Our Health as of March 2024
This is going to be long...I apologize. How do I write this positively without minimizing the impact and glossing over the depth of struggles?
This portion is long but important to keep track of in terms of our business. Not only is the business based on us but it also should be noted that our struggles influence and inspire everything we do. Everything that I am listing is not in order of severity nor the exhaustive list of everything we are going through, but I wanted to give a little bit more perspective on what we are having to battle behind closed doors.
We understand we mask very well. We look like we generally have things together and are doing well. Yes and No. No, we are not doing well in that….no one should be going through this much pain/struggle daily just trying to survive in a society with welfare specifically put in place to help people with our struggles. Yes, we are doing well and DESPITE everything we have to deal with, we can make some impressive accomplishments. We’ve had our reality denied enough by people yet still heavily supported in the medical field that these issues exist. If we want to improve our lives, we have to adjust life seriously and according to what we are going through.
This post is to help accomplish the following things:
To put our efforts and struggles into perspective
To ask for patience and understanding
To use as a reference for ourselves and others years down the road
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We will start with John’s as there are some I need to delve into while there are some struggles that I cannot mention here. If he chooses to share that with you face-to-face, that is his choice. I will only go over the main reasons for his caregiving (that he has openly shared and we have agreed upon is ok to explain) and the smaller issues we both overlap.
John’s biggest issues are his POTS (Postural orthostatic tachycardia syndrome), Raynaud’s, Disassociation, Insomnia, PTSD, and Autism. This interferes with staying present in reality, understanding internal cues (hungry, bathroom, discomfort etc), sleeping, controlling body temperature in extremities, controlling body-held trauma bubbling up, and transitioning from various positions (ie. sitting up, sitting to standing, bending down etc). Which puts me on standby 24/7/365 with him being a fall risk. There are other issues but I cannot divulge those. Just know that there are at least two more layers we have to be aware of as well.
POTS
”POTS is an acronym for Postural (related to the position of your body), Orthostatic (related to standing upright), Tachycardia (increased heart rate), Syndrome (a group of symptoms)
POTS is a blood circulation disorder characterized by two factors:
A specific group of symptoms that frequently occur when standing upright
A heart rate increase from horizontal to standing (or as tested on a tilt table) of at least 30 beats per minute in adults, or at least 40 beats per minute in adolescents, measured during the first 10 minutes of standing"
RAYNAUD'S
"Raynaud's (ray-NOSE) disease causes some areas of the body — such as fingers and toes — to feel numb and cold in response to cold temperatures or stress. In Raynaud's disease, smaller arteries that supply blood to the skin narrow. This limits blood flow to affected areas, which is called vasospasm."
The only medical options to deal with this are: to move to somewhere warmer, wear gloves (which he can only wear while going out; he relies heavily on tactile touch for his work), or have surgery.
This gets triggered by cold weather and he can disassociate from ‘cold’ when our home temperature drops below 75. So I have to be aware of his status to make sure we address these problems immediately. It could be 105 degrees outside, but it’s been triggered by stress to where he was shivering cold and needing multiple blankets to warm up.
Both of these, we believe were extremely emphasized because of his military training and exasperated by prior trauma and lack of recovery.
His insomnia and PTSD are connected. Limiting his sleep to about 4 hours at a time at MOST. When we first met, he had trouble staying asleep for more than a few hours not sleeping for days at a time. At one point he went a week without any sleep going delusional. Though it is better, it still is not significant enough to be considered ‘rest’. He typically runs on 3-5hrs a day these days. Not occasionally. Every day. And not consecutive hours asleep. Sleep for an hour or two, wake up for 30mins, back to sleep for 30mins, awake for 2hrs then usually stay awake and try to nap after getting up for a bit.
It’s surprising to watch and hear people talking about how terrible it is to only have 3hrs of sleep…since we have done that so often for almost 10 years. For us, that is a daily thing.
We don’t know how well our sleep will be until that morning.
With that, I am his full-time caregiver also having to take care of anything and everything in life that deals with time and the connection to it. Laundry? Vacuum? Change bedding? Pay bills? Take out trash? Where was the last time we saw [insert item here]? Scheduling? I have to be aware of all of it. His memory is not chronologically functional. The memory of what just happened can be recalled but he won’t be able to fully remember if that was yesterday or 10 years ago.
Unless it is connected to a topic he is REALLY into or can feed into what he is interested in. A lot of the regular daily information or some important information just disappears. We have gotten better at writing things down, but found out that when we are burnt out we can’t read and our visual processing is gone.
We can see the words yes. There are lots of words. Can we read any of it? No. Not at all.
He is also very distractable with tons of various ideas he comes up with. A lot of them require my feedback or attention for him to process further. Many ideas require a bit of research to continue…which he goes into and does. That takes time and requires an outside person to reign him back to focus. He can take care of it most of the time, but when he gets stressed, he can make the situation worse by ignoring it and putting it off. We are both getting better at addressing this than before. But still, at the beginning of this year, we are focusing on this process specifically.
His conditions require me to be on standby 24/7/365. We are lucky we are best friends first and we work extremely well together. So this situation benefits us a lot. But I will have to acknowledge that I still have to carry a lot. I have that stressor that not only is his health a 24/7/365 set of responsibilities, but I have my health struggles that are also a 24/7/365 set of responsibilities, as well as being able to keep up with household everything (minus cooking which is something I still can’t do)...and yet have gov’t pressuring me that I should still be getting a full-time job to pay our rent/utilities. With what time!?
Now onto MY issues that I also have to deal with and carry myself. Many of these John has too. We want to share where we are right now which can slow us down when building our business.
