My New Life as a 90% Normal Human Being: London

Since my move to London, I am entirely positive I have experienced every emotion one (semi) stable person could ever experience. My days have spanned from desperation, frustration and anger to overwhelming happiness to the point of tears.

Regardless of the emotions, this transition seems to be a very good move for me. Admittedly, I am overwhelmed. I am overwhelmed by anything and everything. When you go from literally laying on your back, stuck in a house by yourself for 2 years in the middle of nowhere to starting a masters program in a new country with old and new friends, semblance of a love life and everything else that comes along with it, things tend to be overwhelming. I can't deny between moments of pure bliss have been complete panic attacks and existential crises. But I think any "normal" person with my given conditions (both general and medical) would.

But, none of that matters. I am grateful. I am grateful every time I would out of my gorgeous flat and turn a corner and find myself among some gorgeous architecture or a museum I've never seen before. And I am proud of myself that I got this far. Reflecting on the last two years has not been easy. Rehashing every dark thought I had previously assumed I buried and repressed has been forced out. Turns out I'm lot less together than I thought I was. My doctors have been spectacular. Yes, doctors--all 6 of them. One for everything. Did anyone know that's not a cheap thing to do here...casually have 6 private doctors? Turns out the NHS does not cater to the chronically ill.

London is clean, quiet and (aside from not being able to ride the tube) let's me live at my pace. I don't feel hurried like I did in New York. People are generally friendly and open-minded/progressive about disability.

I feel like I also need to mention the support I've received not just from school, but specifically the people in program. My course leader suggested I share my story with a few people, so I posted my Huffington Post article within our own Facebook group. The feedback has truly humbled me. No one pities me, puts me on a pedestal, or a freak--I am just treated with respect, like a normal human being and, psychologically, that has made a big difference. No one cares (in a good way) that I am disabled- I am just part of the group. Not always feeling the need to explain and letting people just accept me the way I am has been such a relief.

Regarding my pain, there has, of course, still been flares and they never come as a good time (but then again, when is a good time?). But, now I have a handy bag of tricks for literally everything and it's not so bad. My doctors are prescribing all my meds. I am working out my injections. I have had some interviews/meetings with some MAJOR companies. I am also going a group project related to disability, so of course I will be talking about that when it's all done!

Sometimes, I can't deny that I am even astounded by how far I've come. I was just explaining to another person in my program that 2 years ago, I couldn't sit in a chair for more than 10 minutes without bursting into tears from pain. Now I am sitting in chairs for 8 hours, maybe not every day, but I'm getting there. My life has come to as close to "normal" as it can and I am just enjoying it. Of course I am still and maybe will always be somewhat in pain all the time, but now I am making it work to adapt to my schedule and not the other way around. Tomorrow is a sushi party with a few girls from my program (+Cards Against Humanity and Twister---which is made for EDS, FYI), Saturday possibly a date and Sunday is brunch with an old London-born FIT friend.

Once I get a few big projects out of the way, there will be more time to write and more to come on HuffPost. I have so many more tips and hints. I think I have enough information to right a novel at this point...(publishers, feel free to email me.)

All for now, 2:40AM.

xx, E

Checklist to let your friends/family know how you're feeling..

Sometimes I find it hard to explain to friends (especially new ones) and family what kind of day I'm feeling, but this list lays it out nicely.

xox

Why Telling Someone Who's Sick "It's like you're on vacation." Is Never Okay

Ah, the naïveté of the "normal".

First, let me just say that referring to my (or anyone else's for that matter) medical leave as "getting a break" or "being on vacation" is straight up dumb. To the outsider, I'm sure it seems like I'm probably doing nothing all the time, but it is quite the contrary.

I would love to be on vacation. But guess what? Even when I would get a vacation, I don't think I would ever actually be on one, if that makes sense. I would love to temporarily (or permanently, obvs) remove myself from my pain and perpetuating factors to actually relax, enjoy myself and not feel uncomfortable. That would be awesome. When I will fly to London, I will now have a wheelchair, special accommodations and seating, extra drugs, carry ons, etc. Planning this flight alone has been exhausting/pain in the ass.

Like today, for example, my pain and GI issues were so bad that I have been nauseous, dizzy and spasming all day. I heard the weather was nice. I wouldn't know since I didn't get to leave the house. And more often than not, this happens pretty frequently. And, like I've said many times before, I have pretty much no medication to help with my pain.

"Normal" people---when you have the worst kind of flu for 2 weeks, do you truly feel like you got a break or had a vacation? I would imagine between the fatigue, muscle aches, nausea/vomiting, fevers, etc. that you would probably say no. Keep that in mind when you're talking to someone with chronic pain.

