Tag Archive | invisible illness awareness

Staying Present During A Flare Up

It’s a major challenge to remain present despite the feelings of despair about all my worsening symptoms and lack of options that I am staring down. At the same time I’m always trying to figure out more and more about living inside my energy envelope and enduring the chronic pain, the lack of predictability, the severity and suddenness that my symptoms frequently come on.
Fortunately, a louder part of me than the despair knows that it’s important to grow and learn from this never-ending flareup, otherwise I am just surviving hour to hour, living in fear, and that isn’t enough for me. I’m greedy.
I want to get to a better place so I can really live again, within my limitations. So I can make my mark, however that is possible. It has to be possible. Everything is so hard now, but I know who I am, and I know who my friends are. I’m stronger than ever in some ways, and I am learning to forgive myself for the weaker parts.
Even when all I can do is breathe, it helps to remember that just being alive is amazing and improbable. I am so grateful for days when I am capable of seeing past the storms overhead. It’s okay that I can’t do that every day, because I’m doing my best.
from Instagram: http://ift.tt/1ENzmMI

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.

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. ❤

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

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.

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).

An Old Rant and a New Perspective

I found this article which I had written about on Facebook before I had a blog. The first time I read about this girl’s story I felt so alone, so overwhelmed and out of control and consumed by pain that I cried the entire time I was reading it. I didn’t yet realize how many of us were going through the same thing, or how many friends who truly get what chronic pain means that I would meet along the way. I just knew the desperation, anger, and denial that I was piled under. Fortunately, times have changed, or at least my perspective has. I can still really sympathize with this girl, and understand where she is coming from, and I am still incredibly grateful to her for writing her story at a time when I felt hopelessly isolated. This may have been the first time that I realized if more people were less afraid to speak out about chronic pain, we might be treated like human beings, eventually.

 

My Story: Looking for a New Doctor

National Pain Report

May 26th, 2014 by Kitty Taylor

I’ve had chronic pain as far back as I can remember. It got unbearable a few years ago after a serious injury. My body won’t forget the pain and it feels fresh as day one without medication.

I recently moved to Colorado from Nevada after being with the same doctor for many years. Now I’m having a hard time finding a new doctor willing to prescribe the medication I’ve been taking. I’ve found plenty of clinics that say they specialize in pain management, when in reality they are rehab clinics. Their sole purpose is to wean you off narcotics and put you on highly addicting medication, such as Suboxone or methadone. Some clinics are treating pain with Suboxone long term. That was not the intended use.

Then there are pain clinics, usually the spine centers, that only do injections and don’t prescribe drugs. I wish they would distinguish in their business category what they’re really about.

The first clinic I thought would be helpful turned out to be a Suboxone clinic. On my second appointment there they told me outright that I wouldn’t be continuing on the same medication and that I would be going on Suboxone. If I didn’t agree that, I was told they’d cut my doses so low I couldn’t handle it anymore. So I canceled my next appointment with them.

Drugs like methadone and Suboxone (which may or may not help the pain) are just as dangerous and the addictions to them are intense. The withdrawals are unreal. Coming off the medication I’m on now would be painful, but having to come off one of those could cause months, not just days, of withdrawal and pain.

Not only that, but imagine if you couldn’t get your next dose of methadone or Suboxone, you could end up in a coma! Any doctor that says there aren’t side effects and the withdrawals aren’t bad is lying.

It’s been four months since my last appointment with my helpful doctor and I’m still looking for a new one. One clinic I had a referral to, the doctor refused to accept me as a patient. It’s taking so long to find a doctor and I’ve got to find one quick! There are so few listed and so few that prescribe narcotics or are honest about what they practice. If you are rehab clinic you should not be advertising that you manage pain.

I’ve certainly been made to feel like a drug seeker and nothing more since I’ve moved. My last doctor never made me feel that way. He was caring and compassionate from day one. The only complaint I have about the visits there was that the DEA had them scared to prescribe medications that I had been on for a long time. My medicine and schedules were altered based on word from the DEA, not what my doctor felt was right for me and not what was working for me.

My daily function is greatly decreased since my medications were screwed with and it’s getting worse. First they took away Soma and it was painful trying to find another muscle relaxer. Even the one I’m on now sucks, but it’s better than nothing. Some of them I think were causing more muscle spasms and cramps. It was so bad I looked like I was having a seizure.

