#my fibro has gotten SO much better too

[crplpunkklavier]

the pandemic was and still is a horrifying threat but there was something about returning to my old job after my country's very first lockdown and like, finding that my female coworkers had stopped wearing makeup every day, my male coworkers had grown out their hair and beards, and like half of us were suddenly fat and the other half was suddenly jacked because we'd all out found what mattered to US and ONLY us in those months we'd spent locked up with ourselves...... imagine a world where everyone had been allowed to actually finish that thought instead of being forced to return to the grind as if nothing had ever happened

[rederiswrites]

I want to talk about my health journey over this last year, improving my function and getting better with fibromyalgia and chronic fatigue. But talking about chronic illness is so incredibly difficult. Look at the backlash people get for saying that exercise and sunshine and regular sleep really DO help depression. What I have to say is in many ways the same thing! It's an incredibly delicate issue, and very often, talking about solutions you can implement yourself sounds like blaming people for their own suffering. On the other hand, if all you hear is the conventional medical line that there's nothing but some medicine that sort of helps, that's where you're stuck. I was stuck.

I didn't want to hear that learning to fucking relax was going to be a huge component of my journey. That sounded like exactly the same shit the people who said "have you tried yoga" and the doctors who told me it was all in my head were saying! It's not, really. Not at all. It's missing far too many critical components. But uh....learning to relax is in fact incredibly important.

For example, yes, the pain is in my head. Pain is ALWAYS in our heads!! That is where the brain decides to interpret data received from the nerves as pain! It is ALWAYS heavily influenced by factors well beyond the objective experience. Science has thoroughly demonstrated that we can feel pain without an injury--indeed, that we can feel pain when the sensory input wasn't even on our body! And in the inverse, we can have injuries and not experience pain. Pain is not nearly as reliable a signal of injury as we believe it to be.

And yes! Yoga might help! It helps a lot of people! But if you go and do yoga with, say, a teacher who is not trauma-informed, or without at least some understanding of what your nervous system is up to, or the strains and trouble points in your body, you'll get little benefit and might experience harm.

The nervous system is our body's OS, in a very real sense, and for me as for many people, addressing that turns out to be really important to healing. But the nervous system isn't really designed to be user serviceable! So if it's being overreactive, constantly on high alert, keeping you in a stress response that physically blocks healing, feeling pain where there's really only a light and innocuous pressure, or maybe just a runaway inflammatory response that, like a highway traffic jam, is literally just creating itself-- well, fixing that is hardly a matter of just "oh silly goose you should stop that! It's all in my head!" But there are ways. Mindfulness techniques. Visualization. Meditation. I almost mistyped medication but it's actually true--a lot of the time fibro and ME/CFS patients get treated with antidepressants! It does help, for a while, but it doesn't change the underlying problem much.

For me, while I've tried and gotten benefit from some of those--actually, come to think, ALL of those things--pure information is my medicine of choice. Just exposing myself over and over to the message that you can get better, that people have, that there's nothing detectable mechanically wrong with me, to the science of physiology and the nervous system and pain. Books, TED talks, youtube videos, research papers, articles...

And most importantly, I had to commit. I had to reach a point where I said, I will do whatever it takes. No comfort, no habit, is more important than getting better, and I believe I can get better. No doctor ever told me that--I had to find survivors who had recovered online, largely by accident. Once I believed I could get better, working to achieve that goal became vastly easier. So I radically changed my diet. I restructured my days massively. I spent hundreds of hours consuming information that reinforced my hope and commitment and my understanding of the problems. I worked incredibly hard to get my sleep under control, and it's an ongoing process but there has been progress.

Today, I got out of bed before the second alarm that tells me to get off my phone and get up. Because getting up wasn't so crushingly hard. I didn't have a perfect night's sleep, but it was enough. Yesterday, and the day before, I worked steadily through the day, I accomplished my goals, and I didn't end the day crushingly drained OR bubbling with adrenaline from pushing myself beyond my normal limits. I don't need to recover, today. Because I didn't do more than I could sustainably do, and yet I made progress. I did laundry. Had great conversations. Planted three dozen tulips. Pulled weeds. Attended a webinar and learned how my state legislature works. Took care of the chickens. Ate a really healthy lunch that I enjoyed, and made the family a really healthy, delicious dinner. Caught up on the news with the family and then read a thought-provoking book. Made beads.

I still have a long way to climb on this spiral staircase. Probably the cold weather and midwinter will really challenge my ability to regulate myself and stay functional. I still have to incorporate regular exercise as a critical pillar of ongoing good health. I'm still struggling to find resources on meditation and mindfulness practice that I resonate with. (Three books in on that subject, one of which was interesting but annoying, two of which I actually quit in exasperation.) But I do really feel like I'm making progress that's not just luck or the usual fluctuation of symptoms. I am, in quiet ways, doing Pretty Okay. And that's a lot, when you've been bedbound.

[fibing-and-vibing]

The large amount of vitamins/supplements/meds I take in a day lol:

This is my current cocktail of meds etc that I take every day. Maybe they’re superfluous, maybe they’re not, but through a lot of trial and error I’m pretty sure all of these are actually helping me feel quite a bit better. Feel free to ask me any questions about specifics, but please don’t be mean about any of these bc I’m just doing my best lol.

Wake Up:

Multivitamin for eye health

Multivitamin for women’s health

Hair and nail vitamin

Protein shake

Notes: all of these are chewable/gummies, which not only is easier when I first wake up, but also easier for the body to digest and so more effective. My hair falls out a ton so the hair vitamin really helps. And I always wake up hungry but feel sick if I eat, so I go for a pre-made shake every day. They’re expensive but they keep me feeling ok, give me a good amount of nutrients, and require zero energy to prepare.

Mid Morning:

B100

Cod liver oil with A and D vitamins

Odourless garlic

Coenzyme Q10

Notes: I’ve found the cod liver oil to be more effective than just regular vitamin D, maybe it’s because of the omegas or whatever. Also the garlic is lowkey one of the best things I take, it reduces inflammation in my sinuses and everywhere else, and is helpful for circulation which makes everything else better too.

Noon:

Welbutrin

Seasonique

Claritin

Notes: I’ve had depression and anxiety diagnosed for a long time so been on welbutrin for a while, but it’s a bonus that it’s supposed to help for fibro brain things too. Seasonique is crucial bc I’m pretty sure I have PMDD and my mental health absolutely tanks on my period, so only having one every three months is a lifesaver. And my respiratory system has been bad for a long time and I live in a city with not amazing air quality, so a daily antihistamine helps a lot and I’ve stopped pretending there’s a time of year I won’t need that.

Afternoon:

Iron

Probiotics

Notes: I’ve had low iron forever, and even though doctors have always told me it’s not low enough to qualify as anemia, I’ve had anemia-like symptoms my entire life, so. However, I didn’t really notice benefits of either iron or probiotics until I started taking them together, and now they’re huge. If I’m ever out and about and forget/wait to take these I immediately realize bc I start feeling faint lol.

Before Bed:

Magnesium bisglycinate

Cranberry

Turmeric collagen with univestin and bromelain

Melatonin

Notes: I’ve had bladder issues for a while which I didn’t even realize was a fibro thing; I’ve always had to pee a million times before bed etc. Cranberry fixes it. The turmeric collagen one is new but I’ve been shocked how much it actually helps with joint pain and mobility. The magnesium I’m not 100 on but my fatigue situation has gotten better so it can’t be hurting at least.

Is it annoying to take so many things throughout the day? Yes, but I just fill up my pill containers on Sunday and then it’s all ready for the rest of the week, so not the worst. Would it be better to get all these nutrients from food? Probably, duh, but we’re living life on hard mode already and I don’t need to make it even harder so pls don’t bring that up lol.

Of course, always look up interactions before you add anything new to your regimen, especially if anything you take is prescription. I’m always on the lookout for new things to try now though tbh, currently thinking about ginger maybe.

[anonofseasons]

Maybe it's due to not having spoons (fibro and the heat are getting to me bad), but my mood is up and down, and my feelings about Seasons are going up and down with it?

I'm like, "Oh this part is cute and I'm excited to share it!" and "Cal, shut up, please, you're being annoying. Keep it to yourself!" No one has said I'm being annoying. I just get super self-conscious now, bc... history of being told I'm annoying. Also, it's rather recent that I'd tell my now-ex that I was excited about something - that I'd finished a first draft or gotten a map drawn - and she'd respond with stuff like, "Did you see the witch Bath and Body Works diffuser?" (I had to beg her to congratulate me. I would do so for her when she had accomplishments, but mine? Meaningless.) Back to Seasons, though. I've been anxious that it's too long. I'm not out to set some arbitrary word count limit here. I mean "Was this really necessary, or did you just get too self-indulgent, and now you have too many loose ends to tie up?" (This is exacerbated by my writing out of order and fearing I'll forget something by the end.) That's just my brain, there. Worried that I was excessive and have made a mess, rather than a coherent story. I'm also worried that I sound so egotistical now that I'm finding joy in talking about my writing/characters. (This ties in with the first issue, that I should "shut up" haha...) I had such a weird process for years. I enjoyed the process of creation, but I... thought I was shitting out garbage. Characters, writing style, story, everything. Someone once told me years ago that I wrote nothing but man babies, and someone else later said the same thing. Second person also said my writing style induced their synesthesia so they couldn't stand to read my stuff. There have been other things, those are just some examples. It's so painful. I don't feel like I can become a better author if I don't have helpful criticism, but I've certainly had the destructive stuff launched at me. I'm still working on myself. I was only 13 months ago I got self-conscious and decided to stop sharing any of my writing publicly, so I locked up everything on AO3 in a private collection, I deleted or hid everything on google docs and other sites. And I struggled to finish Rascal (which I posted the final chapter just a few weeks before that and then ended up locking it up, haha), and now I'm struggling a bit with Seasons. I don't always struggle with ending stories, but... sometimes I do, and it definitely sinks my mood. I'm lucky in that some people have found my writing and been supportive. I'd be fucked if I didn't have @yume-x-hanabi being so supportive and nonjudgmental. She's a good writing buddy. And I have another friend who also just checks out my writing despite meeting her through fandom as well, even picked up Seasons despite the heavy content. ;A; That's a blessing. But sometimes I'm still working on saying, "No, I do love myself and these things. It doesn't matter what other people have said. They're a few people. They were mean. They don't define you or your work." Still, it sneaks up on me and leaves me scared that I have more work ahead. That I need to get better and better now, because if I want a career out of this, I'm going to have to bust my ass. And it's funny... I do enjoy the process of writing, I love building characters and writing stories and creating lore. I just wish after it was all done, I wasn't fearful that I just hot-glued a bunch of steaming shit together, and I refuse to see it...? XD; (Sorry that's a disgusting mental image, but... it wouldn't hold together, is my point.) Anyway, sorry if you read this for rambling so much. It's kind of negative. I gotta cheer up. ;A;

