And then you rest 


I had a crazy busy week. Long hours. More running around than I’ve been used to. So much going on at work that my head was spinning by the time I got home each night so tired that I’d crawl right into bed to prepare for doing it again the next day. 

So today? I’m off today. One of the amazing things about my employer is the number of paid holidays. We are closed the Friday before Memorial Day as well as Monday. I get one extra day without an alarm going off. Four whole days to get my head back on straight before it all starts again on Tuesday. 

Am I out running errands or exercising or socializing? No. No I am not. I’ve declared today an official day of rest and the universe rewarded me with a gray, chilly day with which to enjoy the crap out of, totally guilt free. I’d feel too guilty doing this on a sunny day. Me and my creatures are snuggled up with a good book. We may all just stay here until tomorrow morning!

I’m trying to get better at not beating myself up for not being super woman. I’ve said it before and I’ll say it again, my job takes a lot out of me. It exhausts my brain with the constant thinking, problem solving, management, maneuvering and strategizing. It now also tires me out physically from the increased amount of walking I’m doing in my new office space. I’ve also been trying really hard to get back to more of a regular routine. I can work from home and be quite effective. It just messes with my mind and lord knows I don’t need one more thing messing with my broken brain. When I’m there, I’m useful. And happy. 

But being there, in my office, has also allowed me to get back to loving my home. My personal sanctuary begins to feel like a prison when I’m cooped up in it by necessity, instead of choice. When it’s by choice, mostly, like today it feels good again. It reminds me that I’m happy here. That this is really one of my most favorite places to be. 

I’m beginning to see a light at the end of this long, dark tunnel that I’ve been in since diagnosis. I am beginning to see something that looks like a new normal. It’s not fully realized just yet. I still have to figure out basic things (like how to travel without wanting to die) but the things I love are starting to look like they used to again. 

I’m laying in bed, writing a blog post, snuggling with kitties and preparing to do a little reading. It’s exactly what I want to be doing. And it feels kind of great. 

The journey you travel after diagnosis is fraught with loss. Everything starts to feel like a loss after all the waiting and wishing to feel better. You start to wonder who’s life you’re actually living now. You start to wonder if you’ll ever just be happy again. 

I know better than to think I’m out of the woods. I know there will be days ahead when I feel bleak and hopeless, just as I have felt in the last two years. 

There is magic, though, when you start to let go. When you’re not beating yourself up so violently for doing what you need to do, what your body requires you to do. There is magic when you realize that your body isn’t a separate thing from you – it is you, it is your vessel and your home. If you take care of it more (and I’m not talking about eating right and exercising even though I know I probably should) instead of hating on it, it starts to stop hating you back. 

After my second infusion of Ocrevus this week, I jumped right back into my old routine. I felt slightly less fatigued. I kept up. I definitely slept a lot to fuel the pace, but I kept up. 

Me and my body deserve this day of peace. We’re gonna go now and focus on enjoying it. 

Life. Is. A. Lot. 

Today was our first day in our swanky new office space. That’s it above. Well. That’s some of it. It’s kind of giant. Much more space than we had before and amazingly technologically advanced and all shiny and new. The team was so excited.  It was a good day. 

It was also a long, hard, active day that required much planning for things I used to be able to take for granted. 

First, I’d planned a welcome party for the team and the fabulous group of support folks from the mother ship out of town who got us moved and up and running. We closed down on Friday at noon. We walked into an amazing new office where everything worked on Monday morning. 

It was a minor miracle. So we had a “welcome to your new home” breakfast and mimosas, thanks to our new office manager and all around awesome woman, Pam (that’s her up there in the picture). I didn’t have to do a damn thing but get into downtown Pittsburgh and park close enough that I could walk into my new office before the party began at 10am. 

This involved pre-laying out clothing (all black of course), showering the night before and bag packing to get my laptop back to the office. It involved figuring out how to put makeup on this face that is literally covered in some kind of rash or middle aged acne or plague (it’s bad). It involved every inch of my broken brain and quite a few spoons to accomplish. 

I did it. It may or may not have involved valet parking at the hotel across from my new office, but I did it. 

