Not Pretending

I hesitate to admit this, but it’s important. Before i got sick I was already pretending to be normal, pretending to be happy and productive and on some sort of trajectory, but I was just as lost as I am now. I have been dealing with severe anxiety disorders my entire life, ADHD, obsessive behaviors too numerous to list, occasional bouts of treatment resistant depression, insomnia, self-injury, severely restricted eating or binge eating depending on the year, as well as growing up with chronic pain to a much lesser degree than now in the form of frequent dislocations/subluxations, migraines, and dizziness/nausea, all of which went untreated for a long time, or treated but not correctly.

Now that I have a series of chronic illnesses/conditions, my mental health is under the microscope constantly. It has been enlightening but also terrifying. Not being able to hide my mental health or my physical health anymore is the part I’m still trying to accept. I’m used to being miserable to a degree and pushing through, always pushing through, and to have my body take that ability away from me has caused some serious grieving.

The thing I was most commended for other than my test scores was my ability to pretend like I wasn’t hurting while I was, both physically and mentally. All of the bits and pieces that make me my own person are also things that drew negative attention when I was younger, and I have trouble getting over that still.

My response to the negative attention, eventually, was to reinvent myself to be as normal as possible, as plain as possible, to not stand out too much, and to deny my artsy, nerdy, angsty side the freedom it wanted. Now I’m left with artsy, nerdy, angsty as things I need to learn to be proud of and to embrace again. I want to, I really do.

can you remember who you were before the world told you who you should be?

Those parts of me which long for the freedom to reinvent myself into the person I really am are winning. My hair is teal, my clothes are whatever the hell I feel like, I have been writing more honestly and openly, and I have picked up a paintbrush again.

So the path is there, I know what I need to do, but I’m scared to be myself again. For so long I’ve been this average-intelligence, straight, workaholic, brown-haired, plain-clothed girl who kept the ugliness and the oddness to herself, absolutely devoid of the desire to write the darkness inside of me or to paint it, only allowing thoughts out through a careful filter, and calling that happiness. It wasn’t. Neither was it sadness, exactly. I was just going in the wrong direction.

The reality is that my careful filter is broken now and only works in fits and starts… I can’t be anyone other than the person I have always been underneath the normal life I was trying to build around me like armor. I still love the interests I have cultivated while lost and wandering through life; I still love to garden, bake, and make my own home and beauty products. I absolutely still love my boyfriend, as well as this house and our cat. This is simply my soul wanting me to unleash it in any way possible in my new life, with my new limitations. I need to find a purpose, yes, but I also need to find myself again, be kind to myself instead of denying myself the freedom to be weird and potentially wonderful. So much anxiety must be tied up in the act of pretending not to be excited about the things that truly make me happy.

I don’t fully know what my happiness will look like now, but it will look different than the one I pretended was right for me.

To be honest, I’m relieved.

There are parts of me that are stronger than ever, and then obviously there are parts of me that are so weak that they have stolen life and time from me. But I am a survivor. This is me surviving. It might not be pretty, the struggle can get ugly and mean in an instant, but I have always survived, and I will continue to do my best. That will have to be enough.

I’m not any less okay than I was yesterday or the day before, I am simply not willing to pretend to be better or different than I feel. Some days I am still a suicidal teenager and some days I am a sage adult, and many days I bounce back and forth between the two. However, both are okay, both are me, and I am always going to be a survivor, even when I have no idea what else I am.

The term survivor implies that someone came through or currently resides in hell, however, and that is the part that people seem to forget. The struggle is what breaks you, but it is also what rebuilds you. We cannot be the same after we travel through nightmares turned reality.

Not the same, but certainly still me.

I am just too exhausted to draw a silver lining on my clouds today. Today it’s okay to acknowledge the storm overhead. To be soaked in it and shivering and afraid of the power behind it, but to remember that the sun also exists, just beyond those clouds.

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More Exhausted Than Ever

Right now, I will do something very small and have to sit down immediately after or during a slightly more rigorous task, and it’s not the pain that’s knocking me down so hard, although there is a lot of that, I’m just pretty damn exhausted. Like, my bones are way too tired to walk to the mailbox or make it down the stairs to the garden, but I’m still able to fight through and manage those things sometimes. It’s very confusing. Overall though, the fatigue has ramped up to a point where I’m scared a little.

This is not meant to be a bid for sympathy or anything, I just have to have a place to put all this down and get it out of me. My body won’t allow me to do much of anything else and even writing has me fading in and out of consciousness because it leaves me so fatigued. To be completely honest, I’ve been feeling a lot worse lately. I pushed myself trying to create a small business that was never going to happen, and in many other areas of my life, and none of my accomplishments have added up to anything lately, not even one completely clean room. I have learned a lot and there were tiny moments of excitement and victory, but that isn’t anything I can put on my resume, really.

It’s depressing to feel like your health is going in the opposite direction that you’re aiming for. A lot of us are familiar with that feeling though, unfortunately. It’s just another part of chronic illness unless you can find a treatment that works. For a while things will hold steady symptom wise, and then a cluster of new ones will pop up one after another, which is what has been happening recently. Not every single new symptom stays around long-term, some of them will just last the length of this particular flare up, and some of them will attach themselves to my illness and they will be added on top of my daily already unmanageable pain, fatigue, and bodily systems that are completely out of whack. But these new symptoms will not be so courteous as to show up clearly on a test. Just abnormalities here and there, nothing to make an easy diagnosis off of. It makes my head spin trying to get a clear grasp on even the list of weird things that have happened with my body, and a lot of it isn’t stuff I feel comfortable sharing.

This flare up has brought with it a bout of sleep paralysis episodes, limb tremors and increasing muscle weakness, much worse than usual chest pain, rib dislocations, absolutely unpredictable new headaches and some severe migraines that actually got the better of me and landed me lying down until they subsided, hip subluxations on both sides, knee instability and weakness, poor typing and speech, including mixing up words, writing something completely different from what I was intending or thinking I was writing, forgetting phrases and words, increased inability to finish a sentence because I can’t remember why I started it, using big words but forgetting all the small ones, dizziness, trigeminal neuralgia attacks that feel like being struck with lightning over and over again in the same spots on my face, occipital neuralgia that is like being chiseled into on the back of my head, or like someone is grinding a screwdriver as hard and slow as possible into my occipital nerve, tmj issues making it a challenge to eat/smile/talk too much, jaw dislocations hundreds of times a day, lack of coordination and hand dexterity as well as random violent spasming when I try too hard to control my muscles for extended tasks like painting and typing, really painful joints all over, fatigue so heavy I feel like my veins are full of lead and my muscles are made of tissue paper and my bones are filled with cement, GI issues which all of a sudden include throwing up just about every other day, and delayed stomach emptying with all the associated nausea and pain and hating food/food hating me, possibly gastroparesis but I’m hoping not, problems associated with migraineurs even when the really severe head pain is not present (olfactory hallucinations, auditory hallucinations, light/sound/smell sensitivity, big blurry spots or color spots in my vision, things that look like shiny, constantly moving sprinkles all over my field of view, thinking things are moving when they aren’t, as well as not being able to track movement very well), falling asleep suddenly after exertion with no warning, feeling like I’m walking on razorblades and broken glass, sudden moodswings mixed with lots of feeling hopeless or just numb and dissociated from my disobedient body, muscle cramping, brainfog that is stronger by far than my Ritalin prescription, not understanding what people are saying unless they repeat themselves a few times, some obsessive behaviors I cannot stop doing and ptsd flashbacks, skin that hurts like thousands and thousands of nettle stings, and just so much more, but it would take so long to list, and this is why seeing a doctor once every 3-6 months is totally and completely unhelpful.

And I’ve been like this for two and a half weeks now, and it keeps dropping new surprises on me so I’ve got no idea when it will let me go…

I lost 15 pounds, and that was startling and positive. Not sure why I was so startled, I think it’s hard for me to notice the healthy changes I make and pat myself on the back unless some kind of tangible progress comes out of it, but lately I actually have noticed myself doing better at picking the salad from the garden over chips or pasta on the side, I’ve been back into yoga in bed, and in my better moments I try to sneak tiny bits of yoga into my day, with my arms close to my body and not pushing my flexibility to it’s max because I’m not in that kind of shape and my body can and will bend too far in every direction if I don’t watch myself in a mirror while I do it.

I’m so exhausted that it makes me laugh that I’m adding yoga back into my days but I can’t shower more than once every five days. Priorities slightly skewed? I don’t know, a shower is one very big expenditure of spoons that you’re committed to once you start, and yoga I can stop any time it hurts me, I can modify it to hurt less or not at all and to be done lying down even, and I dole out spoons one at a time to each little micro-session which is much less punishing on my body than taking a shower. God I miss being able to do that every day. The stupid shit we take for granted when we are healthy, I was so greedy taking two or three a day during sports and summer or just to get warm in the winter, and I never imagined I would ever give up my obsession with being sparkly clean every single day. It hurts to think about stuff like that though, and in general I just try to accept that things are the way they are and not ask “why me?” too much.

Not being able to shower is a big gauge for how much of a toll this has taken on me. The things I would have never given up if I had a choice, the gardening every day and walking for hours, the freedom of driving and earning a paycheck even if I didn’t enjoy the job or the commute sometimes, my clean house, the freedom to work out or go out with friends whenever the mood hit me, frequently visiting vintage shopping and buying fancy coffees just to treat myself, painting whenever I had a creative idea come into my head, preserving and cooking food especially when it came from my garden, baking bread almost every day, fashion, being able to complete deadlines and not be a total flake, being able to plan my next day and stick to it,

I feel bad enough on a daily basis that younger me, who had a damn high pain tolerance, would have been asking to go to a doctor almost every morning. But I don’t go even when it gets to be unbearable, because it’s so discouraging to be told more than once every 3-6 months that there is nothing new to try, nothing else to do that is in my price range, nothing, nothing, nothing, and to be treated like a drug seeker, a whiner, a lazy kid who can’t be bothered to get a job, when I just want to get better. I just want some hope, some kind of a future to plan on and look forward to. I don’t want to have to take these drugs. I don’t want to have to take two sparse and precious oxycodone just to get through taking a shower. This is not something I constructed to get out of working. I miss working. I’m young, my ability to work was my future and now I’m very lost.

I’m reaching for that point towards acceptance of my illnesses and new life where I can start to explore my talents and try to find more solutions, more small improvements, more joy in my life. I feel like it’s both close enough to grab and pull closer and simultaneously so far away that I fear I just can’t get there. I know I can only take it one day at a time and keep looking for the small victories, the shiny bits and the lessons learned no matter how painful, so I can quietly celebrate my life for those wonderful things amidst the chronic fatigue and pain.

Ehlers-Danlos Syndrome Hypermobility Type: A Genetic Predisposition to the Development of Various Functional Somatic Syndromes | The Pain Relief Foundation

What follows is a truly fascinating look at why so many Ehler-Danlos Syndrome patients (especially Hypermobility Type, also used to be called EDS-III or Type 3), including myself, languish in pain, not taken seriously, waiting for a correct diagnosis. I accurately fit every requirement for EDS and was born with bilateral hip dislocations, a hole in my heart, and Spina Bifida Occulta affecting both my lower spine in a visible dimple and then at the area where the disc C2-3 should be I have instead two fused vertebrae not caused by injury or surgery. Those same physical therapists and radiologists have told me that I have craniocervical instability, but the PT couldn’t do much about it except help me find exercises that were somewhat safe for my neck.

In a slow car accident involving a semi truck with three trailers hitting my car on my way to work, I sustained two fully torn vertebral discs, and at least four other bulging/slipped discs. That much damage from a car accident that didn’t even total my used vehicle? Totally a give-away for Ehler Danlos Syndrome. I know that Spina Bifida is somewhat more common in EDS families, but I don’t know if there has every been an official link acknowledged between the two, although being born C-section with dislocated hips should be a pretty good indication that I had faulty joints. It’s crazy that my doctors continue to ignore my pleas for a solid EDS diagnosis even though I fulfill the Beighton and Brighton scales/scores on every move, and even though as a child I was known in my gym as “rubberband girl”. That was in comparison to all the other ages of girls there too, some of whom competed and did very well, but were never as flexible as me. I injured myself too many times and healed too slowly to keep it up into puberty . Isn’t that almost the same story of every person with EDS who participated in rigorous and physically demanding sports not knowing they had a collagen problem?