[chasing-rabbits]

I wish more people would think about this before they judge someone or think it’s a good idea to open their mouth. Because at the end of the day it’s not really their business anyways and it’s just ignorant and often it’s to say something rude or give you nasty looks. My mum has been more accepting of using a wheelchair for certain situations over the past few years before this she had a walking stick but tbh she should’ve used a wheelchair long before this. She has Fibromyalgia and non epileptic seizures. These seizures are caused due to sensory issues such as loud noise, touch or a lot of movement going on in front of her and often there isn’t any decent warning signs of when this is going to happen. She also has fatigue and pushing herself to walk more than she reasonably should causes her a lot of pain which can in turn trigger these seizures but also in general she cannot walk long distances even with her stick. She currently only uses a wheelchair in very limited situations such as at the airport. She has gotten better but she tends to not use a wheelchair as a preventative measure in her day to day life and it often means she ends up causing herself more fatigue/pain that can sometimes take her weeks to recover from or she has a seizure and we have to get her home ASAP. This obviously affects her quality of living and she doesn’t really go out too much anyways due to her fibro and fatigue. On the downside the looks I’ve seen her get at the airport going via special assistance in a wheelchair is disappointing and it makes me mad tbh. She luckily hasn’t received any major issues using a wheelchair so far just a few shitty looks and muttering under their breath in a not so subtle manner. Although she rarely ever uses one outside of that & tbh she doesn’t go out much due to her fatigue.

today for disability pride month, i’d like to discuss something not many able-bodied people know about: ambulatory wheelchair users!

first, “what is an ambulatory wheelchair user?”

it’s a term used to describe people who use wheelchairs that can stand and or walk in some capacity. the amount a person can walk can vary greatly between ambulatory wheelchair users, some may need their wheelchair 60% of the time, some may need theirs 90% of the time.

“why would someone use a wheelchair if they can walk?”

there are tons of reasons someone who can walk might use a wheelchair, such as fatigue, balance, heart problems, pain, fainting, and many, many more. it could be dangerous for them to walk.

“isn’t that being lazy?”

nope! take shoes, for example. you *could* walk without them, but it would be painful, and could give you cuts or blisters. would you consider wearing shoes to be lazy? also, many disabilities and conditions are progressive, using a wheelchair can help slow progression and damage to your body.

so next time you see a wheelchair user move their leg, remember that ambulatory wheelchair users exist!

[zenmongoose]

I miss you. I have nonstop thoughts about you and it makes me feel like a crazy person. The clomipramine worked for maybe one week and I’m wondering if I was just ovulating that week. And getting the hypomania from a new AD.

I’ve had fibro pain and fatigue the past two days. And feel even lonelier because of it. I was trying to eat better, too. But it wasn’t enough. Could also be a post period hormone dump.

Don’t have anyone to just sit with me when I feel bad. Plenty of people will go out and enjoy hypomanic Ali. No one wants tired Ali.

I wish I had the balls to just ask you if I should still be waiting for you to move out. For all I know you are engaged to someone else by now. But you asked about going to a play with me.

I know I don’t deserve anything from you. And I’m honestly so terrified of destroying your life any more than I have. It’s easier to just react to everything when you don’t trust your thoughts, than to decisively ACT on something. I don’t know who has the wheel at any given moment. Is it drugs talking? Hormones? Trauma? Depression? Selfishness? Childishness? Is it really me?

I’ve been trying to guage by how often I feel a way. And I mostly always feel loss, grief, and missing you. Last couple weeks have been a delusion that we are totally getting back together. Once in a while I will feel anger and “I’ve been miserable and waiting my whole life I deserve better”s.

When I get stuck in an overthinking loop I try to journal it or scrapbook it or get it out somehow that isn’t trauma dumping it on you or anyone else. I don’t tell my therapist anymore because I want you back and can’t stand being told why not any more.

I don’t tell my friends or family for the same reasons.

I do feel like I have gotten so much better, that my bad days are less frequent, but today I just feel the loss more deeply. Probably because I have been stuck in delusion for so long. What comes up…

I hope we both find happiness and freedom from loneliness. I wish there were an obvious path or someone to hold my hand along the way.

I tried to leave breadcrumbs to all these letters to you I’ve sprinkled like powdered sugar over the internet. I don’t think you were looking or ever will see them. But it’s proof that you were loved so profoundly that it endured.

And if my wishes came true, it would’ve been you.

[soulvomit]

Reading ‘Aspergirls’ but I don’t relate to the emotional parts of the narrative. Nor do I relate to the emotional parts of the narrative in Highly Sensitive Person or many modern autism books. Sigh.

It helps me understand the emotional autists in my life better (new perspective on my ex husband), but... 

This is what my emotions have been like my whole life:

Default mode:  Robot Girl Then, here and there, with great frequency in childhood but diminishing frequency into my 30s: OMFGWTFBBQDIEDIEDIE SODIFJSDOFIJ!!!!!!!!!!!!!!!!!!!!!!SDOISDFOISODIFOSDIFJWOERUWEIRUWOERIUWOERIUAOSDIOSIDJOQIWeoqie!~!!!##$@#%)@#$(*@#%(*@)#%(*#%

Either Robot Girl, or GLOBAL THERMONUCLEAR WAR

Nothing in between. No setting between 1-11 for my emotions.

But...

As of my 40s...

it’s 

Robot Person, and sometimes I get a bit animated or a little mad. I even get amused sometimes. 

But I do not have strong emotions anymore.

It’s like something just burned right the fuck out.

My absolute overenthusiasm that I used to have about things I got enthusiastic about, is gone, too.

And... this actually superficially looks like I’ve “grown up” and gotten over so much of my autism, or something. Because it can pass as grown ass adult emotions. Being dead inside or something is considered socially appropriate at my age. I don’t feel like I’ve cried in about six years. 

But it’s actually in some ways got *different* failure modes, and one of them is that I can’t actually generate enough dopamine to DO ANYTHING much of the time. I wonder if an ADHD med would actually be helpful at this point in my life - perhaps at a lower dose than I took before - it dialed up the extremes EVEN MORE when I was on one 14 years ago.

But also - the way my sensory overload has manifested, has changed shape over my lifetime. I haven’t cried over it in a long time. I haven’t lost my shit over it in a long time. At some point, I just progressed to dissociation/shutdown. 

And then later, it became chronic pain and migraines. Like, what would cause a meltdown in the past, would cause a fibro flare or migraine now.

In fact, I don’t cry, I get migraines, and basically I have to get catharsis through a hard stim when I feel that coming on if I don’t want to be in my room with the light off for the rest of the day, or somehow find some trigger that will actually make me cry, which is harder and harder as I get older. 

But I am definitely not "sensitive”

[raspberryconverse]

I think the worst part of this process is the guilt I feel about everything.

Like I know I shouldn't feel guilty because I'm working to make myself better, but I still do.

I feel guilty that I feel so shitty all of the time and I can't do anything. Yesterday we took down our embarrassing front screen door and my spouse was all gung ho about putting up the new one today, but I'm so fucking nauseous and can't do anything. They were pushing me to do it "right now" and I had to yell at them because I feel shitty and just can't do it right now.

"Well, I'm going to do something else if we don't do it now." "Then go do something else because I feel like I'm going to barf."

So now I'm crying because I want to do things but I'm so nauseous that I don't even want to move. At least I slept a little better. I woke up restless after 6 hours again, but fell back asleep an hour later for another hour and a half, so that's good.

I talked last week with my psychiatric NP about how my spouse really has been understanding through all of this, but it's so hard. I've mentioned before that my spouse has fibromyalgia, so a lot of the time they don't have the energy to do things or if the barometric pressure changes drastically, they get fibro drunk or their body just plain shuts down. This often leaves me as the one who has to do a lot of things because I have the physical ability to do them. Now that I'm in a position where I physically can't do things, I feel really guilty. It's been weeks since I've really gotten to work on a home project because I've been so nauseous and exhausted.

I've talked about this with my therapist too. Even before the medication thing, I struggled so much with the need to get things done. I know owning a house is a never ending series of projects, but I just want to get shit done. I want to invite people over and show off all our hard work. But the hard work has to be done first. And there's just so much of it. I need to give myself some grace when it comes to all of this, but it's so fucking hard. Rest is also important. I work full time (well, technically full time, but lord knows I don't actually work a solid 40 hours a week because of the nature of my job) and have 2 dogs and an elderly cat to take care of. That post that's been going around about wanting to clean x this weekend? Oof. It's not just cleaning x (because that totally falls by the wayside too), but doing x. My house feels like a disaster all the time. If I hadn't lived with hoarders (dad, uncle and grandparents) for so many years, it'd probably drive me crazier than it actually does. My tolerance for mess and chaos is extremely high.

