A small update on my college experience: I'm about a month from graduation, all my classes are going fine, I'm on track to have all my internship hours done on time…and I still might not get my degree this semester.
0 Comments
4/9/2019 0 Comments chronic pain is like an abuserI have experienced both chronic pain and childhood abuse (verbal and emotional). When I think about the ways that my C-PTSD affects me, I find that there are a lot of similarities between living with chronic pain and living with an abuser. This observation is not originally mine, but from u/Ineedathrowaway34634 on r/chronic pain.
4/2/2019 0 Comments What Happens when we're hiddenI had a conversation with my husband the other day that really showed me what the rest of the world sees. He had come to visit me at my internship and bring me lunch, and there was a video playing nearby of an event the organization held recently. Obviously, just about everyone in the video was a client of the organization, most of whom have intellectual or developmental disabilities. My husband turned to me after watching for a minute, and then he said something interesting:
"Is it bad that I sometimes feel uncomfortable around people with certain disabilities?" 2/28/2019 0 Comments SPD as a Fashionable ProfessionalThis blog has been a bit heavy lately. Let's perk it up with some good, light-hearted complaining!
Y'all, sensory processing disorder is the absolute worst when it comes to finding professional clothing. Let's break this down into the basics: undergarments, apparel, shoes, and accessories. 2/21/2019 0 Comments The Intersection of Agoraphobia and Chronic Illness, or: How I Learned to Live in my CarAgoraphobia is typically defined as the fear of open spaces or crowds. It comes from the Greek "agora," which was the term used for the expansive outdoor markets held in the center of towns. If a person were afraid to go to the market, whether it was because of all the people, the noise, the lack of safe nooks and crannies to hide, or simply the fact that it wasn't home, they would be referred to as "agoraphobic." In Ye Olden times, it made sense to have this label, since the only places people really went were the market or places of worship. But in a modern world, with modern technology that connects us across the globe, the phrase is a bit antiquated.
Modern psychology narrows the definition to a fear of unfamiliar places, especially ones which provoke a feeling of anxiety or fear of embarrassment. The parameters are highly social--at times, it appears to be a form of social anxiety, as the person is assumed to have ruminant worries about being around people, embarrassing oneself, and feeling helpless. I find this definition to be a bit lacking, at least where chronic illness is considered. I'm not afraid of the Big Wide World. I'm not afraid of situations where I might be embarrassed or socially awkward (though this could be a product of years of therapy). But I do find myself paralyzed with fear at times, stuck in my bedroom or in my house or, in the most frustrating times, in my car. Sometimes getting out of the house isn’t even the concern, but once I get to my destination I just cannot will myself to leave my car. Is this truly agoraphobia, or is it a function of my CPTSD? In my teenage years, my car was the one safe place where I could reliably hide from my abusive parents. In an attempt to forestall coming home, I'd often drive around town after school, piling fast-food wrappers higher and higher onto the passenger-side floor. It's a habit I've unfortunately maintained through college, and one that drives my husband absolutely crazy. So here I am, typing this post rather than going to class, hiding in a completely different building on campus to avoid being seen. I hid in my car for a solid half-hour before finally deciding to come inside, but the whole time I was shaking and on the verge of tears. Why am I afraid to go to class? It's not a bad class at all--I usually really enjoy it! There's no test coming up, no pop quizzes, no difficult classmates or any possible stressors. And yet today I found myself paralyzed at the wheel of my car, unable to push myself to go in. This is where chronic illness intersects. Why am I anxious about today? I have a lot to do, lots of places on campus to visit in order to get graduation paperwork done and to meet with an advisor. That should be an incentive to get going and make the most of my time. But when I factor in my pain and fatigue, it suddenly feels insurmountable. The relatively short walk between buildings is compounded multiple times when I remember I have to get there and come back. The mental energy required to plan the shortest, most accessible route and to remember all I need to do is sometimes more spoons than I'll have for the whole day. It's never easy. Even if I didn't have to spend the energy to plan out the day, I still wipe myself out getting back and forth. I still end up with horrible pain which could lay me out for the rest of the afternoon when I get home. I still have to stay on top of my hydration and sugar to make sure I don't get sick from exerting that much energy. What should be a couple of simple errands that take maybe 