We toasted. We nibbled treats. Then I proceeded to move my office furniture around because I hated where they put my desk. My office has a glass door on the back and a garage door that opens on the other side. This means my back was either at the door or the garage door and I hated that. So I moved everything around. Myself. So my back could be against a wall. I sat several times in the process. My body is struggling at this point from the early morning planning and stress. I proceed to unplug and replug every electrical device on my desk – there are quite a few. I sit down in my chair with my back to the wall. I am victorious!

I hate it. It’s all wrong. I try to tell myself it’s ok as I head off to do the final walk-thru of the space with the project manager and the architect. But I have to pee first. This is when I realize how very far away my office is from the ladies’ room. It’s more steps than were in my entire old office. I have to circle the office to get to the ladies’ before heading to the front lobby to meet the architect. I have to pee really badly. Somehow I make it. It’s a goddamn MS miracle. 

We do the walk-thru. Paint this, replace that, this is coming later this week and those doors should be in by Friday…and my legs feel like solid lead tree trunks. I’m stumbling on our funky new carpet. They pretend not to notice and I am grateful. I get back to my office feeling relieved that I made it. The tour is done. 

And I have to pee again. Sigh. 

When I get back from my sojourn to the ladies’ I grab the architect who is rearranging various furniture around the space to his liking and I ask his opinion of my office arrangement. “I hate it,” he says. I hate it too. I move it all to the other side to face the opposite wall. I still hate it. Nothing fits where it should. I’m beginning to feel defeated. I think I sprouted a few new zits. I’m starving. Because it’s 1pm and I last ate two hard boiled eggs this morning at 7am. 

My bestie and I head down to the lobby to dine at one of two restaurants in the lobby of our new building. This is extremely handy since my legs aren’t quite operational at this stage. My luncheon companion is a true friend. She alerts me to the new blemish that has popped up on my lower cheek. I pick at it absently because it’s distracting me from how badly my back hurts. I’m doing this over lunch. I’m in a restaurant. I am disgusting. 

We have a great lunch after which I head back to my entirely wrong office and attempt to move the furniture around again. After a few tries at new positions, I flat give up and just start grabbing passers by to enlist their help. My team are a wonderful bunch. It took four of us but we finally got my feng shui to a place where my soul could feel at ease. At least for now. 

I stumble to the swanky new conference room at the other side of the building (again) to do a surprise conference call with an important client. I overestimate how long it’s going to take me to get there, so I just sit in the room alone and doodle. I can’t go all the way back to my office and all the way back here AGAIN and remain on my feet in the time I have left. When my two co-workers arrive to the room five minutes later, they both look at me kind of funny. I just shrug. This is my life now. They get me. 

The end of the day speeds by in a whirlwind of calls, emergency emails, a few more calls…a few more emails, trips to the bathroom and other minor walk abouts. When I finally realize I should probably text the valet to bring around my car because it is after 6pm and I’ve been out of spoons since around noon,  I shudder at how utterly ridiculous it is that I actually paid to valet park all damn day. 

I laugh at myself. Pack up my things. Walk to the elevators to head down to the lobby just as my car is arriving as if by magic or some kind of crazy kismet. But no, it’s because I paid a million dollars to valet park FOR THE DAY. Instead of thinking how ridiculous I am, I hop on in and proceed to head home with my bestie, my daily co-pilot. 

I don’t even care that I got caught in a speed trap on the way home and was presented with a ticket for $190 (and four points on my license) because I’ve learned something today. 

Who the eff cares? Who cares how overtly ridiculous I am? Who cares that I make outrageous plans, plots and orchestrations just to get through the damn day? Who cares that I paid to valet park and subsequently got a speeding ticket that is about the cost of my old parking lease? Who gives a good goddamn?

I’m lucky I have all of these options at all. Amazingly lucky. Let’s focus on the gratitude. 

I worked from 9:45am through 6:15pm and didn’t perish. I finally achieved decent office feng shui. I may have more zits than I had when I left the house this morning but at least I have good friends who won’t let me walk around with new blemishes on my face completely unbeknownst to me. (She knows me. She knows I’d have killed her when I got home and saw it for myself.) 