I would love to get up off of this couch and do something productive today, but I just don't know if that's going to be possible. Maybe I'll go back to packing up my sweaters in my space saver bags so I have more room in my closet for tank tops (half of them are in my spouse's closet right now). That'll feel like I actually did something and I'll be able to see it every day.

I need to just let go and accept that right now, my spouse has to be the one to pull more weight right now. I have to remind myself that that's ok. This is what marriage is.

Ugh.

So it's day 2 off nortriptyline (and also day 2 on blood pressure meds) and I spent most of the day nauseous.

I also didn't end up going to bed until almost 5 (it's always weird when the sun is starting to come up when you're going to bed) and then for the first time in forever (aside from the times I've tried to make myself go to bed at a "reasonable hour") I haven't been able to fall asleep.

And it's not like I wasn't tired. I definitely got there at like 4, but the internet is distracting and I have a ritual (YouTube videos of Nick & Charlie/David & Patrick), so I finally corralled the dogs upstairs at like 5 to, read my chapter of my book and actually tossed and turned for a good while.

I'm really mad at myself because I made some good progress on my desk yesterday and I really wanted to finish it today. I'm at the part where I have to hand sand all the not flat surfaces (the legs and it's also got these decorative bits on the sides that are the same as the legs) and I just couldn't do anything today. Between my lack of sleep and nausea, it's a miracle I even put clothes on.

My therapist always tells me not to be so hard on myself for not getting the shit done that I want to get done. It's just frustrating because there's so much to do. We just had goals this weekend and I feel like a failure for not doing anything today.

I know it's probably going to get worse before it gets better, but why does it have to? Why can't I have an easy time at anything? Well, besides work.

[ofvoiding]

Had a not great day re: chronic illness but managed to have an interesting conversation with a good friend who also happens to be a trained disability sensitivity reader ( @dragonspeakings​​ ) about ableism in media, and particularly about Legacies, because that’s how hyperfixations work!

I’ll be the first to admit that ableism is something I’m still very much learning about (though I’ve gotten a crash course in the last six months of the worst kind). Anyways, I was trying to get to the bottom of the “Josie is ableist” argument because it wasn’t quite landing for me and I wanted to get the opinion of someone who has actually worked in the field and has personal experience with it to walk it through. My understanding is that the argument comes from 1x15 where Hope warns Josie that an impending Lizzie crash is coming, and Josie says “she did it to herself” and continues on to clarify that Lizzie is deliberately not choosing to take her medication because she doesn’t like the way it makes her feel. 

So the reason why this wasn’t quite landing for me was because it didn’t really sound like Josie was saying Lizzie was responsible for being mentally ill but rather that Lizzie is still responsible for her actions despite her mental illness. I wanted to make sure I wasn’t missing part of the argument (so if there’s more to it than this, someone can feel free to politely explain). What V explained to me was that while the line isn’t great ( which we both agree with ), it’s not really ableist for two reasons. 

1) Josie wasn’t saying this to someone who did not have access to mental health resources, had been abruptly cut off from treatment, etc. Emma was still at the school as a resource, and Alaric and Caroline had clearly spared no expense to help Lizzie with her bipolar disorder. If Lizzie knew that she was not taking her medication and that a crash was impending, she had other resources than her medication to turn to, and was not being denied treatment altogether.

2) When a person has a disorder (physical or mental) that is helped by the use of medication, they are responsible for the person that they are when they choose not to take said medication. There are a million and one valid reasons to stop taking medications, and that’s a personal decision. However, we are still responsible for what happens as a result of not taking it. If I chose not to take medication for my fibro or my depression, I have to accept that with that is going to come with extra pain / emotional upheaval, and I have to do what I can to mitigate that. If Lizzie chose not to take her medication for her bipolar, she has to do what she can mitigate the emotional upheaval that she knows will come as a result. Josie pointing out that Lizzie isn’t doing that to help herself isn’t ableist, though she probably could have phrased what she did better.

V also pointed out to me that Lizzie also has had huge ableist moments herself, and the one they cited was in 4x06. She finds the spell to try and heal Alaric and says something along the lines of “what does it matter if he dies a day early” as justification for killing a terminally ill man. While she may not have gone through with it ultimately, she was fully prepared to and we might never know what would have happened if she hadn’t been interrupted by the man’s daughter. Regardless of the outcome, it’s a clear example of Lizzie herself showing a disregard for the lives of disabled people, particularly those of severely disabled people. 

The point of this post is not to argue who is more ableist than who but more just a brain dump of exploring the arguments and I thought I’d share what I thought was an interesting conversation. These characters are teenagers. Teenagers are dumb and messy and say stupid shit that they shouldn’t. It’s not a pass and they should probably work on that, but also.... they’re fictional teenagers. Literally, don’t bring hate to my door about this, I’m too tired and old for this. 

Anyways, thanks again to V for walking me through this because the autism brain wasn’t going to let it go until I got a fleshed out response. 

[hillbillyoracle]

Dealing with Stress When You Live in a Rough Place

This isn't necessarily tarot or shadow work, but I wanted to write a little bit about strategies I've found useful for dealing with my neighborhood in it's current state. All of this can apply to managing stress generally but I'm focusing on folks in my boat. I'm incredibly sleep deprived so it's going to be rambly - I'm warning you now. But hopefully this helps someone.

I've shared a little bit about what's been going on in other posts; we hear shootings at least weekly, people will play loud music so loud the window rattle really late at night, all out brawls have broken out in the parking lot, our neighbors bang against the walls even in the middle of the night, most our neighbors have made it clear they don't like us because we're gay, we've had our car broken into at least 2 in the last month, kids have taken to beating our cars with sticks, climbing on and under them, screaming in front of our house, beating on our door and running off - like y'all it's a lot!

I talk about this so folks can know where I'm coming from. Some folks read this and they're horrified, some folks are going to read that and be like fuck that's tame. How hard a situation looks really does depend on what your normal is and how you were raised. For me, it's pretty intense. I was raised in out in the country so I didn't grow up living really close to people like I have to here in the city. And country neighborhoods have their own brand of rough, do not underestimate it, but most of what I've compiled here is going to be about living in close proximity with other people in areas with high crime rates.

Mindset Shifts

The Sooner You Accept Your Lack of Control - The Better

And I mean really accept it. Not just intellectually understanding that there's not anything you can do, but getting as okay with that as you can manage. For folks who are already traumatized that's a whole lot harder to do. Living in a space that traumatizes you daily will also make that harder as time goes on. But it's been some of the most important work I've done while living in a place that this. Sometimes I cope by being very public about what I'm going through, sometime I cope by

Sensory Management is Not a Luxury, It is a Necessity

This has become overwhelmingly clear to me that sensory overload in rough neighborhoods is a wildly underdiscussed health issue. There's measurable health differences in people who are exposed to a lot of noise versus those who aren't. I'm autistic so this is something I have to do just to function but I've seen a huge shift in my girlfriend's mental health since living here too. Take it seriously and try to attend to it just like you would any other health concern, making it a part of your routine. This is where adapting Polyvagal strategies has come in handy.

Good is Still Good Even If There's a Ton of Bad

There are very few moments of pure joy in a neighborhood like this. One of the reasons that a gratitude practice has been genuinely helpful is that it's shown me how much good can get swept away in the tidal wave of crap in a place like this. So that I don't feel helpless or internalize how worthless places like this are designed to make you feel, I try to resist by reflecting on the good. IT helps me feel like my life still has meaning while I'm living here and it's not a waste to be right where I am right now.

I Am Not Failing Myself For Not Getting Sleep, Food, Safe, Etc

I'm lucky that we've been good on food but sleep and safety have been in short supply. I realized I often felt like I was a bad person for being in this situation where I couldn't sleep, I criticized myself for not being able to sleep through all the noise and getting worked up. I have to remind myself daily that I'm not failing myself for what I can't really control. I'm not a bad person because of what people around me choose to do.

Polyvagal Strategies Adapted

Nature

Ideally, when you're trying to regulate your nervous system, you'd want to get out into nature more. It's just flat out not accessible or safe to do so here. I'm lucky that my room faces a nice tree and when I'm getting stressed, I take some time to just sit and really look at it. I try to notice the details. I also really enjoy feeding birds on my window sill. I invested in a big bag of bird seed with some Christmas money that's lasted me at least a year now but I used to get bags for about 5 dollars at Kroger. If you can't get close to nature, lure it to you.

Need something totally free? You can also pull up livefeeds of bird feeders on YouTube. I used to watch them when I couldn't walk to put out birdseed. Still very helpful. Nature cams in general are great. Put on a nature doc like Planet Earth. Change your computer and phone backgrounds to have natural landscapes. Even just sketching landscapes and having landscape are around your space can help.

If you can buy some soil, dig some up, or swipe some from a public garden bed, you can grow some small plants on your window sill. You can grow a lot of seeds from vegetables and some fruits you get at the store. You can also collect seeds from trees and try to grow them (it's difficult, plant several at a time). Take cuttings of plants you can identify as safe. Extension services will also sometimes send seeds for free. Taking care of a plant really helps us spend more time in the restorative part of our nervous system.

