“Is it MS if I’m in pain all of the time? Is it a muscle pain or a nerve pain? When I put my head down and get that tingly feeling down my spine, is that my MS? It’s not a pain, it’s more like a tingle, but people call it pain and I don’t call it pain, so maybe it’s something else entirely…Is it crazy that (fill in the blank) is happening to me or is it just my MS? WHY WON’T ANYBODY TELL ME ABOUT THESE THINGS?!?!? WHY MUST I GUESS AND GOOGLE UNTIL I THINK I MAY GO MAD?!?!?

This soundtrack is the background music to my life. It started even before I was diagnosed.

My ever-patient BFF and fave sidekick in life had to listen to me say things things like this out loud constantly in the year leading up to my official diagnosis. The one instance that is most vivid to me was when we’d be getting out of my car to walk into our bar for what we called “happy time.” I started to notice that when I stood up after sitting for any period of time, my legs would do a little shake thing. Like a tremble. Before I took a step toward the bar.

In fact, I know I said something really close to this because my BFF does this awesome thing where she writes down crazy things I say over the coarse of a year and then prints me up a book full of them each year on my birthday. I guess I say a lot of crazy things? Go figure. But one day as we went to walk into our bar I actually said something to her like, “I wonder why my legs do this little shake thing when I want to walk anywhere. I’m like a shimmy waiting to happen.” Or something to that affect. A quote something like that went into the book that year among other equally weird things I might have said in that 12 month span. It was like a foreshadowing of shimmies yet to come.

I suppose the doctors don’t tell you what to expect because they don’t want you looking for things to “blame” on MS. It’s kind of a mind-screw (to be polite) really. They make you guess what might be your MS until you can’t stand it anymore and you ask then they say, “Well, Maribeth, that can be very normal for people with MS that presents like yours with lesions in the blah blah blah area and blah blah blah…” I actually hear the blah blah blahs because I’ve gone mad with rage just thinking of the time I could have spent not agonizing about the symptom du jour.

That’s where you guys come in, really.

I knew this blog was helping me, mentally speaking, just to have a venue for the overwhelming feelings that bang around in my head, bouncing into each other growing larger like molecules turning into evil compounds along the pathways of  my broken central nervous system. Those thoughts have to be released somewhere if anyone is even remotely capable of dealing with the hot mess that MS turns our lives into sometimes. But there’s been a surprising and awesome upside I never predicted.

As it turns out, you guys are much better at the advice giving and symptom checking than Google or The Great Scott (all due respect to the Big G, and the TGS). You guys knit together random posts and thoughts and things I share, then you come up with a pretty damn good explanation and send it to me via IM or on a Facebook post and I feel instantly more calm knowing that I’m not actually losing my mind.

The most recent example was when one of my personal MS-gurus, I call her Joda (the Yoda of my MS). Joda and I have never met in real life. We didn’t even meet in one of the many MS-related forums and groups. We met completely randomly through a mutual friend on Facebook. The serendipity inherent in this “meeting” kind of blows my mind more than a little.

So, Joda knit together a few things that led to a place I’d never even considered before related to how my body functions (or doesn’t) in the outside world. Those seemingly unrelated but probably related things are as follows:

  • When I make it to work, I now require a special chair for supporting my head and neck because I’m in so much pain at my desk I can barely function. This chair has a neck piece and makes me feel like I’m the commander of the Starship Enterprise (or “just like that really smart guy in the wheelchair? What’s his name?” said my friend at work. “That would be Stephen Hawking and probably not the best comparison to make to the sometimes crippled girl.” And we laughed and laughed).
  • The new chair helps, quite a bit, but it still doesn’t alleviate the phenomena that occurs where by at the end of any day (even a good leg day!) when after a few hours in my office, I’m practically dragging my legs across the street to the valet, praying I don’t fall down before I make it there. Like clockwork. Weird.
  • Then there was the day I posted about how my trip to Target nearly killed me, as I pretty much became Frankenstein about 1/2 way through the store. I couldn’t keep up with my mom (who was with me and getting more and more concerned the longer she watched me lurching around). And again, by the time we were walking back to my car, dragging my legs behind me like big stupid wooden logs instead of my formerly functioning legs. It was a good leg day or I wouldn’t have even considered a trip to Target in the first place!

These things can’t possibly be related. I clearly am trying to make connections between random things that have nothing to do with each other, I tell myself. Not everything is about my MS!

Until it is.