When we say that both of us are supposed to be on disability, we aren’t exaggerating. We have been in pain for so long we assume that this is normal. John was on Disability for 3 years, solidly supported by medical documents. He was forced to meet one stranger, a gov’t psychiatrist, who suddenly deemed all his issues as ‘solved’ or ‘recovered’ in only one hour of meeting. So ever since Feb of 2022, we have been trying to make ends meet wherever we can. The lawyer who worked on both of our cases back in 2019 was extremely certain both of us would be awarded (unless my case went to a biased judge and be kicked out…which it was). We have been struggling with the disability process ever since. They have made the process more difficult and do NOT have a lot of help filling out paperwork. Oh man, I have a long story of our struggles trying to go through this process over and over but that isn’t the main point of this post.
{TL:DR: hard to apply for disability when the disability causes a struggle in the process, which was the point of applying for disability in the first place.]
No, it’s not normal for a human being to be in pain every day. But yet here we are.
We do have a lot of overlap too so many of the things that I go through he does too. And this isn’t the exhaustive list either.
AUTISM:
We have issues understanding social protocol. We have trained ourselves to read situations and overthink EVERYTHING. This stems from growing up being misunderstood or punished for things we didn’t do or didn’t know were ‘wrong’. (And ‘wrong’ based on our parents/adult beliefs, not how life holds it).
We still have trouble reading social cues. Small talk makes me extremely uncomfortable. We may or may not have scripts for interactions but I can’t only access them if I have enough rest/energy.
Looking people in the eye is painful. If I am well rested or comfortable with the person, I can force myself to look them in the eye for a little bit. It becomes a huge painful strain about 20mins in.
I have a delayed processing so I will not have my genuine reactions until I have been home and given some time to go over what happened. I tend to get upset but can’t do anything about it afterward because I would be deemed ‘the asshole’ for bringing it back up. So I sit in the trap of, I have strong reactions to something and I can’t do anything about it. Even if a person deserves the reaction “i.e. please don’t scream or yell”, I’ll be frozen watching the event knowing something should be happening but frozen as to what.
I don’t always have the energy to talk. The effort of moving your chest, your lungs, inhaling air, holding the right tone, cadence, frequency, pace, while being aware of the words, the sentence structure, grammar, formality vs casual is a LOT of filters I have to process through to communicate. Many times I barely even know what I need to ask someone else. If I let my voice waver because I’m nervous talking to people, it has taken (SO MANY TIMES) that I’m hiding something and am showing guilt. So I have to be VERY careful on how I communicate to the point of accidentally self-sabotaging myself.
I have a LOT of sensory issues!! My brain will stop working if they aren’t met. This includes my hair. If it’s dry out and my hair touches my face, I panic and get extremely distressed. Even laying on my pillow, if I can feel the hot air coming back on my face, my whole body overheats and I get distressed. If my glasses are dirty/fogged up, I have trouble processing and end up getting sleepy. Once I clean them, I’m snapped awake.
I have a few stimming choices I do that are normally unnoticed. I always play with my hairband. I also have to crack my knuckles every few minutes to multiple times a minute. Once I counted I had to do about 15 in a minute. It’s that strain you feel when you KNOW you need to stretch. It starts hurting so I can’t avoid it. Normally it’s my toes so no one sees.
I have a lot of issues knowing where to start or how to start. I am now writing a LOT to help this process and it takes up to 5 sheets of paper to get through what I need to accomplish. I write everything that I want to accomplish for said project. Another page for the steps that are necessary to accomplish the goal is organized in order. Another is to write out the smaller steps in between those steps. Sometimes I have to keep rewriting or break the steps down smaller and smaller to accomplish.
I have a lot of issues transitioning from place to place. If I am not ready to leave, leaving before I’m ready shoots up my anxiety and pushes my ‘rushed and overwhelmed’ phase. I feel like I’m suddenly in a race that I need to keep up with. It takes a lot of focus to bring down my heart rate.
we have a sub of Autism called PDA or Pathological Demand Avoidance. It’s the high distress from being told to do something and feeling that expectation rises that you panic and just stop doing it to not even doing it. The feeling you have no autonomy because people are telling you what to do (like wash the dishes AS you are washing the dishes). It can be manageable but I have to be aware of it. Sometimes I can’t do something and have to have John take over. One step. Say step 6 out of 9 steps I can’t do. I can easily do 1-5 and can do 7-9 but I keep hitting a wall when I try to approach step 6. John has saved me from this paralysis by helping me and not judging that this odd little step needed to be done.
More Sensory issues!! Bright lights, loud noises, the feelings of being around a lot of people, textures, visuals etc. The input is more than what you think and can overlap other sensations. One of mine (which seems very OCD) is the need to clean. I can see the pieces on the carpet and feel them and it causes me distress. So I have to clean it. It’ll drive me crazy until I get it done. Not able to think about anything else (even when you try). And it doesn’t go away until you complete that task. Another is feeling the hair on my face. That extreme discomfort welling up inside to where you start sweating from distress. I stop being able to see and think until it is dealt with. Such as putting up my hair so it doesn’t touch any skin. Then I work just fine. These are maddening. Why I’m also more irritable because I’m stuck with reality knowing that this thing bothers me but I can’t get it done right NOW when it bothers me. And seeing it over and over again until I can get to it…
ADHD:
Object permanence: Basically out of sight, out of mind. Why we have a lot of issues remembering what foods we have in our inventory and what we need to purchase at the store. I even made some memory magnets to help with this.
Forgetfulness: this kind of goes with the above, but it’s much more. There was a story about a cough drop (or was it candy?) that helps explain this: You are driving your car and see a cough drop left there by a friend. You think “I’ll throw it away at my next stop”. You get to your stop, get out, do what you need to do, and get back in the car. You see the cough drop there. You then tell yourself “ok, I’ll do it this time. At the next stop I’ll throw it away!” And proceeds to the next location. You park and open the door and immediately forget the cough drop. You get back in and sigh exasperated that it’s still there. “This time I’ll put it in my pocket and throw it away when I get to my last stop. I’ll surely remember then”. But the same thing happens. You park and forget to put it in your pocket to throw it away. You drive home upset because you KNOW you should do it and you WANT to do it but it always eludes you. This is the same for not just small things like trash needing to be thrown away, but EVERYTHING else in life. The big and small. It’s extremely frustrating and you can only adjust so much.