Sound

At the intersection of sound and nature is nature noises. If you're trying to block out your neighbors anyways, nature noises are the best option. I've had the best luck rain and storm sounds. Water noises in particular have a calming effect on our nervous system. If I really need to block something out I'll layer a rain generator over some music I like (rain sounds + Elliot Smith = a vibe).

Music in general can have different  activating and calming effects on our nervous system. Pay attention to what music activates you and makes you more likely to be in conflict with people when you listen to it and what music makes you more social. Physically relaxation is harder for me personally to gauge. As a person with trauma I can't always tell when my body is relaxing or not. So paying attention to how I treat others helps me check myself.

Temperature + Touch

When we're warmer, we tend to feel more socially connected than when we're cold. Put on some extra clothes, pile on the blankets, take a bath, or grab a space heater if you have one. It's worth increasing the temp a little if you're stressed. Too hot and we can begin to feel crowded out. So if you're feeling the need to flee, it's worth trying to cool off a little. I usually do this by splashing some cool water on my face.

While we crave touch from others, touch from ourselves also helps calm our nervous systems! Jin Shin Jyutsu has been super helpful for me. There are a few videos online. I recommend searching Facebook for a woman local to me - Jennifer Bradley. I took one of her in person classes before the pandemic and it's been very helpful especially around sleep. I think the only place she's got her recent videos up is on her Facebook page but they're worth tracking down. She's a very good teacher and just a very soothing presence in general.

There's some evidence that just imagining being hugged or held is calming on the nervous system. Some goes for imagining ourselves out walking in nature. Don't be afraid to spend time daydreaming!

Breath + Movement

A lot of unsafe neighborhoods make common advice like going for a walk completely out of the question. However, even just moving more around your space can help. Yoga has been very helpful to me. My partner finds bodyweight exercises really help her. Any movement you feel good doing counts. Including movement you imagine yourself doing as well.

Breathing is movement, or seems to have a similar effect at least. I really recommend checking out a few breath work strategies to use. You've always got your lungs on you so it's easy to use. I like the in for 4 counts, hold for 7, release for 8 pattern. Breath is a direct line to the nervous system and I try to do a breathing pattern several times a day just to regroup.

Cognitive Strategies

Journal Like Your Life Depends on It

I'm not joking. TMS journaling - journaling stream of consciousness very intensely for about 20-30 minutes and then destroying what you've written - has been key not only to me surviving this place but having fewer Fibro flares than when I was living in much calmer places. But honestly all journaling is helpful. I've been keeping a daily journal in Notion and that alone has been helpful. Making sure I've gotten as much as possible off of my mind throughout the day has helped so much. Find a journaling strategy that allows you to take the cognitive load of (or a few) and practice them as often as you can. Not into journaling? I used to take videos of myself talking into the camera and save or delete them depending on whether I wanted to come back to them. Are words rough? Draw your feelings or scenes as you saw them.

Find the Story That Works

There are a bunch of conflicting ideas about what the right view of trauma and the story of it is. I personally really hate any narrative that places me as a victim. For better or worse, I like to look at what I've learned in any giving situation. So in my current situation, when I'm overwhelmed, I remind myself that I'm only getting a glimpse of what some people in places like this go through. It's increasing my empathy and expanding my awareness which allows me to better serve others. It's made me more committed to keeping my materials accessible over profiting. There's been a lot of benefit when I frame it that way. And that works for me. If that story isn't helpful for you - work to find a frame to narrate your experiences - as they're happening - that help you feel more whole.

Conclusion

I'm not sure if these strategies will work for other people but I wanted to at least have something out there than people could hopefully find if they're struggling with the same thing. Basically, if you can't fix it - manage it. Find ways to make the experience less traumatic if you're able to. Manage your sensory input. Do what you can with what you have where you are. Too many folks will tell you that you absolutely have to change your material circumstances before you can address mental health but for many of us that's just not possible. Or in the words of one of my favorite Buddhist teachers, Robina Courtin, "If you can do something, do something, but if you can't, what are you going to do?"

[crazycrackersworld]

Someday...

Someday I'll wake up and I won't miss her, she won't be the first thing that goes through my mind, it'll just be some random thought.

Someday I'll wake up and I won't be jealous of him I probably won't even hate him I just won't care one way or the other.

Someday I'll wake up and my heart won't hurt and I won't feel like there's a big hole in the middle of me.

Someday when I put my head on the pillow and I close my eyes I'll fall asleep and I'll have peace not nightmares not night terrors just peace.

Someday I'll be able to go through a whole day without 50 things reminding me of her, of us. I won't see her everywhere I look I won't hear her everywhere that I go.

Someday the thought of not growing old beside her will no longer upset me no sadness no anger no regret no nothing.

Someday when she does pop into my head it'll just be fleeting memories good memories memories of the good times the special moments that we shared of which I can't even begin to count. And those memories will not make me tear up or not be able to function don't just bring a smile to my face because that's all they'll be is good memories of Good Times.

Someday the very thought of him were the mention of his name will not fill me with rage with hatred with jealousy with anger I'll just not feel anything at all. It will be as if he doesn't even really exist I'll just you know hear the name and go on with my day.

Someday the thought of him and all the things that he's done wrong around her for her to her won't bother me anymore because I'll know that's what she picked that's what she chose and if that's what she wanted eventually I won't get mad about it. Eventually I won't get upset that he got so many more chances than I ever did that he was forgiven so many more times then I ever was. It won't bother me that he was given chance after chance to alter his behavior and treat her the way she deserves to be treated and he never did but she kept him around anyways.

Someday it won't bother me that he isn't the only one that has gotten chance after chance my friend in Michigan has given chances for 7 years my friend here in Arizona has given chances to more guys than I can think of and she's giving those chances more times than I can think of and I'm sure there are thousands if not millions of other men and I shouldn't even use that word but whatever there's so many of them that women just give chance after chance after chance.

Someday the thought of those men all those other men getting chance after chance while I never get chances or the benefit of the doubt for that matter, someday I won't feel that they are all better than me.

Someday I will be okay with the fact that for the briefest of time, I had a love that was so bright and so pure and so perfect that everything else in my life was brighter for it.

Someday I won't be playing a video game and suddenly think what would she say if she looked up and saw me doing whatever I was doing in the game. And she won't shake her head laugh scold me by saying Sean Michael as I do something foolish and stupid in the game.

Someday Christmas lights Christmas trees Christmas carols Christmas clothes won't instantly remind me of her how much she loves that holiday. And it won't remind me that even though I generally hate Christmas the ones I spent with her and her love of Christmas or some of the best ones that I've ever had in my life.

Someday the thought of her being just in his presence whether it's sitting next to him in a bar or being at his house in stupid sharing a bed with him, none of these things will make me sick to my stomach or make me want to grab a needle in the spoon.

Someday I will feel whole again and I will know that I will always behold because I have put up barriers at this time I will never let anyone through.

Someday I will be okay with the fact that I am capable of loving somebody and I am capable of treating someone with kindness respect love and caring, but although I'm capable I refuse to do it and I'm okay with that.

Someday people telling me that I am a good man, and a good person, and a good soul, won't make me wonder that if those things are true why am I alone?

Someday when I close my eyes whether it's at night in my bed or driving my truck to my job for the day or laying outside under the sun, but I won't see her face. I won't close my eyes and see her beautiful soft alabaster skin her adorable lips her beautiful brown eyes that I can stare in and just get lost in and I won't see her hair so fiery and luminescent like a sunrise or a sunset come to life.

Someday the sound of her voice, or the sound of her breathing, will not fill me with peace and wonder and warmth. It will no longer be a voice that lifts my heart and lifts my spirits and touches my soul.

Someday I will honestly believe and come to terms with the fact that although I did a few things right and I did a few things I guess out of the ordinary, that she deserves better than me. I will believe that I probably never really deserved how she felt about me, and I will believe that she can certainly do better than me.

Someday I will believe that she deserves more then what I gave her, and she deserves to feel however she wants about me because of what I did.

Someday I will be able to sleep through the night without nightmares bad dreams hallucinations of what I did.

Someday I will honestly no longer believe that she is the most beautiful woman in the world. And I won't compare negatively I might add, every woman I see to her. I'll be at a place where I can just look at a pretty woman and not specifically look for and point out all of the flaws, that I see in them that I don't see in her.

Someday I will be whole again.

Someday I won't get random spasms or pain or numbness or migraines, because I no longer have that weird connection that stretches 1300 miles.

Someday I won't have the empathy or sympathy for whatever pain she's experiencing. That doesn't mean I will stop caring or stop worrying it just means that if she were to call me cuz she's having a bad day whether at work or a bad fibro day or a massive migraine, I won't have the overwhelming desire to take care of her.

Someday she might reach out to me for some reason whether it be a text or a phone call, and instead of immediately trying to comfort her or make sense of whatever problem she's having, and I just say to her it's too late.

Someday the whole situation might actually make sense to me, instead of confusing me, making me angry, or making me feel second best.

Someday, most likely all these things will be true and I will have learned to live with all those things.

Someday...

But then again maybe that old song was correct... And someday Never comes.

[maladaptivemischief]

Tumblr didn’t give me any notifications and I never get asks so i didn’t see this until just now I’m so sorry!!

This isn’t a dumb question! For me personally when it comes to pots the reason I need to lie down on the floor is because I’m too dizzy to stand and I start to black out

Pots causes the heart to beat so fast that it isn’t pumping any blood (before I was put on beta blockers mine used to get up into the 220s before I even started to notice it)

What I experience in particular is called Near-Syncope which is essentially all the symptoms that lead up to unconsciousness without ever actually losing consciousness!

