Filtering The Can’t From The Can

While I’m just beginning my professional life, and therefore am new to it, I’m not as good at saying no to things related to writing, my blog, chronic illness, and health advocacy. 

But as far as social commitments go, I have become fairly good at picking what I can and can’t do.

To be clear, this isn’t simply an evaluation of what I want to do.  There are many things I want to do, but ultimately can’t or don’t do because they will either cause me to lose too many spoons, which will prevent me from doing other things, or I’ve already hit my spoon limit, and trying to do anything else would add insult to injury.

It has taken me a long time to get here.  There was a time when I said yes to everything, and often, at great detriment to myself. 

And it’s just not worth it to me. 

And there is still a part of me that really would like to be able to say yes to every social invitation that comes my way.  Saying no is something that I still struggle with, but it is never just a knee jerk reaction.  It is something that takes thought and consideration on my part. 

I know that not everyone understands this.  

It’s really hard when I get pushback when I know that I’m making the right decision for me.

And maybe some people view that as being selfish and thinking only of myself.  But when it comes to my health, everything else comes second.   

And maybe people questioning me when I say no to invitations is a New York thing.  I truly do not remember my life in Michigan consisting so much of running interference about the decisions I make in regard to social events.

And my decision is my decision.  If it’s an event that also involves my boyfriend, and I feel that I can’t go, he can always go without me.  I hope I’ve made this clear to him. 

My saying no and begging out of things doesn’t mean that other people have to feel sorry for me and not go or not do something in solidarity with me.  I don’t expect that from anyone, including those closest to me.

But I do expect some understanding that when I say no, it is truly, first and foremost, a decision that is more about my health and less about the specific event. 

As much as it’s hard for me to say no, I guess it’s hard for some people to accept that answer (and this is something that has happened more than once with different people).

And maybe on my end, it’s expecting too much.     

What It Feels Like…To Have Lupus and RA In The City

For some people, moving to New York City is the pinnacle, a true Cinderella story.  Not for me.  For me it has brought up a lot of issues that I didn’t really have to think about before.

In Michigan, I had a 10-block radius in which the majority of my life took place in.  Of course, I went beyond that, but it basically assured that even on bad days, I could get where I needed to go and get home, even if I was feeling pretty bad.

That’s not the case here.

I also have never had to deal with a commute before, let alone one that takes me so far away from home.

Some day I can tell my future children that I had to take a bus, subway, and train – over an hour commute – and then walk 25 minutes uphill to get to school.   

And let’s talk about anxiety.  When I first got sick and was diagnosed, my world felt totally crazy, so I began taking anxiety medication.  New York, by design, makes my anxiety worse.  It’s sensory overload times a thousand.

The subway is its own particular brand of anxiety-inducing.  Imagine what it feels like to be surrounded by darkness, in a metal contraption that is moving at high speed.  For me, I feel totally claustrophobic.  Not to mention the fact that the train tends to rock back and forth in such a way that you feel like you are on water rather than land.  Due to lupus, I have balance issues, which aren’t conducive when you have to stand up on a crowded subway.  Lupus also causes me to be very sensitive to smell – so I will smell something – and it will literally stop me in my tracks and make me nauseous.  Not a good thing when you are riding the subway in ninety degree weather. (I’ll let your imagination do the rest)   

And it’s just like who ever came up with the idea to stick giant tubes with wings in the sky?  It gets people where they need to go, to be sure, but it doesn’t have to make people feel good while it’s happening.

And the city is totally unforgiving.  It’s crowded and fast-paced.  If you can’t keep up, you don’t stand a chance.

When I get home at night, I get into the elevator, and I almost always collapse against the back wall.  I am exhausted to the max.  While other people might have energy saved up, my energy stores are beyond empty, and sometimes I wonder how I will be able to get up and function the next day.

In a city characterized by walking and public transportation, it doesn’t leave much room for those of us with health issues.  We are at the mercy of what is available to us.  The subways are full of stairs, and if you take them two at a time, you’re likely to be left in the dust.

I feel like I’m back in my first year of grad school in Michigan, when all I did was go to class, sleep, eat, and read.  That’s pretty much all I have energy for at the moment.   

And in the concrete jungle, my joints take a beating.  But right now it’s the mind-melting fatigue that I’m really trying to manage.

In general, for me, RA means mainly joint pain and fatigue.  Lupus brings with it nausea, dizziness, headaches, and rashes.  I sometimes wake up feeling like I’m hungover, like I’ve been hit by a truck, and flattened against the wall. 

Right now, we are living with my boyfriend’s dad until we find our own place, which means we have the luxury of a doorman and an elevator.  But my boyfriend tells me that every amenity adds to monthly rent, and that having an elevator can add up to $500 more to your rent a month.  I lived on the top floor of a three-floor walk-up in Michigan, and there were days where I would practically have to crawl up the stairs at the end of the day. 

I wasn’t made for this always-on-the-run, push-your-body-to-the-max lifestyle.  It isn’t me, and it’s not conducive to trying to manage multiple chronic illnesses.

In the city that never sleeps, all I want to do is crawl into bed.

Moving With And Packing Up Lupus and RA: New Beginnings And Bittersweet Endings, Baby Steps And Quantum Leaps

In preparation to move from Michigan to New York, I had to get rid of something I’ve been holding onto for the last five and a half years – all of the prescription bottles since I got sick. 

 They became, to me, what felt like the only tangible mark of illness. 

Just by looking at me, you probably wouldn’t know that I’m sick.  Aside from the litany of doctors’ appointments and tests and procedures, the only thing amiss is the fact that I take a bunch of pills. 

My therapist told me that someday, when I had the validation I needed, I would get rid of them.  And I guess, in a way, he was right.  I have a man in my life who has embraced me despite my illnesses.  And I am at a place in my life in which my life and my illnesses no longer seem completely like opposing parties.  I am more comfortable with who I am in spite of my illnesses. 

It was definitely hard to part with all of those bottles.  It felt like a part of me was going away.  But it simply did not seem realistic to take them with me.   And in reality, they were more of a crutch than anything else. 

In some ways, getting rid of those bottles feels a bit like leaving me with nothing to show for the last five and a half years of illness.   

 And it’s weird.  I sort of feel that way about the last six years that I spent in a PhD program.  All I have is a piece of paper.

And I got this key chain and card case.  I guess this is kind of my gold Rolex. 

But the reality is, I have so much to show for the last six years.  Maybe they aren’t tangible things, but I have learned so much, matured a lot, and learned what the important things in life really are.

And those things are just a key chain and card case, and they aren’t a ridiculous amount of empty prescription bottles.  There will certainly be more of those in the years to come, and I can certainly amass the collection again if I so desire.

On the other hand, it is in some ways liberating to be without them.  They were a big part of my life, but they weren’t the only thing.  So it was a baby step to part with all of those prescription bottles, but it was a quantum leap to move to New York City. 

 I have so much more to talk about – my move, what it’s like to live in New York City, and why I’m here and the wonderful, new adventure I am embarking upon.  So this is a quick update for now, but I’ll be back soon.