30 minutes becomes an all-day affair for a person with chronic illnesses. I am anxious about pain. I am afraid of the helplessness that comes from being exhausted and still far from my car. I fear the embarrassment of missing appointments, missing class, missing everything--simply because I was too tired or in too much pain to get it all done on time. On the days I can't leave my bed or my house, I am afraid that leaving will cause more pain and fatigue than it's worth. I am terrified of getting lost because of my cognitive fog, and even more so of being stranded somewhere, unable to get home because of my pain and fatigue. I rarely go anywhere alone nowadays, which I'm sure isn't the best thing for me, but at least I can get out from time to time. But because my husband is my primary caregiver and accompanies me almost everywhere, my paranoia and fear extends to him too. I am terrified of something happening to him when he leaves for work. He works third shift, so he drives there at night and comes back in the early morning after a 12-hour shift. I'm terrified that he'll be too tired coming home and get into an accident. Sometimes it's not even any concrete fear, I'm just scared of being alone and I'm scared for him to leave the safety of the house. I can count on very little in my life because of my illnesses. I can never trust that I'll wake up with any amount of energy and limited pain. I can't trust that anything I eat won't destroy my stomach. I can't trust that I can get anything done I need to on any given day. The presence and safety of my home, my bed, my car, and my husband are the only constants I can rely on. (Well, the dog as well to some extent, but she usually likes him more than me.) Logically, it makes sense for me to be afraid of the outside world and to seek the comfort of my safety zone--and that's the problem. I have legitimate reasons to be fearful. But treating agoraphobia and addressing the irrationality of your anxieties is much harder when those fears are based on reasonable expectations that consistently happen. (For the record, I am seeking treatment for this, and I am always an advocate to seek professional help whenever possible.) For that reason, I'm not sure that CBT and talk therapy are really appropriate for people with both chronic illnesses and agoraphobic tendencies. Our fears are founded in fact, so logic-ing away those fears by demonstrating how irrational they are just doesn't make sense. For people like us, all sides of the issue have to be addressed. Maybe we need stronger treatment for a particular symptom which is causing us stress. Or maybe we need a change in mobility aid to support our confidence in our ability to navigate the world. If all else fails, we at least need treatment to manage the anxiety through improved coping mechanisms and possibly medication. As much as I hate to say it, and as much as it sucks in the moment, bad things are bound to happen. We have to be okay with the idea that we will sometimes get stuck in a bad situation, and we have to learn to manage the panic that comes with it. A life stuck in bed, at home, in your car because of fear…it's a life half-lived. P.S. If you made it this far into the post, I'll reward you with a joke. My husband calls it "Al Gore-aphobia" because it's a fear of the outside...y'know, the climate. My college experience has, on the whole, been…weird. It's been complicated, it's been difficult, and it's been stressful, but mostly just weird. This is a long story, so buckle up!
In my freshman year, I was a Biology major. I had a third-floor dorm on the edge of campus, and the science building was all the way on the other side. I was incredibly excited to go to college; I had always loved science, and I've always loved learning. I was positive that these were going to be the most wonderful years of my life. And then, on the third day of class in my first semester, I twisted my ankle walking back to my dorm after class. I painfully shuffled the last hundred yards or so to the stairs, where I had to sit down and rest. While I contemplated exactly how I was going to climb three flights of stairs, two guys from a nearby dorm saw me crying and offered to help. (Very rarely had I experienced sympathy and kindness like this before, and it really touched me that these guys would go out of their way to help some random stranger.) For the rest of that semester, I struggled to heal. I wore a brace and used the RICE method like I had been instructed to, but I really should have been on crutches or a cane for a few weeks too. By the second semester, I spent a few mornings a week at physical therapy, which did approximately nothing for me. I was doing alright in my classes, though I was slow getting to and from, and I was struggling a bit to stand during my lab classes. The content was fascinating and engaging, and I was excited for the prospect of learning more and growing in the field. However, little issues here and there began cropping up. I was having relatively minor aches and pains (compared to where I am now), but the ankle still wasn't healing well. I was also having trouble keeping my blood sugar up, which led to me feeling ill towards the end of long labs (those were 3-hour classes right after another 2-3 hours of lectures). I'd have to pop glucose tablets and occasionally run out to vomit because the spikes were too low. My sensory processing issues were making the biology labs a bit difficult, as those subjects can be particularly smelly, and it was often loud because of equipment. That would trigger anxiety and panic attacks, but I mostly got that under control by the end of the year. The biggest issue though was my vision. See, in biology courses, microscopes are an essential tool. Most of what we were dealing with was on a very small scale, down to tiny microorganisms that would swim across the drop of water on the slide. Unfortunately, a person really needs two eyes functioning at around the same level to use compound microscopes effectively. We tried hooking it up to a computer display, but there was so much lag and high contrast that I couldn't make heads or cloacas of anything. By the end of my first year, I had to accept that a science field may not be a possibility for me. It broke my heart. I was dead-set on a career in lab science; I had planned to go to graduate school and study neuroscience, and I thought I had my whole life planned ahead of me. But, as things tend to go, the best laid plans can fall flat. I decided to pursue my "back-up" major of Special Education. To be honest, I wasn't fully sure why I picked it. I didn't necessarily want to be a teacher. But I had done a lot of soul-searching, and I knew I wanted to help other people with disabilities. At the time, I had no idea how far that would go. I still grieve the loss of the life I had planned for myself from time to time. It's worse when I realize how much I still remember from that one year, and even more so when I realize how much I've forgotten. I have notebooks full of equations and notes that I only vaguely understand now, and it can honestly be kind of depressing. I actually excelled in my education classes, despite not being fully committed just yet. I enjoyed the observations I did in a few classrooms, though I quickly found that elementary was not the place for me. Unfortunately, the program at my university focused on elementary/primary education for most of the classes, with only a small handful even breaching secondary (middle and high). During those years, I was gradually losing more and more mobility. Small aches and pains when I walked a long way soon became widespread, intense pain. My longest distances became embarrassingly short. I couldn't stay on my feet more than ten or twenty minutes at a time, and it soon became that I would continue to hurt as soon as I stood back up…and then, even when I was still seated. I started using a cane, then a rolling walker (aka Rollator), and occasionally forearm crutches. In the fall of 2018, I struggled to complete a pre-clinical placement. I was in the classroom all day for one day a week, and I was in classes at the university almost all day for the rest of the week. I was also planning my wedding, which was blissfully simple and required almost no work on my end. But I was exhausted. My pain was so intense that I started using a wheelchair (secondhand from Craigslist) to help me get around. But even that just wasn't enough. My cognitive functions became so impaired from the pain and fatigue that I was constantly forgetting assignments. I was losing everything, misplacing documents and important items, forgetting what I'm saying halfway through a sentence--even my balance became impaired. I was so overwhelmed with classwork on top of my health crisis (increasing pain, CPTSD symptoms, IBS symptoms, and fatigue), I ended up dropping the ball on all of it.A I ended up having to take a medical withdraw from the semester. It was a shockingly easy decision to make. I knew that my only hope of graduating was to cut my losses and find any path out of this. The medical withdraw allowed me to take a full month to myself (all of December), during which I got married and felt a tremendous amount of relief. The fog was lifting, albeit slowly. I changed my major to a related course of study, which allowed me to use all the credits I had earned and take an internship instead of student teaching. This is where I am now. I'm doing so much better overall, and my ability to think and focus and actually complete work has come back to levels I haven't had in years. I'm still in pain, and I still have fatigue, and I still deal with all my other symptoms as well, but I have finally gotten to a manageable place. It's a somewhat nerve-wracking place, since I have less security in this degree than the certainty of a special education job, but I'm so much healthier. My load now is just two classes (which are practically identical and require very little extra work) on top of the internship, where I spend three days a week. It's still new and I still have several weeks to go, but I think this is going to work. 2/13/2019 0 Comments My Disabilities: Complex PTSDCPTSD is a subset of PTSD which occurs because of long-term trauma, rather than a single event. This diagnosis is not officially recognized by the DSM-V, but plenty of practitioners are familiar with it and the basic concepts behind it.