Joda, amazing font of MS wisdom that she is, happens to mention very casually that there could be one thing connecting these phenomena that I never knew was even a thing! This one thing that might explain why my home is usually the place where my body feels the best (which isn’t saying a whole lot lately but you get me).

It’s the lighting! Joda tipped me off to the one thing all of these places have in common. The lighting. The damn bright, jarring, previously unpleasant but never energy zapping, light that is pervasive in all public places.

This artificial lighting, fluorescent and otherwise, in public locations can cause symptoms to flare up temporarily. Well shut my mouth and get me to Google…and lo, there were stories among the thousands from people who have similar experiences. People who are forced to wear tinted lenses or actual sunglasses at all times in artificial light. People who suddenly can’t walk halfway through Target (they actually refer to it as “the Target effect!”). People who have trouble with bright lights when driving after dark (ahem). This isn’t something new! People have been talking about the Target effect for years and years all over the interwebs and yet nobody thought to mention that to me at any of my visits to The Great Scott. I guess they don’t want to “suggest” symptoms you might never have?

Whatever the reason, every little bit of time that I can save trying to puzzle out if I’m crazy or if it’s my MS, every little bit of that time is critical because feeling like you might be losing your mind while you’re simultaneously losing some pretty important physical functions is a shitty, horrible place to live. Feeling like you might be losing your mind is one of the worst things about having a disease that is such a snowflake, sometimes, but at other times, not very snowflake-like at all!

Just tell me I’m not crazy and things get instantly better.

I know this is a big ask. Clearly, if you know me at all either digitally or in real life, you are well aware that my sanity has been pushed to all new levels of delicacy. I nearly lost my damn mind during my first relapse. I literally thought if I stayed one more day in that hospital bed, I could be certified insane and put into another, entirely different, kind of hospital. I can go a little batty trying to figure out what time to shower is the safest for me on a particular day because there are so many goddamn variables that my mind bends a little just trying to think through how to take a damn shower.

Telling me I’m not crazy, and not lying, is a stretch on pretty much every single day. But as soon as Joda shined the light, Kara jumped in and corroborated and then Google verified the masses and masses of people with MS who struggle with the very same thing, I felt a million times better. I know that’s also not saying much lately, but any better is still better.

On the downside, I’ve discovered yet another thing that I have to plan around. Maybe I don’t go to Target so much anymore. I’ve got Amazon Prime for most things anyway, right? I sat in my office in my Stephen Hawking chair in the dark last week and you know what? Even though there is bright glaring light all over that place, sitting in the dark with just the glow of a desk lamp actually helped my pain. It does bring up concerns, of course, that I’m now not only going to be the girl who looks funny and walks funny but now I’m also going to be THAT person. The one wearing sunglasses indoors.

Maybe it’s not entirely out of the realm of possibility that part of the reason I love being home so much of the time is not only that I can hide from the outside world of normal and very fast walkers. It is also because home is where I feel, physically, the best. I am in control of nearly every aspect of my home. Except the damn steps, of course, but I refer to those steps as my daily workout, so there’s that.

I mean, I keep wondering when it will be that I can entertain the idea of air travel again what with it involving so much of every little thing that is bad for my MS. I think sunglasses will be a must for travel to occur. Also, at my super brightly-lit giant corporate campus in Atlanta I will now likely have to be Sunglasses Girl with the Draggy Legs, but hey. My brain still works pretty damn well and I have always enjoyed being the center of attention before it was a medical thing, so maybe it’s OK?

Nah. I will hate everything about that scenario. But I can force myself to remember the many times one or a bunch of you proved to me that I am not entirely crazy after all, and I will feel a tiny bit better.

I’ll take any kind of better I can get these days. I’m so amazingly grateful for this network of wise MS friends I’ve made over the past two years since my diagnosis in December of 2015. I get kind of misty just thinking about it.

The Great Scott may be great, indeed, but you guys are the real miracle workers.

MS Life is Chock Full ‘o Irony

You probably already knew that. MS is a mean, relentless, ironic disease. It’s actually one of my most obvious observations since this whole wacky ride began almost two years ago this month. Well, two years ago in December anyway but close enough.