Further proof comes from my mom’s knee cartilage disintegrating in one night of dancing, according to her, and never being the same afterwards. Also the way we scar, and the hormonal imbalance most of us have. All the hip problems, bowel problems, arthritis and vascular issues that run in my family? Probably tied in to EDS genes, is my best guess, and those are all definitely areas of the body affected by collagen or lack thereof. All areas of the body are affected by collagen production. The craziest part is that I have instead been called a liar, been misdiagnosed several times and then called a liar again, which I pushed through only to be assigned many of these so called “wastebasket diseases” for which there is no real standard of care that works for all or even most patients. I know, horrible, horrible name, “wastebasket disease” and it sucks to be in that category because many doctors actually treat you like trash. At the best they mean well but have no idea how to help you significantly.

I don’t know why I have been diagnosed with JHS since my birth, back when it was known as Benign Hypermobility Syndrome (benign, my ass), but in texts now JHS and EDS-HT are medically acknowledged to be the same disease with the exact same treatment recommendations except that with the diagnosis of EDS my doctors may understand why tiny doses of opiates have never and will never cut it. I’m so opposed to any kind of surgery until they understand if I require more anesthetic during surgery than a non-EDS patient.

When I was young and injured myself pretty much once a month, doctors would look at my bones on x-ray film and say that they looked like the bones of a much older person but that I should be fine because I have bigger bones and that should help protect me. I’m not fine, doctors! Help!!! Send me a time machine or at least a geneticist who will take me seriously! I have already lost so much mobility and flexibility, and my spine is so harshly curved now in two places that it is starting to be difficult to get dressed, my fingers get stiff and spasm a lot more, as well as dislocate with the slightest of tasks, even typing. It’s not super painful unless they dislocate in a specific way. There are places it’s happened so many times I don’t notice it except when the joints get stuck and won’t move, like my knees for instance!

The studies that have been done recently say that 90% or more of all EDS sufferers have no idea what is wrong with them, or they know but can’t see a geneticist to confirm, due to lack of clear diagnostic criteria and no clearly defined specialists who commonly deal with the genetic condition. Then there is the often prohibitive cost of genetic testing. I can see why so many of us get left to rot. And there are probably a good deal of high functioning EDSers out there who weren’t dancers or gymnasts and who didn’t abuse their bodies as much as I did, and their life will likely be normal enough that if they learn of it, it will be because of having a child who has EDS, more than likely. I want to find out before that!!! That abundance of undiagnosed EDSers living with the disease seems backed up by all the patient populations they examined in the below article. The high occurrence of fibromyalgia alongside EDS-HT (around 50% of the fibro patients had EDS markers, and around half of the studied EDS population were found to have all key fibromyalgia symptoms) makes perfect sense as outlined by the last reblog I did from EDS InfoThat post deals with the fact that Untreated Chronic Pain is a Medical Emergency, where chronic pain states are explained as often arising from untreated acute pain after trauma, which is totally true in my case. I was too young to be in real pain, because that’s a thing, and my car accident wasn’t impressive enough that I merited correct dosage of narcotics, and I was shamed into not asking for them as often as I needed them.

Anyhoo, rant aside, the article is an elegant, and unique, explanation of so much that is difficult about navigating in the world of chronic illnesses and differential diagnoses.

Ehlers-Danlos Syndrome Hypermobility Type: A Genetic Predisposition to the Development of Various Functional Somatic Syndromes

Introduction

Functional Somatic Syndromes, conditions characterized by functional disability and self reported symptoms rather than clearly demonstrable organic problems, are a common contemporary health issue [1]. Each medical subspecialty seems to have at least one somatic syndrome for patients whose symptoms cannot otherwise be medically explained. These include: irritable bowel syndrome (gastroenterology); fibromyalgia (rheumatology); tension headaches (neurology); and chronic fatigue syndrome (immunology) [2]. In recent years, however, a significant portion of these patients have gone on to receive a diagnoses of a little known connective tissue disorder: Ehlers-Danlos syndrome hypermobility type (EDS-HT), formerly type III [3]. In this literature review, I will discuss the features of EDS-HT, explore EDS-HT as a possible unifying concept for various functional somatic syndromes, illuminate further implications of the described findings, outline a set of diagnostic criteria that should be implemented by healthcare professionals in functional diagnostic medicine, and propose a novel way of thinking about functional somatic syndromes.

Ehlers-Danlos Hypermobility Type (EDS-HT) Overview

 EDS-HT, considered to be one and the same with joint hypermobility syndrome (JHS), is a relatively common, frequently underdiagnosed heritable condition which predisposes those afflicted to chronic, widespread musculoskeletal pain and a wide variety of articular and extra-articular features purportedly linked to constitutionally abnormal collagen. The diagnosis is primarily clinical in essence and is largely based on the Beighton score (a simple system used to quantify joint laxity and hypermobility) and medical history. It is predominantly of autosomal dominant inheritance, though the molecular basis of EDS-HT is still largely unknown except for a minority of patients mutated in TNXB and COL3A1 [4]. Skin biopsies may show alterations in collagen fibril morphology [5]. Early literature fixed the frequency of EDS as a whole to 1 in 5000, with EDS-HT accounting for approximately half of all registered cases. However, due to it’s vast underdiagnosis, a presumed frequency of 0.75-2% has been proposed for EDS-HT [4].

Hypermobility and the Autonomic Nervous System:

The Missing Link for Various Functional Somatic Syndromes

When first described, EDS-HT was considered to be a relatively benign condition, with acute and chronic joint instabilities as it’s unique clinical consequence. Recently, however, accumulated experience on the management of EDS-HT patients elucidated a more complex clinical picture. In particular, subjects with joint hypermobility appear to be more prone to developing a range of functional somatic syndromes [3], including fibromyalgia [6], chronic fatigue syndrome [7], headaches [8], complex regional pain syndrome [10], gastrointestinal functional disorder [11], pelvic organ prolapse [12], and orthostatic intolerance [13].

An underlying dysautonomic process may explain many of the aforementioned functional somatic syndromes seen in EDS-HT individuals, which are present in practically all major body systems. Leading research suggests that the pathogenic relationship between dysautonomia and congenital laxity of the connective tissue is primarily attributable to the pathological deformation of the brainstem and upper spinal cord from occipitoatlantoaxial hypermobility and cranial settling [8]. In other words, craniocervical hypermobility and instability, and the resulting deformative stress of repetitive stretching and ventral brainstem compression, appear to underlie the observed autonomic dysfunction in hypermobile patients [9]. As demonstrated in pathological reports of fatal cases of traumatic brain injury and numerous animal studies, repetitive stretching of nerves can lead to clumping and loss of neurofilaments and microtubules within the axon and promotes neural apoptosis [14][15]. Strain also alters the electrochemistry of the nerve by decreasing the amplitude of action potentials [16] and increasing calcium influx into the cell [17]. When you apply this research to the context of hypermobile individuals, the underlying process of autonomic nervous system dysfunction becomes palpable. Unsurprisingly, the histopathological changes in neural axons that are undergone in these situations would not show up on any routine diagnostic test. In extreme cases, however, cranial settling and a reduction of the clivo-axial angle may be demonstrable on MRIs, but typically only when imaged in the upright position [8]. This would explain why many of these patients’ diagnostic imaging reports state negative results.

In accord with craniocervical hypermobility findings, recent studies have suggested that up to 70% of patients with hypermobility have orthostatic intolerance and other forms of dysautonomia. The orthostatic effect in EDS-HT individuals may also be compounded by abnormal connective tissue in the vasculature, which results in an increase in blood vessel distensibility in response to the augmented hydrostatic pressure that occurs during orthostatic stress. This leads to exaggerated blood pooling in the lower extremities with a resultant tachycardia [18]. While these findings were predictable, a reversed frequency study, wherein hypermobility was measured in patients diagnosed with Postural Orthostatic Tachycardia Syndrome, a prevalent form of dysautonomia in young people, found that an extraordinary 53% of participants met the diagnostic criteria for EDS-HT [19]. Furthermore, when hypermobility was measured in individuals diagnosed with Chronic Fatigue Syndrome, a condition with a longstanding, established association with orthostatic intolerance [20], researchers found that 25% of Chronic Fatigue syndrome sufferers had generalized hypermobility [21]. This phenomena, though, is likely of multifactorial consequence, as dysautonomia, chronic pain, and sleep apnea secondary to ventral brainstem compression can result in poor sleep architecture and chronic fatigue [22][23][24].

Ehlers-Danlos Syndrome Hypermobility Type as a Systemic Condition

 The autonomic nervous system problems associated with hypermobility, alike various functional somatic disorders, are present in practically all major body systems. In the realm of gastroenterology, for instance, dysautonomia in the form of vagus nerve damage (which may result from craniocervical instability) can result in delayed gastric emptying [25] and affect bowel contractibility, causing nausea and the so called “irritable bowl syndrome” [26]. Moreover, the underlying collagen abnormality of EDS-HT itself is systemic. Insufficient collagen may reduce sphincter tone and increase distensibility of the gut wall (which is likely to influence the function of surrounding cellular mechano-receptors), resulting in decreased gastrointestinal motility, gastroesophageal reflux (GERD) and/or irritable bowel syndrome (IBS). In fact, over 50% of EDS-HT individuals have GERD and/or IBS [4][27]. When hypermobility was tested in patients diagnosed with functional gastrointestinal disorders (which include IBS, functional dyspepsia, and functional constipation), an astonishing 49% were found to have joint hypermobility and many of those patients went on to receive an official diagnosis of EDS-HT [10].

When it comes to neurological manifestations, headaches are among the most common complaint in the EDS-HT population [4]. As a consequence of occipitoatlantoaxial hypermobility, drooping of the cerebellar tonsils and obstruction of the cerebrospinal flow at the craniocervical junction can result in intracranial pressure [8][28]. In addition, rapid fluctuations in blood pressure and inadequate cerebral perfusion on upright posture caused by dysautonomia may lead to migraines [29][30]. People with lax joints are also predisposed to cervicogenic, tension, and new daily persistent headaches arising from musculoskeletal dysfunction in the temporal mandibular joints and the upper three cervical segments of the spine [4][31].

As a consequence of ligamentous laxity, rheumatological complications among the EDS-HT population are commonplace. Chronic pain in patients with joint hypermobility stems from a predisposition to injury from daily minor trauma to the joints and ligaments [32]. Unstable joints may also lead to frequent dislocations, subluxations, sprains, and stretch injury to the nerves traversing hypermobile joints, further increasing the risk of developing chronic pain states such as arthralgia, repetitive strain injuries, and complex regional pain syndrome [4][9][33]. There is also a high incidence of muscular pain attributable to myofacial spasms. Tender points consistent with fibromyalgia are often palpable, especially in the paravertebral musculature [34]. In frequency studies, the prevalence of fibromyalgia in EDS-HT participants was established to be 30% [35] and the prevalence of EDS-HT among fibromyalgia subjects was found to be 27.3% [6]. One theory for the origin of pain in fibromyalgia ascribes it to excessive muscle stress, which may increase the excitability of nociceptive ends of the muscle [36][37]. Joint instability in hyperlax individuals may result in sustained muscle stress (an overcompensation mechanism for loose and injured joints) and over stimulation of nociceptive nerve endings (which are poorly supported by defective collagen fibrils) [38]. An alternative, although equivocal, theory has suggested that biomechanical disturbances in the cervical spine may play a role in the pathogenesis of fibromyalgia. In a controlled study of 161 cases of traumatic injury to the cervical spine (primarily “whiplash”), fibromyalgia was diagnosed in 21.6% of those with neck injury verses 1.7% control subjects with lower extremity fractures [39], bringing us back to the notion that craniocervical instability, and the subsequent neurological damage, may be the underlying process in the development of functional somatic syndromes.