Then they couldn’t prescribe more than four oxycodone pills a day when I was on six. They couldn’t even prescribe Demerol anymore because the DEA and the county were having so many problems with it. The hospitals stopped keeping it and the pharmacies stopped ordering it because of theft and robberies!

Kitty Taylor

Kitty Taylor

via My Story: Looking for a New Doctor – National Pain Report.

One of the first things to go was how many different narcotics I was prescribed at once. My doctor had me on two long acting (1 pill, 1 patch), two short acting (1 scheduled and 1 breakthrough). So for short acting, I would have 4 Dilaudid a day scheduled and then up to 6 Norco per day as needed.

The Norco was taken away and so was the patch. I was down to oral long acting 4 times a day instead of 2, and 6 short acting a day instead of 4. It worked out about the same, except those extra Norco would be a godsend about now, especially since I’m running out of as needed meds because I’ve been without an appointment for so long.

This shouldn’t be happening. I’m looking for cash only clinics now even though I have insurance because I don’t want my business in all the computers everywhere. I’d also be fine seeing a pill pushing doctor that over prescribes. I’d be able to stock up in case something like this happens again and I trust myself not to increase my medication.

I never take more than I need and I’ve never run out before my next appointment. Because of being hospitalized I’ve been able to stock up on some of my own stash while the hospital administered to me with their own pharmacy.

There’s no point in making myself more tolerant and never getting what I need. That’s why I switch my meds to equivalent doses of different kinds every few months. That way I don’t need to increase. My body becomes tolerant to one and I switch to another until I become tolerant again and I switch back. This regimen worked well for me and my doctor agreed it was better than taking more and more.

I don’t want to be labeled or discriminated against for having invisible disabilities.

I get enough smacks in the face just using my disabled parking privileges!

12_7.jpg“Kitty Taylor” is a pseudonym. The author, who suffers from Ehlers–Danlos Syndrome (EDS), Cushing’s Disease and Post-Traumatic Stress Disorder (PTSD), asked that her real name not be used.

National Pain Report invites other readers to share their stories with us.

Send them to editor@nationalpainreport.com

via My Story: Looking for a New Doctor – National Pain Report.

 

And this was my response, a year ago:

“This is so much like my story. The way she talks about having to deal with “pain clinics” who only push methadone, or who only push Lyrica and Savella, or who only do injections. None of them have the ability to actually treat acute flare ups. I know from personal experience that even when a procedure at a pain clinic goes wrong and they have caused you intense and unrelenting pain, they do not offer any help, just tell you to calm down, because you’re scaring other patients, and “if it’s really that bad” to go to the emergency room. Pain clinics are a gimmick. A glimmer of hope that turns out to be bullshit when you get up close, every time.

I can’t do cortisone injections, I can’t take most antidepressants, nor steroids, nor do I care to, I am taking Lyrica and two different muscle relaxers at the same time for spasms and I also take all the usual Vitamin D, B-12, magnesium, zinc, rosehips, tart cherry extract, etc, that seem to help maybe? Who knows. The only time I have ever gotten any relief from this pain is after six hours waiting in agony at an Emergency Room, watching junkies and fakers get treated with more dignity than you, because you refused the little cup full of oxycodone and valium (I had already taken my personal comfortable limit of oxy while waiting in the ER, and I told them so, and I don’t do well with valium, it causes panic attacks and it’s written so in my charts if they had payed attention). One time I was told rudely to leave the ER, and then billed $600+ for the pleasure of being treated like human garbage by a very bitchy ER doctor after waiting many hours to be seen. Twice I received actual pain relief that lasted maybe five hours and was the only relief from the hell of fibro that I have had in two years. I haven’t been to the ER in over a year, but I think about how the ER is always full of people who feel better than me. The ER is a very, very, VERY last resort at this point, however.

I’m not even functioning anymore, I’ve been in way too much pain for way too long. I’m just trying to get to a place where I have enough moments in a day to take care of myself properly. I’m not even close to that level on my current treatments. Most days I can’t brush my hair or take a shower. Most days I spend two hours doing a task that should take fifteen minutes. Most days I am overwhelmed and unable to advocate for myself.

The point she makes that I think cannot be overstated is that chronic pain patients don’t abuse medications. Then we wouldn’t have them when we need them. The pain is real and we would never want to not have the ability to treat it.

