Tag Archives: life

Selfie 4

Another bed, couch, bath, couch, bed day.

I have disappeared into Hogwarts. Yesterday was disappointing and my depression has been pretty bad the past few days. I found out that many benefits are out of reach, and that disability can’t even be applied for until you have some form of a concrete diagnosis. My PCP, so far, wouldn’t give me anything or even look at my back. He had my twist, (attempt to) touch my toes, and lift my legs — but he didn’t even look at my spine, not even a scoliosis test. So, I don’t know. I should be getting my X rays read tomorrow, as long as there’s no mistakes between the lab and my doctor.

I read almost all of The Sorcerer’s Stone yesterday and started Chamber of Secrets this morning. I have been  crying through almost every chapter, as I am a sentimental fool and also fragile. I wish there were more books. I really cannot explain how good it feels to completely remove myself from this world and return to school for witchcraft and wizardry.

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Moratorium.

I have desperately been trying to avoid social media in the last few days. My pain has been bad and I find that every single time I’m doing the cycle on my phone (Gmail, Facebook, Instagram, Twitter, Snapchat, repeat repeat repeat…) I get more and more anxious. Reading posts on Facebook almost immediately makes me anxious, sad and angry. It doesn’t matter if I agree or disagree, I just do not seem to be able to handle reality outside of my own kind of tiny, currently dark world. My anxiety and anger, sadness and frustration only feed into the discomfort.

It’s so hard right now to stop myself from a quick CMD+T to check Facebook. For what? For what?? 

I am always in the apartment. Standing in line for anything is enough for the pain to come and ruin the rest of my day, maybe week. There isn’t anything too close to our home right now. The nearest coffeeshops and so forth are roughly a half a mile away, which used to mean nothing to me. I used to walk to work, 3 miles every day. At this time 2 years ago, I was jogging home with my backpack, 1.7 miles 3 days a week. Now, even a short walk in the wrong shoes can lead to later agonized immobility. I AM SO FRUSTRATED. If I do get out of the house, for a doctors appointment or something, I can’t even keep up with a New York pace any longer. I take short, careful and measured steps. I have a steady pace and think about every step. Curbs are often a challenge. A step down taken too hard can be the end of my journey. Sometimes it feels like the only thing I can do is surf the web — checking the same sites over and over again. It provides almost complete and utter, empty brained distraction.

I feel broken, socially. I feel like I have nothing to share, give. It feels difficult to provide conversation. I’m not sure, when someone asks me how I am doing, if they really want to hear my answer. At the same time, the fear of missing out is so real. I miss being at the bar, at our favorite haunts, with our wonderful friends. I miss being ridiculous. I miss dancing. I’ve only really been laid up about 5 or 6 months, but it’s really put some shit into perspective. I feel so silly for not moving more when it didn’t hurt so bad. Things like standing in lines has been throwing out my back for around 8 years, now. But at least back then I could still dance, run, somersault, swim, jump, play and wiggle. I want a magic cure, I want a time machine,  I want to feel like a normal person.

I can’t even begin to imagine what people who have been in worse pain for longer are going through.

Fuck, what a thought.

Even the projects I do want to start, that could potentially keep me busy, are seemingly impossibly out of reach. See, it turns out that doing stuff actually costs money. And when you can’t work or walk, money gets super tight and those kind of things go out the window. You are mopping the floor with dish soap — you aren’t buying podcast equipment or books for law school. Or even applying for law school, because it turns out that that costs a buttload of cash, too. It just adds to the cycle, the stagnation, the sometimes overwhelming feeling of failure and frustration.

Man, this has been pretty therapeutic, really. If someone actually reads this, thanks. Just going through it right now, hypothetical dudes.

Selfie 1

There’s this thing that happens when the only photos you share are of those moments you are doing something that makes it look like life is always on some ultra lightbeam trip. What this does, for those people who suffer chronic pain, is increases the likelihood that people are going to tell you how great it is to see you FEELING BETTER. Truthfully, a picture takes a moment to capture. It represents seconds, nothing more. Even a short video of awkward movement (there were a couple videos a close friend posted of me ‘dancing’ on Thanksgiving that represented approximately 20 seconds of the entire day – bookended by sitting, and we were dancing in slow motion,) seems to make people forget the word “chronic” at the front of your condition. I am not feeling better. I wish I was. I just managed to do something for a few moments. I may have even hurt myself doing it. It doesn’t feel like a victory to me, any way you spin it.

I think, for no particular reason at all, I’m going to try to share a selfie every day of what I am doing, no matter how mundane.

So here’s me, today. I went from the bed to the couch, took a hot bath in the evening, and came back to the couch. I’ve been in some pain today, afraid of my back going out. I was in worse pain yesterday. I am more worried than usual because I am out of meds. My new doctor didn’t want to prescribe me anything to put me out of pain, so here I am taking probably too much OTC medication to my detriment. But I don’t know that for sure, I guess. It’s all part of the ride. I had X rays and this last Wednesday, and return this Wednesday to my PCP for my bloodwork results and imaging results. Hopefully I get something concrete to hold onto. I will be content with the next step forward.