To be honest, through all the hard work I put in before having to move home--between working, school, internships, etc. this is single-handedly the most exhausting full time job I've ever had. Even things that used to be enjoyable (ie. going out with friends, actual vacations, dating) are just stressful and generally miserable. Most of the time, physically, I am miserable.

Rant over.

PSA To All Friends

Alright, people. This is another one that desperately needs to be written and understood.  I'm very sensitive to my friendships (or at this point, lack thereof, in this case) but have generally taken a new approach. To me, I'm not sure if chronic pain is isolating in and of itself, it's often the lack of understanding that (at least for me) makes me feel alone sometimes. Sometimes the lack of empathy is more unbearable than the pain itself, like you're living in a state that is so entirely foreign and inconceivable to most people--and that is what makes it alienating.

Good portions of my day are usually spent being guilt tripped by friends that I haven't seen them, haven't FaceTime-d them, never call, never text, etc. Before I always felt the need to apologize and explain myself but most of the time now, I am so sick of constantly having to explain myself. People don't realize the fear--the fear of being judged, the fear of not being understood, the fear of feeling vulnerable. That fear strengthened my relationships with very close friends and loosened my ties with acquaintances.

In my worst pain, all I wanted was to be distracted. I wasn't capable mentally and physically of contributing to conversations and constantly explaining to friends and family what my pain is like, the current updates on my health and hearing the (mostly) senseless feedback was unbearable. (Keep in mind, for most of my grueling experience with pain, I had gained weight that I am slowly losing and compared to what I used to look like, generally feel like I let myself go--my hair and make up is never done. I dress for comfort now mostly.) Sometimes I avoided people entirely because as nice as it is sometimes to be asked how you're doing, it can also be a pain in the ass if you're being asked 15x in a row. I already do this with doctors almost every day.

Some people who will remain nameless have taken it personally that I haven't tried to "rekindle" relationships with them since I've been home. The best response I have to this is that it is nothing personal. I am generally so overwhelmed by all the things I have to do and am so exhausted that old friends unfortunately get passed to the wayside so I can maintain the friendships for the friends who aren't just "checking in" but calling me every day. To me, the people who loved me at my darkest, are the ones who I prioritize.

Here are several things that need to be known:

• In general, I would rather hear about you. Your day, your funny experiences, etc. than talking about my health problems. I generally feel uncomfortable having to explain myself and for some people, it's just too damn sad, so at the risk of making it uncomfortable, let's keep it about you. Or just send me funny things. I always appreciate it. No one understands how god damn boring this gets sometimes. I generally try to "shield" people from how bad my pain really is.
  
• If I cancel plans last minute, it is never because I don't feel like coming. I am in my house, doctor's offices or volunteering for a good percent of my day, so if I can handle it, I always want to go out. Some people are really good about this and some obviously aren't. I've just decided I can't feel bad about making decisions that may affect other people. I'm responsible for myself and need to take accountability for my actions. No one understands my body like I do, so I have to make judgement calls...whether it upsets other people or not. 
  
• Sometimes it's hard to explain this but I try to explain to people that my days sometimes feel like a shitty, charged iPhone. I have limits. There is only so much I can do every before my battery dies and everything takes some battery life. Especially those moments when you think you have 10% left and all of sudden you're at 2%. Sometimes this becomes an anxious social situation.  Situations where I am out with friends, I haven't drove--I have no control. I don't live in a city and if I need to go home but can't, I panic. I avoid these situations as much as possible. 
• Having a "good day" doesn't mean that I'm better, just means that I am having a good day.
• I've cut out a lot of friends and family that caused me grief and frustration for the better. It wasn't easy cutting ties but I do not have the emotional and physical energy to deal with drama, shit talking, etc. And as always, if anyone has any discrepancies, tell me to my face. Trust me, my skin is thick and I can handle it. I would always rather find out from the source than backhandedly. PS. Tell me if you're uncomfortable with my situation. These are things I need to know about. I have no patience with toxic behavior and am shameless to tell you so if it gets that point. 
  
  
  
  
  
  
• Even if I'm smiling and looking like I'm having a great time, there's a good chance I'm screaming internally. If I need to leave right at the end of a dinner or cut things off early, again, nothing to do with you. 
  
• Clubbing is never an option anymore. Do not even try to ask me to go dancing. It will never happen. 
  
  
  
• When I say that I can't be cured or that I'll never be healthy, I'm not trying to be negative. Like I've said before, my life is not CrossFit. I have boundaries and limitations. This is my reality and I've come to terms with it. I've accepted it. I hope others do too. 
  
• This needs to be reiterated but making plans is HARD. Other than doctors appointments, it's hard to truly keep anything. 
• Like most people, when I say "it's fine", it's probably not. I have an amazingly stoic face when it comes to pain in social situations that pretty much only my parents can recognize as a red flag. 
  