We are just as scared of finally finding the right drug (can it please be a non-opiate, non-psychoactive drug?) that makes the pain bearable only to have it taken away again, as we are terrified of the pain we are in continuing unchecked. And we are scared of addiction, too. And scared for our organs. And scared for the changes in us caused by taking pain medication. We’ve weighed all that. The pain warrants the medication, or we wouldn’t take it.

The pain is already changing us, rewiring our brains, making us shells of the people we were before, and turning our bodies against us. If there were something better, we would certainly take that instead.

I understand her panic and her logic and I really feel for her.”


 

Phew, so that’s me a year ago. I don’t regret writing any of that, because at that time it was all true from where I was standing. It’s important to note that I was extremely depressed, and had been disappointed and disillusioned so many times. I had a primary care doctor who believed I was faking, no way of seeking relief except the ER, and I very much didn’t understand what was happening to me. At the time, open therapy was doing very little for me. I spent more time staring at my psychologist in total confusion than I did processing or talking things through. She would ask me questions like “what kinds of self-care routines are you doing on a regular basis?” and I would look at her like she had grown a second head, and she would push, “you must be able to think of one self-care activity, I don’t care how small it is.” I was still confused. Self-care? As in, my needs had to take precedent over others before I was at the point of throwing massive temper tantrums, crying uncontrollably in public and at work, and having ten panic attacks in one day? How was I supposed to even start? What did it all mean? Was this lady crazy? I was supposed to get better, not spend more time wallowing in “my needs”.

That’s my thinking a year ago. The level of brain fog I was enveloped in at that time is pretty evident, and there isn’t a lot of built in logic to my ranting, but I wasn’t even aware yet that my cognitive abilities had been taking a nosedive over the past two years. I knew I had Fibromyalgia, but I didn’t know much about it or much about what my life would look like in a year. To be honest, when I typed my response to that writer on National Pain Report, I didn’t even know if I’d be here in a year. Two girls with Ehler-Danlos Syndrome responded to my posted response on Facebook; one is a dear friend now but was someone I had just met at the time, and another I was too self-involved to reach out to in return. Currently, I am haunted that I didn’t reach back, more than I am bothered by anything that I did write. Reading through this outpouring of my own overly raw emotions made me wince, but seeing how I ignored another spoonie’s attempt to connect gave me actual regret. Both girls have EDS and encouraged me to push forward to a diagnosis.

I still don’t have the diagnosis, but I am treating my joints with much more care and attention and I am seeking physical strength instead of allowing fear of injury to mandate every activity.  I also do finally understand what self-care is and have a long, long list of ways to recognize and put disordered thinking in perspective, but I am still learning more every single day. I would no longer characterize my life as hellish. Some days are indeed horrible, but I have good days too, and I am more prone to seize them now than a year ago.

I feel gratitude and empowerment when I take care of myself these days, not selfish guilt, but it took reframing my thoughts, repeatedly. Of course I still forget to make myself a top priority sometimes. There are always improvements to be made, but I am confident (another new development) that I will continue to make necessary changes and seek out information that helps me cope. In the mean time I am trying to find joy in small wonders. Any little victory is cause for celebration. Today, I’m happy that I have made progress since my diagnosis. Visible, written down, real progress. All the hard work has been overwhelming at times, it has even felt like I have slid backwards more than I have been able to put one foot in front of the other and keep climbing, but in one short year, the small changes I have made have taken me a long way from not knowing if I wanted to be here in a year, to planning for the next five, ten, twenty years of my life. I am even starting a business with a close friend, something I thought was ripped out of my grasp by illness which has actually become much more possible because of the life adjustments I have made to accommodate the chronic pain that dogs my every move.

It just proves that accepting and processing what illness means for me personally, minus the guilty nagging voice in the back of my head, has made all the difference. I think others around me may be frustrated by how little I can seem to accomplish in a certain amount of time, but I now realize that this isn’t their journey. It’s my journey, at my pace, and that’s healthier than continuing to constantly feel like a failure for struggling to keep up with everyone around me. I don’t have a magic finish line that I can get to and be “recovered”. The best I can do is the best I can do, end of story. I will work with what I’ve been given, and I will be grateful for what I can do on any given day. Sometimes that means just breathing in and out for hours, nothing else, and sometimes it means charging at life like I don’t know what pain and illness even are.

