Living With Agoraphobia
by anonymous Fort Refuge member
i've been struggling with agoraphobia for the majority of my life. It's waxed and waned over the years, swelling and receding in its severity, but it's never fully gone away. There have been times where it was so severe i've been bedbound for a few days. There has been times where it was held back, and going outside wasn't a big deal. There are times where i can go outside easily with trusted companions, but cannot step foot out my door to even check the mailbox on my own. Each time i've battled the extreme 'flareups' that agoraphobia throws at me, i'd had different approaches, depending on where in particular the irrational fears were stemming from. This current bout, though, has been one of the most difficult to fight, and one of the longest stretches i've had to endure it. i started to write about it on Fort about a year ago, at first just venting frustrations, but the thread grew into more than just an explosion of emotions - it shows glimpses of my journey, thoughts, plans, ideas, failures, successes...
When i was approached about sharing this particular battle of mine more publicly on Fort, i felt a little bit honored. i often feel that Agoraphobia is misunderstood. i know i'm still attempting to wrap my head around it, even after all these years of living with it. It's a very lonely, isolating condition, and at its worst, it's completely irrational, yet totally unbudging against all forms of logic. And if putting my story out there will help reach others, to let them know that they aren't the only ones fighting this seemingly-everlasting war... if it will help put words and emotions, and bring understanding to those in the dark about what it's like to live with this, then i am more than willing to share.
At the time of writing this introduction, my current battle isn't over yet, and frankly, i don't think it ever will be. i can only hope that as time goes on, each flareup i fight with Agoraphobia will become less and less severe, and the spaces inbetween my SafeZones will grow, until maybe someday, it'll never again reduce my existence to that of a living ghost.
i'm still unable to break thru this, to make myself be able to even go outside alone. and i'm always alone, i have nobody at all here this time.
i forced myself to stand in my window - opened, shades pushed aside, and just kinda stood there for maybe idk 15 - 25 minutes, just looking outside. it was difficult, i felt like an idiot, and hurting so much inside, because that's the most i can do right now. and it's more than i've done in a long time. needing to keep the windows covered at all times is a huge deal, and i stood there, at night, looking out, trying to understand, connect, to look and actually See.. breathe...
i'm in such a low slump right now, i feel awful, useless, like i'm failing so hard, i can't even go check my mail in the lobby downstairs until its very late at night, so less chance of running into people. i'm sinking into this enormous pity party the past few nights. i have all these plans in my head, wishes and dreams for this new place... yet still here i sit, unable to break thru this membrane of fear. it hurts me and it makes me despise myself.
i went out tonight...
i have barely any groceries in my house, so i randomly looked up the closest restaurants and found a nearby Subway in the list. i'd already been "presentable" from needing to go to the lobby to pay rent today, so i hurried and went before i could overthink it. it was dark outside already, and i really had no idea where i was going.
but i did it. i tried to push aside the paranoia telling me that ppl were watching/following/judging me... telling myself that every call or holler i heard was NOT people mocking or yelling at me... that even when i walked a block in one loop cause i had no idea where i was going, that when i repassed places i'd already gone by, that people were NOT taking notice and laughing at me...
i tried to keep my head up and shoulders back, i tried to subtly make note of "anchors" without looking 'touristy'... i was nervous, but not nearly as frantic as i've been known to wind up. i found the restaurant, and made it back, and even attempted a "shortcut" because i recognized the parking lot that i see outside my window, so knew i didn't have to walk the street-route (i took the hypotenuse!!). and even managed to make smalltalk with a neighbour as he held the door for me, and we shared the elevator up to our respective floors.
