This post is really a piggyback off of the last one, a little same, a little different. But sometimes the advice you're getting is backwards for your particular situation.
In the last post, I was talking about how sometimes I'll see posts, videos, clips, etc and think that it's not very good advice. Well in the process of me analyzing myself, I realized that sometimes the message is just backwards.
So take for instance the idea "Keep moving, don't ever stop! You'll never get to where you're going if you quit now!" Now for some folks this may be the motivation they need to keep pushing through whatever obstacle they're dealing with. It almost sounds like something you would hear a trainer say to their client in the gym, "Keep pushing!" And it's usually what the client wants and needs to hear, he's paying for someone to push him in that way.
Now, at times that kind of in your face, "tough love" type of "advice" is TOXIC! Especially when dealing with chronic conditions or traumatic situations. Those of us who don't know how we're going to feel one day to the next do not need to keep going, we need to stop and rest at times. I'm not talking about giving up. On the contrary. I'm talking about being smart and taking the time to learn yourself and your body. Find out how much you can do, do that and then rest. If all you do is get up, wash up and go lay back down, then you're good. Don't let those who have no idea what you're dealing with, make you feel bad for not doing more. Because the last thing you want to do is push yourself into a burnout or another flare. It's not worth it.
In any case, it was just an observation of mine. These days, along with looking at just about everything online with skepticism, I take a little time to contemplate. What is this saying? What does it mean for me; or how am I interpreting it? Do I even care? There is so much information, misinformation and disinformation out in these internet streets that it's hard to tell. Protect your mind and your heart from those sneaky little devils that can become full blown demons if you don't keep your wits about you.
There are times when I'll run into a post on Instagram or Twitter and think, "That's really not good advice". I sometimes even question some of the speakers that I listen to the most. Most recently, I found myself at odds with something someone else said, and it really started to get on my nerves.
Everywhere I look, everyone is talking about "Just let it go!". "Stop thinking about it!" "Gotta move on!" "Can't dwell in the past!" Now generally these sentiments are correct, it's important to not stay stuck mentally or emotionally.
However, I'm moving through therapy right now and there's a lot that's coming up for me. It's important to look at what has happened, so I can understand how it's affecting me now. As I've been processing trauma, some of it very old - I realized that it wasn't like I was consciously holding on to the past. Quite the opposite! I was a run away ~ cutting off people and situations as soon as things started to get too complicated. When I'm serious about a person or situation, I can get intense and things can start getting messy. I have a history of not knowing what exactly to do with my feelings, so once I start feeling those intense emotions, I back off.
Working out some of this stuff is difficult because, I'll talk about it for an hour in therapy, but then I've got a week of dealing with it on my own. I came to understand that it felt like the trauma was holding on to me, rather than me clinging to it. I've been trying to run away from it. The minute I could, I moved out of the house. Literally, the morning I graduated from high school, I was gone. Then after many years of running away from looking at what I was running from - it finally caught up with me. Now, I need sit with it, talk about it, learn from it - and then move on.
So FOR ME, at this time in my life, it's important to go back and look at certain things. And hearing people just throwing out platitudes, got really irritating to me. So then I had to look at THAT and wonder, why does this bother me so much right now? I normally wouldn't think twice about it.
It was then I realized, that the message wasn't for me at the time. Possibly very helpful for those who needed to hear it, but it wasn't the encouragement I needed. But I did start paying attention. Sometimes I'll be scrolling and see or hear messages that completely contradict each other, one right after the other. Then I'll cruise through the comments and see what's going on there. People are so often hell bent on having their point of view validated that they will get into it with some other argumentative troll. I can say that sometimes it's very entertaining to read their back and forths, but after awhile, it's just gets tiring and really boring.
For anyone working through tough personal content, it's important to be discerning about what you allow to influence you. There are people with a ton of negative energy who need to share it with anyone who is willing to engage. Some podcasters deliberately ramp up the negativity in order to boost likes and comments - hoping to go viral. They may not even believe so deeply in what they're talking about, but because they've been able to get the audience up in arms, carrying on in the comments, they've accomplished their goal.