So I got a ridiculous speeding ticket! That cop ain’t gonna harsh my semi-comatose buzz. I may have come home and crawled right into bed before 8pm. But I did it. I got there on time. I remained on my feet when it was required. I made a festive toast and rearranged my office furniture at least seven times.  

Somehow that has to be enough. 

Life is a lot. Just getting through a basic everyday  day is a lot. But tomorrow is Ocrevus infusion day. My second half dose. Maybe now that I’ll be fully dosed for the next six months, all of this won’t be so hard in the near future. Someday I might be able to stay up and watch some tv when I get home after a long day. Someday I might even be able to go out for an after work drink or something nutty like that! 

It could happen. Until then, I’m just grateful for this awesome bed. It understands me. 

Meet my little friend

These things are supposed to be good luck, right? *shivers*
My post-Ocrevus experience continues this week in the days leading up to my next half dose on May 23 and I have to tell you, it’s been full of interesting little experiences.

I started out feeling pretty fantastic. I feel I should thank my good friend and reliable juice, Solumedrol. It makes some people feel like they’re possessed of a devil. It makes me feel like Wonder Woman. Go figure.

After that wore off, I was still feeling better than I had been during the infamous two-month flush so I talked myself into the value of trying to get back to something close to my “normal” routine. Mind you, I meant my normal post-MS-post-two-month-flush normal but still. I made it into work pretty well last week. I had kind of a slow and sleep filled weekend but I expected that after two days of playing a Normal in Real Advertising Life.

I knew I had to prepare both mentally and physically for The Great Office Move of 2017 where myself and my team will move to some pretty swank new office space, a few blocks away from our existing office. We’ve had such an amazing couple of years that we outgrew our existing space. Yay, us! We can talk another time about the irony surrounding the fact that two of the worst years I’ve had in my personal life have somehow resulted in two of the most successful years in my long (almost 30 year) career in advertising.

How does that even happen? Clearly, I have no idea.

This week, I raised the stakes on my return to normal. I made it to the office on Monday AND Tuesday before 10:30AM. I have been a whirling dervish of activity. Packing. Dealing with client emergencies. Packing some more. Attending big important meetings by phone. More packing. More functioning as a Normal Ad Executive would function. More packing. Repeat.

Today was especially full. I burned through the charge on both of my cell phones because I was on one or the other of them all damn day. I got a lot done, for sure, but at 6PM I still had three things on my “before end of day on Tuesday” commitments that needed to be done. And remembered I somehow ran out of dry cat food this morning. What kind of self-respecting crazy old cat lady runs out of cat food with every damn home delivery service known to humankind at her fingertips!

I almost can’t even.

So I take my last call of the day from the parking lot at my local Petco. I realize that I desperately have to pee (and for any of my fellow MS’ers out there you know that when you have to go, you really have to go). I walk awkwardly into Petco because I have to pee and because it’s hot. Also I’m tired and I forgot to take my second dose of Ampyra today. But I walk slow and pray the lady dam doesn’t let loose on the way.

I wheel my cart to the back of the store where the Petco has it’s rest rooms. I lurch into the handi-stall because I have the world’s largest backpack since I now have to carry all of my items on my back for ultimate balance and it sometimes sticks out far enough to make closing the bathroom door problematic. I hang my backpack on the hook, barely get my undies down (thank god I’m wearing a dress) when the stream flows like the mighty rapids of Ohiopyle flowing from my very person. At least I assume that is a fast-running river as think I remember being told by several outdoorsy people, of course, because I would never go rafting.

I’m looking down at the floor thinking how I might not stop peeing before the store closes and I STILL have three things to do “before end of day” and it’s now 6:20PM and that’s when I notice him. That guy! The one in the picture up there. He’s staring at me from between my Adidas cap toes.

Then I notice that the floor is moving. The floor shouldn’t be moving but it is because a previous customer in a damn hurry dropped an entire box of crickets on the bathroom floor. The box that contained said insects was on the floor thus setting its contents free. Previously doomed to be reptile food or something, these happy recently freed crickets were scampering all over the floor, willy nilly, trying to escape their cruel fate. Running their tiny cricket legs over my cap toes. RUNNING. ALL OVER THE BATHROOM AND MY FEET.