it seems like such a sad, silly little thing to be proud of, but i am proud. i'm still shaking off the nerves and whirlwind of "did i really just do that?" but i did. and i can do it again.... **deep breaths**
writing ideas here:
rather than focus on distance limit, make it a timeframe: ~sometimes get so fixated on the ONE place to go, that dont take notice of surroundings, and so heavily fixed on the getting there and back ~ this way can wander and explore, with a "be home in time for...", to learn how to be comfortable just being out with no set designation to find
start some type of travel anchors log: ~ take snapshots of places found, "safety oasis", and put in a small book with address; ~ snapshots of memorable landmarks to ground where are, and create a "visual map" to learn how to always get home, with lists (or pics) of nearbys
goal set: have to go to get new drivers license. date is set tomorrow tuesday, further in the week more chance of rain and no proper gear. is just a little over a mile, 2 straight lines pretty much, office closes at 4:30pm, so must go way before that. not sure how long gonna take to walk. googlemaps says 22 minutes but self is out of shape and there's hills and fear and, well, other crap too.
no ifs and or buts. must do. by self. alone. oh gods. help. nobody understands just how DIFFICULT this is. NOBODY.
it was clear and bright, and the air was chillier than was expected, with a wintry nip that was almost too much for the thin hoodie selected, but it was actually welcomed. the eyes were a little burny watery from actual real outside air, and the chill made the nose a bit drippy. it smelled so good, that forgotten freshness.
i carried the brief directions scribbled on a post-it note, glancing down now and again. walked with head up, and trying to take pictures with the eyes of the buildings, and signs, and colours. rattling the post-it, sticking and unsticking our fingers from the backing, but nerves were calm, and breathing was even. the only time anxiety started to drown was when i couldn't find the address where I was headed, the DMV. wound up walking a few blocks past it, up a huge hill, then thought to turn around to walk back on the other side of the street. walking back down the hill was scarier than the strenuous climb up. asked two people if they knew where the DMV was, both were friendly and helpful.
on the way back, the sun was starting to go down a bit, and there was a vague dimness surrounding everything, and the streetlights made it hard to think, and only got a little zoned out when a bicycle paused at a light had a bright white blinking headlamp, and i tripped over the feet just a little while crossing the street, but that was it. passed a lot of coffee shops and restaurants, passed a huge library, and saw the public market space at the end of a road i passed, and beyond that, the water. the ferris wheel was slowly turning.
didn't notice if the leaves were still on the trees, but there were plenty scattered across the sidewalks. in many spots it was almost as if the leaf had imprinted on the concrete, and their shadow was still there, even though the leaves had gone. curious as to what that was, and might try to take a picture if i happen across it again.
the trip in all took maybe 2 and a half hours, including the time at the DMV, and i got back home just in time before darkness completely arrived. i wanted to share this with you, because ultimately, my success was not doing what legally needed to get done (new license), but the foray into the outside. this was what was taken with me from it.
the more i do this, the better it can get. i haven't always been this way, it just grabs me from time to time, as long as i can remember, but have come out of it before, and i can do it again...
i know it will be a struggle each time. and it's unfair, and confusing. but just gotta remember - i survived each time going out - whether i got lost, got turned around, or got approached by shady men... i still survived it. the feeling trapped hurts so badly, but remembering i've succeeded before can only help.... right?
im so tired of this, i'm so tired of this, i'm sorry.
i can't understand this, i can't understand why i'm this way!
middle of the night, laying in bed, unable to sleep, dissolve into fantasies and plans - job, activities, going for walks, being okay with being outdoors, being able to have my windows open and uncovered... the resolve to do it, library books need returning, job needs to be hunted, activities need to be found, life needs to be fixed, i need to do this...
but every day its the same - trapped once again. every day repeating, trapped. so trapped and i don't understand why i cannot go outside, i just can't, and i don't even know why!!! why am i so stuck?? why am i so trapped?? what am i afraid of??
it doesn't make sense, there is no rhyme nor reason to this... therapist said i was "diagnoseable agoraphobic", and the 'diagnoseable' threw me for a loop, even though i KNOW it's what it is... but why? why is it so hard? what am i so afraid of? why does that resolve from middle of the night never stick around? why can't i go outside? i feel i'm trapped behind windows&doors in my own mind, while trapped behind the windows&doors in my apartment.