If you're challenged with chronic illness, chronic pain or moving through trauma and triggers ~ perhaps it would be good advice to let some things go. Like unfollowing accounts and people that aren't serving you. If your desire is to unload some stress, that might be a good place to start. And if you happen to run across a message that you don't agree with, let that shit go too. As one of my good Sergeants used to say "If it don't apply, let it fly"
I joined Twitter in August 2018 in order to comment, bitch and moan about my favorite TV shows - which all happened to be on the ID Channel (shout out to all #IDAddicts!) I wanted an escape from the life that I was dealing with. It was therapeutic and a form of escapism to fuss about these shows.
Fast forward to November 2018 and I'm an inpatient, dealing with some really hard things. I didn't tweet much because, well there was no ID channel in the hospital and I thought, who in the world wanted to hear about the trauma, pain, doctors appointments, therapy, sleepless night, chronic pain, chronic illness and all around hard time that I was having.
When I was released almost six months later, I found out about #DisabilityTwitter and I was glad to find a tribe of people who were dealing with similar, if not the same challenges that I was. Accessibility issues, inconsiderate doctors, doctors who weren't even listening, doctors who wrote disrespectful notes in your chart because they didn't believe what you were saying, and family members who just didn't get it.
As an aside, a few years ago, I joined a Facebook group that was using slang that I didn't understand. So in the middle of this 30+ comment thread, I ask the question "Oh what does this mean?" Nobody answered. No one replied, they jumped over my comment as if I wasn't there.
Fast forward to couple weeks ago, I ask, again, this time on a disabled person's tweet what their definition of "Inspiration Porn" was. I didn't know it was a "thing" that the internet community knew about. And again I was ignored and THEN subtweeted, as if he didn't have the balls to just answer my question or at least say "Google it"
The first experience was from Abled/NTs who ignored, the second from a Disabled person who also ignored. I see you both the same. At least with Abled/NT folks, I'm not surprised when they don't understand my lack of social understanding. But I am disappointed by disabled people who want to carry themselves as so called activists and advocates who don't take the time out to answer an innocent question by someone who truly didn't understand. Y'all are no better than the Ableds/NTs who treat us as less than or who dismiss us because we don't have the same level of functioning that you do. SHAME ON YOU! I don't like you and I have unfollowed all of you.
The biggest problem I have with this whole "inspiration porn" idea is that y'all have taken the whole thing COMPLETELY out of context. WATCH THE VIDEO! Listen to what she says. She's saying that she's not here for y'all making a big deal out of disabled people doing regular things, but yes we should celebrate the accomplishments. She says, "I want to live in a world where we value genuine achievement for disabled people." I'll save you some time it's at the 8:52 mark.
I've seen the most hateful comments by disabled people about disabled people in the past month. The young man on America's Got Talent, Kodi Lee - OMG! When he opened his mouth to sing, I cried. Genuine talent, skill and ability. I wasn't paying attention to anything but his talent, and his beautiful voice. He received the Golden Buzzer. And instead of the Disabled Community congratulating him they held him up as a an example of INSPIRATION PORN. Comments were varied but mostly consisted of "Yeah, he's talented but y'all want to use him as inspiration porn and we're not here for it!" A bit of a compliment with a large side of shade and hateration.
In regards to Ali Stroker making history as the first Tony award winning actress in a wheelchair, I woke up to disabled people, once again saying "Omg stop it! Stop using disabled people as inspiration!" What are you even talking about, Ali said, HERSELF, "This award is for every kid watching tonight who has a disability, who has a limitation or a challenge, who has been waiting to see themselves represented in this arena," she said. "You are."
WTF!! I don't understand y'all. When Stella Young talked about inspiration porn, she was talking about Ableds/NTs recognizing us for just doing normal things, like living. But she did want us to celebrate the genuine, outstanding achievements of those of us who are doing extraordinary things even given the challenges we must to overcome. So y'all can miss me with all this negativity. I'm here for ALL the people doing ALL the things they have the ability to do! And PLEASE, shine bright like a light as you do it! 💜💜💜
I'm alone, probably for the first time that I can remember. There were times when I had a day or two here and there, but for the most part, I've always had company.