At this auspicious moment a friend’s voice came to me, in my mind, he came to me and said these words of warning: “You best get your white ass up and out the door of this bathroom. You’re gonna have crickets in your drawlls, sure as your sitting there taking the world’s longest leisurely lady squat.” (I don’t have to name this friend. You will know who I refer to because he’s famous like that.)

I wildly shook out my drawlls, gathered my belongings, hastily washed my hands and fled that horrible room flooded with tiny fleeing vermin to get my damn cat food and go the hell home.

By the time I got home, I realized I could barely walk.

My body had that “alive in my mind but dead in my limbs” feeling I’ve come to know so well after a long day of Provigil fueled speed thinking. I’d hit the wall. There would be stair crawling in my future. I could get the giant backpack and my Petco bags in the house, I could feed the cats. But I knew there wasn’t much more in me and I had downstairs litter AND upstairs litter to deal with. And three more things to do before end of damn day.

Crawling up and down stairs it would be!

This is all to say that even when I feel quasi-OK, and I fully intend to give my new-normal routine my well-intentioned all, I still have MS. I still run out of steam. The whole “mind over matter” thing only works for so long until the broken central nervous system says, “Um, nope” and your limbs just stop physically working as limbs should work. Possibly while being set upon by vicious crickets.

The silver lining here is obvious. I no longer have a fear of being attacked in close quarters by creepy crawly tiny critters who threaten to take up residence in my under trousers.

I also know I like feeling a little bit better. I like at least trying to try. I did a lot this week and yes, I realize that it’s only Tuesday but I did a LOT this week. This means a couple of new things in my new life…

  1. I will be working from home tomorrow. I know it’s not ideal. It’s move week. There will be visitors in from offices near and far to assist in the moving effort but I won’t be there in my physical form. I can’t do it. There. I said it. The world didn’t end.
  2. I will also be cranking down the central air in the Aspinwall office of Moxie, since it is supposed to be a balmy 90 degrees tomorrow with much sun. Since I can barely walk as it is, walking through the outside atmosphere, that to me feels like quick sand, is definitely not a good idea.
  3. It’s going to be OK. The world won’t end if it takes me a little longer to get back to my version of normal. I might never get back to my version of normal and for today, that feels OK. I can’t promise I will see it quite the same way tomorrow, but that’s just the way MS life is.

I learn slow. But I learn. I fully expect to have a cricket filled nightmare tonight. That might be the thing that actually does me in.

New flash: I still have MS

The eye roll emoji has become my favorite lately.
Here’s the thing: If you’ve had MS for years and you’ve gone through these early years of highs and lows and more lows and lower lows before and you’ve come out the other side with a more even keeled way of looking at the world and your disease, I envy you. I envy you a lot.

Being on this teeter-totter of symptoms, emotions, life crises, lost days, quasi-hopeful normal days, more frequent ultra shitty-shitty days is not fun. It’s hard to know how to feel from one moment to the next. Because I had a decent couple of days this week (now I am realizing that were very likely caused by my hit of that magical substance Solumedrol and not some fast-acting miracle of the new goo), I decided to try getting back to my old routine.

I went into the office three days in a row. I moved around more than I have been able to do in weeks. I showered and got dressed and went into work with clothes and makeup on. I felt weird, but OK, so I went with it.

I packed up most of my office in preparation for our office move later this week. I took a few walks down memory lane, looking at old pictures and remembering my 14 years so far with this company, fondly. I went home at night tired. I went back in the morning. I managed.

Here I am at the end of the week realizing something pretty obvious. I don’t feel that much better at all. I just fooled myself into thinking I did because I wanted to so badly.