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twinkle lights and sweatpants

Pain.

This came into my life and I think it should be required reading for all human beings, and posted in every doctor’s office. LETTER TO PEOPLE WITHOUT CHRONIC PAIN.

Yesterday, while looking at my battered slippers on my socked feet, I started to cry. My mind had immediately jumped to my dad and all the physical pain he experienced as an adult. For weeks, sometimes months on end, he literally couldn’t move off of the couch or out of a hospital bed that was directly next to my parents regular bed. I thought about how for a long time, the only gifts we could think of to get him on holidays or his birthday were things that he could wear or use when he was laid up in this way. It was always new bedclothes, slippers, or  something like an extender-grabber for when he dropped things since he couldn’t bend or get off the couch to retrieve items for himself.

I was crying because I’ve been married 3 months to my wonderful husband, and out of work for roughly 4 months because of my back and this absolutely debilitating pain. Money is tight, stress is high, and I am literally in pain 100% of the time. I can’t keep my own house clean, I can’t make us dinner if it means I have to stand for over 5 or 10 minutes at a time. When I do get out of the house, it’s carefully planned and easily canceled if I’m in any sort of pain. There isn’t another option. I have to take cabs, the closest bus and subway is half a mile which is just too much right now. Making the decision to attempt a walk somewhere, or to hope there are comfortable seats available at a restaurant or bar, could mean that I wind up in a pain that I still don’t have words for, unable to dress myself and bawling in the fetal position for 6 to 9 hours with absolutely no relief.

This, as you can maybe imagine, causes major anxiety. Anxiety causes muscles to tense up, making pain worse. Anxiety and tight muscles make it hard to sleep, which makes anxiety worse, which makes pain worse. Tossing and turning has, more than once, been the cause of a day of hellish agony. Being unable to work, being stuck at home, causes depression to develop/reawaken and worsen with each passing day. And this doesn’t even go into the guilt, the weight of being truly shiftless when one desperately wants to be a part of productive society or get back into school. Forget the loneliness. People forget how to talk to you if they don’t just forget about you entirely. It’s too much for them to deal with. I don’t blame them.

My back went out for the first time 8 years ago, the day after President Obama was elected. We had thrown a party in our Lower Haight apartment on election night and, as you can imagine, there was a lot of standing around, being excited and running into the streets, and wild abundant celebration. The next day I couldn’t walk. I remember, really, barely making it to the polls the day before, I was already feeling pain in my lower back. I didn’t fall or have any kind of accident, it just started. It’s never been looked at by a doctor, because those first 4 years or so, the pain entirely disappeared with a days rest.

It came back with a vengeance when I was working at a jewelry store, but only really caused extreme discomfort rather than knocking me off my feet. (But it was still  horrible.) It was when I was tutoring in Manhattan that I woke up for the first time and couldn’t get out of bed to use the bathroom. I couldn’t move, I felt paralyzed. I couldn’t feel or move my legs, and my lower back was on fire. The pain is impossible to describe. It starts small and gets big, fast. Aaron had to help me to do anything, everything, and after a day or two I made it to an out-of-pocket doctor who gave me drugs and wrote me a note to get me out of work for a week. She told me I had a pinched nerve and to rest, take baths, and it should sort itself out. It was the first diagnosis I was ever given about my pain.

Since then, it’s been hit or miss. I managed to get a degree at a nearby enough university that I didn’t have to be on the train for more than 20 minutes, and never really had to wait more than 10. I had a job at a wonderful imports gallery, but it turned out to be a less than perfect fit. Worked at what has totally turned out to be my favorite job ever at a beautiful florist in Park Slope, that sadly turned impossible due to the physical nature of the job (which was my favorite fucking part of the whole thing, really.) I’d much rather be moving than sitting. Even at home (before all of this,) I find it hard to relax when I am on my own and would wind up cleaning the house from top to bottom on sometimes a twice a week (or more) rhythm.

My back has gone out 7 or 8 times in the last 5 – 6 weeks. I feel it all the time. A smile on my face or getting out of the house for one afternoon or evening does not mean I am feeling better. The ability to get down the stairs a little easier does not mean I am feeling better. It means I am making it work, and nothing more. I am in pain every moment I am awake. It is the first thing that occurs to me in the morning, and the last thing I worry about while I arrange my body to fall asleep comfortably as possible. I wake up all night, every time I turn over, because of the simple fact that it hurts. If I wind up on my back during sleep, I might not be able to get up in the morning.

In fact, I’ve taken a small break from finishing this particular post and in that short interim my back has gone out twice. The last time was after waiting in line to vote in the election. 10 hours of misery as the results rolled in. I still haven’t quite found the right words to turn my pain into literature. To be absolutely frank, it’s the scariest thing I think I’ve ever gone through. I don’t know what’s happening, and when in the throes I have some of the ugliest, most frightening thoughts I’ve ever experienced. It often feels like it would be easier to give it all up than go through another moment of torment. I’m not trying to be dramatic or ask for help at this moment, just honest as fuck with you.