I lie down when i feel it coming on because it’s safer than falling down and there’s really not enough places in public to sit down if you need to - and at home if i’m not within collapsing range of furniture then I’m shit outta luck

Also you aren’t wrong about trying to get a diagnosis - I was incredibly lucky with my ehlers-danlos and my pots diagnosis because my doctors were competent and trusted me to know my own body (They also, y’know, actually bothered testing me - scuse me while I side eye some other doctors I’ve seen)

I wish I knew more about fibro and rhuematic illnesses but I’m gonna be real w/ you chief, I have some p severe memory issues so I’m not any kind of authority when it comes to illnesses that I’m not living with day to day

Although one thing I can say with confidence is - It doesn’t matter which one is worse! (please read that in a positive tone!) Knowing is so much better than wondering! Again from personal experience, even if it’s something that can’t be cured you’ll have some idea of ways you can adjust your lifestyle to help alleviate symptoms - it won’t always be painless but it’s the first step to making your life even the smallest bit easier!

I can relate to people thinking I’m faking - my own brother didn’t realize that I was actually disabled until I was collapsing in front of him multiple times a day because of how much worse my heart had gotten - It took him 20 whole years and multiple doctors confirming how fucked I am for him to think I wasn’t just being dramatic - My best advice for people like that is that they don’t matter

Yes loved ones included

Especially them

The people who love you will try to deny you have any kind of “flaw” (Ugh, abled ppl amiright) or are in pain because it hurts them to see you that way, but with time and gentle education they’ll realize that they’re hurting you worse by denying your reality. And if they aren’t trash they’ll do better

The people who don’t love you and pull that shit can bite their own dicks

Regardless of what other people think, you know your own life and body and mind better than they ever will, and if they try to deny your reality they’re deluding themselves for their own comfort which is just plain selfish of them

Also - GOOD LORD can I relate to people dismissing physical symptoms as the result of mental illness - I have PTSD anxiety and depression and one time I went to the doctor because I had such horrible chest pain that I couldn’t speak and ended up in the ER - When I went to my primary the nurse that came in first kept insisting that it was anxiety and questioning me about my mental health and UWU maybe its the stress UWU

Turns out my spine was so weak my ribs were collapsing!! Which the dctor who came in after her figured out in literally 3 minutes

You aren’t bothering me and you aren’t rambling! Please don’t say sorry, you haven’t done anything wrong! I’m not an expert of anything, I can’t diagnose people and I think I’m the last person in the world who someone should seek medical treatment from but this ain’t that

I’m sorry you feel outcast, I can 100p relate to that too. It’s super lonely being disabled - what friends you have tend to leave you behind - family tries to “help” but they don’t understand and it puts a pressure on you to do the impossible and it isn’t fair that you have to go through any of this.

All I can really say is if you (or anyone else) need to vent to somebody who gets it I’m right here - I don’t always answer on time (I have my bad days too) but I’m here with you and I get it

And sometimes for me that’s what helps the most

This has been super long and I’m sorry to my followers for clogging your dash lmao but this is important to me and I’ll do it as many times as I have to.

And to you anon! I’d like to leave you with this note my favorite doctor I’ve ever had gave me when she finished her residency and left for another city

I carry this in my wallet and it’s advice I live by

Find yourself a Dr. B

You got this

[trialsofaninvisbleillness-blog]

Living through bilateral mastectomy while dealing with severe fibromyalgia

This definitely has been my worst year ever. I finally got diagnosed with fibromyalgia, which was a blessing and a curse. Being diagnosed with fibro isn’t anything I would even want my enemies to go through, but having an answer and now a direction to work in, is helpful. I am not running blind. Just as I got into a pain clinic and started new treatments for my fibromyalgia I got diagnosed with breast cancer. Than to top that off, I found out I carry the BRCA2 gene. Instead of doing a lumpectomy and radiation I went for the bilateral mastectomy and reconstruction. Which turned out to be a good thing because the cancer in my left breast nearly doubled in size in a month. My right breast had cancer in it that wasn’t there a month ago on the MRI.

I read the literature they wanted me to about breast cancer and mastectomies. But the information didn’t come close to what I went through. Of course it doesn’t help I have fibromyalgia that’s gone untreated for 18 years so it’s just out of control and feeds off the pain making it worse and worse. When I first woke up after surgery I was in so much pain. I didn’t know until I woke up if the plastic surgeon was able to put in the implants. He was.

The first 24 hours in the hospital my morphine was being increased .5mg every 30 minutes to try to get the pain under control. The most difficult part was being wrapped up in a tight ace bandage that was putting pressure on every trigger point in my chest. I was able to have the doctor unwrap me and loosen up the bra so it’d put less pressure on my pain points, which helped. What didn’t change was the tight feeling around my chest and like I had two cold stones laying on me.

I was in the hospital for a few days. Besides fibromyalgia I also have a genetic disorder that affects my clotting so the doctors were dealing with that and the itchy rash I was getting from my antibiotics and oral pain meds. Benadryl was added to my log list of medications. Had to take two pills every four hours just to keep my rash from getting out of control.

Leaving the hospital and being driven home seemed like such an ordeal. Had to have a soft pillow against my chest between the seat belt. The warmed seats were a nice treat from the icy cold wind that was going on outside.

It took a couple mire days before my chest stopped feeling cold and plastic like. My chest is still completely numb but I feel a slight tingling in both breasts and the warmth of them lets me know the implants are taking and that I’m healing.

The drains, haven’t even talked about those. I have two drains in, one on each side. They are stitched in to my side but they go up my side and around the top of my chest. At first you couldn’t see the drain under the skin because they were so swollen but now that the draining has slowed down you can see the drains under my skin so my breasts have a weird sucked in appearance to the sides and around the top of them. I was so hoping they would come out yesterday, which was 10 days post op but they were draining too much, still. Fingers crossed for next Tuesday they should come out.

Having the reconstruction done right after the mastectomy has added more pain and healing time. Right now I still can’t lift more than 5 lbs, which also includes pulling, pushing that amount. Plus I can’t raise my hands above my head. I haven’t been able to wash my hair for 11 days! Fallen in love with dry shampoo. I have doctors orders to be a couch potato until the drains are out. I do need to get up and walk a bit bit I have to be careful. I have been taking daily sponge baths which always wears me out but does make me feel better. Today I’m going to try to add washing my hair to my daily chore. Fingers crossed I can figure out a way to do it without raising my hands, causing more pain, or ripping out stitches from moving too much.

As the days go by I am slowly forgetting about how bad my first few days were. How ice cold my breasts felt and how my skin felt likeit was covered in plastic and totally numb. I’m so glad I am healing and when I think about at least 5 mire weeks of being able to do a little bit more, but not much, it seems like forever. But when I look at how far I’ve come in this short time, I know it’ll go by quickly.

When I saw the plastic surgeon yesterday he said my breasts were going to blister and both nipples. I have one blister that’s already healed. I had it right surgery. Because the surgeon uses a cauterizer to remove breast tissue with and decrease as much bleeding as possible, which helps to decrease the chance of cancer spreading, the results are blisters. Right now my nipples are bruised and look mottled. I’m actually quite glad they’re numb because I wouldn’t want to feel all the more pain from the bruising and blistering.

The oncologist surgeon also did a biopsy of my lymph nodes to see if any cancer cells had gotten into them. The biopsy is extremely painful and has quite a large cut. The one side affect of the biopsy is my right arm is way more painful to even move as the pain goes down my arm past my elbow, feels like it’s bruised. The area that is cut under my breasts feel like they were taken in and tightened. It’s a different sensation of tightness than what I have on my breasts.

I think it’ll be interesting how I feel in a week or two from now. It is the holidays and because I’m down and out, we aren’t decorating and I’m not cooking all our favorite holiday cookies and I can’t cook the Christmas family dinner I do every year. We do have family coming in from Dubai so even though I won’t be able to do hardly anything it’ll be nice to be surrounded by family. To me the holidays are about being with family and making memories, not spending a lot of money or items that mean nothing and eventually will be tossed.

Mid this cancer has taught me anything it is that family is more important. Making those memories, and making a mark in life so when you’re gone, a part of you is still left behind. To never be forgotten. Luckily I have a great family around me and supporting me. One of my sister-in-laws lives with us, I call her my sister because she’s been there for me more than anyone and has shown me more caring and love than my biological siblings. Even though this has been my worst year ever, and next year won’t be much better with more surgeries looming ahead, I am very blessed to have the best family ever that shows me love and acceptance and makes me laugh all the time. Life may be bad one one hand, but on the other, it’s never been better.

[daathren]

Me vs The Daunting Task of Applying for Disability

You would think this would be a straight forward thing. You put in the application, they look over your medical documentation, see that you’re sick, and boom! You’re approved! Especially if you are sick with something like congestive heart failure or chronic bronchitis but, no, applying for disability really isn’t that simple if you are aiming to get into the system as, well, painless as possible with the best possible outcome.

The best possible outcome could still have you fighting for years for your disability or SSDI (Social Security Disability Insurance). And since I’ve become disabled with chronic pain (fibromyalgia) on top of congestive heart failure from extreme obstructive sleep apnea (which was brought on by weight gain from lack of activity due to the chronic pain from fibro), I have been doing a lot of research into what to do to try to ensure my application isn’t denied too much. Soooo...I’m just going to go through it point-by-point and hope that it gives some clear insight into what I’m going through right now ON TOP OF trying to take care of my health.

Point 1:  Being approved for SSDI isn’t so much proving that you’re sick than it is proving you can no longer be a reliable worker

Yes, that sounds very crude but the people I have spoken with (people who have received disability within the last 5 years) and research I have done through the magic of Google and YouTube have all said this in some compacity. It is why people with conditions like severe nerve damage or amputations are still denied disability even when they go in front of a judge because, in some form or fashion, said judge still feels they can perform some form of basic full time work where they wouldn’t be too much of a burden on productivity with their accommodations. With this in mind...