I have a racing mind. Almost nonstop information and plans running through my mind. It’s difficult to concentrate on anything. Especially since my brain is wired to notice patterns, art and artistic attributes, and human psychology/development (mostly mental health). Anything and everything I encounter is put up to “How does this connect or how can I make it connect to help teach something”? Everything I see around me has a popup explaining what it is, what I meant to do with it, what sensations/emotions it gives off (i.e. texture, temperature), and where it currently is to where it may need to go. The only time it stops is when I am in burnout.
I fidget a LOT. I have trouble sitting still and in normal sitting positions. So I tend to have body pain from hyperfocusing and staying in weird positions for too long. Because of this, I try to get up and work on chores here and there. But that interrupts my projects normally and I have to ‘reset’ when getting back into the project. That can take 5-15minutes for each shift back. (I think this difficulty transitioning comes from the Autism side)
From ADHD I have RSD or Rejection Sensitivity Disorder. I am VERY sensitive to the possibility of rejection. Being raised in a very strict and high-standard family, I was terrified of being seen and criticized for things I couldn’t control about myself, and I used dissociation as a coping mechanism. I couldn’t do something that would get me yelled at if I was in a daze barely moving. This also interferes with messages to me. I can ask someone “Hey, when are we meeting?” and then when the message back comes in, I’ll just panic. Even if the message back is literally “Let’s meet at 10 am. That work for you?” It’s an extreme reaction that paralyzes me and I will avoid it like two opposite magnets being repulsed. No matter how much I WANT to move on, the fear is stronger. The fear of “oh no they are going to say something about me that will hurt me” just well up. Talking about reality doesn’t help. My best option was (I’ve learned in the past 2 years), that when the fear levels are at a certain height, might as well do the thing that got me scared since I don’t want to double the timing of that panic. Since the items have to be done. Or, do something else that would normally make me panic and do it anyway. It’s less panic than the current panic and sometimes completing the less panic helps me wiggle into the greater panic and address it. John does help but there are some things I just have to do and lead. But there are days it just hits harder than others. Then the recovery rate afterward is significant but I hopefully accomplished the thing (and maybe a bonus thing!). Or now I ask John to read it to me and only tell me the things I need to work on. Has saved me so much stress and time, but before I had no one to ask for help without being chided as foolish.
I hate getting bored so I will always be looking to do something. Even when sick, injured, or needing rest. I’ll push myself to exhaustion and collapse every day. Even as a baby in diapers, I had to be doing something while watching TV. As a child, I would draw or play with clay when watching my shows. Even today, I have to be doing something while watching shows. These days I’ll be doing three things at the same time (watching anime/reading subtitles, looking up projects/ideas on my phone, while eating dinner). I’m trying to unravel that but I get so restless I’ll still always look for something to do.
Short attention span/distracted!! Even if I’m interested in it I’ll struggle sticking with it. The reason I work on so many projects is that I work on them in small bits. So I’ll work on a task for a little, hop to another, then hop to another, hop back to the first, hop to another etc. (Also another reason we need to work at home, so many projects I need access to). I kind of do this with cleaning too. There was a term started online “Roomba Cleaning”. I’ll do something here, see something that needs to be moved, move it, see something that needs to be done real quick, start it, go to throw something away, realize I have to take out trash so get that ready, then realize I still need to throw this away (wouldn’t fit in the other bag), so go to throw it away but notice I have to replace the bag first so do that but end up grabbing the bag and taking it with me to move some OTHER item To another room I suddenly deem more important, then back to the trash can with the bag…etc. It’s exhausting but I’ve gotten far more done than only focusing on ONE task from beginning to end. Small bite steps are great, but only mean something if you follow through and finish the full task. Even if I don’t manage to complete it all that day, I can see the movement of the tasks and feel a little better that I made some progress. Rinse and repeat but based on time and energy.
PTSD
Constant flashbacks of reliving past horrific events. They don’t just bring up the video clip of what happened, but the body sensations and emotions that were trapped in that time. These can cripple us for the day up to a week. Going through Trauma work (with a trained therapist) takes a lot of time and patience to get past this.
Sleep with rest is almost only possible during the day. Especially during winter. Since most of our traumatic events happen at night, we tend to get anxious. Until we can work out the core cause in our childhood, these will be consistent. During the day was generally safe, and the sunshine was always comforting with promise. With the days so short in winter, we can wake up in a panic at 4 to see it dark, thinking it’s 11pm and we wasted the day away. (We got accused of wasting our days when we were burnt out and in a daze, trying to recover, so it’s an automatic response these days) That adrenaline spike isn’t great for the sleep you just woke from.
I get random hits from various, seemingly innocuous stimuli. I’ll be watching a show of a guy traveling in Venice and then suddenly start bawling. Or a situation that builds up and gets intense I’ll start panicking. This is very difficult to control and I feel guilty if I react to people around me when I strongly react. It’s not because of them, but that they probably did something that reminded me of a time when it WAS used to harm me. Still, it’s exhausting and I don’t want to blame others.
I’m almost always on the constant verge of crying but cannot go into my trauma work or else I will completely collapse and not do anything for a week. We can’t afford that.
One of us will wake up crying about twice a week. Our nightmares are quite intense and we will become afraid of sleeping and not sleep for days at a time.