The things I’ve hated on about myself or thought were critical to my state of mind are the things aggravated most by my multiple sclerosis. So in essence, MS is working to make my worst fears actual realities. Here is but one of many examples…

My looks have always been way too important to me. I took vanity to some dizzying heights in my twenties and thirties. Hell, even into my forties, who am I kidding? It was the thing I always clung to as necessary for my happiness and sense of well being.  As a result, the second I’d been wronged or jilted in some way or when things happened to me in life that presented unpleasant challenges, I would immediately focus all of my energy on hating the way I looked. It’s my standard stress reaction, according to my Precious, Cheryl my therapist. Cheryl is rarely wrong. Because this reaction of mine is pretty much guaranteed. Something stresses me out? Something hurts me? Obviously, it’s because of all of my flaws.

There’s quite a few of those pesky perceived flaws. I’m not pretty enough, I’m not thin enough, I’m not stylish or cool enough, I’m not the kind of girl guys like, I have major hideous physical flaws. I catch glimpses of myself in any reflective surface and see what I believe is a real-life monster. I believe this to be actual truth (though Cheryl often reminds me that I have “broken eyes” that see things that aren’t really there when I’m stressed out…whatever, that’s just crazy).

In circumstances like this when I’m in that reliable downward spiral, when I become the monster-girl, there is one perceived hideous monstrous flaw that bothers me a LOT. It is the area of my upper back that I affectionately refer to as my hump.  It’s part of an entire upper-body focused twisted obsession wherein I’ve convinced myself that my neck is too thick, my posture is terrible and as such I’ve developed a roundness in my upper back akin to good old Quasimodo.

I refer to my hump often. My hump really ruins any dream I’ve ever had of being perceived as graceful. It’s round bumpy humpy-ness utterly ruins my profile. I loathe my hump. It haunts me.

Lately, since my relapse from hell I’ve developed some odd symptoms. I’ve been having a severe, burning pain in my hump which has never been attractive but had yet to have actual feeling associated with it. Now it burns like hellfire that requires me to ice it for any kind of relief. Pain relievers have zero effect on my burning hump.

The next weird thing I’ve been experiencing is an overwhelming thirst. Like, ten days in a desert without water thirst. I’m woken up in the middle of the night nearly every night with a mouth and throat so dry I can barely swallow. I’ve been drinking a lot more than a gallon of water a day. I’ve had to increase my 5 gallon bottled water delivery from 4 per month, to 5 per month and most recently I’m up to six 5 gallon bottles in a MONTH. That’s just insane. I live alone!

And finally, I have noticed a very strange, uh, re-organization of where I carry weight. I’ve never bothered much about my belly because comparatively speaking, it wasn’t anything to really worry about. Now I have a gut. I have a round ass face and a thick neck. My skin is weirdly dry. Try not to be jealous. I know it’s hard.

I was worried I might have developed some kind of serious condition like diabetes or thyroid disease (or worse). Isn’t one disease at a time enough?

My primary care doctor, Dr. Mackey, ordered a bunch of blood work for me so we could figure out what was going on before I saw her today for my annual visit. We talked about my hump pain, my amazing thirst, my roundness in unwanted places…and then we discovered something even more mysterious. My blood results were amazing. No blood sugar issues, lowest A1C in my life, thyroid levels normal. Normal. Normal. Normal.

And yet…searing pain in my hump, debilitating thirst, dry skin and all the rest. Even Dr. Mackey (kind woman that she is) said, “You do seem to have developed a roundness at your upper back that concerns me.”  A roundness?!?! She was medically acknowledging my biggest fear.

MY HUMP IS REAL! It’s not imaginary and it has been getting worse and guess why? Come on, I’m sure you’ve guessed by now…It’s likely to be due to something called Cushing’s Syndrome that is sometimes caused by long term use of high-dose steroids. You know long-term like over the last six months of my life. I’ve been on steroids 5, maybe 6 times? That includes my IV Solumedrol in the hospital that time. I get a small hit of Solumedrol with each of my Ocrevus infusions.

“Will it go away?” I asked her, feeling utterly desperate. “How do we get it to go away? Or make it stop growing?!?!?” I think Dr. Mackey could hear the desperation in my voice. I mean, I’m less than subtle as a general rule.

And then she said, “Well. You can avoid being on high dose steroids as often as you have this year but that’s kind of impossible seeing as your MS has been so incredibly active in the past 6-8 months.”

Um. Ok. That little piece of information is a giant chunk of suck. I can’t avoid steroids! Unless I somehow miraculously stop relapsing every few months, I have a future chock full o’ steroids. Unless the new goo suddenly kicks in and I suddenly start feeling like a real girl again (as if that’s likely to happen).

F.M.L.