 

Geography Cannot Stop Spoonies From Finding Each Other

Moongazer commented recently that it doesn’t matter where we are geographically, we spoonies can still find and comfort each other no matter where in the world we are, and I couldn’t agree with her more.

In fact, getting to network with people who live with and work around other health systems is beneficial to all of us. We all need to know what specific problems our spoonie friends in other countries have to face. None of us should have to fight the system alone. Ever. Together we can solve complex problems within our healthcare systems, but it takes a lot of networking and a willingness to learn what others are up against, especially in countries where it is very hard to have an invisible illness. I know it’s hard everywhere, but I also realize that I am extremely lucky to live in the US, even if it means I have to wait five years for disability to be approved, and my healthcare kinda sucks, and my pills are extremely expensive and the treatments that will most benefit me are either non-FDA approved (read: EXPENSIVE and hard to find and makes you look suspicious on your medical record), or they are off limits because of this crazed witch hunt involving chronic pain patients and opiate use. A topic for many more blog posts, for sure, but not the topic of this post.

Bottom line, others have it harder than I do by far. I don’t just mean that others are in more pain or have more broken bodies than mine, although that is also very true. I do mean that many fellow spoonies have no roof over their head, no access to the internet, no support networks, no disability to even try filing for, no access to any treatment or meds, and often no access to diagnostics either. The minor annoyances in my life, like not being taken seriously, is a major roadblock for someone who still needs a diagnosis, still needs at least one doctor to take them seriously and at least try to help them. What about places where new chronic pain research has not been circulated? So much of our knowledge of where the pain comes from and how real it is have changed, but without the benefit of that knowledge, many suffer inhumane hospitalizations for psychiatric disorders they do not have.

Moongazer’s sweet comment also reminded me of how my psychiatrist asked me if I knew where my blogging family lived and I looked at her like she was the crazy one, but the question also caught me off guard; I felt suddenly so defensive of all of you. We are not some mass hysteria, thinking everything is a conspiracy and no one in real life understands us. Instead it is more like huddling together for warmth with people I am actually proud to call my family, only on the internet. It is a chance to read about others who handle pain differently, to get to know them through their clever words and their important stories. It is a chance to comfort those who are newer to the chronic pain community, and reach out to people who I have admired as writers for years. Who could pass that up? Not I!

Why does it even matter? I have friends that live right down the block that I talk to way less than you guys! I also talk to my family less than I talk to fellow spoonies. I don’t mean for that to sound sad or complainer-y, but just that it is so amazing to have contact with a vast array of talented, witty, and inspirational individuals who do not force me to justify myself and who accept me as I hope to learn to accept myself.

I was very lonely, I won’t debate that, but I didn’t come here specifically to meet new friends. In fact, I thought I would be the worst whiner, off in the corner, unable to meet anyone because I was too bitter and angry. Being around people who understand has washed away the empty, bitter angriness, and replaced it with joy and determination. That is what my blogging family means to me, and so much more. I am beyond grateful for your support, patience, and kindness as I work through things that many of you have figured out long ago. It is such an honor to be allowed to learn from and reach out to others who live with chronic illness or chronic pain, and to see firsthand how strong we truly are together. ❤ ❤ ❤

Though I have to admit, now that I’ve been asked, I am curious as to how far apart we are spread. I would love to know what state or country everyone is from! I’m a proud resident of Oregon. The Pacific Northwest is beautiful and won’t let me leave for too long, though I’ve lived in Massachusetts and Indiana as well. I was born here and I love this state!

Drop me a quick comment and let me know where you live, I can’t wait to see where we all are from.

Project #SpoonieSelfie by BrainStorm

From the wonderful blog Brain Storm, I bring to you the #SpoonieSelfie Challenge

In her words:

Here’s the challenge spoonies:

Help me set the record straight by submitting your most scrunched-up, messed up, real honest-to-God pain face to annaeidt@gmail.com before February 28th, and I will publish a blog post that exhibits of collection of pain faces so real that people will laugh at us (because who are we kidding- these faces are ridiculous), but also see that our pain is often visible, just not usually to the world at large.

Please include your name, illness(es), and where you are from. [NEW: Also, if you like, include a little write up describing the pain you felt in that moment, and perhaps what coping strategies you were able to use.]