INSOMNIA
Because of those nightmares, tend to haunt us for a day or longer. Interfering with regular focus on day-to-day activities. They also tend to pop in as intrusive thoughts multiple times a day when we least expect it. So it reinforces our fear of falling asleep and either having the same dream, another one like that, or another dream that also deeply troubles us. This has happened for about 13 years and for John, 7 years. We live daily with a lack of sleep and a heavy need to sleep for so long our physical health is taking its toll.
We are both still struggling with getting restful sleep for more than 4 hours. If we DO happen to sleep through 4-6 hours…then it means we burnt out and collapsed. But that sleep doesn’t mean we’ve rested. It means we spend the next day in a daze to help process what we couldn’t when burnt out and wait until our body is ready to go back to sleep. (Ever had the body/mind split where one is just up to par to do something while the other is struggling to exist?) We don’t know the impact of our sleep will have on our day until that morning. Remember that last time you woke up with only 3 hours of sleep and you are dragging to function but you know you gotta do it and hopefully recover that night? We have that daily. And since it’s been over a decade for me, that’s our norm foundation. That is where John and I start. Summer, it’s better, Winter (thank you CO for 8mo of winter…), it is much worse.
To be clear, we HAVE improved our sleep by trying to be careful of bed hygiene. I keep the bed clean and comfortable, we stay at home more, we keep our home temp over 70 degrees at all times in the winter….and so we have now accomplished one to two solid nights of rest every month. Every so often we get a second day of sleeping at 6hrs with minimal to no disturbance and wake up feeling great! (My anxiety can eat all that rest up within an hour of panic right after waking up and realizing what I have to deal with that day, which happens more often than you think). But we finally have a standard we can refer to which is supposed to be the ‘healthy’ state of resting.
ANXIETY
I have extremely high social anxiety for multiple reasons. It’s not something I can just ‘let go’ of or ‘try this to change’. That type of advice ignores my whole childhood: living in that state and losing or never having a ‘calm’ state to refer to and return to. I rarely spent time around people other than school, church, and the people my parents invited over for parties (usually their friends). They are in very set settings with clear rules and structure that I could blend in with.
The ‘task’ that causes me anxiety doesn’t only encapsulate the time it takes to do the task or to be at a certain location. It’s the hours or days of mental prep before I go there, and the hours to days of processing what happened afterwards. I am very worried about how I act or communicate and try to preprogram acceptable behaviors for the general public.
I am very sensitive to stimuli, not even stimuli around me but the intrusive thoughts that pop in. They can make me suddenly panic (heart rate of 130), break down crying, or freeze and blank. I never know when it’s going to happen, so being at home it’s easier to adapt and adjust as needed.
I’m always afraid someone is going to hear or read something about me and suddenly turn against me. As a child, I always felt like people were talking about me behind their backs. I mean I was alone most of the time so I never really knew what they said. But I wasn’t friends with anyone so why would they talk nice about me? And was it true? If someone is mad at me for something I did…can I apologize? But many times, it was a rumor of what someone THOUGHT I said and didn’t care to ask for clarification. I am terrified of being attacked for lies or biased perceptions. I know I shouldn’t care, but as a kid…no one told me or helped me with this until it was ingrained for over a decade. I was alone without support on this until I met John. I’m still unraveling this.
I was alone a lot of my life, rarely having anyone to play with let alone talk to. I learned most of my communication from TV shows, movies, music, and how my parents interacted with others. Eventually talking to strangers online. My bubble was very small so I don’t quite know how to read certain cues not having much practice as a child. Now as an adult, there is so much more you have to pay attention to while subconsciously planning out future results based on what is being said (i.e. future planning events with people). Then the whole expectation of following through even though we can’t always be sure we can, and disappointing them. So try to encounter those situations less, hopefully not to insult the other party.
I’ve lived with anxiety since I was 11. Once I became cognizant of myself and of my reality. I don’t recall a period of being calm, so telling me to ‘try and relax and be calm’ is useless. I don’t have a point of reference to return to. I can BE peaceful for a few moments to a few hours given the very specific circumstances. But my intrusive thoughts, PTSD nightmares could change that quickly. And it still usually does. We are in a process that will take years and can heavily rely on the amount of change we can do for our environment. Which does include finances.
My anxiety is also tied to Social Anxiety. If I have to go out, my panic can jump to a 9/10 just suddenly. If we stay home and don’t have to leave at all (and aren’t expecting anyone to stop by our home), then I can generally keep it at a 4 (the worst of the day in a spike) and be quite productive! So far, staying home to work has had the best impact on my anxiety and even physical health!
Another part of social anxiety is having to keep up with communication. Because when by myself and with John, I don’t have to have very many filters if any. John has been the only person in my life that I can trust to say what is on my mind and not be judged but asked for clarification. Sometimes when you don’t know what to say or how to say it but need to say it to work with SOMETHING….that tends to cause most people to react negatively which usually isn’t my intention. So I tend to self-silence myself with any and all communication.
For my fears, when I was a child/teen/young adult I would be terrified that I would just lay in bed for hours not doing anything. Terrified of anything beyond my skin. My body would lie paralyzed in bed while my mind was wild with energy running from topic to topic. So after so many years in that state, I’m still very hesitant when it comes to interacting with others. Being alone is my stability. Not healthy, but the only place I can RELAX. Even with John, I have to be on alert all the time because I am his full-time caregiver so that keeps me grounded in reality most of the time. I may not be able to help myself, but I found a little trick that if it’s for someone I care about, I’m able to do a lot more.
I scared one of the nurses at my last medical appointment because I looked calm but my heart rate was at 130. That happens to be about my regular heart rate when leaving home. This has been pretty consistent since 2021.
DEPRESSION
Double whammy where Anxiety makes you think of it all (and care) while depression makes me apathetic and stop caring about everything. I stop moving and don’t think much except for intrusive thoughts/memories popping in to reinforce the feeling. I can’t deny scenarios that have happened to me as I can the made-up ones my brain came up with. I have a lot of situations that solidly support my fears and worries. Getting going after being sucked undertakes so much effort.