Point 2:  Your medical documentation and treatment plan needs to be on point!

You can’t just go to a doctor once or twice, get a note, and show that to the judge as proof that you are disabled. They want to see a consistent history of you seeking medical treatment through not only a general practitioner (GP) but specialists that could reliably and practically treat your condition and see that you are sticking to the treatment plan. They want to see that you are actually trying to get better. And even after you are approved, you will be regularly screened to see if you are making any progress that shows signs that you can go back into the workforce even if it is a chronic condition that will never go away like Crohn’s or Fibro.

In fact, invisible disorders like fibro and chronic fatigue syndrome are treated with more scrutiny since there is no universal test that reveals that you have fibro like there is for Crohn’s or with something like nerve damage. I mention nerve damage a lot because one of my friends who I have gotten advice from has it as one of her disabling conditions. Yes, even that friend was denied quite a few times and fought a few years before she received SSDI.

Fibro is a diagnosis that is deduced through trail-and-error when other treatments and tests for other conditions do not work and that is the only conclusive disorder that can be determined for the issue, which is extreme pain. So, usually, you need to show that you really have gone through the ringer to try to resolve said pain issue with a medical team. This could mean months or even years of going back and forth between a GP and Rheumatology and Neurology and Pain Management, trying different medication combinations out for months at a time before switching to something else to try to remedy it.

In the end, a fully fleshed out and tried medical treatment history is only going to support the statement that your condition is severe enough that you cannot enter the workforce in a reliable capacity anymore.

Point 3:  There really isn’t a ‘magic’ state for getting disability in...

I’ve been hearing this one a lot of late. “Oh! Move to this state, it’s really easy to get SSDI here.” or “Avoid this state! It’s very hard to get SSDI here!”

Moving within the same city is hard. Moving within the same state is near torture. Moving out-of-state is grueling and honestly quite scary if you are moving somewhere where you know no one. And doing all that moving while you are disabled and you need help just makes it 10 times worse! Especially if you are expecting someone to move in order to have a better chance to get SSDI...do you even realize what you are asking them to do?

You are telling someone, who is chronically ill, to completely uproot their entire life in order to secure money they are already in desperate need of. Not only that, you are telling them to interrupt their medical treatment plan to move into a new medical system that is completely unfamiliar to them, which very much could mean they could be going MONTHS without medical attention that they are in need of.

Even if they are able to get into the new state’s medical insurance system within a month of the move, there is still the wait to get into a new GP as a new patient. And then there’s the GP referring them out to new specialists and then the new patient waits for said specialists. And most doctors are not going to take a previous doctor’s word as bond. They will keep you on the same medication regime (which could be a bad thing if you are in chronic pain) but want to run new bloodwork, maybe even new diagnostic tests if they feel the results are outdated.

Moving even within state could LITERALLY stunt someone’s entire health progression. But you are asking someone to do it on the idea that there’s an easier state to get SSDI in?

According to my overall research, my chances of getting SSDI here in Maryland are just as good as getting it in Colorado or Iowa. SSDI is a federal government program. The guidelines for approval for SSDI are set by the federal government, specifically the Social Security Administration (SSA). Now, is there judicial bias in case approvals that seem to be based by state? Absolutely! Do I think that bias is great enough that I should literally be hurting myself for it? No. 

The way I see it, it all boils down to the luck of the draw. I could move into one of those ‘magic approval’ states and then get the judge that just doesn’t believe that invisible disorders are real and denies my claim. So why should anyone cause that kind of discourse in their life on a maybe when they’re struggling with their health and with supporting themselves?

Moving should be something that happens after disability is received, if at all possible, not before and shouldn’t be suggested JUST for SSDI. Please, please, PLEASE stop thinking otherwise!

Point 4:  So what is my game plan?

Due to the pandemic, a lot of my pain and medical treatment got put on the back burner. My appointments with my Rhummie were months apart to accommodate for COVID practices and he refused to do TeleHealth. I also had a hard time getting in with my, then, GP due to COVID practices plus they really kinda blew off my pain. I was taking Tapazole, which one of the common side effects of it is a low grade fever! So you can imagine how that went over from time to time (and the reason why I had a thermometer in my house in the first place).

I couldn’t really re-establish consistent medical treatment until October 2021 and, well, that’s when I found out that I was in congestive heart failure and thought I had permanent lung damage. Thankfully, I’m feeling confident my medical team, which includes a new GP, is providing me with the best care. My goal, since October, has always been to take all necessary steps to not only get my health in order, which includes putting in an application for in-home care assistance, but to cover every base that I possibly could and aim to put in my SSDI application by the end of June.

My fibro pain manifests in a way where walking in constant pain. When I do walk, it feels like there is fire and electricity running up my legs into my lower back. I don’t even get relief from sitting because sitting puts pressure on the back of my legs in a way that it triggers the same pain. If I sit upright for more than 2 hours, it is horrible pain for me. Even sitting down to eat or hang out with friends becomes a timed event because it just hurts. Laying down I do get some relief but I have to constantly change my position, I need softer cushion points. I am just always in pain.

And some days, I couldn’t even last 15 minutes sitting up. Some days, I can barely make it to the bathroom when I’m desperate...

Things have gotten better now that I am in pain management but it is no where close to where I feel I could enter the workforce again. My current treatment has stabilized my pain (extreme level 10 days) but I’m still in constant pain. I just hope that all my research, all my planning, and all my trying will pay off with actual stability and some independence.

I really need it right now. 

[fibrotears]

Fibro Pain

   What we talk about & What we try not to talk

    When I first was told I could have Fibromyalgia, I of course, told the doctor she was wrong.  The pain I was feeling would go away.  That I would eventually get better.  Needless to say, I was the one that was WRONG, on so many different levels and would be on so many different levels in the near future.  

    I am sure I’ve mentioned before about how they wanted me to write in a daily pain journal about how I feel every day, about my pain, and how I can or can’t do certain things.  Well I won’t do that and that’s for another story, lol.  This is different, this is about how my pain, OUR pain affects us on a different level.  A level that people, that some people, could never imagine.  That maybe if they’re going through this or have a loved one going through this, it may help them understand, just a little bit what we deal with on just some small level.

    Sometimes when I’m in pain my mind just doesn’t want to admit it, it may be because I have trained my body to NOT give in to pain my whole life, regardless it is what it is.  This is when my body will react in different ways to get my attention. Nausea, Abrupt Lay-Downs as I call them, lol, and sometimes even my mind will play tricks on me.  Everyone’s body will react differently.  KNOW YOUR BODY.  Although the actual PAIN part is really important and is the main part of Fibro that consumes us at first you would think, then opens the flood gates.  

                      THE OTHER PAINS…….

    You just start realizing things are going to be different, and you probably aren’t sure how to deal with all these things.  Once you get your support team in place and even once you think you’re getting a handle on your “New Normal”, the truth is things are truly never going to be the way they were.

    Just so you know THAT OK!!  Anyone who tells you different is wrong.  Believe me, it took me a long time to learn that, as a matter of fact I’m still learning, lol.  This is where these other pains come in though.  Emotional Pains, Psychological pains, and honestly straight up learning pains, on top of all the actual physical pain.

    Fibro may not be Cancer, it may not be losing a Limb, or almost losing one, but it is hard.  Maybe because a lot of people don’t know too much about it is why people that have it get treated the way they do, but NO it doesn’t make it ok.  It is hard to explain how you feel on a day to day basis, especially when you get the looks you do, but I am telling you, keep telling people how you feel when you’re asked, it’s important to educate.

    Emotional pain can show up in many different forms. Internally has been my worst enemy, which as any of us know we are our own worst enemy.  I was kind of independent from the time I was 17.  I moved out, I was a junior in High School, and pregnant.  Yeah, I kind of always did everything for myself.  So now I was 38 and not able to work, get out of bed, take care of my family, and myself.  I tell you what, it plays a toll on your emotions, your mind, and every part of you, I struggle with that every day.  One of the things I LOVED the most was baking things for my boys and my husband… making dinner for them… well that stopped abruptly.  Let me tell you something else and I know this may not affect any one else this way but ME, not being able to do that is like cutting off someone else’s air supply.  It’s hard, to change, to learn to breath different air.  When you have other people surrounding you in your life, which most likely you do, it involves multiple emotions, and that’s where it gets even more complicated.  I used this analogy for something similar to explain myself to my husband the other day, it’s almost like I was once an Oak Tree and now I have to convince myself I’m a Maple Tree.  That was my mentality. Which was not the right one to have … you must find your New Normal not change Who you are!!

    We can talk about emotional pain for probably hours whether it be Fibro related or not, lets be honest.  Myself, personally have gotten to be (excuse the expression) A Cry Baby Bitch. I can’t stand it, I cry all the time. The tears just roll out of my eyes no matter whether I like it or not. Sometimes for pain, sometimes for emotions, sometimes I honestly couldn’t tell someone why.  When you are normally the one in the family that is the rock or the one that held everything together, WHOO. Yes, I understand to say the least.  I’ll explain it this way, you’re driving down the road doing 65 MPH, listening to the radio, your favorite song playing, drowning out the sound of everything else around you, and all sudden ALL FOUR TIRES FALL OFF!!  Yep I said fall off. Your body goes slamming to the ground… BAMM!! OK, now where ya going? Ya need some help, you can get somewhere but you just need some assistance and a little help THAT YOU NEVER NEEDED BEFORE.  I know it’s a little dramatic but it’s kind of how it is. I know I’ve had pain and had some warning signs, but It hit hard and fast.  Ok sorry I feel like I am getting off track, and I’m going to purposely leave some of my off-track moments in here because, this is about embracing our Fibro.  Anyway, so we need help we need our support team not some one to steal our spare or too drive by and splash that huge mud puddles up in our faces.  I’m not sure if this helps, and I know I’m going to refer to cars as a reference a lot in my blogging, for some reason that animals, cooking, and kids is how I relate…  

[justoneday-namjoonii]

Di piano e forte 05

pt. 1 ↠  pt. 2 ↠ pt. 3 ↠ pt. 4 ↠ pt. 5 ↠ pt. 6

↠Summary: Piano; A keyboard of cypress, played with soft and loud. Was it the ivory and onyx keys that let you escape from your reality…Or was it the man with sable hair and ivory skin.