Further Implications of Discussed Findings in the Diagnosis and Management of Functional Somatic Syndromes

 These observations suggest that a careful examination for hypermobility and connective tissue abnormalities should be an integral part of functional diagnostic medicine. Pathological deformation of the brainstem and stretch injury to neural axons due to an underlying congenital ligamentous laxity, as discussed here in the case of EDS-HT, or acquired ligamentous instability, such as whiplash, may indeed be the missing link in the pathogenesis of various functional somatic syndromes.

In a literature review of functional somatic syndromes, Wessely and colleges concluded, “a substantial overlap exists between the individual syndromes and that the similarities between them outweigh the differences” and “patients with one syndrome frequently meet diagnostic criteria for another” [40]. For this subset of patients, generalized joint hypermobility may represent the common milieu for functional somatic syndromes with ubiquitous manifestations. The predispositions EDS-HT imposes would further explain why many of these patients are affected profoundly by emotional arousal (as it’s mediated by the autonomic nervous system) and muscle tension, and why patients with different syndromes share non-symptom characteristics such as sex (as joint laxity is more pronounced in females) and develops at a relatively young age (as EDS-HT is heritable, and hence, lifelong) [4][41].

Accordingly, articular hypermobility can be assessed by using the 9-point Beighton score, which assigns one point for each side of the body on which the patient can (1) passively dorsiflex the 5th finger >90 degrees with the forearm flat on the table, (2) passively appose the thumb to the flexor aspect of the forearm, (3) hyperextend the elbow beyond 10 degrees, and (4) hyperextend the knee beyond 10 degrees and one point for forward flexion of the trunk with the legs straight so that the palms rest flat on the floor. If a patient receives a Beighton score of 4 or more, a referral to a geneticist or rheumatologist for further evaluation is recommended [42]. If cranial settling and a reduction in the clivo-axial angle is suspected, and upright MRI may additionally aid in diagnosis [8].

With this hitherto unobserved connection comes a new line of treatment for a subdivision of patients with functional somatic disorders. Physical therapy, in the form of exercises that strengthen joint-supporting muscles, and bracing may provide joint stability and help minimize articular injury [4]. Elimination of brainstem deformation by straightening and stabilizing the craniocervical junction (via fusion surgery) may also improve pain, neural functioning, and quality of life [8].

Conclusion: A Paradigm Shift in the Etiology of Functional Somatic Syndromes

Disorders that lack “objective markers” are usually considered to be functional, not “organic.” This implies to some that the symptoms in functional somatic syndromes are physiological manifestations of psychosocial factors, a view that enforces an insular attitude to the etiology of disease rather than an interactive holistic approach. Consequently, when investigative results are negative, management is commonly limited to reassurance about the (apparent) absence of disease and occasionally psychiatric therapy. These treatments, however, are unpopular with patients, have low coherence rates, and seldom provide long-term therapeutic relief [41][43].

An alternative explanation is that the organic abnormalities are undetectable through cursory diagnostic testing as the underlying mechanism may be histopathological in origin, or, as seen in the case of upright MRIs on EDS-HT patients, the body may not be in the problematic position when testing takes place. The overly common cognitive error overshadowing high-tech medicine –that emotional issues are the underpinnings of illnesses lacking objectivity– must be overcome. While it is sufficient to say that, like virtually all known illnesses, psychosocial factors do play some role in functional somatic syndromes [1], an over emphasis on medically unexplained symptoms as being psychological bases causal reasoning on a negative. An absence of evidence does not denote an absence of organic disease –it simply means that the conditions that were tested for are not present in the individual and there is an infinite realm of alternative possibilities, such as EDS-HT.

Functional somatic disorders can only be successfully managed in the healthcare setting once a comprehensive understanding of their nature and treatment is acquired. The recognition of Ehlers-Danlos Syndrome Hypermobility type, and other disorders involving ligamentous laxity, as a possible physiological mechanism underlying various medically unexplained symptoms will help bridge the gap in physicians’ minds between described physical complaints and apparent negative test results in a subset of patients. Henceforth, in the wake of this disclosed correlation, further investigation into the role hypermobility and connective tissue abnormalities play in the etiology of these conditions, alongside a redefinition and modification of the diagnostic criteria of functional somatic syndromes, is essential to study of medically unexplained phenomena.

via Ehlers-Danlos Syndrome Hypermobility Type: A Genetic Predisposition to the Development of Various Functional Somatic Syndromes | The Pain Relief Foundation.

You Don’t Always Have to Feel Grateful That it Isn’t Worse

So, I’m going to just say that things have been pretty bad for me right now. I have so damn many health care, financial, and emotional needs that are not being met, and after three and a half years of waiting my turn, I need something better than this, I need more, I need to live and have hope and at least try to get treatment for some of these problems. But just because I need something doesn’t mean it is possible. Money is an asshole that way. All ways, really.

I am still grieving the loss of a dear friend, and I talk to her at night when it’s quiet like this, and I think she hears me, but I don’t even know how to put into words how much it hurts to obliviously type her name on facebook like I’m going to see her there posting updates, and then to realize that no one gets to hear her sunny voice again. Who knows why it takes so long for the shock to wear off and the sadness that won’t lift to settle in. It’s like my bones are crying now, and I feel her absence physically.

All these things coupled with isolation and excessive pain levels with secondary depression, plus a nasty chest cold have made me a slightly more bitter girl, and I apologize for that, but then again, I kind of don’t want to apologize. Though it’s embarrassing to go off on an angry rant and publish it and re-read it the next day and not recognize who wrote the words, I did write it, and I did mean every word when I was writing and that tells me that someone else out there can maybe feel less alone if I continue to allow myself to occasionally write the lows, the times I don’t cope well, that my chronic illness brings.

The reason I’m suffering this week is simple. I went out, I lived a life for a week with two social calls an hour away from my house, and the consequence for my actions are a dire flare up and infections, even though I practiced preemptive rest, stayed hydrated, slept beforehand and loaded up on vitamins. That’s what the fuss is about, for any non-spoonies reading this. That’s why I’m “obsessed” with my illness and I never seem to win. You can do everything right and chronic illness is still a merciless, evil, cold hearted f*ck who will laugh at your plans, your support network, your therapy progress, your talents, and even your basic needs, and which will deny you access to them all from time to time.

I’m not trying to paint a grim picture, or a “poor me” kind of portrait, I’m trying to say that all spoonies, no matter how small you may see your contributions to be, all spoonies are important. You are important and you matter.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          atleastitisntworse

I guess I’m leaning towards the idea that if I don’t censor myself, I will probably help more people feel accepted and welcomed into the chronic illness community. We don’t have to have rainbows shooting out of our asses all the time to be valued and welcome members of the online spoonie community. I like encouraging people with stories about good days and things I am thankful for, and I won’t give that up, but I also don’t want to be missing a whole group of spoonies who feel pretty worthless and unaccepted by the rest of the chronic world.

Everyone needs a place to belong, even the undiagnosed, the doesn’t-quite-fit-the-diagnosis patients who are still in limbo, they need our support more than anyone. That is a stage in my journey where I was bitter every single day for at least a year.

So I’m going to perhaps post more vehement pieces than usual and not hold myself back. I will stop telling myself I can’t write on my worst days unless I have a good attitude while I do it,because that’s not therapeutic for me, for one thing. I do factor in here too, somewhere, I think.

The reality of being ill is that you will have some good days, some of us get more or less of those depending on our situation, some of us don’t have good days physically, but almost all spoonies eventually get to the point where you can have a series of bad days that you can handle emotionally, and those bad days will make you proud of yourself later on without too much soul searching involved. You endured and even conquered your illness for a while. You got through it without snapping and that’s to be commended. But it’s not to be expected from you. Positivity during hardship is not the only “right way” to cope. Because look what happens next; you overdo it or the weather changes or you cough funny, you have a medication reaction, or you develop a new symptom or allergy and things get complicated.

“Didn’t I just get through another hard week like this?” you think to yourself. It drags on, but you get through it, kind of numb and just making it day by day. And then not-so-wonderfully, another health setback; you have to take care of someone else who is ill, you get asked to another social function you can’t get out of, you have to attend three doctor’s appointments in one week, or whatever else it is, but it adds onto the pile you had not quite dug your way out of from last week yet. But you get through that week, and the next one too, though on the bad days you’re just counting the hours, you can’t even take it day by day things get so overwhelming. Months go by like this, a cycle of debilitation and not-quite-recovery only to be met with more medical problems, more stress, more debt, more isolation and eventually the bitterness that you thought maybe you had “gotten past” can sneak back up on you.

I’m not saying you are required by spoonie law or something ridiculous to feel all of these things in these specific ways for these reasons. I’m just setting the stage for those who are being hard on themselves for not coping as well as they’d like, and for people who may not understand what suffering from an invisible illness can be like when you aren’t improving.

No matter how you cope, or how well you “keep calm and carry on”, you still deserve to be commended. You’ve gone through a lot, and you should feel safe and understood when you are being honest about your pain. Honesty is not negativity.

Wishing everyone extra spoons, low pain days, and super soft fuzzy blankets that don’t hurt you while you’re sleeping. ❤

I Am Not Your Inspiration: The Problem With Inspiration Porn

Disability doesn’t make you exceptional, but questioning what you think you know about it does.” – Stella Young

The danger of being viewed through the lense of the “inspiring cripple” archetype is that it was created by ableists as a tool used to invalidate those who are struggling. It means that people expect things from you that you weren’t even capable of before disability, muchless after. It’s such an unhealthy way of approaching people who are ill, as if we are not trying hard enough unless we can plaster a fake smile on our face and say we’re doing well, when actually we are struggling in ways that only a small percentage of the population can understand. The notion of the inspiring cripple does not leave room for the uncensored reality of the chronic illness spectrum.

If you are able-bodied and do not experience mental illness, I am not your inspiration. If something I say or write is helpful to another spoonie, then that is why I am here and it makes me happy to be helpful whenever possible, but I don’t want ableist individuals thinking that my refusal to cry in a corner every day makes me somehow better at being sick than someone who can’t stop sobbing and wishing for death. I am not any better.

I am not “trying harder” than anyone else and I will not be used to shame someone who feels like they can’t handle their condition. I still feel like I can’t handle being chronically ill on a regular basis.

I am not your feel-good story. I am a deeply flawed human being with constant, unrelenting chronic pain and many other debilitating conditions and symptoms, too. My choices are give up and die, or keep trying to find a reason to wake up and to put food in my mouth once a day. Sometimes that is a genuine struggle. Sometimes I do not get out of bed, and I do not put food in my body, and that does not make me pathetic or weak, it makes me sick. I have good days and bad days and I have given myself permission to have both.

I am so very tired of inspiration porn, aimed at the general public and unapologetically using those who are physically disabled, suffer chronic pain, or live with mental illness and/or neurodivergence. Inspiration porn wants you to say “well, it could be worse, I could be that poor person in a wheelchair or that teenager with a cane, therefore I’m not allowed to feel shitty, ever.”

Bull. Shit.

I am happy to answer any and all genuine questions about my life, my coping strategy, my illnesses, or anything else that someone is interested in, provided that the person asking is not just going to use my answers against me later. I am not interested in answering questions that are actually just thinly-veiled judgemental commentary on how I deal with my pain and other symptoms. I wish that my abled friends could just acknowledge that my reality is not something you can comprehend if you don’t live every second of every day in pain, knowing that the pain is life-long or progressive.

If you are not sick in a long-term sense, please try to understand why you cannot compare my life-altering, completely debilitating daily pain to the last time you had the flu, or the time you broke your arm, or even the car accident you were in, unless one of those things resulted in a long-term illness, disability, or chronic pain disorder. Flus, broken bones, and car accidents may be unpleasant, but after some healing your life resumed as planned, so you have no idea what it is like to live in my body, the body that has caused me to slowly, against my will, forget all my dreams and plans for the future. Please realize that every pain is experienced differently and is unique to each individual who is suffering. Comparison of one disabled person to another person, disabled or not, is never okay. We are not brave for the things healthy people think we are brave for. We are not brave for simply existing, we are not brave for going about our day as normally as we possibly can. Attitude does not differentiate a “good” cripple from a “bad” cripple. Inspiration porn is pure victim blaming, and society has unfortunately picked up this nasty habit.