I made an appointment, I finally have my insurance. I have an appointment on the 23rd of this month and I’m nervous as hell and very excited all at the same time. Excited might not be the right word. Maybe anxious, to get started. I have to keep reminding myself that this first step probably won’t tell me anything at all, but it will hopefully get things rolling. A referral for an X-ray would be most excellent. Renewing my prescriptions through my insurance would be incredible, paying out of pocket is not an option.

 

 

Smile.

If you’re some dude, and you’re thinking about telling me to smile, you better make sure you have a million dollars in cash that you’re about to hand over to me no questions asked — because, otherwise, I don’t know what the fuck there is for you to tell me to smile about.

Apologies.

When you live your life scared of almost everything, you tend to have to give a lot of apologies.

Lots of apologies sent when breaking plans. Social situations make me incredibly anxious. It could be 1 person or it could be 30, it doesn’t matter. I’m anxious. If  there is free/cheap/any booze to be had, I will be having some. I might accidentally over drink just to make things manageable, rushing through my first cocktail, making awkward jokes about “social lubricants” and laughing at myself. Then maybe I drink too much and I become unmanageable. I might say some stupid things. I might embarrass myself. And then all of this new embarrassment feeds into the next time I’m in public. It cycles. Like everything.

But, also, it’s hard when you have a lot of pain and you aren’t sure if you should or shouldn’t go out on a particular day. It’s hard to know if that’s a valid reason to break existing plans. It’s hard to know if insomnia is a good reason to break plans. It’s hard to know if massive anxiety is a good reason to break plans. It’s hard to tell people the truth when you don’t know what they’ll say. It’s hard to know if what they say is the truth because you can’t read their mind.

There’s the apologies after I ignore my phone for the umpteenth time. The phone sucks. I don’t know what happened between the phone-OBSESSED years I spent as a teenager I experienced and the absolute, heart-jumping fear I experience when the phone rings, now and for the last ten years. Part of me thinks that it’s about the time that landlines became a thing of the past and suddenly people could call you anywhere you were. We’re not alone anymore, we’re being stalked every day. You don’t go to the park and leave your TV, computer, and phone at home — you bring them with you in the form of a tiny infinity box. You never left your living room and you’re going to get a sunburn. I miss when leaving the house meant no one really knew where the hell you were. Like, you told your parents what your plans were… but how would they really know?

I send a lot of apologies because I don’t respond in a timely manner to things that make me anxious even a tiny bit. A person I’m nervous about, a subject I’d rather avoid, something I’m feeling particularly sensitive about that day, or because I am in such an ugly place that I literally can’t handle any part of my adult life and spend the day cleaning the house, crying intermittently.

I feel like I might have to apologize for this entry. There are always the inevitable people with whom I attempt to share my fears with who tell me “Oh, but you don’t have to feel that way with me.”  And that makes my heart speed up. That makes me clam up. I’m done sharing with this person because they clearly do not understand how this silent terror tends to operate. The anxiety grows when they message me. They must be thinking that since we had our conversation and they assured me I had nothing to worry about that I’ll pick that phone right up! No ma’am.

And maybe they aren’t thinking that, but I don’t know that. I don’t know anything other than the crushing fear of potentially embarrassing situations. I don’t know anything other than the remembered pain of past regressions against some invented and unreasonable standard I’ve placed on myself and reality.

I’ve missed weddings. That hurts so many people. I feel awful. I stay up at night thinking about things that happened a decade ago, wondering how I could have changed them, fixed them, or lived them differently. I’ve missed graduations and deaths, births and birthdays, and didn’t even initially pick up the phone when my mother called me from my dad’s cell to tell me I had to come home and we were losing him. I still don’t know exactly how I feel about that. Some things don’t feel remotely appropriate to even attempt an apology, so I just stew and feel horrible and know that I messed up and continue to feel helpless.

I apologize for apologizing so much. All the time. For everything I do, say and think. I apologize for my very existence sometimes. At least that’s what it feels like. Like, I have to apologize to the people in my life constantly for the mere fact that we are existing on this same terrestrial plane and they have to deal with me. 

Already in my head I’m thinking, “I’m going to have to take this entry down,” because it’s just too embarrassing. It’s too self centered, or something like that. It’s too painful and weird. Someone is going to have something to say and they must be right, right? But that all goes back into the cyclical nature of fear and how it can affect the human mind. My human mind, specifically.

Weirdo.

Libby and I often talk about how we became friends. I walked up to her in the second grade and told her, “Hi! My name is Candice and I’m a weirdo.”

That was that.

My husband, recently, pointed out that what I was really saying was, “Hi! My name is Candice and I’m different than anyone else.”

I like that.