MS, it turns out, is trying to ruing everything about me. My physicality, my appearance, my general ability to do basic tasks – and now, NOW, it’s going to mean I’ll likely be in constant adrenal suppression that will make my hump even humpier than it already is. Just when I was trying a new era, one where I try harder to  love-my-broken-body! Goddamit. I want to be nicer to my body, I want to stop resenting it so actively but damn if it isn’t really hard to love your damn hump. Humps are inherently unlovable. Trust me on this.

I’ve read that Cushing’s Syndrome is reversible. According to the Cushing’s Support and Research Foundation, “This process of weaning and wakening of the adrenal axis may take up to a year, and should be monitored by an endocrinologist or physician who has ample clinical experience with the process.”

Another specialist? Another “process.” When I see that word anymore I shudder. I’m not asking for a whole lot of instant gratification, people! Just a teeny, tiny twinge. Why isn’t there some speedy method of hump reduction? Is there ANY JUSTICE IN THE WORLD AT ALL?!?!?

So me and my burning hump will be trying to figure out how to wake up our adrenal axis (whatever the hell that is). Until such time that “process” is completed, prepare to listen to me complain about my damn firey upper back “roundness.”

Dr. Mackey is such an amazingly nice woman, but I cannot deny that I wanted to punch her in the throat when she used that word.

Maybe MS is trying to cure me, finally, of fatal vanity. Maybe MS is trying to help me re-focus on more lofty things like trying to feel good instead of trying to look good. Maybe it’s trying to force me to accept that it’s always been what’s inside that counts (even though I thought that was actually a thing people would say to unattractive girls when they felt sorry for them).

I’ve made a vow, a solemn vow, to try and love my hump (and all of the other objectionable things about this body these days). I don’t know if I’m up to this challenge.

But it’s either that or waking up my adrenal axis and that sounds kind of intimidating. I’m sure it involves a lot of kale.

Post Script:

Here are some good things that happened today to me and my hump…

– I went to the doctor AND to my office today, meaning I walked more steps today than I’ve been able to walk in a while and also remain upright. (1,701 to be exact…I’ve made it clear before that my expectations are really not that high.)

– I ate a giant healthy salad for lunch AND butternut squash soup. I’m so healthy! I also walked to get said salad and soup all by myself. Not very far, but still. It counts. I didn’t need a walking companion.

– I made some serious progress on experiencing life on the outside today, more than I’ve been able to accomplish in a good while. I guess that’s progress.

 

 

I’ve got nothing

So let’s try this thankfulness thing…

Usually my blog posts start as thoughts that I can’t get out of my head. I noodle and I roll them around until I virtually have to sit down and get it out before it drives me insane. Lately, though, my mind has been a bit dark. The truth is, I’ve got very little to say lately about my MS and how it’s generally screwing up my life, continuing to do so well past the deadlines I’ve imposed on myself like so many fake lines in the sand. The deadlines come. Then the deadlines go. Nothing seems to change. And the world keeps turning. Who wants to read about that?

I don’t even want to write about that (even though this blog would indicate otherwise).

I discovered recently at my second full dose infusion of Ocrevus that The Great Scott told my infusion room friend Marci that the magical superhero of DMTs that is supposedly the new goo can often take longer to “take” for those of us over 40. Well. I’m staring down 51 and I’m here to tell you, that shit is true. I actually felt worse after my last  infusion. It seems to be lifting this week but I had a weird bout of Frankenlegs today as I attempted to get myself to my first manicure in…months? I think it’s been months. So, there’s that.

I’m terrible at the gratefulness thing in the middle of this hot mess that my life has become. I chastise myself constantly. I tell myself it could be so much worse. I know this to be a fact and yet it doesn’t help me get all full of hope and light like it should. It just doesn’t. Maybe I’ve sunk a bit too low but the funny thing is, I don’t feel depressed. I feel some kind of weird apathy starting to grow that maybe I just need to stop fighting it so hard and start realizing that this is my life now. It just is! It’s mine and I should learn to love it, not be resigned to it, as I often feel I am.

In the spirit of the Thanksgiving holiday (where we celebrate the false story of pilgrims sitting down with the Indians all friendly like when in fact there was a whole lot of pillaging and killing native peoples by the thousands going on), I’ve decided to try harder at being less apathetic.

I like turkey. I like getting together with my family. I’m going to focus on this impending day as a chance to focus on my own little twisted form of gratitude.

Things I am thankful for…MS Edition

1. My amazing family, friends, co-workers, neigbors and various others who help me to actually live some kind of life that includes laughing, love and kindness. Without these various people…I’d be sunk. Thanks for keeping me afloat.