Ableist propaganda would have us think that if we are not using our illness to transform ourselves into an inspiration, we are just wasting space and burdening those around us. Do not buy into that trash! I am sorry for each and every person who has ever felt like their pain or illness is the punchline to an ableist joke. Those of us who are ill are allowed to make jokes, we are allowed to seek out the humor in our situation, and it is despicable that people would use that coping mechanism against us. Yes, I use sarcasm to cope. Yes, I use humor to cope. No, that does not mean I’m cured or experiencing less pain or “getting better at dealing with it” as so many have said to me. It means that if I don’t laugh about this, it will crush me.

My medical decisions are not up for discussion unless you are another spoonie, and even then, I retain the freedom to completely ignore any and all medical advice that doesn’t come from my doctors. I even retain the right to ignore medical advice from doctors that does not make sense or goes against my beliefs.

I certainly won’t be basing my medical decisions off of an abled friend’s (ex-friend’s) suggestion because they feel like they have “observed my pain” (read: been annoyed by how much I talk about it) for long enough that they are unreasonably comfortable making sweeping declarations about my use of medication, or with stating that I “pity myself” (read: retreat from overwhelming and triggering situations so I can take care of myself appropriately) sometimes. Fuck yeah, I do pity myself sometimes. I refuse to apologize for that.

The abled seem to possess an unlimited capacity to confuse my online and in-person honesty and unwillingness to sugar-coat reality with what they view as pity-seeking behavior and weakness. Saying I have an incurable illness is not pitying myself, it is the truth. I am allowed to speak the truth, my truth, and I am allowed to remark at the depressing reality of chronic pain. Ableism makes accepting the reality of our illness that much more difficult. If I said I never have moments of self-pity I would be lying, and that helps no one. I have every right to be upset about my conditions and to grieve over the losses in my life as a result. And so do other spoonies at any point in their journey.

It is just grotesque that there are people self-righteously using those of us struggling with mental illness, cancer, or chronic invisible illness (to name a few) as their motivation, or to shame others with similar struggles. I don’t want my accomplishments to ever be used to make someone feel inadequate.

The myths that are perpetuated by inspiration porn make it harder to be honest about what we as spoonies experience, which is why it’s time to start calling ableism out wherever and whenever we see it. Just because one person with MS can work a full time job does not mean that another MS patient is faking their inability to work. It’s such a simple thing, to validate someone, yet we don’t do it enough.

You wouldn’t worry about being polite when calling out racism or homophobia, so why would you worry about offending people when you call out their discriminatory attitudes towards chronic illness, disability, neurodivergence, mental illness, and chronic pain?

Why Untreated Chronic Pain is a Medical Emergency | EDS Info (Ehlers-Danlos Syndrome)

the above image is from Chronic Illness Cat and the below article is taken from EDS Info, a wonderfully informative blog for any chronic pain sufferer, which you should all go check out and bookmark and return to often.

Why Untreated Chronic Pain is a Medical Emergency

Alex DeLuca, M.D., FASAM, MPH;Written testimony submitted to the Senate Subcommittee on Crime and Drugs regarding the “Gen Rx: Abuse of Prescription and OTC Drugs” hearing; 2008–03–08.

UNTREATED CHRONIC PAIN IS ACUTE PAIN

The physiological changes associated with acute pain, and their intimate neurological relationship with brain centers controlling emotion, and the evolutionary purpose of these normal bodily responses, are classically understood as the “Fight or Flight” reaction,

When these adaptive physiologic responses outlive their usefulness the fight or flight response becomes pathological, leading to chronic cardiovascular stress, hyperglycemia which both predisposes to and worsens diabetes, splanchnic vasoconstriction leading to impaired digestive function and potentially to catastrophic consequences such as mesenteric insufficiency. 

Unrelieved pain can be accurately thought of as the “universal complicator” which worsens all co-existing medical or psychiatric problems through the stress mechanisms reviewed above, and by inducing cognitive and behavioral changes in the sufferer that can interfere with obtaining needed medical care

Dr. Daniel Carr, director of the New England Medical Center, put it this way:

Chronic pain is like water damage to a house – if it goes on long enough, the house collapses,” [sighs Dr. Carr] “By the time most patients make their way to a pain clinic, it’s very late. What the majority of doctors see in a chronic-pain patient is an overwhelming, off-putting ruin: a ruined body and a ruined life.”

Dr. Carr is exactly right, and the relentless presence of pain has more than immediate effects. The duration of pain, especially when never interrupted by truly pain-free times, creates a cumulative impact on our lives.

CONSEQUENCES OF UNTREATED AND INADEQUATELY-TREATED PAIN

we must also consider often profound decrements in family and occupational functioning, and iatrogenic morbidity consequent to the very common mis-identification of pain patient as drug seeker.

The overall deleterious effect of chronic pain on an individual’s existence and outlook is so overwhelming that it cannot be overstated. The risk of death by suicide is more than doubled in chronic pain patients, relative to national rates.

What happens to patients denied needed pharmacological pain relief is well documented. For example, morbidity and mortality resulting from the high incidence of moderate to severe postoperative pain continues to be a major problem despite an array of available advanced analgesic technology

Patients who received less than 10 mg of parenteral morphine sulfate equivalents per day were more likely to develop delirium than patients who received more analgesia (RR 5.4, 95% CI 2.4–12.3)… Avoiding opioids or using very low doses of opioids increased the risk of delirium. Cognitively intact patients with undertreated pain were nine times more likely to develop delirium than patients whose pain was adequately treated. Undertreated pain and inadequate analgesia appear to be risk factors for delirium in frail older adults. [7]

PAIN SUFFERERS ARE MEDICALLY DISCRIMINATED AGAINST

Chronic pain patients are routinely treated as a special class of patient, often with severely restricted liberties – prevented from consulting multiple physicians and using multiple pharmacies as they might please, for example, and in many cases have little say in what treatment modalities or which medications will be used. These are basic liberties unquestioned in a free society for every other class of sufferer

chronic pain patients are often seen by medical professionals primarily as prescription or medication problems, rather than as whole individuals who very often present an array of complex comorbid medical, psychological, and social problems

Instead these complex general medical patients are ‘cared for’ as if their primary and only medical problem was taking prescribed analgesic medication.

This attitude explains why most so-called Pain Treatment Centers have reshaped themselves into Addiction Treatment Centers.  Even with a documented cause for pain, the primary goal of these programs, whether stated or not, is to coerce patients to stop taking their pain medications.

This may work for a small number of pain patients who may not really need opioids in the first place, but is a “cruel and unusual” punishment for those of us with serious, documented, pain-causing illnesses.

The published success rate of these programs has nothing to do with pain – it is measured by how many people leave the program taking no pain medication, but there is no data about the aftermath, how many manage to stay off their medication long-term.

their obvious primary medical need is for medical stabilization, not knee-jerk detoxification

CHRONIC PAIN IS A LEGITIMATE MEDICAL DISEASE

Chronic pain is probably the most disabling, and most preventable, sequelae to untreated, and inadequately treated, severe pain.

Following a painful trauma or disease, chronicity of pain may develop in the absence of effective relief. A continuous flow of pain signals into the pain mediating pathways of the dorsal horn of the spinal cord alters those pathways through physiological processes known as central sensitization, and neuroplasticity. The end result is the disease of chronic pain in which a damaged nervous system becomes the pain source generator separated from whatever the initial pain source was.

Aggressive treatment of severe pain, capable of protecting these critical spinal pain tracts, is the standard care recommended in order to achieve satisfactory relief and prevention of intractable chronic pain

Medications represent the mainstay therapeutic approach to patients with acute or chronic pain syndromes… aimed at controlling the mechanisms of nociception, [the] complex biochemical activity [occurring] along and within the pain pathways of the peripheral and central nervous system (CNS)… Aggressive treatment of severe pain is recommended in order to achieve satisfactory relief and prevention of intractable chronic pain.

we are seeing ominous scientific evidence in modern imaging studies of a maladaptive and abnormal persistence of brain activity associated with loss of brain mass in the chronic pain population

Atrophy is most advanced in the areas of the brain that process pain and emotions. In a 2006 news article, a researcher into the pathophysiological effects of chronic pain on brain anatomy and cognitive/emotional functioning, explained:

This constant firing of neurons in these regions of the brain could cause permanent damage, Chialvo said. “We know when neurons fire too much they may change their connections with other neurons or even die because they can’t sustain high activity for so long,” he explained

It is well known that chronic pain can result in anxiety, depression and reduced quality of life

Recent evidence indicates that chronic pain is associated with a specific cognitive deficit,which may impact everyday behavior especially in risky, emotionally laden, situations.

The areas involved include the prefrontal cortex and the thalamus, the part of the brain especially involved with cognition and emotions

The magnitude of this decrease is equivalent to the gray matter volume lost in 10–20 years of normal aging. The decreased volume was related to pain duration, indicating a 1.3 cm3 loss of gray matter for every year of chronic pain

clinicians have used opioid preparations to good analgesic effect since recorded history.

No newer medications will ever be as thoroughly proven safe as opioids, which have been used and studied for generations.  We know exactly what side effects there are, and they are fewer than most new drugs, with less than a 5% chance of becoming addicted if taken for pain.

In fields of medicine involving controlled substances, especially addiction medicine and pain medicine, the doctor-patient relationship has become grossly distorted.

doctors-in-good-standing who, faced with a patient in pain and therefore at risk of triggering an investigation, modify their treatment in an attempt to avoid regulatory attention

Examples include a blanket refusal to prescribe controlled substances even when clearly indicated, or selecting less effective and more toxic non-controlled medications when a trial of opioid analgesics would be in the best interests of a particular patient. At the very least, some degree of suspicion and mistrust will surely arise in any medical relationship involving controlled substances.

the quality of care most physicians provide is fairly close to the medical standard of care which is what the textbooks say one should do, and which is generally in line with core medical ethical obligations

For example, modern pain management textbooks universally recommend ‘titration to effect’ (simplistically: gradually increasing the opioid dose until the pain is relieved or until untreatable side effects prevent further dosage increase) as the procedure by which one properly treats chronic pain with opioid medications. Yet the overwhelmingly physicians in America do not practice titration to effect, or anything even vaguely resembling it, for fear of becoming ‘high dose prescriber’ targets of federal or state law enforcement.

It is a foundation of medicine back to ancient times that a primary obligation of a physician is to relieve suffering. A physician also has a fiduciary duty to act in the best interests of the individual patient at all times, and that the interests of the patient are to be held above all others, including those of family or the state.[23] These ethical obligations incumbent on all individual physicians extend to state licensing and regulatory boards which are composed of physicians monitoring and regulating themselves. [24]

A number of barriers to effective pain relief have been identified and include:

  1. The failure of clinicians to identify pain relief as a priority in patient care;
  2. Fear of regulatory scrutiny of prescribing practices for opioid analgesics;
  3. The persistence of irrational beliefs and unsubstantiated fears about addiction, tolerance, dependence, and adverse side effects of opioid analgesics.

A rift has developed between the usual custom and practice standard of care (the medical community norm – what most reputable physicians do) and the reasonable physician standard of care (what the textbooks say to do – the medical standard of care), and this raises very serious and difficult dilemma for both individual physicians and medical board

Research into pathophysiology and natural history of chronic pain have dramatically altered our understanding of what chronic pain is, what causes it, and the changes in spinal cord and brain structure and function that mediate the disease process of chronic pain, which is generally progressive and neurodegenerative

This understanding explains many clinical observations in chronic pain patients, such as phantom limb syndrome, that the pain spreads to new areas of the body not involved in the initiating injury, and that it generally worsens if not aggressively treated. The progressive, neurodegenerational nature of chronic pain was recently shown in several imaging studies showing significant losses of neocortical grey matter in the prefrontal lobes and thalamus

Regarding the standard of care for pain management:

1) Delaying aggressive opioid therapy in favor of trying everything else first is not rational based on a modern, scientific understanding of the pathophysiology of chronic pain, and is therefore not the standard of care. Delaying opioid therapy could result in the disease of chronic pain.