I am alone, but I am not lonely. The craziest part is that I now realize is that the loneliest I've ever felt was when I was in the midst of people who couldn't really see me. People who projected their own ideas of who I should be, how I should act, what I should be interested in and how I should look. It's an extremely lonely experience to have to spend time and space with people who refuse to accept you for who you are and make it their business to let you know that they don't approve of YOU.
Some people who have an invisible disabilities can totally understand what I'm talking about. You could be falling apart inside, in serious pain, nauseous, on the verge of a panic attack at any time - and no one would know. They assume that since you're still going, it can't be that bad. It's a lonely place to be because sometimes, most times for me, you don't want a pity party or to be coddled. You want it to be acknowledged that you're doing the best that you can in a shitty situation. You want it to be acknowledged that if you could do more, you would. But even the people closest to you can see you struggle and not have a clue what you're going through, no matter how many ways you try and explain it.
There's something about this alone-ness that is giving me back to me. Like, I don't have to explain why I need to go lay down, I just go lay down. I don't have to explain why I need a 30 minute long hot shower to calm my nerves and relax the tension, I just get up and do it. I don't have to explain the things I do that keep me going in spite of feeling like I don't want to do this another day. Being alone reminds me that I don't owe anything to anyone. If I don't have the energy, I don't have to do it.
And it's also amazing how manipulative people can get when you realize that you don't have to do certain things. The guilt trips are quite the roller coaster! Being alone has given me insight that I wouldn't have had otherwise. Generally, I would be thinking, "Okay okay, I should go ahead and do X,Y,Z for so and so, because, you know, I mean, I have nothing else to do." When I really should be getting my rest and preparing for the things that truly need my energy, like the six or so appointments I have in the next couple weeks. I NEED to go to those appointments, and it takes a lot out of me to go. I truly don't have time for anyone else's issues or problems if all they're going to do is take. I'm so over those kinds of relationships. I had start dealing with some folks with a long handled spoon, can't get too close or they will drain the life force right out of you.
Yesterday I stumbled upon Hilda! And what a joy she brought to me in a dark time of my life. Hilda is the creation of Duane Bryers (1911-2012). A plus sized pin up girl living her best life! She seems to have a strong underground following of devotees who adore her - of which I quickly became a member. I just love her. Not only do I love that she's a plus sized girl, I also love that she's drawn in a way that showcases her personality. She seems like she would be fun, funny and adventurous. I went through the internet to find more pictures and information about the artist and his inspiration for Hilda (I'll just leave this HERE, if you're interested. You can also click the picture at the top of this post.)
She also brought back to me the memories of the girl I once was, the clumsy, awkward, forever young spirit that I've always had. I've had some truly difficult times, no doubt, but I've always been able to maintain this sense of love for life, love for people and just being turned on by learning new things and trying things out. Four years ago, to this very month, every thing turned upside down. And that was the moment the Hilda-girl in me went into hiding. One day I will explain what happened, but for now I will say that I was re traumatized by those who knew the original trauma. I was booby trapped into a confrontation with the original offender and victim shamed because I didn't want to have anything to do with the situation. I was in a minor car accident but it re aggravated the old injuries from a previous major car accident - that I worked YEARS on becoming flexible and mobile. All of this happened within a month, and as much as I tried to hold on, I had a complete emotional, physical and psychological breakdown. So MANY things that I had worked through, so much progress that I made - walking without the cane, losing 100 pounds, being able to get my pain levels down and the infrequent use of psychotropic medications. I was doing so well. My doctor's will tell you that although my life was limited, I was living the best life that I could with what happened to me. And then to have this retraumatization throw me all the way back. It's heartbreaking. I worked so hard to get where I was and where I was wan't anything exciting or anything anyone would envy - but my GOD I was doing stuff!
