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.

 

 

When words fail the writer

Rest in peace, Daddy. You did good.

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

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

I remember that now.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Darkest Places (So Far)

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

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

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

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

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

And that is exactly what I did.

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

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

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

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

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

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

NOOOOOOoooooooooooooooOOOOOOOoooooooo!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Technical difficulty: LOW (or is it?)

A metaphor for life with MS.

So I thought today was a simple day. I had meetings all morning that were best done on the phone from home (whew). Then I happily noticed that it is indeed Tuesday, and based on my last post, my 3PM appointment on Tuesdays was even more critical than usual for it was with my precious, otherwise known as Cheryl, my therapist.

I woke up feeling dizzy again. I called Nurse Carol and begged for more drugs because more times than not this week, I get the dizzies then I get the sickies and that kind of puts a damper on leaving the house (which implies moving around which appears to be the thing that makes me even dizzier). I took my meds today since I knew there were more meds waiting for me at the pharmacy and I no longer needed to ration the glorious puke-killing pills. Another great reason to leave the house!

I was feeling shaky though so I decided to depend on my new friend Stan, my very sophisticated but simple black cane.

There were crews working outside at two houses across my street and I didn’t relish the idea of getting from my house to my porch to my car (a relatively low difficulty task) but there’s a rather longish stretch of grass to get to my car without a railing to hold on to – and, well. I wasn’t willing to face plant in front of two teams of remodeling men.

I used Stan. I got to my car. I turned on my car and realized I didn’t have my mobile phone (“Beth’s Iphone cannot be found” my car informed me)…Well dammit. I had to do it again – the low difficulty trek from my car TO my front door. My legs are now tired. Then it hit me…my phone was actually upstairs on my second floor. I had to climb the steps.

OK then! I can do this. I climb the steps on shaky legs, holding onto the railing to keep from falling, and grab my stupid phone. By now I’m running a little late for my very important date. I realize when I get to the front door (again) that Stan is looking at me from the passenger seat of my car. Ok then (again) it’s not that far! I can do this.

It was just about to the curve of stones that signify that I’m almost close enough to hold on to my actual car on one side and my actual house on the other side, when my legs kind of lost their will to be legs and I started to go down. Now, if you are a human who falls often (whether or not you are luckily enough to have MS) you know that there are good ways to fall and bad ways to fall. My friend Sandy throws her purse to the ground with great vigor as she’s going down. We’re not quite sure why (perchance to have both hands available for maximum impact support) but I’ve witnessed this with my own two eyes and it is nothing if not an impressive strategy. I have nothing in my hands but my keys and my iPhone. I panicked.

In no particular order the following thoughts raced through my broken brain;

  • omg I’m going to fall in front of not one but TWO teams of construction workers. IN MY FRONT YARD.
  • omg one of them might have to carry me to my porch like that one time that moving company guy told me not to worry when he attempted to pick me up – “I was gonna move couches all day, lady, I think I can handle you.” Um. Right. So not a compliment, dude but thanks anyway.
  • OMG I AM GOING TO END UP BACK IN THE HOSPITAL THIS CANNOT HAPPEN.
  • omg I am going to miss my appointment with my precious and this also CANNOT HAPPEN.

My lizard brain took over. My feet started some bizarre combination of random jump moves that may have resembled someone having a fit and trying to tap dance simultaneously. At the very same time, my arms begin to windmill because somehow, my obviously broken brain thinks this will help save me.

My arms and my legs are now moving in many directions all at the same time trying to keep my face from hitting that little strip of craggy concrete that is my driveway. From my mouth is coming a sound something akin to a squeak, or moan, or some animal noise that I am trying not to make too loudly so as not to attract the attention of the teams of construction workers.

I didn’t fall.