I realized this as a result of two things that happened today that are undeniable evidence that I do, indeed, still have MS:

  1. Evidence the first: I managed to get myself to my MRI appointment at 7:45AM this morning without incident. I had to get this appointment in before my next Ocrevus infusion as ordered by The Great Scott, and Saturday morning at the ass crack of dawn was my only option between now and my next infusion. I did fine. I listened to the banging and the humming and the thrumming of that horrible machine for half an hour and then I was done. I got myself a post-MRI souffle (my favorite early morning treat) and came home to climb back into bed. And then I proceeded to sleep until 4:30PM.  I slept all damn day. I struggled to force myself awake because I knew I should. I dragged myself to Target to get a few things I needed but mostly just to get myself out of the house before I fell back to sleep again. Halfway through my trip to Target my legs started to do that thing they do – that shaky, heavy, dragging thing they do – and I was grateful to have the cart to hold on to. I had to rest in my driveway before unloading. I felt defeated.
  2. Evidence the second: A little later, I was emptying the Litter Locker on the second floor because it had gotten too full and I needed to start a fresh bag. I began my descent down the steps carrying my big bag of kitty poo, my bottle of water (always in my hand) and my phone (also always in my hand) and stepped down the first step…and promptly fell on my ass. I fell backward. Back on to the hallway floor. I dropped the bag of kitty waste (thank the good lord above that the bag didn’t break). I dropped my phone and my water bottle and landed flat on my ass on the floor. I just had to sit there for a minute to collect myself. Then I grabbed the bag of kitty waste and proceed down the rest of the steps. I had to go back up for my water and my phone. I couldn’t manage all of those things at once. I did NOT get hurt. I have ample butt padding that I really just sat hard on the floor, not really a fall at all, more like an unexpected sit. I just hadn’t planned on sitting on the floor so hard in that particular spot at that particular time so I guess it surprised me.

I came down to the living room and realized, I don’t have any energy again. I slept all day. I did almost nothing. And I am about to go to bed again. I wanted to paint my nails. I don’t have the energy to paint my nails. Or watch television. Or do any other thing I was going to do on this Saturday night. I am going back to bed and I’ve barely been conscious a total of four hours so far today.

It gets demoralizing, all of the hoping and having the hopes dashed again. It gets exhausting pretending to feel OK when you don’t, and wanting really really badly to get back to your old routine and then realizing that your old routine wears you out to the point of falling flat on your butt out of nowhere sitting, stunned, on the floor beside a giant bag of poop.

I know there is hope. I know I’ve only had half of one dose of the new goo. I know all of it. I just felt good-ish for a couple of days and it made me really happy to feel like that. Going back again, so soon, is kind of crushing. Like I keep getting reminders that I do, indeed, still have MS as much as I would like to pretend I don’t. Nothing works that fast, nothing really works to eliminate existing symptoms at all, really. It’s only going to keep me from getting worse.

I wanted to feel better so badly!

And that’s why I envy you, mature-in-disease-years MS people. I envy your level headedness and your long view. I envy your earned ability to take all of this in stride because you’ve been dealing with it for so very long, it’s just normal to you now. I envy your ability to frankly accept that no good day means ALL good days (just like no bad day means ALL bad days). I envy your ability to manage all of this and not let it get you down. You accept it. It just is.

My old life is too close in the rear-view mirror for me to accept all of this just yet. Objects in mirror are indeed closer than they appear.

I still fight it. I resist it. I don’t want to believe that this is just how it’s going to be now. Forever. It’s just how it’s going to be. No highs will last and no lows will be always. The teeter-totter is life. There is no adjusting. There is only accepting your complete and total lack of control over just about any little thing.

Sometimes I can. Sometimes I look at this and think…Well, we all have to learn this lesson in life somehow. I just have a disease to force me into it. Other people will have to learn it too because all control is an illusion. There is no control. I learned this once before. I am learning it again. They (the normals) will have to learn it too, someday, it just might not be as obvious to them as it’s happening, like it is to me. This is the single lesson of life none of us can avoid.

Taking the high highs and the low lows in stride is the secret to life. It’s definitely the secret to successfully having multiple sclerosis.

I am looking forward to being a sage old MS’er some day. Where I will look fondly at newbies like me and think to myself, “Ah! I remember when this was so hard every day. Thank god those days are over.”

 

 

 

Baby Steps

I’ve been wanting to have a minute to report in on my first infusion with the new goo, more formally known as recently FDA-approved multiple sclerosis DMT, Ocrevus. But I’ve struggled to find the time. Busy with work, busy with home, busy with…not feeling like utter shit.

I know. Crazy right?