it wasnt always this way, it would come and go over the years, but this has been more than 2 years now... what is wrong with me, why can't i break through this? this is stalling my life, the life i want for myself, it's stalling it, and i don't know why!!!
i just... can't understand it. and i'm so tired of trying, so tired of having to hide, tired of making plans of things i want to do, things i need to do, and days keep flying, trapped... this needs to get broken free of before my life can start to move forward, and yet, here i am, here i sit, terrified of nothing!!!
soooooo had therapy today. one of the things my therapist brought up last session was, how can i start breaking thru the fear of going/being outside, or however he worded it. so today - we went for a walk for our session! it's a gorgeous day outside, sunny, bright, and about 71F degrees... and my therapist helped "me" figure out the GPS option on the phone, and asked me ideas on what sort of 'destination' i'd like to find - because aimless walks are extremely difficult - there MUST be a known destination and a reason.... so i told him a park, that's green and good for sitting and being and quiet and safe feeling. so he took me to one! we walked, and talked like in session, about the anxiety levels, and stuff, i'm not altogether sure. pausing occasionally to help me orient to where we were...
we found this small park, thats about a half-mile away. walked around. walked over the grass. touched the trees. got pretty disoriented and confused after that part though. and so started a self-conscious panic, because there were people on benches and i was just standing there, confused for no reason. but my therapist talked me through it. he even took me inside a grocery store, a Whole Foods, because i told him that the first and only time i went in there, i had abandoned the cart and walked out, it was so disorienting and confusing. so we did a quick walk around some of the store.
the head is so scattered, distractable, loud, noisy, and excitable right now, it's exhausting and causing a pretty bad headache, but it's for good reasons. this session was good. i think i'm starting to trust my therapist a little more? no therapist has ever done anything like what he did today. it was encouraging.
To Go or Not To Go:
PROS: beautiful. motivated. lots of people might be less prone to notice me.
CONS: nervous, anxious, first time there alone. gotta figure out route. lots of people might heighten anxiety and disorientation.
PROS: outside. fresh air. sunshine. water. new & different.
CONS: outside. nobody to talk to/share with. new & different.
PROS: sun sets later, more time before home-by-dark.
CONS: not knowing how to get home.
when deliberating over whether or not to go outside today after therapy session, or any other time just 'cause... the thoughts going on now is: don't have to, cause i did such a good job on saturday, i can take a break. as in, that huge step on saturday is "enough". as if that 1 day trumps 2+ years of battling this current flare-up. add in the friday therapy session, and that just seems to make it that i don't have to try again for awhile.
no. no, that's not how this works, guys. can't just top off a notch cause of 1 or 2 good days in a row and say "that's it, i'm cured, don't have to do it again for awhile." because you know as well as i do, that's just not how it's gonna go.... i don't know how else to word this, i'm sorry. but just... thoughts. this has to be a more than once a week thing. did 1 good job on my own, that doesn't SOLVE it, that's just the FIRST step. rest and recuperate yes, for a few days but.... dont get lazy don't get complacent and let the fear seep back in and eat you alive.
therapist keeps bringing up "what can i do to start getting outside". last night i tried to write down ideas, on paper, to bring to him on friday. looking it over brings a fluttering of anxiety that is so overwhelming in its nonsense, and i feel teary and short of breath just thinking about it. this is what was written:
Ideas To Get Outside: ~ learn to take a walk - make a route? start small, every day, even if just around 1 block. ~ leave for therapy sessions early and sit outside. write a "log" of daily things/activities prior to session. after sessions - sit outside and "recap" session to see how much can remember ~ find way to park therapist walked me to that 1 time, maybe once a week to start, just go and sit under the trees. mp3 player in ears - write? journal? draw? read? ~ find free activities? volunteer? choir? beginner team sport? craft group? ...then there's a listing of activities i'm interested in as well, things done before and missed, also things want to try, things that sound interesting to look into, classes and such.