My CPTSD was caused by long-term emotional and verbal abuse from my parents. Most people with long term childhood trauma would fall under the CPTSD umbrella. It’s different from traditional PTSD in that there is no one singular moment to process; it’s a lifetime of abuse and neglect that has to be healed. (I should note that C-PTSD is not limited to child abuse/neglect, but any instance of long-term trauma like domestic/spousal abuse or a series of one-event traumas over a longer period of time.) As children, our behaviors and thought patterns develop because of the environment we are raised in. When children feel safe and loved, they develop healthy attachment to family and friends, they can process emotion better, and they don’t need coping mechanisms to make it from day to day. Children who feel unsafe and unwanted struggle to form healthy attachments (clinging to the wrong people or pushing good ones away), are prone to depression and anxiety, prone to substance abuse and self-harm/suicide attempts, and form maladaptive coping mechanisms which become roadblocks to adult life later on. One example of this is dissociation. It’s kind of like daydreaming, except that it blocks out the painful experience a person is going through. For me, the only way to handle my abusers was to make myself as small as possible and remain stoic and silent. (The C-PTSD community often refers to this tactic as "grey rocking," in which the victim makes themselves boring and stoic to avoid feeding their abuser.) Because of two full decades of grey rocking, I have a habit of slipping into dissociation when I'm overwhelmed, upset, or feel threatened. "Feeling" threatened and being threatened are two totally different things though: I often dissociate in the middle of debates that start to get too heated, or when two other people are fighting for whatever reason, even if I'm not involved. In some ways, this is one of the most impactful symptoms of all my disabilities. My husband refers to it as me "shutting down." For a person who still needs this coping mechanism, it can provide a safe refuge for your brain to go when you are trying to avoid trauma. But for a healthy relationship, it can feel like you're keeping the other person out and that you perceive them as a threat. Another example is hypervigilance. This is when a person is almost too aware of their environment, to the point that they become paranoid and sometimes obsessive. For some people, it's primarily sounds (this is my primary focus, since making sound was so heavily punished when I was growing up), while for others it could be smells, visual information, or that hair-on-the-back-of-your-neck feeling. Usually it's a combination of a lot of factors, all of which make the affected person feel as though they have to "stand guard" in case of danger. I learned to walk silently, breathe silently, and listen carefully for noises in the house. I could identify the footsteps of any of my family members in the house, as well as their emotional state. This helped me survive, at the time, but now it just makes me take too shallow of breaths and be overly aware of the world. I can't sleep without earplugs because every tiny sound will wake me. I get paranoid when I hear the neighbors move around or make noise, and I get paranoid about making noise that they might hear. It's a terrifying state to be in, even if it is useful at times. The last example I'll give is emotional flashbacks. I'm not sure that it's truly a coping mechanism so much as a brain function as a result of trauma. Essentially, these are like the flashbacks we see in movies and on TV. The critical difference though is that you don't usually see or hear anything to accompany it. It's this disembodied feeling that sneaks up on you, often out of nowhere. I occasionally have olfactory hallucinations with them, which means that I smell things that aren't there. The smell is impossible to describe because it only existed in that particular situation, so it's hard to check if it's real or not. And since I'm hypersensitive to smell because of SPD, the smells are especially intense and stressful (or maybe it's why I remember them in the first place?). The flashback is truly comprised of the emotions that you felt when the trauma occurred. But since they come on by themselves, with no visual or auditory cues to give you an idea what they mean, it can cause you to misconstrue your flashback with feelings related to the real world. If I have a flashback while I'm at the grocery store, for example, I might associate the feeling of fear and paranoia to being at the store or out in public. That’s part of the reason why I'm mildly agoraphobic and sometimes struggle to leave the house. Overall, C-PTSD is a jumble of slightly-related symptoms which all stem from the brain trying to process trauma, protect itself from harm, and cope with reality. When a person is out of the abusive environment, sometimes the brain just continues these patterns for years because it assumes trauma may return at any time. Traditional CBT and talk therapies haven't proven to be overly useful for most people with this form of PTSD, because the trauma changes the nature of memories and thought patterns--it's not like treating typical depression, anxiety, and paranoia. EMDR seems to be one promising therapy, along with somatic experience therapy. I currently am still searching for a therapist and method that works well for me, but I supplement my current therapy with medication, social skills practice with my husband, and reading books like Pete Walker's Complex PTSD: From Surviving to Thriving. The Body Keeps the Score by Bessel van der Kolk, M.D. is another popular one. PD is a diagnosis that is pretty unknown, except to those who have dealt with it. Most people say it’s a childhood condition that goes away in adulthood, but more current research proves that false. The symptoms vary person to person, but the basic definition is that a person’s brain and nervous system over-react or under-react to sensory information. My body mostly over-reacts. Certain smells, loud noise, and bright light are borderline painful to me, as well as a lot of textures. The smell of oranges, for example, makes me extremely nauseous, and the noise of a busy store makes my ears rumble and hurt. It also causes panic attacks in the face of this sensory overload, which is embarrassing and inconvenient to say the least.