My depression stops me from eating and taking care of myself. Luckily I haven’t had the debilitating depression as much for the past 2 years. But it still hits and can steal a day or two here and there. Most is at bay because I focus on John and as long as I keep up with his health (which encourages me to take care of myself too), then I end up dragging myself back out. I have so much I’m excited and motivated to work on so I’m able to stay focused on the good in life.
About once a year, during a certain time of the year, I get extremely depressed for a week. I stop communicating and don’t have the energy for the effort of talking to people. Not even John. I do push myself to talk to him but it’s such an effort. Once that time ends, I’m back to the regularly struggled program.
We also have a winter overlay called S.A.D. which is Seasonal Affective Disorder which tends to kick in during certain periods of the year. For us, this makes winter much heavier than normal. It has been less and less the more we can stay home and CHOOSE to go out when we are up for it. We also then go out for more walks in the sunshine knowing we have time and space to recover afterwards.
CHRONIC PHYSICAL PAIN
Ah yes. Now that the mental side is done (which yes, impacts the physical as it is all interconnected and the body reacts to what the mind processes). I have multiple herniated discs meaning I have trouble sitting, standing, lying down, etc. No matter the movement (even breathing) I feel radiating pain. This also tends to interfere with holding objects. I used to also have a bulging disc but rest and exercise have removed that! That was also after we decided to stay home more. I feel that TODAY, due to the last few weeks, my third herniated disc is going down to almost gone. I am now able to lay on my back! Last year at this time, my back would oddly curve trying to lay flat on my back and would feel hyperextended. I’m still working on this and it limits my movements daily.
I have to take on a lot of the physical work because of John’s POTS which could make him collapse. So I don’t have much choice but to completely avoid strenuous work. Staying home and allowing myself to lie down immediately when I need to has been so much help.
I have a lot of issues breathing in the cold. I can’t tell if it’s a heartburn, chest pain, or a pulmonary embolism. I’ve had all three and the feelings to me are the same. Just the time of it lasting and my impacted ability to breathe further down tells me which one it is. I now have multiple parts of my lungs that are dead due to multiple blood clots in my lungs because I waited too long.
Because of childhood, teen, and young adult trauma, I haven’t been able to process what went on. So I’m holding onto a lot of issues I haven’t been able to work on. I would require a trained trauma-informed medical professional…and therapists/social workers/psychiatrists or even doctors are not all trauma-informed. It’s now being pushed more as a necessity for dealing with the population that needs therapy. Most therapists I have met are great, but they don’t have the answers. Empathy is great, but that doesn’t remove this pain/struggle. I need tangible and interactive means to work through this! Until John is at a more stable place going through his trauma, I cannot go through mine or our running home would collapse.
I’m in such a tense state that I’ll even sprain my ankle while sleeping. This has happened three times now. The first time, it swelled up to the size of an orange. I don’t entirely know why. But even the blanket we normally use will turn into a heavy blanket that feels like it’s pulling my foot down. It doesn’t sound like much, but in situations like these, I have to suddenly be aware of what is happening, not push myself to make it worse, and try to unravel what caused it to help make it stop. Small issues like this tend to pop up all the time. Being at home allows me to be more aware of my inner alarms and messages that are normally completely muted while out around others.
I can’t sit still for long. Everything hurts if I stay still for a few minutes. My back, hips, knees, ankles, shoulders, neck etc. All hurt pushing me to keep adjusting or causing more pain. If I’m at home, I take advantage of this to keep getting up to do a part of a chore or grab a snack/drink etc. This DOES interfere with my focusing on a project but gives me rest, and time to process and help stretch the body. If I stay too focused, The pain grows and stays. This can only be done at home. Why we love working at home. We can make tons of adjustments as needed.
Now the next list are the little various things I have to juggle on almost a daily basis that either don’t fit in anything above or overlap in more than one above. This post has been difficult for me to write. My intention is not to complain about everything I have to handle. My point is that I just want acknowledgment that I am carrying a lot, so please give us patience, and understand we are honestly doing our best all the time. Being denied my reality and existence most of my life, I just want to know that I’m not invisible. I rarely got the emotional support that I needed, so even though I know I need it now, it makes me uncomfortable. The acknowledgment, patience, and understanding is exactly what we need to validate our experience in this world. That we aren't going crazy.
We do want to thank the few people we have met in the past year-two years who have been extremely supportive and have encouraged us to step beyond our comfort zone and try to find those amazing people we want to keep in our lives. The world is such a big place, you’ll always find people who will love and appreciate you for just being you and existing. I never thought that would be possible as a child, teen, to even young adult.
But it IS true!
I have enough medical documentation, and enough people witnessing, and have shared my story (written in journals growing up) as much as I can to show evidence. This was real. (I know we don't HAVE to prove ourselves...but that gnawing internally keeps me up at night if I don't). These struggles are still happening and are still real. Ignoring their reality or hoping they go away doesn’t solve the problem. Addressing the core issue and dealing with it accordingly: with seriousness and intention, will make a difference.
However….the list is long. I get advice for an aspect here and there but it doesn’t take into account how it interferes or interacts with other issues. I.e. keeping things on a list doesn’t work when I am in burnout and processing issues. A lot of the advice I had to find for myself and have used for years before meeting you. Because to get here in front of you, I needed those to cope and drag myself forward to stay existing in our odd reality. I feel negative trying to explain that there is more that needs to be taken into account.
Everything above is almost a constant. The impact and frequency go up and down during the year but are present every day in some form or another. A lot of what is listed below can be in cycles of daily, weekly, monthly, or seasonal.