2) Opioid titration to analgesic effect represents near ideal treatment for persistent pain, providing both quick relief of acute suffering and possible prevention of neurological damage known to underlie chronic pain.

Pain Relief Network(PRN); 2008–02–28; Revised: 2008–07–08. Typo’s and minor reformatting: 2014-04-14.

via Why Untreated Chronic Pain is a Medical Emergency | EDS Info (Ehlers-Danlos Syndrome).

hard to see a way out

Things Have Been Moving Really Fast Around Me

But I have (mostly) managed to keep up, which is no small thing to me at all! With all the pushing myself I’ve been doing, I’m ready for the much needed rest I will be taking starting today.

This week has been action-packed for me, although for a healthy person it certainly doesn’t sound like much. I got to spend a whole day out of the house at my mom’s wedding reception, and then made it all the way to the teaching hospital and back two days later with her help, and then on a very short grocery shopping trip later that night with my boyfriend (where I was so out of it that I bought pretty much only chocolate, hahahaha). Two days later we made smoked pulled pork, homemade macaroni salad, and dinner rolls from scratch (all incredibly cheap but incredibly perfect for sharing with a crowd, which we have gotten smarter about now that we are super broke!). We took the food all the way from our house to the part of Oregon I grew up in, which is about an hour drive, and I did not collapse or fall asleep somewhere during that trip last night, but I had to sit out the games because of how unstable my joints are and how bad my head and neck are already hurting. I have been using the preemptive rest method to gain some strength ahead of events I know are going to sap me of energy or take a great deal of time and probably a bout of extra pain to recover from. It’s difficult to recover from that much activity while I am still steadily decreasing my dosage of Lyrica (down to 1x 75mg pill per 36 hours!!!), but I will recover. It will take a while, but I had fun this week and saw my mom and even my extended family, so it’s worth it!

Resting consciously, including not overdoing it mentally and avoiding sensory overload, has really helped me this month, but it has meant that I cannot do nearly as many things as I would usually force my body to do, especially when it comes to gardening and housework.

The next step which I will start along with the rest is adding more stretching and walking for five to ten minutes at a time back into my schedule, but seriously every part of my legs hurt right now, my feet feel bruised from standing yesterday, and my knees are throbbing, none of my joints want to stay in their sockets and none of my muscles want to help them out.

I had a pretty extreme limb tremor last night in my right leg that lasted for almost twenty minutes, and that twenty minutes of having a rapidly spasming/twitching/bouncing leg has left even my fingers exhausted and all my joints stiff from trying to force my muscles to relax and stop freaking out, which ironically made me tighten up even more throughout my entire body. The tremors aren’t really painful or a problem in and of themselves, they are just not my favorite to deal with in public, and it does make my leg prone to giving out on me if I have to walk while it’s happening.

My real problem is my mouth, I have severely swollen gums and an impacted molar on my right side as well. I have an unusually small mouth and have no idea how I never needed braces growing up, but my teeth have always been very straight with no gaps and only some flouride damage to deal with. In the last several years, things are different, and the overcrowding is causing problems left and right, and could even be contributing to my TMJ disorder, migraines, and neck pain. I don’t even have enough room for all my normal molars to come in, so I have been dealing with the pain of teething for as long as I can remember. I not only need my wisdom teeth removed (holy hell, I need them gone so badly), but I also need some of my molars to be taken too, especially this very swollen and impacted one that has finally poked most of the way through my gum but is now pushing the molars in front of it sideways. Getting all those teeth out may even help with the severity of my jaw clenching issues, which when tested at PT have ranged between 7x and 30x more tense than an average person’s jaw, and that was while using every last relaxation technique and cognitive behavioral therapy.

The challenge will be finding someone who is skilled at dealing with patients with severe TMJ, and then I magically have to be able to afford it. The jaw pain has been getting worse and worse, and to have an impacted or worse molar is excruciating, especially that close to all those sensitive nerves in the back of my jaw. I’m used to my face hurting pretty awfully because of Trigeminal Neuralgia, so I am able to tough it out most of the time but sometimes I just want to rip my teeth out myself they hurt so badly. Now is one of those times. It’s even affecting my ear on that side.

To make my time eating even more fun, because TMJ disorder and dislocations and messed up teeth weren’t enough, in the last month or so I have developed some awful and nearly constant food allergy reactions. I have sores on my tongue and a sore throat that never fully goes away, and my lymph nodes are angry at me after every meal. I only eat once a day, and I have cut out a bunch of foods including all acidic fruits (goodbye homemade marinara sauce, goodbye morning smoothie, you were nice while you lasted) and anything with vinegar (goodbye kombucha and all my favorite homemade salad dressings), beer/cider, yogurt and sour cream; seriously so many things are gone from my diet, that’s not even close to the list!!! And even cutting all this stuff out, I’m still having issues every day with these horrible sores on my tongue and throat. I obviously need an allergist as well as a dentist at this point, but I can’t afford it with my insurance deductible not being met yet.

Basically my mouth is full of fire and I have no appetite and I am having trouble eating even when I want to, so maybe I will finally be losing some weight until I can see a few doctors? That’s the most optimistic thing I can think of right now, because seriously, this sucks. I need medical help. I have needed it several times in the last month and not been able to go because I simply owe too much money to everyone after three years of not being able to pay my bills. There is no hope for money coming in, and I am just in too much pain to brainstorm ideas or set up a kickstarter or re-apply for disability again. Blegh, so instead of thinking about any of it, I’m gonna go back to resting and reading. I am way too overwhelmed, and I know part of that is just sheer exhaustion and needing to recover from the constant setbacks of over-activity every few days for the last week and a half. I will regroup and hopefully have a plan of attack… although right now I’m very much stumped.

Days have been slipping past at alarming speed, and I’m constantly confused about what day/time it is and even where I am, but I’m learning to let go, or at least I’m trying to learn. Right now all my body needs is for me to respect it, listen to it, and try to figure out what the hell I’m allergic to on my own. Worrying about my memory is just going to stress me out even more.

Stock-Image-Separator-GraphicsFairy11

On a lighter note, my psychiatrist says I am making progress lately, and that fills me with hope and even a little pride and self-love. She also complimented me on my skin and hair, which I really have been taking much better care of now that I’m using a homemade grape seed oil, baking soda, dead sea salt and epsom salt scrub with calendula petals from my garden. Grape seed oil is the queen of all lightweight skin moisturizers for sensitive and/or oily skin, and no weird reaction after I put it on like when I use any store bought lotion, no matter how “organic” or skin-friendly. I get a 16 oz bottle for $7 using the Amazon subscribe and save program, I really like this one from NOW Foods:

grape seed oil love

For my hair I made up a dry shampoo in about 30 seconds from equal parts bentonite green clay, indian red clay, and arrowroot powder, and it helps keep my ridiculously long locks from tangling, or looking limp and lifeless between showers. My scalp seems to really appreciate it, too. I love having both recipes on hand, but it would still be nice if I could shower more than once every three or four days. Working on that, though. I think if I just get a big fluffy bathrobe and put it on as soon as I get out of the tub and go lie down for fifteen minutes, I would probably be dry by then, and maybe saving the energy on drying off would allow me to get clean more often. Oh, spoonie problems. I’m past the point of pretending now. I’ve realized it’s entirely necessary that I make some changes to my lifestyle in order to retain what independance I have. Ignoring things that would make my life easier is no longer an option. Now it’s just a matter of finding enough money to make the modifications I need, and figuring out what actually helps me live a better life.

All I have kept down today is coffee, water, and crystallized ginger, and barely on all three. Even the ginger can’t save me from this nausea, pain, and extreme fatigue, coupled with dizziness and eye issues. See, I tried to be positive and distract myself from the reality of chronic illness, but then I took it right back to how bad I feel because it’s literally all I can focus on right now. I’m just getting through one hour at a time right now until my body catches up. I know others can sympathize with that sentiment, but I would never wish it on anyone. Nobody should have to understand, because no one should have to deal with this all the time.

#spooniestrong

Chronic Lessons: Then and Now

When I first came down with an invisible illness shortly after being in a car struck by a semi-truck, things looked pretty bleak.

My thought process after six months of dealing with the constant doctor visits and physical therapy, with the pain, fatigue, and fevers, was that either me or my illness was gonna go. Both of us were not gonna share this body.

Fix it or kill me. That was my motto. I could not conceive of a world in which I could not work, but in which I still had value. Value despite a dollar amount I was bringing in. No part of me wanted to accept that I would have to learn to live with this, or that my life not only had to be paused, but also that I may never be able to participate in the same ways as before no matter what I tried to cure myself. We hadn’t even started talking about disease processes or autoimmune or anything at all other than injury from the car accident, but I was frustrated that I just kept getting worse the more work I did to heal.

On the days in between flare ups, before I knew what a flare up even was, I insisted to myself that I was cured, and I was horribly let down and unprepared for every single episode or new symptom that manifested.

When people told me it would be easier and better to approach my illness from a place of positivity, I was furious, because they were making the assumption that I wanted to live with pain in every part of my body, and I really did not, at least not at that point. I had just recently been perfectly healthy, my body and brain up to any challenge set in front of me. How could I adjust to being so drastically limited and in so much pain I couldn’t even drive or work a full shift? It truly seemed impossible.

It also felt like when people tried to encourage me to make peace with all the unknowns and all the debilitating symptoms they were implying that mind over matter would cure me, or at least allow me to live a ‘normal’ or fulfilling life. Again, a life without a job and my recently hard-won independence seemed so completely unfulfilling. I went straight into defensive language, outbursts, and isolation at the first suggestion that somehow I was expected to be strong enough to cope with physical weakness, fatigue, pain, sensitivities to sound, light, chemicals, smells, and touch, energy crashes, cognitive dysfunction, lack of ability to work or drive, and the accompanying guilt and grief that go with losing your place in life right after you gain autonomy over it for the first time. I could find so many more reasons to be upset than to be optimistic. It felt like everything I loved had been ripped away, like all my choices had been taken from me. Of course that isn’t true, but for newly diagnosed or undiagnosed pain patients, especially at a young age, it’s entirely common to feel like it is the end of your life and nothing good will ever be possible again unless it comes packaged as a complete and total cure. The temptation is to retreat and hope that you can pick back up again where you left off when you feel better, and that’s acceptable with temporary injuries and illnesses, but with chronic illness there are often no “feel better” days, and there is only so much hiding from life you can do before it becomes apparent that life is going to continue, albeit differently.

I still have moments where I think I can’t handle it, and weeks where everything spins around me and I hope hope hope I will still be okay when it all lands again. I still fear for my future, I fear for my relationships, and feel insecure about my lowered libido, frequent whining, fitness level, and inability to contribute financially. Those things are part of being human though, if I didn’t experience some guilt and upset over them, I wouldn’t be me.

Amazingly, I have learned a lot through illness. I have learned to be patient no matter how uncomfortable or unhappy I am. I have learned to take care of and prioritize myself even when it feels selfish and lazy. I have learned that internalized ableism is what makes me feel that way, and that ableism does not do me any good, especially not when it has become a part of my own thought process. I have learned the importance of asking for help, though I haven’t quite mastered actually asking for it. So much has sunk in; things that I was resistant to when fibromyalgia and chronic fatigue syndrome first reared their heads. I wonder if I am even the same person anymore, but not in a totally negative way.

I have learned above all that there is not as much wrong with me as there is with a society that teaches people to base worth off of income earned, sexual intensity, physical ability, and even intelligence. There is nothing wrong with having an excess of one or even all of those things. But there is nothing inherently better about possessing those things, either. Except that it certainly makes your way in life a lot easier to have money, health, sex appeal, and unlimited brainpower. Maybe that’s what I like more about myself now; it’s not that easy anymore, I can’t just draw on one of those things and call myself a better person for having it. I can’t reassure myself with meaningless attributes, and that is its own kind of blessing. I have to concern myself instead with things like courage, persistence, kindness, and even that elusive thing we call happiness. Amidst all the pain, being ill has given me something wonderful; it has allowed me to seek out those true, meaningful, beautiful traits in others, regardless of what value society has assigned to someone.