I’m not going all ga-ga just yet. I know nothing can work this fast and the semi-human feeling I am experiencing these last couple of days could very well be the result of that teeny tiny dose of Solumedrol that they give you along with your first Ocrevus infusion.

The Great Scott, aka TGS my crazy brilliant neurologist, and I argue pretty regularly about my opinion of my body’s reaction to Solumedrol. He claims there is clinically no difference between the outcome/effects of IV steroids versus high-dose oral steroids. My personal experience contradicts this expert opinion (he really is an expert, that TGS, that is not at all sarcastic). But Solumedrol is like magic in my veins that makes me feel like a real human girl instantly – if only for a short time. Oral steroids make me feel like I’ve taken some bad speeders from a street dealer. So I’m not discounting the fact that the tiny dose of the magical IV steroid elixir I received on Monday might be contributing to this not-like-utter-shit feeling.

But it’s still a good sign.

It’s not like I’m not in pain today. I am. It’s not like I’m not tired today. I am quite tired. It’s not like my legs are walking machines looking for the nearest track so they can run a few miles or at least speed walk a few blocks. They are not.

But I did have two decent days in a row. Did I overdo it because it’s been so long that I’ve felt like anything but utter shit?

Well, yes. Yes I did. But it feels oddly good to be so exhausted. It’s the good kind of exhausted not the utterly defeated kind of exhausted. Yesterday, for example, I both changed the sheets on my bed (speaking of which, there is a really good reason why a girl who has three partially black cats probably should pass on pristine white bedding…ew) AND I took a shower to prepare for going into the office today for the first time in over a week.

It hurt. Don’t get me wrong. It hurt a lot. Halfway through the sheet changing my lower back was on fire and I had to sit a couple of times before it was done. But I did it.

I did an “and” and not an “or” and it did not kill me.

Today, I put on clothing and left my house for more than two hours! OK. By clothing, I mean the exact same outfit I wore to my client meeting on Friday afternoon, that consisted of black leggings, a black tunic and black tennis shoes but that still almost counts. And by leaving the house, I mean I went to work in my actual office location and not my living room.

But I was actively out in the world for more hours today than I have been in weeks.

I didn’t curse the sun. I left my house before 11AM. I wanted to hug every person in my office (I resisted because, well, HR frowns on that but I wanted to). I woke up with three new old lady zits on my face and I kind of just ignored them and remembered I have mad make-up skills and I covered those babies like a pro. I participated in several meetings and didn’t struggle to concentrate or stumble over my words (without Modafinil).I wore giant sunglasses. I sang in the car with the top down.

What? I told you they were enormous sunglasses!

When I came home, I didn’t crawl up the stairs after scooping litter on two levels of my house. I didn’t take the steps two at a time or anything and I went slow as hell, but I didn’t feel like the walking dead.

I will likely be in bed by 9PM tonight. It’s supposed to rain tomorrow. I love the rain. I hope it starts raining tonight so I can listen to it while I drift off to sleep.

Today didn’t suck. Thanks for that, today. I needed that.

Greetings from the Inside

The view from the inside on a prettier day.

Here’s some news.

On what is usually my favorite day ever, that would be hair day, I experienced the first bleach disaster I’ve ever had while in a professional’s chair. My hair was flying off of my head like feathers in the wind. I could see it coming off on the blue towel I was using after my hair was washed and rinsed. Not good. Not good at all. Even my hair stylist was almost speechless.

I reviewed every medication I’m taking (no connection). Did research on autoimmune disorders and hair issues (no connection). We did nothing different than we do at every other hair appointment for the last three years! It’s like a goddamn mystery.

I guess it’s a good thing I like my hair short? I guess it’s a really good thing I like my hair really short. I’m going to be really sad if this is the end of my platinum blonde phase. I know my magician of a hair girl will not let that happen. But that whole thing was traumatic for both of us. I hope we both can get over it.

I purchased an industrial sized bottle of Olaplex #2, the stronger kind that they use in the salon, and I’ve been dousing my head in it since this morning when I woke up and realized my hair was still falling out. I plan to reapply all night and tomorrow until I shower for pre-infusion preparation.

Infusion is Monday morning at 8am sharp.