...its exhausting and frightening just to think about all this. especially when its still just a struggle to check mail. leaving to go to therapy twice a week is easier, but thats a very quick walk, and there's destinations and purpose involved - but the idea of lingering before or after session, for the sake of being/staying outside brings so much stubborn stupid anxiety and panic. im too tired for this and my brain is mushy sludge right now. this is all i can say. rambly. but needed to update this. been slacking so hard because of stupid stupid fears over nothings. nonsense.
today is a gorgeous day, its already nearly 6pm though, the sun will only be up for a couple more hours... it's probably hotter inside my apartment than it is outside… i'm feeling torn, i need to be doing something, i need to be going somewhere, i need to be... just Something... i don't even know. the weather's so beautiful, any normal person would be taking total advantage of this. i should be too.
there's ideas that my therapist and i been discussing over the past few sessions about how to get outside. he says at this point, the only point is to Go Outside. part of my deal here, is that in order to go outside, there must be a reason - a purpose, a destination, a timeframe (such as therapy appointments), a reason for going (such as picking up some groceries at the store on the corner)... which by the way are the only 2 places i am ever able to go to with relative ease. part of the plan is to branch that out... spend some time before and after therapy sessions just sitting outside... find another store to go to that's slightly further away (and has more selection)... the store has a nearby park, learn to go and just sit there for a while... and then come back.
this is what i should be working on right now - on a day like today... and here i am just sitting here. talking about stuff but never doing stuff. fighting off reasons and excuses... giving into the irrational and illogical fears... listening to the lame excuses that play on my self-consciousness and low self-esteem. the more i stall, "deciding on a plan/idea", the more i re-route my head over what to wear, what to bring, what i can spend, what i need to buy, wants vs needs vs costs vs.... the more time slips away, and then it will be too dark, or too close to dark to reasonably go out. i am the master of my own demise. and the cycle of self-loathing begins again...
before therapy session - left early and sat about 10 minutes outside (tried to jot notes in a notebook). after the session - sat outside again, maybe 5 minutes, tried the note-jotting thing again but instead sudden urge idea to foodshop. gorgeous day. already out. foodstamps returned. came home - looked up store been debating trying to find - got a handled canvas bag and left again. made it to store. small, but different selection than usual place, better produce. bought veggies and fruits. able to chat with the cashier. walked home. put it away. went out immediately again to same store for things couldn't find at new one - took time, wandered, picked up mostly healthy (trying!) things, and another chatty cashier.
came home. out 3 times. success each time. 3 times!!! first place took a bit to get oriented. told inside, "if people stare who cares, and p.s. - nobody's gonna stare". and healthyish food! new tiny store with decent produce/slightly different selection than tiny corner store! and not far! tricksey street crossings though. many people around, unnerving. but managed to even try to smile at a few as passed by - very difficult - usually walk with head down. i's proud. 3 times!!! and one right after another, which was a scary idea strangely, out in out in out in. yay!!!
latest venture out was mostly a disaster, and i feel defeated. i know i should be focusing more on the positive aspects - the fact i got myself home by a route from memory and guessing, and the mere fact that i DID it... and that it also ended on a decent note... but all i can feel this time is failure.
considering going outside tonight to look for fireworks. love fireworks so much. even if just go stand outside alone close to building, if any fireworks are visible anywhere...
for a while now, been having windows uncovered more and more, at least in daytime. for the smaller side windows, the fabric is knotted in the middle, so the lower halves are actually kinda bare 24/7, and have been for quite a few weeks.
honestly, this is major progress. major. probably even more than actually going outside. windows have always been the constant struggle, even when going-outdoors came easily, for so many years. windows, particularly dark ones, have been a bane of my progress for as long as i can remember.
so now here i am. still struggling to go out, but not giving up. i sit back and look over, out my open window, the crystal-black night, cityscape blinking glitter, and brisk air rushes in, and i breathe it its reality. i can see it now, still within my walls most days, but the windows between these worlds are becoming accessible again, and i can face it a little bit better each time. and someday, i will tame this agora-beast once and for all.
don't give up.
~ Albert Einstein
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