I’m actually surprised that the person I was ten years ago has grown up into a person who does not hate herself and who rarely wastes energy on disliking others. It’s a pleasant realization. I really believe I must have hated myself to treat my abled and active body with such disdain, and to have thought I was so boring when my life was always so full of unique friendships and passions, and to have constantly been comparing myself to others and feeling so shortchanged. Not to say I don’t have moments where my body is a source of insecurity, and I certainly get frustrated with the slow, meandering pace that my brain operates at now. Somehow though, over the years, the negativity has become tempered with “but tomorrow I will be grateful for what I do have”.

A lot of my current (relative) level of peace has to do with getting almost all the way off of Lyrica and starting to paint again (more about that soon!). A lot of it has to do with this blog and the wonderful people who have introduced themselves and the strong sense of community that lives here. Also through the groups I have been invited into because of my writing here. A lot has to do with therapy, some of it with self-therapy techniques, and some with the actual, lasting progress I have made along the way. It’s easy to look back at three and a half years of illness and feel overwhelmed with all the life I have not lived in that time. I had planned to have a career and a child by now, and perhaps to have bought my house.

Ten years ago, I would have only seen that big dark cloud of not measuring up materially to the person I had set out to become, and I never would have noticed all the glints of silver lining to be found from where I’m standing in the rain. Three years ago, I feared there was no happiness or peace to be found amongst the terror and the overwhelming nature of being sick in my early twenties. Two years ago, I knew that others lived with diseases and still had fulfilling lives, but the knowledge just made me angry. A year ago, the knowledge that others out there were dealing with similar things and did not want to die every single day started to give me hope, and this blog helped me find those people and learn the self-acceptance that I needed so badly.

Now, I want to start to figure out what I can do to give back, but I have taken a pretty big set back this week by conscious overexertion so I could spend time with my family and my mom while she was visiting Oregon for ten days. During my recovery from this, I will be writing more and pondering what I have to contribute, and where the chronic pain community would be best served by what I do have to offer.

Thank you for reading my blog, thank you for reaching out to me, thank you for being so understanding and gentle, and so patient. I couldn’t have done it without you.

Do You Have a Favorite or Inspiring Book that has Helped You Through Illness or Chronic Pain?

I just received Toni Bernhart’s ‘How To Be Sick’ from my mom while she is visiting Portland for a week, and I’m super excited to read this one, but holding it in my hands made me realize how much I read about chronic illness online and how weird it is that I have never picked up a single book about it the entire time I have been ill. That is odd, right? I used to read a book a day, for about a decade between 3rd grade and the middle of high school, and then suddenly reading and I broke up. I also broke up with writing at that time, and didn’t look back except with nostalgia and faint longing to be able to sit down and pour everything I wanted to say out on a few pages and be free from it. I’m not really sure what happened, if I just lost faith in my intelligence and abilities, if I wanted to focus on other things creatively, or if it’s because I started working and suddenly reading and creativity both were not as important as before.

For whatever reason, it’s been a long time since I’ve read more than a book a month (even less lately), although I read voraciously online and peruse a wide variety of articles from scientific journals to nonfiction, self help to romance, blogs to buzzfeed, human interest stories to medical news, campaigns and conspiracy theories. You name it, I probably stumble across it and get sucked into reading about it all day long at least once every few months.

Since I read every day online, I figured maybe part of my self care routine and something to help recharge my creativity could be to set aside just ten minutes at first each day to read printed media, more if I care to (and I usually do). It’s been interesting because most of the books I have picked up to re-read from my extra-super-nerdy childhood do not interest me, except the books about space and quantum physics, and the collection of beat poets and writers I still love so very much. I have made a promise to myself to buy a book a month from now on, and the next one is Milk and Honey by Rupi Kaur, but after that I have no idea!

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Right now, I’m looking for books that focus on similar themes to ‘How To Be Sick’, especially the mindfulness aspect, but also things that may appeal to caretakers and are eye-opening or have been life-changing for ya’ll.

I you can think of any books that have particularly helped you on your journey, or that have spoken to your as a caretaker, I would love to get suggestions for my next read after ‘How To Be Sick’.

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Hopefully I will be able to update more frequently in the next few weeks and read more blogs, both things I have been seriously neglecting. I have some new paintings to share, and they’re not extravagant or anything to get too excited about, but it just feels good to be creating something, no matter how small or simple.

Wordless Wednesday: Preview of May Awareness Campaigns for Lupus and Fibromyalgia!

I don’t have many words right now, so this is much better. A preview of stuff I have been working on for Tumblr and for my May Awareness Campaigns for Lupus, in collaboration with a friend I met on Facebook through another wonderful spoonie. She mentioned doing a May Lupus Awareness campaign and jolted my memory that i need to plan something for May Fibromyalgia Awareness Month too. So I did, and here are some of the ones I have for my campaign on this blog.

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Here is the collaboration piece I designed to use as a template for a series of 30 Lupus Facts that Megan at RunItOnTheTopQuarter.blogspot.com is going to be putting up every day next month. She hasn’t been blogging for a while, so if everyone could go over there and show her some love, that would be fabulous and I know she would appreciate the good will from other spoonies. If you follow her blog now, you’ll be ready in time to get all of her advocacy and awareness posts in May and beyond. ❤

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Tool Box : Resources for the chronically ill

A thoughtful, well-made list of extra steps to take when you are experiencing a flare-up of symptoms, no matter what illness(es) you may suffer from. The author, Audrey, was diligent about this list and surveyed others to get a more complete array of options. I feel like there is something on this list for all of us, and as Audrey says in the post, “Because, let’s face it, when we are in the throes of a serious bout of turmoil, we forget. We forget to reach to those resources we so carefully crafted, selected. We forget the hours we poured into trial and error sessions to find what works best to help us and when.” She is so right. I love having a place to refer to when I am hurting so bad I can’t steer my thoughts away from the illness and pain. Even if I don’t feel capable of doing everything on this list, I can always do one thing, and the more I practice these techniques, the better I become at accepting and making peace with my illnesses.

My Chronic Lessons

Tool-Box

Having a tool box is essential to coping with a chronic condition whether it be pain, illness, depression or some other continuous issue. A tool box helps us get through moments, sometimes days and maybe weeks but the true purpose is to help us see passed the hard moments we don’t know how to manage.

Now, I’m not talking about an actual Craftsman tool box because it’s a bit big and unrealistic for most of us, but if you find that helps, awesome. I’m talking about a box of resources for all the challenges we face on an on-going basis. Sometimes it helps to have an actual box with these things listed inside, perhaps on slips of paper, or filled with happy thoughts, other times an excel or word document, notebook, fridge magnet, or other key reminders. Because, let’s face it, when we are in the throes of a serious bout…

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Learn How To Rest

A quick image I made because I’m struggling with this right now and need the reminder.learn to rest

Maybe someone else could use it too?

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Chronic illness warriors are great at pushing through, but as we all know, that is not always the best or healthiest option, although sometimes it seems like the only option. Pushing through can lead to a flare up that sets us back for days, weeks, or even months. Rest is a real job with chronic illness. No matter how we may be feeling, even if it’s better than usual, every single day consists of maintenance and making difficult choices that can help or harm us in the quest for balance. Most of the choices you have to make are things the people around you cannot understand. That makes it even more difficult to prioritize our own well-being in stressful situations.

To all those who wrestle with the guilt surrounding being chronically ill or in constant pain, I am right there with you.

Love you guys!

Join the 21-Day Chronic Pain/Illness Photo Project

ChronicPainLife is raising awareness for chronic pain warriors everywhere through a once a day photography challenge called Chronic Pain in Focus starting a month from today!
What an awesome idea, I love this and will share it again closer to the date!
If you’re interested in taking part, please head on over to her facebook group and request to join, then starting April 27th you can post your photos to the group and then blog, instagram, tumble, tweet, and facebook your responses to ChronicPainLife’s daily photo prompts with the hashtag #chronicpaininfocus to spread even more awareness.

chronic pain photo projectI am hosting a 21-Day Chronic Pain/Illness Photo Project in a closed Facebook group starting Monday, April 27, 2015. Each day there will be a photo prompt related to chronic pain/illness. Participate as much or as little as you would like. No experience necessary. Just use your phone-camera, snap away and share in the group.

If you are interested in joining the project click on this link.

Follow Chronic Pain Life on Instagram – @chronicpainlife
Hashtag your chronic pain photos with #chronicpaininfocus.

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7 Cups of Tea: Free Online Chat with an Active Listener or Therapist

Introducing the free mental health resource 7 Cups of Tea to anyone who hasn’t heard of them before.

If you need someone to talk to, any time, this is a great website to save in your favorites. All chats are anonymous, and you can either connect to the first available listener or find someone who fits your needs from their list of therapists and listeners.

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 Free, anonymous, and confidential conversations. All sessions are deleted.

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7 Cups of Tea is a safe, non-judgmental online space to talk it out with trained active listeners. You can even connect with a therapist or active listener whose specialties are of interest to you or your particular situation. There is also group support if that is more your style.

7 Cups also offers a set of thorough self help guides to consult, including self-help for chronic pain, as well as for anxiety, college life, and even one for entrepreneurs who are struggling with their start up companies. There are a wide variety of topics covered, you may be surprised to see a self-help guide for something you thought not that many people struggled with. They keep an expanding library of articles about specific mental health topics, such as this post on Mindfulness.

There is a lot to see on this website, and a lot to remind us about basic self-care during the tougher times in our lives. The self-help guides might seem repetitious for spoonies and those living with chronic pain, but our mind plays tricks on us when we are at our lowest, and the simplest of ways to practice self-compassion and healing slip through our fingers. That’s why it’s a useful website to bookmark and visit often, even when you’re not planning to chat with an active listener. I have added 7 Cups of Tea to my Chronic Illness Resources Page. Any online resource like this is just fabulous, and this is one of the best I have found. Plus, it’s FREE, and free is an awesome price. Especially for those of us who are prohibited from working by our illness or pain. Stock-Image-Separator-GraphicsFairy11

Volunteer Opportunity Alert:

If you’re looking for a volunteer opportunity that you can do any time from home, this may be perfect for you! They are always looking for new Active Listeners to train so that more people can receive one on one attention.

Click here to begin the sign up process

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Suggestions?

If anyone has any suggestions for self-help websites or free online therapy, please leave the URL below in a comment and it will be added to my Chronic Illness Resources Page.

So You Want to Date a Sick Person?

So You’re Healthy, and  You Want to Date a Sick Person?

Like, Really Date? Here’s what you need to know:

Millions of Americans suffer from chronic illnesses. Millions of young (<35) Americans suffer from chronic illnesses. And, millions of young Americans suffer from chronic, invisibleillnesses. I’m one of the third kind, and if you’re healthy, and want to be in a partnership with someone like me, this containssome of what you need to know.

1. Think about it. Are you sure?

If you said “yes” before beginning this sentence, the answer is actually “no”. For the good of all of us: if you enter into a relationship with us, you have to: 1) be sure you want it, and 2) ensure you’ve spent at least ten hours finding out about disability, and the illness(es) in question. You have to think about it. Are you going to be okay leaving something you really wanted to go to because they’re not feeling well? Are you going to be okay with many late night ER visits? Do you understand that they may never be able to, or want to have, kids? And, it’s on us (hear that, sick people?) to try to explain what it’s like to be the partner of a sick person. Hopefully I can do some of that work here.

*That said, take forums made for disabled people with a grain of salt, because they’re generally not representative of what daily life would actually feel like

2. Try to understand, and to really understand. But most importantly, internalize that you probably never will be able to.