I have to eat breakfast, pack a lunch, drink tons of water and maybe bring a blanket. I’ll be there most of the day. My friend Michele is driving me and picking me up because I’m getting Benadryl first to avoid any infusion reactions. Another friend from the infusion room had his first infusion last week and he said he felt like shit after and pretty much slept all day (probably from the Benadryl). I’m hoping to be back to closer to normal by Tuesday, but Wednesday is probably more likely.

I also found out that I need an MRI to establish a new baseline based on my JC virus status. I thought this new drug wasn’t a risk for PML but I guess they’re being better safe than sorry since it’s so new and they probably have no real data to say whether or not it’s actually safer for me or not.

I’ve been sleeping a lot this weekend. After a client meeting and a disastrous hair day yesterday I felt like the walking dead by the time I got home from the salon. I went straight to bed. I read some and surfed social media some. But I also slept a whole lot. It felt good. The weather has turned cooler again (like the universe knows I can’t bear the heat on top of everything else right now).

I feel like I’ve dropped out of life in the outside world for the last ten days or so. I guess that’s because I mostly have.

Maybe it takes dropping out of your life for a spell to actually make you want to live it again. There’s some logic to it. Dropping out of your life makes you miss things. Like people. And clothes and outside and driving with the top down. It makes you feel disconnected from the things that make you you so you find yourself wondering who you are now.

I’m starting to feel better about trying to drop back into my life outside once this treatment gets up and running. I’m so afraid of feeling worse. I might feel worse at the beginning, that’s just a fact. It might take a while. But it should ultimately make me feel a bit better.

Maybe once I’m feeling better I’ll be ready to drop back into my life again. Walk out the front door (even if I have to walk slowly or even give in and get a cane), but I could walk out the front door and see what’s what out there. Maybe plant some flowers. Or go out and have a drink with friends. Go back to the office and see actual people and do work in the actual world instead of doing work from my actual living room.

When I’m feeling better maybe I’ll reach that point other more “mature” MS’ers always tell me about, the point where this disease isn’t the first thing I think of when I open my eyes, the only thought behind every other thought that goes through my mind every minute of every day and the last thought I think whilst swallowing my handful of nightly meds before I go to sleep every single night.

The people who’ve had this disease for awhile tell me everything I’m going through right now is perfectly normal. They went through it, too. I appreciate them sharing that perspective with me more than anyone can really understand. The thought that this might always be the way I feel is not a pleasant one.

Maybe when I feel better I will remember how to enjoy things again, including myself. That’s what I’m really wishing for.

Less than two more days. Two more sleeps before the next seesaw of hope and fear starts up all over again. I hope this one is the one that takes. I’m really wishing that hope wins more often this time.

Moods

A few weeks ago when I looked down at my hand while I was typing some email or other, one of approximately seventeen thousand email I send in the average day I noticed this. This is my mood ring. And it is quite clearly 100% black. 

I made a joke about it. I may have even posted something witty on Facebook about it at the time but the memory keeps coming back to me on this the seventh day from the day I will be getting my first Ocrevus infusion on Monday, May 8th. My mood is rather black and I’m having trouble shaking it. 

This is always hard. Having MS is hard. There is no way around that simple fact. It’s hard to have your life all of the sudden feel nothing like your life. It’s hard to feel trapped in a body, and sometimes even in a mind, you have so little control over. It’s hard to watch other people who have this disease speak of their daily run or their upcoming plan to climb a mountain when you’re over here trying to figure out how to climb out of bed. It’s all hard. I knew it was going to be hard. I didn’t expect having a chronic disease to be fun. 

This is so much less fun than I ever expected it to be. I feel like the hours in each day where I am conscious and useful and enjoying life get fewer and fewer by the day. That’s because they do. Today I was awake a total of 8 hours. I will be asleep again soon in hopes of making it out of the house tomorrow to get to work. I can’t even begin to tell you how much I need to go to work. Not for the work. I can do the work anywhere. I need to go to work to see my people. The people who remind me why I can’t give up. That’s why I need to get to work. 