Intrusive Thoughts- Thoughts that pop in that disturb you. I saw this stupid tiktok about a guy talking funny (on purpose) to a lady at a drive-through. She responded in the same funny tone and they called it ‘intrusive thoughts’. No sweet child. That’s just matching a vibe. Intrusive thoughts are the unwanted (for me) video clips or sudden urges that I know are wrong and morally disturb me: Repeats of horrific events that I’ve witnessed (shows, movies, news reports), thoughts or sudden urges of me doing things I normally would NEVER do. I.e. I see a cliff I’m driving towards… what if I just kept driving off the cliff? <- Now that could also be taken as being suicidal but there is no feeling of desire to do it. Just the…” What if I did this?” “What would the result be like?” Some are very curious but in reality…are not innocent at all. Even as a child, I was terrified of these thoughts and prayed so strongly to never take action on those impulses. I always thought I was being punished for having these thoughts even though I never chose or wanted them. I didn’t have anyone to help me through this, so It’s weird to talk about it now even though it still makes me break down crying today. I still carry this but I have learned to mask and never show if that runs through my mind. Dealing with it has been a bit easier unless I’m already burned which could collapse me. Another reason why I need to prevent burnout.
I’m always hypervigilant with tight muscles. Meaning I get injured more easily. Even with stretching frequently (I’ll have to wake up in the middle of the night to stretch because of how much things hurt). It’s been like this since…11-13? But that also means I sprain my ankles all the time (taking a few days to recover so I can’t do much). If I do too much repetition while not being able to relax, I’ll also get bursitis in my shoulder. I’ve had injections in my hip (I couldn’t walk for almost 3 months), and an injection in my right shoulder (still weird this one required 5 drs but my hip just had one guy and a syringe). I can tell exactly where my bursa is now and when it gets inflamed, I have to not use my arm for anything for up to 3 days. I get distraught because I HAVE to always be doing something. This is not good for my shoulder.
I’m hyper-sensitive to a lot of meds that are supposed to help with a lot of my conditions. However, I react BADLY to even the minimum dose. I can’t take any SSRIs and yet they are always pushed. They make me angry and violent. Yeah, let’s avoid those. The med I took to help me deal with nightmares ended up with me in the ER. Luckily when I discovered that, I was already in the hospital and had two nurses hovering over me on the floor when I awoke. Even the meds help me with anxiety, the minimum makes me sleepy and fall asleep but not stay asleep. Trying to take it for anxiety… lowered mine down to normal people’s anxiety and made me want to pass out. My anxiety on a normal day is 7-8/10. Taking meds brought me down to about a 4/10.
I have issues communicating. Which impacts my delegating and taking on everything myself. So I tend to do everything because explaining what needs to be done and how to do it is a lot of effort. Growing up alone a lot…who would I have been able to talk to to even LEARN this process? I also do things in very specific ways because, with some results, I know it will cause me great distress. So after so much repetition of noticing differences between what makes me very uncomfortable to what doesn’t…Many processes have to follow that pattern. I’ve tried to learn to let go of some, as long as they get done. Micro-managing is exhausting. Sometimes I just want the task done. Don’t care how, just get it done. I’m trying to make more of those.
I still have issues with communicating. I don’t know why, but for most of my life, I’ve been misunderstood. I don’t know why when I think I’m communicating clearly, I’m completely ignored. Even as a kid, when I spoke up, people wouldn’t even look at me or respond. Even in the past few years with John, I’ve encountered so many of MY medical professionals not listening to what I said or ignoring me and talking to John. I even asked two of my therapists as to why when I try to talk to people, they don’t hear me but when John repeats exactly what I’ve said they all respond to him. He has listened to my appointments and still has no idea why they just don’t hear me. John is my translator/communicator so if I say something and you aren’t sure what I said, ask for clarification or ask John. He’s been the ONLY person in my life that gets me. So I have been relying on him to take on most of the communication.
Time-blindness. We both have this but more John than I do. I have a lot more discomfort with things so I tend to be more aware when the distress kicks up. Because of our hyperfocus and partial disassociation, we lose track of time. Also due to our health, we tend to check out of time (it causes more stress to set up deadlines) and focus on our health needs (i.e. I’m anxious and stressed so I need to unwind but I don’t know how long that will take). John’s can be more of the memory compartments are arranged differently. What he thought was a memory that just happened yesterday ended up being 5 years ago. My main focus is our immediate needs: health, home, and food. I’m trying to stay focused on the time cycles of those all the time. We like to get into our projects and realize that 4hrs went by without looking outside or at the clock. This happens all the time.
Kind of connected with Time-Blindness and Transitioning struggles. Also, we noticed we live at a VERY different pace than everyone else around us. We plan and act based on WEEKS and MONTHS rather than HOURS and DAYS. Since we have to keep adjusting to our health, hours and days can disappear like that. We have had to work so hard to accept that our functioning hours will always be lower than everyone else's. So there are also many projects or ideas we have that we WANT to do but end up getting pushed off for what we hope would be a month or two and ends up being two years. (*stares sadly at the art style I created in 2021 that I’ve wanted to recreate*). If we promised something for you or with you, and we forget…PLEASE send us a gentle reminder. We try not to ever say or promise something we don’t intend to keep. If we get burned out or overly stressed, we sometimes have to completely let go of EVERYTHING we had planned to reset. Then scramble to find everything and pull it back in order. This happens a few times a month.