• Even the nicest people have their limits. 
• Don't be offended if I forget things you've told me. When my pain is bad, my memory can be extremely foggy and my short term recall is really bad. Most people refer to it as "fibro fog" and it's a real thing. Google it.  
  
• I don't want to be known as "the girl with pain". I want to be normal and treated like everyone else. I still want to be invited to things. I hate to play the pain card and truly feel happiest when I'm in a "normal" setting. 
• Just because you see me posting online, doesn't mean I'm feeling better. Sometimes I am in a ton of pain but my choices boil down to sitting and crying or distracting myself. 
• I always try to be in a good, positive mood but sometimes when you're running on no sleep with lots of pain, it compromises your mood. 
• Sometimes I just don't want to do anything with anyone. Or talk to anyone. I need my alone time. 
  
• My love life is sad right now. It's incredibly personal to me and something I plan on working on more when I move to London. I am still trying to figure out how to have as normal a relationship as possible. It'll take me awhile. Until then, don't bother asking if I have a boyfriend. 
• If I'm with you and we're meeting someone I don't know, my medical issues don't need to be brought up in the first five minutes, or at all. 
• Small, thoughtful gestures mean the fucking world to me. Actions always speak louder than words. 
• People that have known me forever have known me as an extrovert and that is changing.  Dealing with chronic pain drains me every day. 
  
• I naturally have a really hard time saying no to things and turning things down, please don't push me into doing more than I can. 
• Be open minded. 
• Even if I'm having a bad day or a lot of pain, your problems are still valid to me. Never think that because my problems seem more serious that I don't want to listen to yours. I never purposefully try and make it a competition.
• There are some things more than other that are hot buttons for me. And you'd never know what they are, but if you push one by accident, I don't mean to overreact. But it does happen from time to time. 

I know some of these things are probably related/redundant or hypocritical but I still struggle with figuring out what I need from my friends and family sometimes. 

I hope people understand that I never intentionally try to discuss my health for pity, sympathy or attention. I wish people could understand that dealing with this is just a big part of my life, whether I want it to be or not. I try really hard to help people that are dealing with the same problems. I don't want to be pitied, babied, fawned over or put on a pedestal. And certainly not be to looked down upon or judged. It's when people are uncomfortable with me that I become uncomfortable with myself. But, I am comfortable with myself and I own who I am.

Small Gestures Go A Long Way

Like I said initially, you'll find a lot of shitty people out there in the world but there are genuinely some good eggs, some people I'm really happy to call my friends. I wish I would've saved/taken pictures of all the cards and random, amazing get well soon boxes I've gotten through the course of my time home. My friend/kindred spirit Alicia, who sent me this card above that I received today, gets me and I love her for it. Every time I read this it makes me smile which is good timing because I'm still recovering from my injections on Thursday and have been mildly cranky.

I feel like when a lot of people found out what was happening to me initially, they didn't know how to react or be supportive without feeling like they were getting trapped in a soul sucking tunnel of sadness. But the truth is, it's just nice to occasionally be reminded that people generally give a shit. 

For example, I got a call from my freshman roommate a few weeks ago. We have the kind of relationship where we are close and will always care about each other but are bad about keeping in touch. When she called me, I had missed it. (I've generally been bad about my phone since I've been incognito.) I texted her back and asked if she had accidentally butt dialed me and found out she had called because she was at our favorite singer's concert (Sara Bareilles) and purposefully called me to listen to our favorite song, Gravity, that we've probably listened to 95043609348 times together. This is such a special song to both of us and the thought that she had called me just to let me listen and know she was thinking of me made me tear up. Maybe I'm a total cornball, but I feel like I've been focusing on all the shitty people rather than all the great people that have come into my life. Not sorry 'bout the fact that this post was semi emo. 

If you don't know where this gif is from, I truly feel sorry for you.

Finding the Funny

Humor is truly a saving grace.

If it hasn't already been made clear, this year and a half or so has been hard by anyone's standards. But, the way I cope with it (and have always coped with anything) has been through humor.  There is a comedian I like named Tammy Pescatelli who has a comedy special on Netflix called "Finding the Funny" and I thought it was just the best thing, especially for people with chronic pain.  Plus, she's Italian-American and in my head, I probably think I'm her. But, in short, I would be miserable all the time if I never found things to laugh at.

Growing up in my small, boring hometown, you had to go out of your way to make stuff interesting. If this were Mean Girls at lunchtime all my friends probably would've fallen into the category of art freaks aka "the greatest people you will ever meet". Janice (or Tina Fey, I'm assuming) makes a pretty good point. Art freaks are the greatest people you will ever meet. 

