Don’t call it a comeback

I got cocky again.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Relationship status: It’s Complicated

Me, sitting on my back deck of the vacation house in St. John last year.

Of course, I’m talking about my relationship with the Sun. What the hell were you thinking?

Anyway. My complicated relationship with the Sun didn’t just begin with my MS diagnosis. It started a long time before that. The Sun makes for pretty days, it puts people in good moods, they smile more and generally become more pleasant versions of themselves.

Me? I find the Sun flat out oppressive. Maybe that should have given me my first clue that something was not-quite-right up in my Central Nervous System. But sunny days make me feel pressure.

I feel pressure to live up to their promise. I feel pressure to go outside. I don’t really like outside all that much. I know! You don’t have to tell me how weird that is or how nature is glorious or how you feel deep in your soul satisfaction when you commune with the earth…I get it. I really do. I just don’t feel the same way. Maybe because I’m never comfortable in nature. I’m extra wobbly on or in water. Hiking involves walking on uneven terrain and I don’t do so well on a perfectly smooth hardwood floor.

I hate to be hot. I mean what I say. I don’t just dislike it. I hate it.

This has made many people think I’m not only weird but also annoying for being vocal about my unpopular opinions about the weather, particularly sunny, warm and humid days. You know who you are! I may annoy you, I get that. You hate to be cold. Gray days depress you (I get that too…sort of, since I’ve recently discovered I also have an intolerance to extreme cold! I mean, thanks MS, you’re awfully thorough). You can’t imagine why a person of sound mind could possibly loath the delicious slightly damp hot air that pervades so many months of my life in Pittsburgh, PA, thanks global warming.

Let me explain how it feels to me when it’s hot, and even more, when it’s hot AND humid.

I feel like I’m slogging through wet cement. Lifting my limbs and making them move as limbs should takes herculean effort. I sweat more than the average bird and I feel like I am struggling to breathe. My hands and feet swell to abnormal proportions. My face gets splotchy and red. I want to join in your summery delightful fun, but my body is telling me if we try to do that we will surely perish. When it’s hot and humid my body goes into standby mode trying to conserve as much of its ability to stay upright as possible. You are having a ball! I’m trying to hold my shit together and not lay on the floor and just die.

OK. I tend to be dramatic but only a little bit.

It’s not just the heat that makes my relationship with the Sun complicated. It’s the bright, hopeful, sunshiny aura it brings along with it. It’s the promise of activity and fun! It’s the call to get out and be social, to suck up that delicious sunshiny life elixir, and generally behave like the best possible version of YOU that you can possibly be. You even look cuter! You wear fun sandals. You have a skip in your step.

You know what happens when I attempt to have a skip in my step? Well, I think you do. I skip myself right into being face down on the cement possibly bleeding from my head. I don’t feel cute on sunshiny days. I feel bloated and fat from the constant swelling in my extremities. I want to do things that make me happy – things like reading, sleeping, writing or even, yes, even working. But it’s nice out! I’M SUPPOSED TO BE OUTSIDE BEING HAPPY! I jump on Facebook and see no fewer than 99 different friends insisting I get outside and go for a walk, it’s so goddamn nice out!

Holy freaking pressure.

I had a super long, super active day yesterday at work and it was a lovely, if quite chilly, sunny day in Pittsburgh.

It was OK though. It was a really, really, good day yesterday! I had a first look at our new, larger office space a couple of blocks away from my current office. I managed to not only walk there, but I also managed to walk around the construction site, generally keeping all my limbs mostly under my control. If anyone noticed me walking funny on the way back to the old space, nobody said anything (yes, this eventful day involved visitors from the southern Home Office and from the giant French mothership so I had to perform these feats for an audience). We had to walk around our existing space and determine what would move and what would stay. By the end of the day, I was pretty much out of gas. But I had more to come.

I had told my favorite niece that I would visit with her before going home from work and help her decide what to pack for her upcoming European adventure. We were ordering Postmates take-out from one of our favorite local restaurants. There would be guacamole! There was talk of ice cream. And clothes! You guys know how I love clothes, especially when I’m choosing styling options for one of the most adorable young women I’ve ever seen.

I was kind of excited about the whole thing. I also knew it would be pushing myself too far. I’m sure my niece was fully expecting me to cancel. Let’s face it. If I make any plan with you to do something social and fun, there’s a 90% chance I’m going to bag out at the last minute because I’m too tired. That’s just the truth. Let alone on an evening after I’ve had a full day traipsing around downtown Pittsburgh trying to look like a normal. “Know your limits,” said someone who knows me really, really well.