We are still struggling with the message that your worth is based on your productivity. Honestly, we watched a video not long ago that mentioned that THAT sentiment was pushed on millennials. We were told if we worked hard, and got great grades (or degrees) that we would be able to find a stable job and be rewarded. To be thrown into a system that doesn’t reward loyalty and will throw you under the bus to save their skin. They don’t care about your health and is willing to squeeze EVERY LAST BIT OUT OF YOU before throwing you out, accusing you of x,y,z, and hiring someone else. To see that the positions we worked for are still held by seniors who also can’t leave their jobs because they won’t be paid retirement and the IRA isn’t going to pay out like they thought. We’ve met people who were dedicated to a company for years for all the bonuses to be kept by the managers and that worker getting a stupid pin to commemorate 15 years of dedication. Everything we did growing up was commented with something related to money “You could sell that!” “Could you make a living doing that?” “How much did that cost?” For kids just wanting to enjoy the process of creating and sharing their results with people they love…that’s hurtful. In my teens and young adulthood, I was so stressed about finances and the fear that if I didn’t pay back my debts right away they could throw me in jail. This is a millennial thing where working hard did not pan out as we were promised. So most are doing less and the amount paid for and saving their health for other things in life. Your worth is not based on your productivity. We almost killed ourselves in multiple jobs trying to keep up with what even HEALTHY people can barely keep up with. Ridiculous. It’s still a strong hold on us that we don’t want to pass on to others. Health should be prioritized anyway over money that can be gotten later.
I am exhausted to fatigued all the time. This past year, I’ve been working with my therapist to unwind and relax. Which is a lot harder than you think for someone who has been wound up and on alert for 20 years. Relaxing normally means your defenses are down and vulnerable. Those situations growing up weren’t safe. Until we can build a home and lifestyle that creates this safety, we are working on it. (We don’t feel so safe here as their maintenance will claim something as an ‘emergency’ and help themselves in. We’ve had this happen before and they gaslit us. They also have a toxic maintenance worker we don’t feel safe around that management seems to love and promote. Dangerous. He gives off so many red flags and even multiple people living here are WELL aware of this. So we aren’t exactly in a safe area either. (At least the screaming lady/and other people are gone and the property does feel a lot more peaceful the past few months!)
We both have trouble eating food. I don’t have a great recollection of flavors. For me, the main flavors I can reference are chocolate and salt. The rest are…I don’t know how to describe it. It’s like I’ll KNOW what it is and can recognize it when I’m eating it but I can’t recall it. So John takes care of the cooking. I take care of inventory and purchase groceries mostly. But the process of getting food ready to eat has a lot more steps than healthy people realize. Cleaning is a task. Cooking is a task. Eating is a task. By the time we are ready to eat, we have energy for ONE of those. Remember, we are working off barely any energy every day. Even eating well does not influence our sleep enough to ‘have tomorrow be better’. Then we realized we have issues eating when highly stressed (any thought of food makes us extremely nauseous), cold foods can cause more anxiety, certain flavors cause us stomach pains (we have to be very careful of our ingredients), and knowing to prep food before we get hungry. We may crave food then suddenly never touch it and completely forget it exists even if it sits in the front of our fridge. Sometimes the timing of eating interferes with our hyperfocus on a different project. We have trouble transitioning from task to task so we want to get as much done while we are in the flow because we may never be able to get back. I’ve stuck with something two hours past food being done because the rush and flow of things didn’t run out until I hit a certain spot in the process. We have made some adjustments that during winter when we barely have any energy, buy more premade items (i.e. chopped lettuce). We don’t like that it is more expensive…but the cost of not eating and collapsing from lack of nutrients is worth the extra few bucks. We’ve done enough of that for 5 years. Time to change. During the summer when we have more energy, we will cut our own. But we are no longer feeling guilty about this. This isn’t a preference, it’s a necessity for us.
Lists and alarms don’t always work. We have now 4 calendars for this year: a year-long calendar, two weekly calendars (one strictly business stuff and another for by the bed as a general reminder), and one for me to take with me wherever I go. But just because we write something down, doesn’t mean we will remember that we wrote it down or where we wrote it. I’ve been getting better at it as long as I get to stay home and have time to keep reviewing and adjusting the day based on my needs. Alarms sometimes interrupt us when we can’t do anything and we forget. Alarms also make our anxiety spike and can cause panic, so our reaction is to suddenly turn it off. We are working on incorporating it more, but it’s a long process making it a bigger help. It took me 5 years to get John to write dates on the calendar once he gets one so we can remember. Not an easy adaptation unless you have someone who is attached to time and willing to be gentle with constant reminders. I’m overwhelmed because I have to always be aware and if we miss something…I’m the one who will get the fault of missing anything. So I have motivation to keep up…but If I burn out I can’t read any of it. To relax, I have to let ALL prior plans go and reset. When I come back, I may not even realize I told someone I’d help with x,y,z. So please don’t take it personally. Just gently follow up. We would greatly appreciate those reminders.
Panic in the morning! So say we have ONE appointment in the day and it happens to be at 1pm. You would think that isn’t bad. You have all morning and all evening, right? No. That’s not how we process time. Since it’s in the middle of the day we can’t relax. We must always be aware of the time and struggle to do anything. What if we zone out? What if we get distracted and lose track of time? What if we miss it completely and insult the other party? Our cortisol release kicks in, preventing us from being able to relax and focus on anything until we get that task done. Then by the time the appointment rolls around, we are already exhausted. Do the appointment, then try to relax and recover for the rest of the evening. We may or may not be able to do much afterward. So we tend to pick smaller tasks so we don’t feel like we wasted the day. But that always has a chance of exacerbating some other issue.
I’ve been hitting a different burnout symptom lately. I’ll get fevers and feel nauseous if I keep moving. Once I stop and stay still for a few seconds, it completely disappears making me feel like I’m faking. But my temp is noticeably hotter and the nausea is VERY recognizable. So I have to immediately stop what I’m doing and go lie down. This recovery takes a couple of hours to come down. No idea where this is coming from but is becoming more frequent and making me take hours out of my productivity time.