People who have the ability to "let their freak flag fly" and not be deterred by boring, shallow and close minded people really are the best people. They (we) have the most fun.

When I moved to New York (which is a mecca for weirdos), I was convinced weird stuff just found me. I always had strange stories to tell my family and friends of things I encountered I never thought possible coming from a small town, especially when things like this are a normal occurrence. I went to art/fashion school where being "normal" is actually frowned upon. The weirder you are, the more respected you are. So, naturally, I attended a lot of strange (by other peoples' standards) parties, transvestite sponsored events (like beauty pageants) by my school and generally just hung out with a lot of innovative/weird/hilarious people. 

One of the best parts of my time in New York though was living next to Lynne Koplitz in Greenwich Village. In our own little New York "meet cute", Lynne ended up becoming one of my closest friends/mom/big sister/aunt (whatever you want to call her). I would walk across my hallway and spend nights with her cackling at the top of my lungs talking shit, eating raw cookie dough and watching Desperate Housewives with her little dog, Aldo. Because the Village is the best place on Earth, Lynne always does spots at The Comedy Cellar (aka the best comedy club in the world in my opinion) and sometimes I would be lucky enough to tag along, watch her spots and sit upstairs in the cafe at the table with all the other comedians for the night eating, drinking and getting to listen to everything they had to say. I won't drop names, but if they have been to Comedy Cellar in the last few years, I probably have at least met them and know the "regulars" fairly well. Most nights, I would leave laughing so hard my stomach would physically be in knots. This was a lucky experience for me. 

But, since I've moved home, it is a lot harder to "find the funny". Recently, because of my illness, I had had a really bad fallout with a very close friend and it is hard not to be cynical all the time. But, a few days ago, someone dropped this off at my front step and literally ran away. 

Let me explain what this looked like when I had received it: neon green envelope with 1 tie-dye anklet sock, 1 piece of beef jerky scotch taped down, 4 different used chapsticks, a fake flower and underneath all that, a cut out heart that said "LOVE YOU SEXY SEXY SEXY…". On the back of the envelope it said "Meet me at Pizza Hut on August 27, 2014." and within the envelope, these pink cards that had random, miscellaneous things written on them with all different handwritings (some a little more rape-y looking than others). One of which included "Meet me at the cold de sack at 6:30." and my personal favorite "Let yo bikini body shine." My first thought was that my friend with whom I had the fallout had completely lost her mind. My dad, driven by his curiosity, went to the closest cul-de-sac at 6:30 (!!) because he wanted to see what the hell was going on. No one was there. 

I am now convinced this was not the doing of my friend, but of a love starved and probably odd preteen experiencing a summer neighborhood love type romance that I inadvertently cockblocked. And I could not stop laughing. I can't even get myself to throw it away because I love it. I am also now convinced that funny is still finding me in its own little way and I love the universe for sending me this poor kid's awkward cry for attention (even when I am in hiding and cut off from the outside world). I think the saddest part is that I genuinely cannot tell if a male or female wrote this and it is still being debated within my household. 

And, just for your (my) entertainment, a few of a favorite photos of funny and equally entertaining friends from over the years: 

I cannot stop laughing when I look at this picture. This was a "home" party. You've seen movies.

FIT's drag pageant, "Ms. FIT". This is my friend Joe. He walks better in heels than I do (and has nicer legs.)

Me and my friend Taylor at my friend Rony's (a male) quinceanera. (He was not turning 15 either.)

This was an "S&M" themed party that I unfortunately missed and will forever regret not attending. But I love this picture of my friends Sadie and Gab.

My friend Alex…being Alex at an alien (meets fashion? maybe) party at his apartment.

I think this was for Ms. FIT, but I had to wrap the caution tape around him to make him "Lady GayGay". It wouldn't have surprised me if this just happened to be any given day at FIT either. 

This party was called "Afterbirth". Not sure if I can tell you what's happening here but it is on a roof, so that's fun.

More "Afterbirth."

My brother, Alex, in Paris for Christmas with a mustache and beret. 

My last halloween in the city. I refuse to give Halloween any real thought or effort, so I usually just end up in an animal onesie (for warmth, comfort and the ability to appear low maintenance).

This was in Italy at my favorite bar with my favorite transgender Filipino cocktail waitress. Her name was Regina (which means "queen" in Italian, FYI) and we were best friends. 

Lynne and I on a random night outside the Cellar.

I'm sure there will be many more a post on humor, the emotional aspects of dealing with chronic pain and what's helped ail me in my time of need. As for now, I plan on keeping that insipid envelope forever.

If anyone wants to join me at Pizza Hut on August 27th, 2014, let me know.