↠Genre: Angst, fluff.

↠Warnings: This fic contains slight domestic and verbal abuse as well as mature subjects. Sexual assault. Mentions of depression. This may be triggering, read with caution.

author’s note: I decided to turn this into something a little more angsty, in couldn't resist lol I hope you enjoy.  Updates for this series on Thursday or Friday, enjoy!

You panted heavily, stretching your arms and holding your hands behind your head to give your lungs a break. The sun hadn't risen yet. You liked to jog early in the morning, to avoid the pounding heat of the sun. Mom always says exercise is a good way to take time for yourself, but you're using it as an outlet to escape from what's been going on. Your brother hasn't been home for a week now and you couldn't help but get worried—well, you were relieved and worried. The house was peaceful; but sad and even depressing. 

You were ashamed to admit how bad you've been emotionally eating. When you got home from work you went straight for the sweets, or you wouldn't eat at all. When you were at school you were getting by on boba teas. But this week you made the decision to get yourself together, eat better, exercise and even sleep more. It was making a difference, somewhat. After this you had a doctors appointment, your body pains have gotten better so you were hoping you could get off of the pills soon.

The bridge crossing the lake was just as beautiful as it was at night, it looked so poetic in a way. It was the kind of place friends should go to walk and talk about their innermost feelings and joys. When your dad was still living he'd take you and your along with him to walk around the city. The packed train station was a place to look for adventure, pick a place to stop and your adventure begins. The pictures in my distant memories were perfect—the current me was an image, a moment where loneliness had stopped time. No one would know how lonely you were. You didn't even know.

I drove back home, eager to get to the shower.

You walked up to the counter, handing the nurse your papers. “Hi, I'm here for the 8:45 appointment with Dr. Lu.”

“Ok, I'll check you in. You can have a seat.” She went to her computer and you went to wait in the tiny waiting room.

A few minutes went by and they called you to the back. 

“Hello Miss. Y/LN. How are you?” He came in, smiling with his usual clipboard and coat.

“Hi,” You sat down, holding your purse in your lap, “I'm good, and you?”

“I'm great.” He looked over his papers and sighed. “So, how are your body pains? Has the medicine helped?”

“Yeah, my shoulders still get to me when I'm really stressed but other than that they've been pretty good. I was wondering if I should keep taking them, you know? I just don't want my body to become dependent on it...it kind of makes me depressed, I shouldn't have these problems, I'm so young...”

He nodded his head for a few seconds before sighing. “Well, it's not fibro myalgia so that's good. And you can get body pain for a number of reasons, it's not always age. But you told me that sometimes your almost in tears from the pain, I do want you to live comfortably. I will prescribe the same pain killers and you can pick them up at the drug store.”

“Thank you Dr. Lu, I really appreciate.” He opened the door and you bid him farewell. When you got to the front desk the nurse gave you the prescription and you thanked her.

You left with your purse on your shoulder and the prescription in hand. You couldn't have been more lonely right now. With heavy steps you walked to the bus station and sat on the bench. 

When the bus finally pulled up you used your coins to pay before walking to your usual spot, leaning your head against the glass. 

“Ok ma'am, we'll have it out in a second.” The pharmacist went to the back to get the medicine. As you waited you saw a familiar head of hair in the isle behind you, you tried to lean back and see who it was but right when you went back the person left and they handed you the medication.

“Here you go.”

“Thank you.”

You paid for it and went on your way. 

“Here.” Yoongi tossed the wrist brace on Namjoons lap.

“Thanks Hyung.” 

“I don't know how you sprained your wrist cleaning the bathroom.” He laughed, Namjoon just shrugged.

He sniffed. “Hyung...” Namjoon gave Yoongi a knowing look before sighing. “Are you smoking again? You only smoke when your reevaluating your life or some shit like that.” Namjoon sat next to him on the couch, fastening the wrist brace.

“It's nothing, really.” He shrugged.

“Is it your mom?” He saw Yoongi’s expression bo blank, that's what it was. “It is isn't, what happened Yoongi, is she okay?”

He sighed. “Her and my dad are still legally married, he's in a relationship right now so he's trying to divorce her.” He rested his head in his hands as his elbows rested on his knees. “He's fucking sick. He knows she's under his health care, if that stops I don't know how she'll be able to stay at rehab.” 

“Can't she get help from the government? You know, like government assistance.”

“Yeah, but they'll just give her more shitty drugs and put her in a group home, to rot. Where she is now is much better for her recovery, it's expensive but she's getting better and at least I know she's safe there.” Yoongi was hiding it well but Namjoon could sense how upset he was. He was always worried about her, regardless of her troubled past. When he was at his piano late at night, thinking Namjoon wasn't awake, he wept. Those black and white keys were coated in his tears, he'd bang on the keys and shout in a drunken fit when he was really upset. He never remembered doing it though, he'd wake up with a bad hangover, not knowing the things he'd done the night before.

“I have to talk to him...I'm stalling though.” He sort of chuckled, he hated talking to that unreasonable man.

“You know I'm here, I'll do anything I can to help.” He gave his shoulder a comforting pat before he left. “I'll be at the studio if you need me.”

When Namjoon closed the door Yoongi leaned back on the couch, what was he gonna do? He only wanted what was best for her. He couldn't visit her often and when he did he had to prepare himself, mentally. She used to have a bad addiction when he was a kid, she got a hold of the wrong prescriptions and her life went downhill from there. She had never been more disappointed in her self, she blamed herself for all of Yoongi’s problems. That guilt alone ate her from the inside out. Just recently is when she started to learn how to forgive herself, except that he forgives her.

“Y/N! We're still waiting on those sandwiches!” 

“I'm sorry! They're coming out.” You were using the panini press to make what seemed the hundredth sandwich today. You were struggling to get the food finished so instead of looking for the things you tried to grab it with your hand. 

“Agh!” You hissed, there were now red grill marks on your hand. You threw the sandwiches on the plate and sat the food in the window. I'm done. You've been here since 9:30 and it's going on 7 o'clock. You ran to the sink to rinse off your burn. When you went to the front one of your coworkers asked if you could help with the ice teas.

“There's a peach black tea and- Oh my God, what happened to your hand?” 

Instinctively, you tried to hide it. “I-it's nothing, just a little burn.” You tried to play it off like it was nothing, even though it felt like your skin was boiling.

After the last cup of tea, you could finally leave, you got your bag, took off your apron and you went on your way.

It was drizzling outside so you ran to the bus stop, trying to shield your face from the relentless drops. There was a slight breeze in the air and you caught a whiff of smoke, you coughed a little looking for the source. You looked back and saw a pretty pale hand resting outside of a car window, skin of that color could only belong to one person you knew of.

Min Yoongi. He must've seen you too because he was letting down the passenger's side window. “Hey.” He took a long drag of his cigarette before putting it out. You never would've guessed he smoked, then again you never really know how people are or what they do when you're not around.

“Hi.” You held your hand above your head, trying to keep the rain from getting on your face

“Are you taking the bus?”

You nodded, pushing the strands of hair behind your ear with squinted eyes.

“You'll be waiting for a while, come on. I'll take you home.” He leaned over to open the door as you scurried over.

“Thanks.” You sighed, putting on your seat belt. 

When you looked over at him, you could tell there was something different about him. You weren't sure what it was, you just knew there was something off. You two sat there for a while, he was on his phone and you just waited patiently for him to pull off.

“What happened to your hand?” He suddenly pointed to the grill like marks on the back of your hand. 

“It's from the panini press.” You answered simply, licking your lips as you noticed how dark it had become.

"It looks painful.” He commented without actually looking at it. You just nodded. The drive was sort of awkward because of the obvious elephant in the room. The two of you hadn't talked in almost two weeks, you haven't had any piano lessons from him and he hasn't offered. But now he's driving you home—he actually remembered where you lived. He took all the right turns but of course ran into the usual traffic.

“So, are we gonna talk about it?” Yoongi asked suddenly, saying what you had been thinking about this whole time. You relaxed when he stopped at the red light, his attention, for the first time, undivided and on you. To his disdain you just shook your head, maybe he wanted a more in-depth answer but you didn't feel the need to give one. You're both adults and it was a little kiss. It shouldn't have consumed your thoughts like it did. He took a deep breath before sighing once again—he does that a lot you've noticed. “Do you still want lessons...” 

“Um...yeah, I still want to learn...” You cleared your throat, the smell of smoke still lingered in the car. It was hard to really look at him. His appearance had changed since the last time you saw him. His eyes were darker, his hands were paler and he looked tired. The last time you saw him you two had kissed in the rain, that wasn't something you just do with anyone. It was so impulsive and out of character of him, he didn't know what he was acting on. It could've been desperation, neediness, he could've been compelled by the desire of physical touch, he really didn't know. You kind of blame yourself for making the relationship so casual, you were the one who asked him on a date. Who does that to their piano teacher?