It was a goddamned straight up MS miracle. But I didn’t succeed in not attracting the attention of the construction workers at both houses who commenced to applaud. Had this been an actual Olympic sport, I’d probably  have seen them hold up cards giving me low scores for technical difficulty but all 10’s across the board for artistic interpretation of falling on your ass in your own front yard.

I get to my car, my heart is racing and my hands are shaking. Stan looks at me from the passenger seat and practically laughs. I text Cheryl to let her know I am on my way but I may be late because I had yet to pick up my drugs at the pharmacy and I may or may not have legs that will allow me to both get to the pharmacy AND TO  Cheryl’s office. I suggest we might have our session by phone.

Not a second goes by when I get a response: “Oh my…and what’s worse (not really) I’m in Paris, mon amis.”

Um. Yeah. She definitely told me about this. She planned this trip as a re-do of her birthday celebration that she was not well enough to enjoy when it had been her actual birthday. I’ve told you before that Cheryl, also by coincidence, has MS. I cannot tell you which milestone birthday she was celebrating because she’d probably fly home right now and kill me, but rest assured we had discussed this schedule change in our last session (you know the one? I cried for an hour straight).

I knew damn well about her big trip to Paris. We talked about my own trip to Paris not that many years ago. I completely forgot all of those details until I got her text.

I took my life in my hands for nothing. I walked like a hard core afternoon drunk into the pharmacy to get my drugs for the dizzies and the sickies. I just couldn’t wait for those drugs. Those drugs are currently vital to my days and nights. Then I had to conquer my fear and get myself back in my damn house taking the opposite path as pictured above without once again providing several construction crews with yet even more comedic material.

I take so much for granted. I just think…of course I can do that! But when I can’t? I really can’t. There is exactly zero gray area. The problem is, it’s also impossible to know when my legs are suddenly going to turn into useless, twitching lumps off uselessness. It kind of just happens. And here’s the kicker! Stan doesn’t really help. If he did, I would take him with me everywhere I go! But I did use him when I got back home again and I was concentrating so hard on how to walk with Stan in my hand, that I almost straight up tripped up my front steps. Thank goodness for that very sturdy (and quite pricey) wrought iron railing I had put in a few years ago.

I’m really ready for my next infusion, thankyouverymuch. Bethy Bright could use a break that doesn’t involve one of her legs or facial bones. And there. I probably did it again. I cursed myself by complaining, acting as if things just couldn’t get any worse. Believe me. I know they can and in a blink of an eye. I see your posts and comments about sudden symptoms that have you not able to walk at all! It can always, always get worse.

But here’s to hoping that I will still have it in me to find the humor in those situations when it does get worse. Cause I still have moves. As it turns out.

Tales from the puffy village

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

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

Mostly.

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

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

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

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

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

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

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

At what point do I simply cease to exist?

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

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

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

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

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

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

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

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

Remember the hospital? Exactly. Shivers.

Every. Freaking. Time. 

Every freaking time I decide to put on clean pajamas no more than an hour afterwards, I have the urge to sneeze violently and thus pee myself a little. 

Not so much as to douse my clean pajamas. But just enough to make sure I have the feint smell of dried old lady pee hanging on me until I decide to give in and put on another pair of clean pajamas and then wait for the same thing to happen all over again. 

The laundry pile grows higher with just slightly peed upon pj’s and I try to justify not adding to it by telling myself, who the hell cares if I smell a little like pee? The cats don’t seem to mind. I have to be honest. I barely even notice it. I realize that the battle between being slightly damp and having the energy to tackle that giant pile of laundry will inevitably be won by my desire to just go the hell to bed. 

The thing about cliches is they exist for good reasons. The one about the dotty old lady with a bunch of cats who wanders the world smelling faintly of piss? Yeah. Well, as it turns out, it’s pretty goddamn reliably accurate. 

It sucks to become a cliche. I suppose it happens to all of us one way or the other. 

That said, I better remember to call The Great Scott to let him know that I’m not sure that bladder drug he has me on is working out so well. 

It’s always freaking something.