Monday, July 28, 2014

Speaking Of Spoons…

I have been looking for spoon jewelry for a while and finally found some that I like on Etsy from The Paper Poppy Store

Last week, I wore the necklace and earrings to work and one of my coworkers asked what my necklace was.  I told her that it was a spoon, that I have lupus and RA, and sort of tried to summarize The Spoon Theory and the idea of spoons as they relate to chronic illness. 

I decided to email her and my two other main coworkers, including my supervisor.  I told them that I was diagnosed with Lupus and RA in 2008 and that I try to educate people wherever I can.  My supervisor already knew about my illnesses, but my other two coworkers did not. 

My email read:

Today when X stopped by the office, she asked me what was on my necklace.  It was a spoon.  My earrings today have spoons on them, too.  I told X that it's in reference to The Spoon Theory, written by a woman with lupus to try to get her friend to understand what it feels like to have lupus.  You might not know, but I've had lupus and rheumatoid arthritis since 2008.  I really try to educate people as much as I can, and since I am working so closely with you all, I figured I would share The Spoon Theory with you:

One of my coworkers emailed me back to say that reading The Spoon Theory made her cry and that she is so grateful to me that I use my “precious” spoons to help others.  I was so touched by her response.

Maybe part of it is the fact that we work in patient advocacy, that there is some measure of understanding.  But I don't think I have ever been in a situation where I felt so good, not only about disclosing, but also about the subsequent response that I received. 

Since I am working so closely with these people, I feel that it is important for them to understand my situation, although I hope that they will never have to see me at my worst; but if they do, I hope they are at least a little bit prepared.

I find that trying to educate people can be exhausting, but in this case, I felt like I had the perfect opening and opportunity to broach the subject. 

And that openness and honesty was returned to me in the responses that I received from them. 

I’ve also realized that it’s really important to meet people where they are.  In this case, I met them at a very basic level.  A comment about my spoon jewelry led to a very meaningful conversation about the nature of lupus and RA, and some of the issues that result from them. 

I didn’t attempt a technical conversation about the major medical complications of lupus and RA, or the treatments used to treat these illnesses.  I tried to give them a basic idea of what it feels like to be me. 

The truth is, you never truly know what is going on in another person’s life unless you ask them or talk to them and learn about them.  I’m sure that when my coworker inquired about my necklace, she didn’t anticipate the depth of the response that she received from me. 

But I’m really glad that she asked, because it opened up a line of communication that may have stayed closed. 

The Spoon Theory has spoken to me since I first got sick, and I like being able to share something so valuable with others.  And more recently, I’ve started talking about spoons a lot, because they truly do make sense to me.   

And I love my spoon jewelry.  The necklace and earrings are a constant reminder to me of what I’ve been through, and my daily battle for spoons.

Monday, July 21, 2014

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.     

Tuesday, July 15, 2014

Sometimes Pushing Your Body Is Refreshing

My schedule has been pretty busy lately. 

In the last several weeks, I have started two internships, which means working 9 a.m. to 5 p.m., four days a week.  Being a chronic student, I have never really had to work a full-time schedule before.  So having a more traditional job is totally new to me.

Before I started interning and I had a little free time, I decided to push my body physically, and walked at least 10 miles in a matter of two days.  It was sort of planned and sort of not.  I went a little overboard. 

When it comes to work days or activity days, I don’t always feel it until I stop moving.  Like I can go, go, go, and the minute I stop, it all hits me. 

But even with that, I forged ahead.  Call it stupidity or tenacity or whatever word you find appropriate…

Of course it’s only good until your body bottoms out, which I knew it would.  But it took an entire week before it all hit me, and then I felt like I had been hit by a truck.

I was of course reminded that life isn’t as it used to be. 

And that my go, go, go and never stop attitude and behavior that I really prided myself in before I got sick doesn’t really work anymore.

It is nice to be able to push my body, to see what it can and will do…and what it won’t do.

I think it’s really interesting how we move through different phases of life and how we have to figure chronic illness into that.

In terms of pure physicality, I’m still learning my limits.  Obviously some days are worse than others.  I’ve also learned my limits in terns of social activities, which has taken a long time (which is the subject of another post).

And now that I am working a full-time job, there are new issues to deal with and balance (also another post).  Of course, I am fairly exhausted, so one of the first things that always seems to go is my exercise routine.

I’m still trying to figure out where and when exercise comes in, so I’m kind of glad that I overhauled it before I started working.

I think the only way to know your limits is to test them.  I really wasn’t sure what my body could handle, so I threw as much as I could at it.  And ultimately, I sort of regretted it.

But on the other hand, pushing it was kind of refreshing.  It made me realize I could do more than I thought I could, and it actually took longer than I expected for everything to come crashing down.

This is not something I plan to do all that often, but it is a good way to assess what my limits are at any given point in time.