2. Nothing fills me with more gratitude than things being handled and thus no longer something for me to think about. Something for me to do. One example of this is the giant package of toilet paper that my wonderful sister got for me at Sam’s Club recently (even the thought of going to Sam’s Club makes my legs feel funny). She delivered it to my house. Every time I look in the upstairs linen closet I feel an intense sense of calm. Yes, you read that right. Massive amounts of toilet paper represent one tiny thing I do not have to deal with for a very very long time. Toilet paper has given me peace.

3. I’m grateful for my grocery store that delivers. I almost kissed the woman who dropped my bags inside of my door with nary an ounce of effort on my part. She was frightened. She was wise to be frightened.

4. I’m grateful for great health insurance and a great job that allow me to fund this insanely expensive disease. Drugs and doctors costs money, people. MS drugs and specialists cost even more. Thank god I am generally able to deal with that web of crazy as a result of this very important fact – I remain employed in a job I love. That’s huge.

5. I’m incredibly thankful for Cheryl my therapist who is attempting to keep me sane through this whole thing. Sometimes that takes the form of just giving it to me straight, like this past Tuesday when I said, “I’m trying really hard to see the silver lining here.” She replied, “Well, you should stop that because there isn’t one. This sucks. If anyone says it doesn’t I will fight that person.” And I instantly felt peaceful for the first time since toilet paper delivery day.

6. Dana B. my incredible hair girl is a gift in my life. I get an appointment with her, and I immediately feel better. I know that I will feel human again once she does her magic to my short-haired head. She will spin the chair away from the giant full length mirror that the chair sits in front of, when she notices me squirming at the mere thought of having to look at myself in my current condition for even five more minutes. Growing my hair, even a little bit, created a situation where my unwashed bedhead looked exactly like unwashed bedhead. This could not stand. Dana cleans me up and makes everything right again. I have workable bed-head hair again that some people even think is (dare I say it) cool! For that, I am incredibly grateful. Somehow, Dana makes even bedhead look amazing. Also her salon is one of my happy places. She just gets me.

7. I am thankful that I finally found the perfect pair of black leggings (thanks Universal Standard) as well as the perfect slippers that won’t kill me (thanks Glerups…yep that’s a thing). Also, since I spend a lot of time in slippers, I’m grateful for my Halfinger kitty slippers too (also not deadly). I can never have too many non-deadly slippers with kitties on them.

8. I’m grateful for Old Navy for making my favorite fold-over-waist yoga pants for years and years and years. Now that I wear them almost daily, and laundry involves many steps, I was most relieved to make this discovery. While we’re thanking clothing stores a big thank you shout out to American Eagle for my favorite uniform top the “soft and sexy t.” I do feel very soft (but not very sexy) every time I wear one of the 8 or 9 long sleeve black t’s I now proudly own.

9. I’m grateful that people write amazing books that I can read and forget about things for just a little while. I’ve read 32 such books so far this year and there’s still time for more.

10. I’m really grateful for the lovely woman who did my microbladed eyebrows. If not for this talented wizard, I’d be walking around eyebrow-less on days I don’t wear makeup which is most days these days. Nobody wants to be a picture without a frame. Some days, those eyebrows give me actual joy…I am shallow. And vain. This has long ago been firmly established but that was the best money I’ve ever spent.

11. I’m really grateful for all of you, out there, my digital MS family who are sometimes the only reason I don’t lose my ever loving mind on a daily basis. Your guidance, your stories, your advice and life hacks – your mere existence makes me feel less crazy. Someone else out there has pretty much experienced everything I have, often times all at the same time, and survived it. That is the only thing that can make me feel better sometimes. Plus, you guys are funny as hell.

12. I woke up this morning (already a win). I spent the day making yummy things with my mother, my most favorite person in the entire world (and I have a lot of favorites). She never fails to make me laugh. And we move at about the same speed these days though she is much more ballsy than I am. Nothing holds that woman back. I need as much of that in my life as I can get right now.

13. People that love me, enough of pretty much everything (too much of most things), a home I love, a bunch of kitty cats to keep me busy and calm all at the same time…

Ok. As it turn out, I am incredibly grateful for a whole lot of things. My life is awesome. Even with MS. Even with my funky walk, dirty hair and random dramatic falls. I am incredibly fortunate. I will try to remember that more often.

Happy Thanksgiving, y’all. May tomorrow be a good leg day, a great food day and full of all of the things that you’re grateful for.

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.