So looked at Hilda yesterday and I just smiled and laughed. I remember the girl I used to be, even just five years ago. Singing with the top down, taking my hands off the wheel and singing at the top of my lungs! (Don't try this LOL!) Taking long walks, talking to myself, talking to God, screaming at the Universe, praying in nature. Searching for the perfect rocks for my collection. Dancing when I could, dancing in my room like I didn't care. Music so loud and obnoxious (I had very understanding, and loud neighbors!) I felt freer than I had ever felt, and I worked for it. I put in the work, the therapy, the physical therapy, the journaling, the self improvement work, the affirmations - whatever you want to call it - I put in some real deal serious work, and in one month all of it started to unravel.
They tell me I can get back to that place again, and although I was limited in what I could do, it felt so much better than where I am now. EVERYTHING is a struggle. I just want my Hilda-girl back.
About five years ago, I was on the phone chatting with a childhood friend. He was working in the kitchen at a four star hotel, and was telling me about it. As he was talking, I told him that I think it would be fun to live in a hotel. Just one payment, no utilities or any repairs or other complications. I was really just joking at the time, until he said, "Sure, plenty of people live in hotels."
He told me about a woman that had lived in the hotel for a couple of years and I thought it was a genius idea! So for almost five years I had dreams of hotel living. I did some research on it after I got off the phone with him. I read about people's experiences; making the change from renting to living in a hotel, comparing rates, and looking at what kind of accommodations I needed and wanted. I figured that after my youngest child had gone off to college, I would get rid of most of my stuff, put the rest in storage and start hotel living. I didn't know where I wanted to settle, but I figured I could do extended stays in the places I wanted to visit, and then decide if I wanted to stay in the area.
Fast forward a few years and I'm being asked by the doctors what my discharge plan is, where I am planning to go so they can set me up with the right treatment team as I move from inpatient to outpatient care. I really liked the hospital and providers that I had, but I didn't see myself living in the area. I didn't want to commit to a year long contract in an area I really wasn't excited about. I was conflicted though because I liked my treatment team, and that's saying a lot considering it's a VA hospital.
I've had almost two decades dealing with the VA hospital and have had some really good doctors here and there. But it wasn't until I got to this facility that I felt like my needs were being addressed. I had some wonderful nurses and some great doctors during my inpatient stay. I was able to meet with some of the outpatient providers before I was released and was very happy with the team - but not so much with the town.
I was sharing this conflict with someone and they mentioned doing an extended stay at a hotel, and a light went on! As soon as they mentioned it, I knew that's what I wanted to do. So I found an extended stay in my price range - it's a suite with a little kitchenette and daily breakfast. I'm close enough to walk to the stores I need to get to and for the first time, in 47 years, I live on my own.
Probably sounds odd, but I was a middle child, so I generally shared a room with someone. I moved from home and in with a roommate. Then I joined the Army and had ALL the roommates. Then I got married and had some kids. Then I had a breakdown and into the hospital with some other patients. Moving in here, was really a new chapter for me.
It's weird living alone. I like it, but it's very different. Until now, there has never been a time when I have been able to close the door, lock it and know for certain I wasn't going to be bothered! At some point, having a husband, kids, parents and/or animals - someone or something is coming knocking or scratching on the door needing something. I mean, it's really a different feeling knowing that if I don't want to be bothered, I wont be.
I suppose there's a small part of me that misses knowing that someone downstairs, or down the hall will need me at some point. I think when you've lived your life as THE Caretaker, you don't know where you fit when you're not taking care of someone
I know it's time to take care of me. This is a difficult change because I'm so used to diverting attention away from me. I don't want to be a burden or come across as a complainer or a victim. The last thing I want is a pity party or to be sitting around here feeling sorry for myself. However, in order to heal, I must be able to admit that some very real things happened and I have to allow myself to grieve for what I have been through. Trying to throw a band-aid on it and soldier through isn't working anymore. And if I'm truthful, it NEVER worked.
All this freedom is nice and all and I like it. Everything is where I left it and if I can't find something I only have myself to blame! I'm so used to blaming everything on the kids so I didn't have to take a look at my own absentmindedness! 😄 Although it's kind of scary at times. I had a really long panic attack the other day and I got scared. I mean, although I tend to want to be alone when I have them, I'll put myself in my room or in the shower. But there's usually someone around, even if they aren't right there with me. So there's has been the comfort that if I needed someone to hold on to or to help distract me, all I had to do was reach out. Now that I'm living away from home, in order to be closer to treatment, I'm going through an adjustment period. It's probably a good time to put in my application for a service dog.