I knew this was going to be hard but I didn’t expect how afraid I would be of the concept of hope. I have been playing around with hopeful thoughts all day, dancing around the edges of my broken synapses, luring me into their grasp with stories of fatigue relief. “I felt like a new person!” Said one woman in one article. “I felt my steady downhill regression start to reverse,” said another lady who’s story sounded a lot like mine (diagnosed as an older person, not having experienced what felt like a real remission since diagnosis). Other articles spoke of improvements in walking! Nobody ever talks about that getting better. These aren’t quacks or some crazy web site shilling bullshit stories – this is coming straight to my email box from MS News Today, a reputable source with scientific back up and links to papers only my new friend Alicia maybe could understand. 

I have no idea what’s going to happen or how long this will take to kick in. I just know how utterly, completely and totally dependent I feel with each passing day where my hours in a day get shorter upon the idea that I just have to feel better. I just have to. This is no way to live. I can wait it out. I can do positive things like read and rest and listen to my declining body in order to give it what it needs at any given moment – but I am utterly desperate to feel even a tiny bit better. 

One night of super hot temperatures in my house reminded me of the long, hot miserable summer I have ahead of me. The summer that seems to start earlier and end later with every passing year. It took one night of that feeling of oppressive suffocation for me to think, “sweet Jesus. I won’t be able to leave the fucking house for months when the real heat kicks in.” How will I get through that? I will get through it but what will I be like on the other side? Who will I be after more time in my house alone and more inability to even play along anymore. 

The best most ironic thing? I love being alone. And this disease is ruining that for me too! I read articles that tell me I’m wrong for my love of my solitude. I read about how too much screen time is ruining my happiness and how I’m doomed, doomed, doomed unless I figure out how to get out there and live my life! What if you can’t make it out there? What if you don’t even really want to most of the time?

Seven days to go and I’m overwhelmed with the fear of being hopeful. I want to hope that this is just what it is, and just what I expected it to be…a super shitty time between meds where things were gonna get ugly and I was aware of it, I am aware of it and that’s all it is. When you’re in it, though, when you’re in your fifth consecutive day of sleeping more than 10 or 12 hours out of the day and resting the other hours that you actually are awake because it feels like your body has been up for weeks and weeks running consecutive marathons – you start to get a little wonky. You start to think, “Jesus Christ. What if it’s always like this?”

What if I’m never a marathon running, mountain climbing MS-er who posts shots of her Fitbit on Insta celebrating how many miles she got in today and how many cups of vegetables she’s eaten or how much she’s out here sucking the marrow out of life because, goddammit, MS doesn’t have her! I’m starting to feel like I’m failing at this too.  I’ve failed at being a healthy person and now I’m failing at being a diseased person. 

Stop right there. Don’t panic. I know what you’re thinking and I want to put your mind at ease. Rational me, the one who knows better, knows this is just the bad part. This disease is full of bad parts and this is just another one. They come and they go and then there are the times in between when you just get on with it anyway and that’s how it goes.  

Irrational me, though, the one who gets really pissed off when I can’t keep my eyes open during the day but I’m wide awake at night or gets super overwhelmed when one hot day makes me feel like actual piles of crap or who gets really fucking pissed off that my accomplishments for the last few days – my “vacation” days – consist of actually showering one time and doing three loads of laundry that were mostly pajamas and yoga pants…irrational me is just so over this! 

Irrational me is just over the whole goddamn thing. Because she can’t stop thinking, “Oh my god, but what if it doesnt get better? What if this isn’t just the worst seven days? What if it’s just how it’s going to be?”

Rational me will tick one more day off the countdown. Tomorrow it will be 6 more days in the two month flush – one more day closer to something new and hopefully something if not great then at least better than THIS. 

Six. More. Days. Six more days of moods that swing from black to blue to bright green and back to black again from minute to minute. They’re just moods. They’re not going to kill me. I’ve been through this before. I can do this. It’s ok to have hope that things will get better. 

In fact, it’s important as hell to cling to that hope no matter how silly you feel doing it. Rational me is a smart cookie. I should listen to her more often. 

(On the upside…my nails look a lot better than they did in that hideous pic above because I did them myself this weekend and I freaking love my mood ring! Sage Fox Jewelry on Etsy creates cool stuff that gives me joy – even when it tells me I’m in a very black mood. I am a child of the 70’s after all.)