We have to deal with a lot of well-meaning but misdirected “advice” every day. Some of us hate it less than others, and some days no matter how little it bugs us it will probably send us into a tailspin. Understanding that we are having an experience entirely foreign from the one you live is the best way to minimize advice coming from you.

Some things we do don’t make sense, and we can’t communicate it to you. Why is it that I can lift a box, but not wash off a fork? I don’t know how to explain it, but that doesn’t make it any less true! Also remember: “Third party perspective” is an invaluable resource, for any relationship. If you’re going to be in the relationship, it may be good to find a few other people who are also SOs of people with invisible disabilities.

3. We will always be highly variable, and occasionally inexplicably variable.

Some days, we feel good enough to make plans. Occasionally, they are ambitious plans. However, that does not mean that that should form an expectation. If I say that tomorrow I want to do research on how to start that company I had been thinking about for ages, and tomorrow comes, and I’m not doing it immediately, it’s not because I don’t want to start that company. It’s because Ican’t. And yes, believe me, I know I said tomorrow I would do that.

But here’s the thing: we don’t have any idea what tomorrow will look like. Sometimes tomorrow looks like a warm breezy September day. Other days, tomorrow we wake up and the first thought we have is “Wow, I actually feel like I’m going to die.”

4. Understand that one of the biggest hurdles is that we do not look like we are sick.

Even to ourselves! If I look healthy, society expects me to act healthy, you expect me to act somewhat healthy, and worst of all, I expect me to act healthy. I feel like I should be able to do all the things that normal 20-somethings do, except that doesn’t happen, because impossible things generally don’t happen. Cue me feeling guilty, and blaming myself. And no one else understands, because I don’t look sick, and because, why would anyone ever complain about not being able togain weight?

5. Don’t judge us for how we medicate.

Do you have any idea how long it takes to get into some of the specialists we need to see? Months and months. If my body is breaking, and it’s going to takemonths for me to see someone who may even have a possibility of starting to fix it, you bet your ass I am going to be forced to self-medicate. Yes, even the “scary” medications. Let’s take opiates. Sick people are not addicted to opiates. Sick people take opiates to be able to function. Every sick person I know has been able to stop opiates cold turkey no problem after they’ve finished a round of needing them. But guess what? When you need them, you fucking need them.

Accept that you don’t know what it’s like. And, accept that the stereotypes don’t apply in this instance. We’re not doing it to be “doped up” or forget our problems. We’re doing it because although we acutely know what our problems are and would take a good doctor’s appointment over vicodin in a HEARTBEAT, we also know that that appointment is a long way off, and we need to not be incapacitated. I’ll let you in on a secret: it’s kind of like a competition within ourselves to see how long we can go without taking something that will make us feel better. Today I cried because I felt like a failure for needing pain medication.

Also realize that things do not work the same way in our bodies or our brains. Normally, I am extraordinarily uncoordinated, and fall often (without reflexes). When I’ve had sedatives, I become not just graceful, but exceptionally clear-headed compared to before. Brain fog: it’s a thing, it comes from pain.

6. Don’t have your primary desire be as a caretaker.

Some of us want partners. Of those that want partners, sometimes we will want to be taken care of. But, regardless of if we want you to be our caretaker, it is not a good idea to start a relationship with one person’s primary role acting as caretaker. The difference between taking care of and being a caretaker is enormous. Self-sufficiency is important, and it’s a skill we all have to learn. Sometimes, we will need help, and we will call you. But dependency is easy to fall into and hard to get out of, and it will destroy your relationship.

7. Sometimes us being sick will suck, a lot, for you too.

Sometimes we will be on medications that change our personality. If we’re on steroids, we’re probably going to be cranky. Some of us have Raynaud’s, partial seizures, vagus nerve dysfunction, adrenal dysfunction, and other conditions which can make us temporarily moody.  Most of us don’t sleep well. Most of us have a hard time with food.

If you’re lucky, you’ll be dating one of the kind that is pharmacologically self-aware, and they will be able to tell that something is making them some way other than normal, and try to fix it. Unfortunately, some of us don’t know when we are acting differently, which is compounded by the fact that most of us have so many possible explanations for everything that it would be very difficult to find the culprit. And sometimes, we can’t change it at that moment. You don’t take steroids unless you need them. It’s also pretty hard to balance your hormones.

8. No sympathy. Empathy, but never sympathy.

Do not ever fall into the trap of what I like to call the “adversity inferiority complex”. This is when you compare my problems with yours, decide that yours are less worthy, and hold them in. This is a recipe for disaster. Partly because it breeds resentment, and partly because it’s actually a lot easier for us to help others with their problems than to always focus on our own. So a lot of the time, we will be happy to help you, even (and maybe especially) if we are feeling shitty, because then we have something else to focus on. Also because if you truly want a relationship, the only way you’re going to be able to have one is to go through things together. And trust me: we want to hear about your struggles.

It should be established that if we’ve hit a major threshold and just can’t, then maybe there can be a safe word that means “I really can’t right now, but I want to very much, can we schedule a time to talk later?”

9. Talk with us.

Talk with us about it a lot, and take time making this decision. Because if you do, it requires a lot of trust from us. And as a sick person, Trust is both the scariest thing to give out, and is a finite resource.

10. Most of the time, when you think we’re mad at you

We’re worried you’re going to leave, because we’re sick.

Despite all of this

Most of the time it will be like being in a normal relationship with any two people who like each other. Every relationship has hurdles. These will be some of them. That doesn’t mean that most of the time, you will even be aware we are sick. But, these are things you need to know for those times.

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My Response to YesIReallyAmSick on Tumblr:

The author totally hits the nail on the head, especially the last part about when we seem angry. I was with my boyfriend for years, actually planning a future as his caretaker (he had been told he needed major hip surgeries spanning a few years of total recovery time), before my car was hit by a semi truck on my way to work. After my initial 50% recovery in the first six months or so, slowly I went downhill again, until I finally became too sick to work or ignore what was going on any longer. Our story is a little different in that we were both healthy when we started dating and living together, and in the same year, we both had life-changing medical happenings, and not in the good way. Suddenly, my boyfriend and I found ourselves unable to work normal jobs or participate in life as much as we would like. Young, sick, and in love. How hollywood. Except it is nothing like a movie.

The relaionship started out so classic; chubby goth nerd girl dates tall former football player. I fell in love right away, and told him so, but it took him another year to decide he wanted me too. We never dated like regular people, even then. We hung out in our apartments with friends and at friends’ apartments, we cooked eachother food and drove around the city aimlessly, because we were too broke to go to bars, and we didn’t ever do the dinner and a movie thing. We have spent every single night together since the first night, except for one this last year in which I slept at home while my boyfriend was in the hospital overnight after a surgery. Our first date was five months into our relationship, just before we moved in together. It was a camping trip, our first together but one of many to come. I think I surprised him by actually knowing how to throw a baseball. And by how much I wanted to hike, explore, and never go home. Things are so different now, and it almost hurts to recall the person I once was.

I worry about the toll it takes on him to be picking up my prescriptions now, taking me to appointments because I have lost the ability to do so myself, remembering what I cannot remember while I am talking to my doctors, and most of all seeing me in pain and miserable and not being able to fix it like he fixes everything broken. For his sake, I wish I did not have this long list of medical problems, but for my sake I am somewhat grateful that I do, something I cannot explain fully in this post, but which I try to convey through most of my other writings.

The major downside to falling for someone while living with a chronic illness is that it is heartbreaking to know I place limitations and higher-than-reasonable expectations on the love of my life. He is going back to school since he cannot work his old labor intensive jobs anymore, and we live off of his financial aid, which will have to be paid back eventually. It’s not a glamorous life, we are broke, broke, broke, and what money we come by goes towards medical supplies and prescriptions, for both of us, but mainly me. Money is a thing that unfortunately will limit our plans as well, because I am truly sick and I cannot just skip picking up my medicines, even though they sometimes come out to $800+ out of pocket in a month. This is not what I imagined. This is not what I planned for. This is not what I worked so hard for. But it is reality. And feeling sorry for myself is not my style.

Therefore, in our relationship I do not regret all that we have been through together. I know without a doubt that he loves me, that he will stick by me in sickness and health, and that I will do the same for him. Many couples do not have that bond, and again, I defer some level of gratitude to my illness.

The divorce rate for those with chronic illness is very, very depressing. It hangs around 75% of marriages. So many relationships destroyed by the difficulty of fulfilling the vows they exchanged: “In sickness and in health.” I hate those statistics. I hate that I am fighting those odds now too. But I love the man I am with, and I have seen him do whatever it takes to be with me, and he has seen me do the same for him. I have slept for a month on the couch while he healed from his surgery in a hospital bed in the living room, during a massive flare up. I did not struggle to make the decision to do so, because if he needed me I could not hear him if I slept in the bedroom, and at that point he needed me often. He has driven me an hour each way to appointments even while his hips are killing him. I have cheered him along while he chose a new career path and went back to school, and I have supported unquestioningly his need to take a few semesters off for grief and for surgeries. He has supported my difficult journey and allowed me to find my voice and my way again post-diagnoses, even when it meant getting fired from my job and beginning the terrifying process of applying for disability as a 20-something recovering workaholic.

To say that we are dating is a white lie. We are nesting, we are living together, we are committed, but we do not get to “date” each other like other couples do. We have not been out to eat in over a year, easily. Our frequent camping trips, which I always considered the most romantic dates of all, have become one night mini-adventures, which we both suffer from disproportionately and can only manage once or twice a year. Our long drives to nowhere to look at houses and gaze at scenic areas of Oregon have stopped. Our couples-daydreaming of a future on a farm have ceased. When we talk about having children of our own or adopting, our eyes hold bittersweet, cautious hope that we can still make real the dream of little ones, no matter what happens.

Our future is murkier now. Will I be able to carry a child to term? Will I be a good mother? If he needs more and more surgeries will I be able to care for him, and children, when I often can’t even care for myself? Will my condition ever allow me to bring in money again? Can I homeschool and make everything from scratch or is that ridiculous? Is there a way to minimize the impact my illnesses have on my lover and my theoretical future children, without compromising my treatment? Will I deteriorate further the older I get? Am I sure I can’t just snap my fingers and get rid of all these issues, go back to the way we were and the innocent daydreaming of a happy, hard-working, fulfilling life?

Yes. I am sure. But only because I have tried it a few thousand times to make certain.

happiness

I am just like you. I want to go hiking this summer, want to drive to the desert, or the coast, or the mountains spontaneously. I want to work hard and play harder. I long to have ordinary twenty-something nights; to once in a while get drunk with my old friends and run around downtown in the rain in heels, with no coat, until 4am. When the radio plays a song that stirs my soul, I get excited and daydream of concerts and dancing with abandon while all the hipsters stand there, swaying to the band with their hands in their pockets. If friends and family tell me about their relationship issues or financial struggles, even their aches and pains, I have a deep well of empathy and understanding no matter how bad I am feeling. When people tell me to buck up, pray harder, or stop trying to attract so much attention with my illnesses and injuries, I am furious. Wouldn’t you be angry if you had channeled your over-zealous work-ethic into trying literally everything to cure yourself, from conventional to the very odd? I have a right to be furious if people insinuate that I am lazy or not trying hard enough, or that I want attention, nevermind that I worked a year and a half past the point of spending most of my days sobbing or trying not to sob while working because I just hurt so much. I did not choose my broken body. Every small task feels like a marathon to me, but on the surface it’s not possible for most people to see how much I struggle with small daily activities that others take for granted.

I still have ups and downs in my moods that have nothing to do with being ill, but I also have moodswings that are out of my control, either from imbalances in chemicals in my body, or from medications I take. Talking to me with an open mind is the only way to find out which it is. Sometimes I don’t even know I am acting strangely.

Every day I have to ask myself if I can really allow the person I love so much to suffer along with me. I have to ask myself if he wouldn’t be better off finding a healthy girl who can bear him the children he so badly wants and take care of him like he deserves when he is hurting. Someone not so damaged would be great for him, right? But that is the voice of insecurity and it takes up real, vital energy to worry, and we are in love. That is all I need, I hope it all he needs too, I trust him to choose what is best for himself. The fact that he loves me and I love him holds the answers to my painful questions. I would so much rather focus on the love between us than the uncertainty the future holds. Unfortunately these thoughts and fears do resurface often or I would not be writing about them at all.