I have miswiring/processing issues that I can recognize. In my body, I have certain nerves that I can poke a spot on my back calf and feel a sting on the top part of my right arm. It’s kind of painful and very distracting. If my leg itches, I end up causing myself pain. Then there is the mental miswiring. When someone is talking to me while I’m trying to read, my visuals cut out. It can go from completely blank (i.e. frozen screen) to reading a word or two and losing it immediately. I hate having to fill out any paperwork when people are talking to me because 100% I’ll make some mistakes. You may see me pause to process the auditory, respond, and then readdress the writing in front of me. But visuals also cut out my audio. I can be completely enraptured by something I see and everything around me just turns into blob noise. They aren’t the same but for me, it’s the same confusion of ‘that’s not right’ and trying to adjust based on what it should be.
I need to isolate to process. John is the opposite. He was used to being forced around people to feel stable. Well, the assumption of the feeling ‘stable’ while I was alone most of my life so I’m accustomed to being alone. It’s a struggle meeting in the middle where I can take care of myself but also still always be around John and on standby. My only real time by myself is when he plays games with his siblings which is between 1-2 hours a few times a week. Except during that time I normally just do chores. Rarely have time to take of myself.
I don’t know why (or maybe I do?) my own needs are a nuisance. I know that I shouldn’t think or feel that but it’s such a core drive. I have so many sensitivities that I cannot mention or else I’d be ‘high-maintenance’ or ‘extremely picky’ or ‘a burden’. So I just stay quiet and suffer. There are times when I just don’t have the energy to deal with these either (such as being able to tell someone what is going on and that I need help). Sometimes I’m not even ready for the change…it’s a weird balance that isn’t logical…but the body ISN’T logical so it makes sense. But I don’t like it. I am trying to get better because ignoring too many does lead to my collapse.
I have a brain glitch that switches what I THOUGHT I said to something completely different when I say it. I’m thinking about the word and talking like normal…many times someone has told me “Wait you mean…this?” and I’d be so confused. “Isn’t that what I said?” “No…you said [insert random word here that doesn’t even sound the same]”. A few times a year I will think I’m saying a word, hear a different word, but say another word…also none related. John has caught that a few times but I know that must happen more often than I thought. So far I’ve witnessed one situation where I did that in public at my event with multiple people where they were upfront with this glitch and asked for clarification.
I grew up with the mindset that I have to keep working until I collapse. (SUCH bad teachings). I was bragged, that they had gone days without sleep and that sleep was for the weak, they were able to work for 3 days straight to get the job done….is NOT something you teach young kids to aim for as adults. And left unchecked by anyone else around me growing up (that you need to take care of yourself), that has been my default go-to to feel like I have worth. So I still work myself into collapse weekly. Though my work does not produce money or items to show off the time I am investing, I AM always working. Most of my projects won’t be able to be fruitful for years down the road. But if I don’t work on them now…will they ever be done? I’m learning to pace myself and take breaks. Noticing when the body or mind is in pain and adjusting to at least be aware and lessen it.
I tend to over-explain myself and write more than is needed or necessary. I end up making things worse trying to get people to understand and be on the same page as me. John has been helping me to notice when I'm doing this and make adjustments. It's been a defensive coping mechanism to prevent misunderstandings and I'm not entirely sure how to stop completely. It may be a lifelong process. This post kind of proves it but I held back...a lot due to time. I'm still working on this with every post I write to lessen the rambling and try to be more concise.
Probably my biggest one is that I’m in a constant state of feeling overwhelmed. We only have 24hrs per day and my to-do tasks each day are already more than 40hrs. Not only is my health a full-time job (actually more because mine never stops), to taking care of John’s health which is a full-time job (still more), taking care of the household/connections/needs is a full-time job, and then us trying to start up a business which is a part-time job hoping to be a full-time PAYING job. Then we are supposed to get a full-time job to cover our bills.
Excuse me what?
As you can see with our struggles, we NEED disability so we have a chance to help ourselves recover. We aren't intending to stay on disability. We need it to give us a chance to recover, get back on our feet, and build something that will last longer than welfare. The other option is for TRE (The Resource Exchange) to help get the hours I was approved for and I’m already doing. I’m working and have been approved for 40 hours of pay per week. I am only getting paid for NINE hours per week. Mind you, our paperwork was submitted AND approved by gov’t twice but the lady in charge of our case last year refused to change it. So we struggled. We ask that you help pray for us to get these hours fully approved so we can be paid the money we deserve! We can’t even afford gas for our car let alone the tires we needed to fully replace last year, the brakes that still don’t work, new lights for our kitchen (it’s been dark for 3mo now; long story), payback my parents we have been borrowing from for 3 months, and update our necessities that we are on the last of (i.e. soaps, shampoos, pads etc).
It’s still a miracle that we have made it this far while working less and focusing on our health. We also believe that our life goals and purpose are tied to this improvement. God has blessed us greatly and we are determined to use what we have learned and experienced to grow our business. We must be on the right path as pieces are being pulled together, and we have never been lacking in our needs. We live BELOW the poverty line. We live on less than $1700 a month. Basically Rent ($1400), Utilities ($30), Gas ($30), Wifi ($20), Phone ($15), Necessities (from $100-200). Our entertainment is free and our wild imaginations are all free. Also because of our health, we can’t go out and do much anyway most of the year. But we are HAPPY. The struggles I went over, are the BEST we have ever had at. We no longer have the suicidal anchor and constant debilitating depression. Or feeling that we HAVE to push ourselves to burnout to make ends meet. We were not made for that. Well, NO human was made for that.
What I am writing now is what we are dealing with TODAY. This is already a HUGE improvement from the year we met. We are no longer sticking to societal rules and standards but adjusting to our needs. IF we can reset to a healthier position, we may try reaching certain societal standards (i.e. going out on weekends every week to spend time with friends) that are expected of healthy, stable adults. Baby steps. This year we are reinforcing our boundaries to finally give us the time to recover. So yes, we will be selfish for the next few years, especially during the winter. Thank you for understanding. =)