When he pulled up to your house you were both equally shocked to see the parking lot full of cars. He's back, you thought. The sound of laughter and music was an indicator that Jaebum was having a party.

“Sorry to bother you but, do you have any aspirin?” Yoongi looked to you with the tilt of his head. “I have the worst headache.”

“Yeah, I'm pretty sure we have some. I'll bring you one.” You got out and went up the stairs with your key in hand.

You didn't want to go in there. The horrid smell of body odor and alcohol was never something you were fond of. You pushed the key in the lock and opened the door slowly, you could already smell the marijuana and beer wafting in the air.

There were a bunch of people, you didn't even know he knew so many people. To get out of this suffocating environment you immediately went to your room, glad you decided to lock it before leaving this morning. You could hear Jaebum shouting nonsense, he was drunk, as expected. You quickly closed your room door and went to your bathroom.

“Aspirin, aspirin...” You searched through your medicine and you couldn't find any. You were gonna text him but quickly you remember you left your bag in his car. You were about to leave your room but you heard someone walk in, you froze.

One of Jaebums friends.

“Y/N, I thought Jaebum said y- you were gone?” He was either high or drunk—but probably both.

You ignored him, hoping he'd let you pass by without a problem. Judging by the look on his face he wasn't intending on letting you leave anytime soon.

“Excuse me.” You tried to walk past him but he grabbed you but the shoulders and pushed you back.

“What the hell?! Move!” Demanded, getting angrier and angrier by the second. 

“Why don't we close the door and a have some fun?” He closed the door behind him and stalked towards you. “I've always had my eyes on you, you know that? You may be annoying but your fine as hell.” He was already right in front of you—your heart was beating out of your chest in fear.

“Don't do this.” That didn't sound as confident as you intended. He pushed you on the bed, trying to pin you down as you flailed violently.

“Get off! I- I don't want this!” You cried.

“What's taking her so long?” He put out his cigarette. You've been up there's for almost five minutes, how long doesn't it take to find some aspirin. He decided he'd go up there and see if you were ok, it wasn't like you to just not sat anything. When he got upstairs he didn't bother knocking, the door was open. Some hoe saw him when he walked in and strolled over. 

“What's your name?” She walked over with a red solo cup in her hand.

He just walked away, not bothering to actually give her the time of day. He navigated through the groups of people to get to your bedroom, he knocked.

No answer.

Your light was on so you were in there, did you not hear him. He knocked again. “Y/N? Hey, I don't need the aspirin, it's okay if you don't have it.”

Yoongi? Thank God.

“Yoongi!” Your shouting was muffled by the hand over your mouth. “H-help-” You couldn't get out a coherent call for help.

“Who the hell is that?” He frowned. He didn't wait for a response, he was quickly attempting to undress you and you barely had the strength to push him. No, no, no...you were squirming and he kept squeezing your arm, eliciting bloodcurdling cries from your mouth.

You bit his hand. “YOONGI!!” You screamed bloody murder, probably scaring the life out of your neighbors.

Yoongi immediately barged in to see you in tears underneath some lowlife, crying and kicking. “Get the fuck off of her! You piece of shit!” Yoongi ripped him off of you and they were tussling on the floor. When the guy stood up Yoongi punched him, causing him to fall back almost instantly.

“What the hell?” Jaebum walked in, looking at Yoongi, then at you, then one of his best friends.

“The fuck?” Jaebum narrowed his brows. “Is this your boyfriend Y/N?”  

You were too busy trying to situate your clothes and wipe your tears to answer him. It was pissing Yoongi off the way Jaebum totally disregarded the obvious situation you were in.

“Y/N fucking talk.” He raised his voice at you but you only got up to go to the bathroom and clean yourself up.

“Hey! I'm talking to you!” He ran over and yanked you back by the arm, you winced. 

You were in a lot of pain and you could barely cry out anymore.“No! Stop-”

Yoongi pulled you behind him. “Don't you fucking touch her.” You ran into the bathroom, leaving your brother and Yoongi in a stare off. 

“Who the fuck are you? Her damn guardian angel or something? What makes you think you can go around knocking out my friends?” Jaebum pushed Yoongis chest, challengingly him.

“It's none of your damn business. That son of a bitch was literally assaulting her, your own sister! Did you not fucking see her!? That friend of yours doesn't have respect worth shit.” Some noisy people came to crowd at the door and Jaebum was livid, Yoongi was exposing him in front of everyone. Humiliating him more and more by the second.

“You're one cocky bastard to come into my house talking shit. If she was about to get screwed then she had it coming. And we’re not blood, it's step-sister.” Jaebum had absolutely no sympathy for you, his own family was like nothing to him.

“Fuck you!” Yoongi threw a punch so hard, he will have that bruise for months. He opened your bathroom door, seeing you crying at the sink. Without a word he grabbed your hand, dragging you out of this hell hole.

“Y-yoongi...wait-” You struggled to get it out. Inevitably you gave up trying to explain, you followed him to his car with your head down. You got in the passenger's side and he drove off.

“You're staying over my place tonight.” That's all he said.

He had to be going at least 15 miles over the speed limit.

His jaw was clenched tight, his grip on the steering wheel was like iron. You couldn't imagine what he might be thinking, you looked at him again. He's never looked better than he did right now, why was that? You couldn't figure it out, maybe there was something about his eyes, they were so focused.

There were dry tear stains on your face, your hair was a mess and you could feel the bruises from where that guy had hit you. Yoongi pulled into a driveway, turned off the car and got out. You watched him walk around so he could open your door. You grabbed your backpack, following him to the front door. When he opened it up to you shyly walked in.

“Hyung?” Namjoon walked out of his room. “I thought you were-” 

“Y/N is staying the night.” Yoongi waved to his roommate and you tried to shield your face as you scurried behind him. Namjoon saw you though, there were hundreds of scenarios running through his head.

Yoongi turned on his room light and went to his drawers. He had a very tidy room. “Here.” He handed you a t-shirt and some sweat pants. “They'll be a little big but they're still comfortable; this room gets cold at night anyway.”

“Oh- I can sleep on the couch, really...I don't mind...” You swallowed thickly, standing nervously. 

He ignored your suggestion and rubbed the back of his neck. “My bathroom is right there.” He pointed before leaving the room and closing the door behind him.

He walked to the kitchen, grabbed a beer and went to the couch. 

“What happened?” Namjoon walked over, it was obvious he was upset.

“Huh...” He sighed. “Her brother is an asshole.” Yoongi took a swig of his drink.

“Can you elaborate?” Namjoon plopped down in the recliner.

“I drove her home from her job. When we got to her place her brother was home and he threw a party or whatever the fuck that tacky mess was. She went inside to get me an aspirin but she was taking forever, so I went to check on her...some guy was on her, she was crying and- I knocked him out. Her brother didn't even give a fuck either, the bastard said she had it coming. I wanted to kill him Joon...I really did.” He was calming down but the mere thought was still disturbing—infuriating.

“Wow, that's a lot to take in...is she okay?” Namjoon looked at Yoongi’s closed door.

“I think so, I dragged her out of her room and told her she was staying here tonight, I guess I probably should've asked but it wouldn't have been safe to leave her there.” He shook his head, tilting up his bottle to take another gulp.

You cracked open his room door and peeked out. He kind of smiled when he saw you with his clothes on. The pants were far too big for you, his long sweats and shirt engulfed your small frame.

“Hi Namjoon," You greeted him, "Um, Yoongi, I really don't mind taking the sofa...” 

“Take the bed Y/N, we're not arguing on this.” He walked past you, cracking the door behind him “I'm gonna shower real quick.” You sat on his bed as he got some clothes and went to the shower. 

When he opened the bathroom his hair was wet, his face was flushed and supple—he looked so soft and young. 

“Are you okay? I'm sorry about what happened...” He said standing at the door, drying his hair.

“I don't know what to do anymore, Yoongi...I can't tell my mom, it'll only make her upset, she's been through too much. But he's always like that to me, it really hurts, you know? B- But none of his friends have ever-...and he didn’t try to stop him...” You held back your tears. His heart was breaking, he was angry at himself and that guy, your situation was so sad and he really couldn't do anything about it.

“I'm sorry.” He sat beside you, he didn't know what to say. 

“It's not your fault...” You looked at him, twiddling your fingers like you always did when you were anxious. He grabbed your hand gently, squeezing it lightly.

“It’s not yours either. I just want you to know, you're safe here. If you need a place to stay you can always come here. I promise you, if it means you’ll sleep safely then I’m willing to give up my bed." You pressed your lips together, nodding slowly. Others think I can give everything, I think I can give everything but I can't. I've had a day that’s hard enough to let out at least a small sigh. Two gazes were looking at each other, but both gazes were entirely alone. Without much thought, you hesitantly leaned in to place a kiss on his lips. He responded naturally, opening wider to slip in some tongue. His lips—they were so cold, so why did it seem so warm? How could this feel just as right and perfect as the first time we've kissed. You were just melting into him, like ice. Frozen and silent. He held your hand tighter, sighing into you—he didn't want this moment to end. This was beautiful and his heart was so full, it was going to burst. Slightly he pulled away, out of breath. “Y/N...” He hugged you, but he couldn't feel you breathing. You were holding your breath, your chest tight with emotion and pain. 

He spoke softly. “It’s okay to run out of breath sometimes, no one will blame you...” You wrapped your arms around his neck, his arms wrapped around your torso. You couldn’t help it, tears were falling from your eyes as you took a deep breath and sighed heavily.

Now don’t think of anything else Let out a deep sigh Just let it out like that.

Though I can’t understand your breath

It’s alright, I’ll hold you