Amazon helps though! This hotel suite is cute and all, but there's no oven - so I had Amazon send me a new convection oven and I love it! I've made a chocolate cake, roasted some chicken and veggies and made pizza. Now I'm waiting for a nice, bright throw for the bed and a multicolored rug for the kitchen floor. Just something to brighten up the place and make it feel cozy. Moving through this trauma treatment is really intense, I really want a place to come back to that feels like a sanctuary. Nice colors, soft music, sweet scented plugins. A little piece of home away from home.
This day started off worse than it ended, so I'm glad I didn't give up. I saw it through, even though I didn't want to. And I'm especially glad to be home!
My current living situation makes it difficult to get around on public transportation. I haven't driven a car in over two years so I'm either walking, taking a cab or bumming a ride. Today was my first day, since being out of the hospital that I had to do some real deal travel. They switched all my inpatient providers to their outpatient providers, so I had to be there. I woke up this morning, so I could get there early and grab the Occupational Therapy class but I wasn't able to make it. Turns out that unless you schedule your cab rides SUPER EARLY, you can forget about getting a ride in a reasonable time. I was so stressed and pissed off this morning, cause I thought I was doing the right thing, calling early, being ready and so forth. I finally did get a cab, two hours later and was able to make the bus over to the hospital.
First thing I did was go and follow up with O.T. to make sure they didn't have me down as a no show. Thankfully they're very understanding about my situation. Hopefully if this paratransit thing works out I'll be able to be real consistent. Plus O.T. is very important to help with my quality of life now that everything has changed. I don't want to let any of these services slip through the cracks.
I met my new prescribing provider today, which was very nice. She's a Nurse Practitioner, and honestly I didn't even know they could prescribe meds. I really like her, she really spent her time getting to know me, what I was hoping to accomplish as a whole person. She wanted to know what was going on all around me so that she could understand my "medication" quirks. See I don't like taking a whole lot of medication. I like to take what's necessary for the situation and move through the rest of it. Mainly I like to use food, exercise, stretching, music, journaling, vitamin supplements and a steady routine to keep myself in order. So once I was able to share all of that, she got a good idea about who I am as a patient. Plus she had the opportunity to go over my inpatient notes and talk with my Trauma Therapist. She was very open minded and non judgmental, and let me tell you something, that's very rare - especially for those of us who have seen doctor after doctor after doctor.
I did get a chance to drop by Horticultural Therapy for a few hours. I just love it in the greenhouse. And because the woman who runs the program actually needs help, especially now with all the cultivation and planting that needs to be done outside, I feel so useful. Because I've been there as long as I have, she let's me pick my projects, and that's the best. There are so many neglected plants that I've been able to save from the brink of despair! Some of those things are so root bound and just need a bigger pot to stretch out in. Some of the other plants you can tell other patients just put all together in one pot and the result, six months later is a mess, if it's still alive! So I've been able to clean up some plants, transplant, propagate, start from seed and divide some old messy plants. I spent the last month transplanting seedlings, so I'm glad to be back in the greenhouse, rescuing the struggle plants. The reason it's so important is that for every week a patient attends Horticultural Therapy, they are allowed to take a plant back to their room to enjoy. And if you've been in the hospital for a week or more, you know how sterile, boring and cold those rooms can feel. So it feels good to beautify these plants, knowing that somewhere down the road, someone will receive a little piece of joy having that plant in their windowsill. I know it made a world of difference for me 🌱
I was lucky to find a ride home, and I have to tell you, since I didn't eat anything all day I was starving. So I threw a microwave pizza in for three minutes. I laid across the bed because I was in so much pain. I figured I'd take some pain medicine with that pizza and grab me a shower. I was so tired from all that running around that within that three minutes, I passed out. I woke up an hour an a half later with my shoes on and a cold pizza in the microwave. I ate it anyway.