But it was a sunny, happy day. It was an evening full of my favorite things and one of my very most favorite people. I was committed to making it happen if I had to crawl down the (extra very long) hallway to my niece’s apartment. I’m so glad I did! It was super fun. It might have been hard and it probably was too much after the day I had but I always put work first. I always say, “I can’t” to the fun stuff. I wanted to do the fun thing too. So, I did. I even got to take home some beautiful flowers and some left over guac.

I finally got home by 9:30PM. I barely had the energy to use a damn makeup wipe to take off the face I made myself put on in honor of my guests earlier that day. It was a struggle to get into my pajamas. I removed each piece of jewelry feeling like I was lifting weights. Feeding the cats and scooping the litter on two levels of my home took every ounce of energy I didn’t have left. I even did my favorite thing…I crawled up the steps to the second floor to get myself into bed.

And today, like a reliable curse, the sun shone like the giant ball of hope and optimism in a bright blue sky full of promise.

I had an interview scheduled at work. I had a day full of meetings. I tried to get my body to work like a body should, but I just couldn’t do it. I had to stay home. I had to sleep late (meaning I’d work late tonight, too, but that’s the way it goes). I didn’t have it in me to partake in the promise of this sunshiny, warm day full of happiness and promise. I had to look it in the eye and choose to go back to sleep. I rescheduled that interview. I did the meetings in my pajamas on the phone.

So, yeah. I’m working on my relationship with the sun.

I’m working on not feeling bad about myself for not loving it. I’m working on being OK with people thinking I’m no fun, sour or just plain lazy. I’m also working on figuring out how not to be sad about making the decision not to go on our yearly trip to St. John for spring break with my sister and the kids.

We’ve gone back to the same magnificent house for several years running. The picture above is from last year…it really is heaven on earth. As you would expect, St. John is chock full of sunny, warm days. It’s overwhelmingly beautiful.

I had to be honest with myself, though. It’s not as fun for me anymore. I did go last year and by all measures, I did pretty well. Considering. I needed help to get into the ocean (and then out again) but the kids were awesome about helping me. They all helped me carry things and didn’t ask me to lug heavy stuff on our daily trips to the various beaches on the island.

The house is located high up on a mountaintop and thus, has quite a few steps. I got super worn out from all the step climbing, the heat, the walking on sand and in water, the daily showering! Holy crap, I hadn’t been that consistently clean in a very long time. But a day at the beach must end in a shower lest you turn your bed into a sandbar.

It wasn’t like I didn’t have fun in St. John last year. I really had a ball enjoying the natural beauty I was surrounded by. But when I thought about doing it again this year, I had to admit to myself that my heart just wasn’t in it. I wasn’t yearning for ten days on the beaches of St. John. I don’t even know how to justify that sentence in my own head but it’s true.

I decided not to go this year. I felt good about that decision at the time but now that the trip is looming, naturally, I also feel a bit sad. I won’t see the sun set over Trunk Bay. I won’t eat peanut butter sandwiches packed for lunch or have coffee overlooking the beautiful Caribbean Sea or drink champagne with my sister on the beach at sunset, or read a good book on my back deck like I was doing in the picture above.

I will be here, at home, where the weather is changing back to spring with summertime looming in the distance like a threat. I will be trying to figure out how to not hate it, how to live in it, and how to not sleep my life away, how not to hate every minute when I eventually am forced to step outside. I will be trying to figure out what sort of vacation I’d find more relaxing and less stressful now that I have a different kind of life.

I will figure it out. I know I will. I will remind myself over and over again that I am still at the beginning of this MS journey. I’m still in the thick of the mess, the confusion and the adjustment. My body isn’t my friend right now but I have to believe it won’t always be this way. I will figure out how to be slow, quiet and cool – and not sad about it. I will stop beating myself up for feeling oppressed by the sun.

Want to know something really funny? I drive a convertible. Yes. The woman who hides from the sun has driven a convertible for the last ten years or so. There is nothing like driving with the top down on a sunny day. I call it “driking” when I drive through tree-lined roads near my house, looking at the leaves, enjoying the blue sky and the free feeling you get driving with the top down…

…with the air conditioning running full blast.