To be honest, I am often scared of losing the love of my life to sicknesses that I never wanted. I am scared because the man I love can get up and walk away. I cannot. I am stuck with it, with the late night ER visits and furtive internet research on my conditions. with medications that I hate taking, with horrible insomnia and a libido that disappeared completely, with support groups and symptom logging, with severe, non-stop pain that changes my personality and rewires my brain. I am bound by a very finite amount of energy each day and there are dire consequences for overstepping my energy envelope. I cannot opt out of this delicate balancing act (or disastrous mess, depending on the day), but my partner can. Yet, he chooses to be by my side.

The trust has to be immense between us to make it work in a long term sense. The communication has to be from a place of equality and respect, and it can never stop happening, or the relationship essentially shuts down too. We have very ordinary couple problems, as well as very specific troubles relating to illness, grief, disability, and pain. Our relationship has been through more than most sustain in a lifetime of marriage.

Talking about chronic illness and its effect on our relationships is hard, because love is vulnerable. There is so much at stake. There is a person we cannot bear to lose, or a potential to meet and fall in love with someone we cannot bear to lose, and our illness absolutely will impact that person negatively at times. That is not the stuff of the average happily-ever-after, but it is mine.

I do not regret the powerful sway that love has had over my life in the last six years of coupledom. His heart is something I would not trade for wealth, for wisdom, or even for wellness.

Still, I worry, because even the strongest relationship is not perfect, and I have added so much stress to our lives by becoming ill. Stress that just isn’t healthy for anyone. I care about and love my boyfriend deeply and do not want to be the one part of his life that holds him back from finding his own happiness. It is a delicate and complex balance to communicate with my partner enough, about the right things, while somehow not over-sharing all the time. I’m terrible at the balancing act between too much and not enough information right now, and that absolutely causes problems. That is just one tiny example of the difficulties of putting love into action while dealing with the cards dealt by chronic pain and illness.

New Site Header

I tried to make a new header and improve my blog’s layout a tiny bit, but I just can’t decide which header image I like the best, out of all the ones I have made. I guess I haven’t knocked my own socks off yet with any of them, so until then this blue beach scene will have to do. Reminds me of the coast in oregon on an especially pretty day, mixed with the hand-painted watercolor cards my grandma used to send on birthdays.

Check it out, tell me what  you think:

findingoutfibrolivewellheader

You can see I did decide to change the wording of my tagline from “survive with chronic pain” to “live well with chronic pain” as I think that’s a better goal for me now, more than a year out from my diagnosis of Fibromyalgia, about a year out from learning that I also had Chronic Fatigue Syndrome, Joint Hypermobility Syndrome, and Spina Bifida Occulta, and about six months into realizing that I haven’t been making as much progress as I would like, because I also need to deal with  several anxiety disorders, including PTSD. It’s been three and a half years since I was in an auto accident that changed my life forever. I no longer am content with “surviving” because it’s not enough, I want to do more than just get through the day. I want to thrive, chronic illness and pain be damned.

Stock-Image-Separator-GraphicsFairy11

Right now I’m really trying to remind myself to just make one or two changes at a time since I have another blog to get off the ground right now and don’t need to be spending so much time over here, but I can’t seem to stay away. At least I’m taking my own advice about making small changes one at a time instead of trying to overhaul the entire theme in one day.

Self Care Isn’t Found at a Store

selfcare

I found this quote on Tumblr and immediately had to make a simple text image out of it. The original source is listed at the bottom of the image, but in case you want a direct link to the post, here it is: http://wheresagnes.tumblr.com/post/113095286140/self-care-is-not-a-bath-bomb-nor-is-it-a-face.

I also wanted to announce that I have joined Tumblr, under the same name as this blog, FindingOutFibro, and I will be trying to make as many images related to chronic illness as possible.

It’s so awesome to have Photoshop back, even though it’s like learning to use it all over again from scratch now because it’s been ten years, and even though I have to pay $10 a month for it (ugh… seriously Adobe?), I am still just happy to have a playground for all my visual ideas and a place to brainstorm my logo, header, media kit, and other branding stuff for my new business. It would probably be a good idea if I gave some thought to doing that on this blog as well.

Is anyone interested in me posting a Resources for Bloggers page with links to collections of free photoshop brushes, fonts, public domain image databases, patterns, royalty free background images and photos, html coding help, and links to a huge variety of goodies I have found as I go? I think a lot of people with chronic illness are intimidated by the thought of starting a blog. I certainly hesitated for a long time, but wish I hadn’t been so overwhelmed and had been able to start sooner when I still had a little more of my old energy. I want anyone who is even considering starting a blog to have all the tools at their fingertips to be able to get their voice out there into the world with the least amount of stress. Not that I know very much about this blogging stuff, just that I’ve been keeping track of the resources that have been useful for me as I get started, and I would love to share!

Getting Used to New Symptoms, Again

Yesterday I forced myself to water my houseplants, they needed it badly after a few sunnier days with the windows open, and it’s always pretty dry in my house. I filled the watering can up just fine, carried it twenty steps across the living room from the sink, hurting but still relatively normal, and then suddenly as I barely got past watering the first few plants my muscles all started to shake, horribly. I was shaking so violently that my boyfriend could see it from across the room and insisted that I take a break. I did, but my strength didn’t come back, and it still hasn’t. As I finished up, one half-full watering can at a time spread throughout the rest of the evening, the severe spasms kept happening, and not just in one leg like happens when I’ve dislocated something, this was in every part of my body, from my fingers to my thighs to my feet, everything just quit on me.

I’m a little scared. This is maybe the fifth time this level of weakness has happened in the last three years, but some weakness and shakiness are near daily companions now. However, helplessly watching my own legs twitching and flopping around like an electrified frog while I cling to the table with quaking arms, that scenario still leaves me a little unsettled. I’m really not sure whether to be terrified, to chalk it up to a newer aspect of my Chronic Fatigue Syndrome and Fibromyalgia, or to roll my eyes and try not to think about it at all.

The mysteries that come along with chronic illnesses are not part of their charm. This newest episode is just one of dozens of odd symptoms that I can’t keep straight anymore.

Tonight I am getting some good animal therapy time in, with our roommate’s dogs while he and his family are visiting a friend overnight. The better behaved of the two girls, Jasmine, is an actual therapy dog, certified and everything, so she’s always great at comforting me when things are shitty, scary, or uncertain. I’m glad for the comfort and distraction two dogs on our couch provides.

thedogs

Along with the shakiness from yesterday has come insomnia, severe stiffness, SI joint pain that ruins me, and one partial dislocation after another, accompanied by the normal loud ka-thunk-ing and popping my joints do when they are the main culprit of my pain.There have been some pretty severe migraines, chest pains, and nausea as well. Lucky me!

It’s honestly not all bad news lately, I’ve been keeping it together pretty well and I have been proud of myself consistently for the attitude I have kept up.

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Spring has sprung and I can’t turn back the clock, only try to keep up. The veggie garden is becoming a demanding part of my daily life. My boyfriend bought cedar planks last week and built me two new raised beds wrapped with landscaping fabric so water can escape, but not dirt. We set them on the pavement, having officially run out of back yard to convert to food growing spaces. In defiance of my illness I have started a planting and preserving schedule that will keep me busy all summer and part of fall. On the flip side it will also provide lots of nutritious food for both families living in my house as well as my business partner and her new son.

It has actually, despite setbacks healthwise, been a few weeks of getting more than usual done, out of sheer willpower. Sometimes willpower isn’t going to fix anything, though. Yesterday was one of those times. Hopefully it doesn’t happen again. Hopefully nothing else weird happens, period. (Cue: laughter)

In the meantime, wishing everyone a low pain week. ❤

Pain and Opiates: Perceptions vs Reality | EDS Info (Ehlers-Danlos Syndrome)

More reality checks when it comes to chronic pain and opiates, via a super smart fellow blogger! So happy to print this and put it in my medical binder for those idiots who think I should just suffer endlessly, needlessly, and be happy for the privilege.

It’s just so wonderful when people form an opinion based on facts and not histrionics.

Hooray for using our brains!

😀

Pain & Opiates: Perceptions vs Reality

via Pain & Opiates: Perceptions vs Reality | EDS Info (Ehlers-Danlos Syndrome).

1.    false: Opiates take pain away completely.

TRUE:  Opiates do not remove chronic pain, they do not numb pain like Novocain, they merely dull it enough so that it isn’t all-consuming.

2.    false: Pain is the body trying to tell you to stop, so you shouldn’t take opiates to cover up the pain signals.

TRUE:  Normal pain is an alarm to take action, but chronic pain happens when the alarm gets stuck in the “on” position – the switch itself is broken.

3.   false: Opiates make you dull, confused, and non-functional.

TRUE:  When used for pain relief, opiates allow people to be more active and functional, get out of the house and socialize, sometimes even continue working.

4.   false: There are other pain medications that work just as well as opiates.

TRUE:  Opiates are the most (and often the only) effective medications for pain.

5.   false: Opiates have severe and permanently damaging side effects.

TRUE:  Opiates have fewer and lesser side-effects than most of the other medications prescribed for pain.

6.   false: You will get addicted if taking opiates.

TRUE:  People taking opiates for pain are statistically unlikely to become addicted unless they already have addictive tendencies (5% chance).  However, regular use of many medications causes dependence after your body has adjusted to them.

7.   false: If you take opiates for too long, you’ll get hyperalgesia.

TRUE:  Opiate-induced hyperalgesia is extremely rare in humans, and this scare tactic is based on just a handful of very small research studies.

8.   false: If the pain is constant, you’ll get used to it and it won’t hurt as much.

TRUE:  Pain that is allowed to persist uncontrolled leads to changes in the nerves that can eventually become permanent.

9.   false: Opiates work the same way for everyone.

TRUE:  Different people get the same amount of pain relief from widely varying dosages because our bodies are all different in the way we “digest” opiates.

10.   false: It’s better not to take opiates because they damage the nervous system and cause hormonal imbalances.

TRUE:  Persistent pain results in the same kind of damages to the nervous and hormonal systems.

11.   false: You should not take opiates because your pain won’t improve.

TRUE:  Chronic pain can only be treated, not cured.  Opiates are often the best means available to treat the devastating pain symptoms until a cure is found.

12.   false: If you start taking opiates, you’ll just have to take more and more forever.

TRUE:  Most chronic pain patients finds a stable dose of opiates that works for them.  If doses need to be increased, it is usually because the pain condition gets worse over time.

13.   false:  People only want opiates for the high.

TRUE:  When taken as prescribed for chronic pain, opiates do not make you “high”.  The same chemicals that make illegal users “high” go toward dulling the pain instead.

14.   false: It’s better to tough it out.

TRUE:  Denying people pain relief sentences them to a life of unnecessary suffering.

= = = = = = = = = = = =

“The patient uses opioids to relieve pain and maintain a normal relationship with the real world;  the addict takes opioids to escape from reality.” – Ronald Melzack

= = = = = = = = = = = =

Many people disabled by chronic pain are unfairly accused of lying and faking, so here’s some myths from that category too:

1.  false:  People who complain about chronic pain are just trying to get SSDI.

TRUE:  Most people disabled by pain desperately want to work.  Many had to give up high-level, well-paying positions and now live in poverty on SSDI.  There may some fakers, but this is not a reason to deny SSDI for truly disabling pain.

2. misleading: If injured workers are given opiates they are unlikely to return to work (statistically true)

TRUE:  This is probably because their injuries are serious enough to cause chronic pain and require opiates, not because the opiates are keeping them away from work.

= = = = = = = = = = = =

1. Source for addiction statistic:

http://www.nlm.nih.gov/medlineplus/magazine/issues/spring11/articles/spring 11pg9.html

via Pain & Opiates: Perceptions vs Reality | EDS Info (Ehlers-Danlos Syndrome).

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