So I'm fixin' to hop in this shower, take my meds and try and find something to watch on YouTube. I don't watch too much regular TV, except for The Blacklist. Man, I love that show. Other than that I'm falling down the rabbit hole of cat videos and alternative lifestyle documentaries. One thing's for sure, I'm gonna sleep good tonight! I'm really looking to tomorrow because I ordered some stuff from Amazon, and "now every time I go for the mailbox, gotta hold myself down. 'Cause I just can't wait 'til you write me you're coming around...." Woo hoo! Can't wait! LOL! 👍💃💃💃
Spending so much time as an inpatient taught me a lot. But mainly it taught me how and when to ask for help. I've never been the type to ask for accommodations, even when I really needed them. I always felt like I was bothering people, or perhaps I wasn't trying hard enough.
It may sound odd, but until I was in this facility, I didn't know how to ask for help without feeling guilty. I had to learn to ask for time alone, I needed space to accommodate my panic attacks and meltdowns. Look, I'm not the type of person who likes everyone staring at her while she's having a nervous breakdown. I don't want sympathy, I don't want attention, and I definitely don't want your pity. All I want to do is take my meds and get to a safe space until I can calm down and pull myself together. I've been having panic attacks for so long that I really do understand that I am not going to die or have a heart attack - although it feels that way sometimes. I've had them so long that I know I'm not going to vomit all over the place, although I do at times. I've had them so long that I know the shakes won't last forever, although sometimes I need to go to the emergency room to get shot to stop the process. But I've dealt with this so long, I do have safety measures in place.
Problem is with me is that I wait too long to get things taken care of. I don't take my meds when I should. I tend to wait too long, thinking that I can handle it. It's difficult to get out of that mode, especially when you were raised with parents that emphasized "tough love" and the need to just keep on keepin' on no matter what. There wasn't an abundance on compassion in my family, so you just didn't talk about it, let alone complain about it. You didn't ask for help. More importantly, you didn't know how to ask for help.
I'm a Hillbilly, raised in a small town, so we didn't discuss mental illness, or any of those things. Hell we didn't even have the vocabulary for the things that me and most of my friends experienced. I've had friends who experienced horrendous abuse. Who suffered with conditions, that we couldn't name at the time - but thanks to the internet, I have found out that this one had anorexia, this other one bulimia - another, major childhood abuse, and still another Trichotillomania. We never knew what these things were called. We really didn't ask questions. We accepted our friends for who they were, warts and all. I remember sitting in the yard with my friend who had Trichotillomania. She had pulled out all the hair in the top of her head, her eyebrows, her legs, everywhere she had hair - except for the back of her head. She kept enough hair so that when she wore a baseball cap, she had some hair hanging down. As we were sitting there, she wanted to start pulling the hair out of my arms and legs. We just laughed at the time. I cry, I seriously cry for that moment right now. She had pulled all the hair she could from herself and wanted to try on someone else. I doubt she would have gotten the same "release" she was looking for by taking out my hair. But the thought that she was so traumatized that she needed to pull her hair out to deal with the pain is devastating to me as an adult, and as a parent 💔
Living in a small town, you didn't ask for help because if you did, that meant that other people would know what was going on in your household. And God FORBID the townsfolk, churchfolks or school system know what was really going on. We all kept our mouths closed, except for the closest of friends. And sometimes, even if you did tell someone, they wouldn't believe you. You were a "problem child" and couldn't be trusted. I pray that reporting abuse is easier now than it was then. But I also know that when you're in it, you're never sure exactly what's the right thing to do. And so if you're in a situation where you see no way out, no one to turn to and no one who will believe in you - just know that I am holding you in prayers that you will find a way through and a way out 🙏
Today I got the opportunity to go to Walmart, and I'm so glad that I did. It wasn't an easy trip, but it was definitely worth it. I'll explain my living situation here in another post, but suffice it to say that I'm so glad I was able to get out and do something without having to walk there and back. It was nice. I made shrimp scampi for dinner, glass of white wine and a couple shots of whiskey. I'm gonna find a movie here to watch and do some stretching exercises to help with the pain. Maybe I'll watch Special on Netflix and see what the hype is about! #DisabilityTwitter seems to like it alot!