The way I deal with this is by avoiding the worst stimuli as much as possible, and managing the things I can’t avoid. I can’t just walk around nude, for example, so I choose soft fabrics with few scratchy seams (and cut out any tags) and which isn’t too tight or too close to my neck (like a crew-cut shirt). Shoes are a big issue, so I tend to wear the same pair until they fall apart. Bras are the worst, but that’s a post for another day. SPD can be a huge pain in the ass, and it’s so hard to describe what it feels like. As always, I'm happy to answer questions and elaborate! SPD is very misunderstood, so I'd love the chance to educate more on this topic. 2/13/2019 0 Comments My Disabilities: Pain and FatiguePain and fatigue have been an issue for me for about three to four years. My doctor and I still aren’t 100% sure that fibromyalgia is the correct diagnosis for me, but it works for now. I have aching and shooting pain all over my body practically all hours of the day. My lower half is the worst, from my hips/tailbone to the soles of my feet. However, it also spreads to my shoulders, spine, elbows, fingers, and knees. If I’m not in pain, I’m usually too exhausted to move and barely able to hold myself up. The worst part is that all my lab work and x-rays have come back fine every single time. An MRI might show something, maybe, but I just can't afford it. No answer is often much worse than having a diagnosis...
Currently, all of this is managed through medication (very limited, just a low-dose muscle relaxer and a medicine at night to help me sleep) and mobility aids (usually a rolling walker or a cane). But recently, my doctor and I determined that it would be better for me to get a wheelchair made to fit me and a power-assist device to help with hills and carpet and long distances. Vocational Rehabilitation is helping me get these devices since my insurance won’t cover it fully (and I have no funds to pay for the difference). It’s taking a while, thanks to bureaucracy, but hopefully I will get it either in February or March. As always, I'm happy to answer any questions and elaborate! IBS can be embarrassing to talk about, but I am happy to speak up if it may help someone one day. For me, my IBS is a combination of frequent, uncontrollable nausea and near-constant diarrhea. I have few “safe foods” and they change from time to time, where a safe food may begin to cause symptoms and a previously bad food may be okay for a while.
Oddly enough, I have found that greasy, fat-heavy food is easier on my stomach than fibrous leafy greens and lots of fruit. I do the best I can to incorporate good food, but it can often come at the price of a day lost to the bathroom. Other than diet, my symptoms are managed through medication to ease intestinal spasms and acid reflux. I'll also lump in my random symptoms of low blood sugar and SPD-related appetite blindness. I often don't realize I'm hungry until it's way too late and I'm starting to feel nauseous, simply because my SPD causes my brain to ignore a lot of signals. I try to eat at more scheduled times to counteract that, but I tend to stay calorie-deficient more often than not...yet I never seem to lose weight. Go figure. However, even when I'm eating as much/as often as I can, I still have sudden spikes of low blood sugar which can leave me out of commission for hours. Shaking, cold sweats, nausea, the works. I tend to be stone-stomached when it comes to vomiting (my innate stubbornness can usually keep me from actually getting anything out), but these hypoglycemic attacks are some of the few incidences I actually do end up throwing up. As always, I'm happy to answer any questions and elaborate on this topic. Gastro issues are so taboo in America, and it's just nuts. Everyone poops--why be embarrassed? |
AuthorApollo ArchivesCategoriesAll Chronic Pain College CPTSD Gastro Life Update SPD Vision Work |