If you are feeling really brave, post your selfie on twitter @brainstorm83 or instagram @lousongmade with the tag #spoonieselfie.

Here’s a link to the actual post by BrainStorm: http://migrainebrainstorm.com/2015/01/17/the-spoonieselfie-challenge-2/


 

UPDATE: #SpoonieSelfie Challenge has been memorialized with two installments posted by Brain Storm so far! here they are:

Part 1. http://migrainebrainstorm.com/2015/02/14/this-is-what-invisible-illness-looks-like-spoonieselfie-installation-1/

Part 2. http://migrainebrainstorm.com/2015/02/21/this-is-what-invisible-illness-looks-like-spoonieselfie-installation-2/

To keep up with what she doing as she posts it, head to: http://migrainebrainstorm.com/tag/spoonie-selfie/


Here’s my contribution, from this last week when I fell on my face in the middle of the night! Fun times!2015-01-27 07.26.20

Check out that goofy concussion face! Mere minutes after smashing my face on some furniture because my hip gave out due to EDS/Hypermobility, and I had already not slept for 64 hours at this point, due to some horrendous #Painsomnia. Funny thing though, this very obvious injury hurts SO MUCH LESS than my smallest of fibromyalgia, costochondritis, torn discs and subluxated vertebrae, hypermobility, or chronic fatigue pains.
Even the moment of waking up on the floor with a bunch of blood in my hands was underwhelming, I’m so used to pain that I was just kind of pissed that my face was messed up looking and bleeding and would now obviously take some time to heal, but I never once thought “wow, my nose really hurts” because I still am in agony so much worse everywhere else!
Yet, for some annoying reason, I got so much sympathy for my raccoon eyes and purple, lumpy, swollen nose. I get very little for my invisible, disabling illnesses, even though they are the reason I have two black eyes and an almost-broken nose in the first place!

The night of the fall, around 4am, once I stopped the excessive bleeding with several kitchen towels.
2015-01-27 04.17.32
Currently, a much worse pain is making it difficult to even take a full breath. Forget coughing or sneezing, those actually do make me lose vision and control over my body (I hate the word “faint”). The costochondritis I have right now is so much worse than falling on my nose like a sack of dropped potatoes, and has been going on for over a week now.
The embarrassment was by far the worst part of the whole face-meets-furniture ordeal.
The silver lining is that it did provide me an opportunity to dialogue with people about my illnesses without seeming selfish or dramatic (because the rest of the time, if they can’t see it, I must be making it up). For my friends and family, I keep trying to connect the dots between my invisible illness and this visible sign of my body’s deterioration.

One day later it was a little more obvious in the raccoon eyes, but completely painless unless I poked the injury directly.2015-01-30 11.07.29

When I saw BrainStorm’s post about #SpoonieSelfie, I got a little more ambitious. Now I want my photos to help as many people as possible to understand that invisible disabilities can sometimes cause injuries that are quite obvious, but the rest of the time, even when my face doesn’t show it, I am still in pain, I am still dealing with illness every minute of every day. Many of us are so good at putting a smile on! It comes from years of practice, and the knowledge that negativity is not so fun to be around. The problem is, we are still hurting, and we are still fighting our conditions no matter how great we look on the outside. Saying “You look better, you must be feeling better” is like saying “I hate the font, so even though the story was great and the writing was compelling, it was a terrible book.” No?
 –
See, most of us are pretty skilled at smiling no matter what is going on. I get a lot of “I wouldn’t have known unless you told me” and I am always a little shocked, because it seems like the pain should always be obvious. Later, I’m relieved, because it means I still have an identity beyond chronic pain and illness and one set-back after another. People still see me as something other than my diseases and that is pretty freaking awesome, and instills a lot of hope; things can still return to some form of functional normalcy, some day, some how, some way.
smile anyway!
That is why Brain Storm’s idea for Spoonie Selfies is so awesome! Send your copies of your worst, most honest pain faces (think no make up, bed hair, bags under your eyes, crocodile tears, sweatpants, greasy skin, facial expressions and poses that happen when you’re at your worst, medical devices and piles of pills, etc,). Let the world know that invisible illness is very, very real! Submit your own photo/photos and support project #SpoonieSelfie by posting your pictures on social media with the above hashtag, and a linkback to the original blogpost: http://migrainebrainstorm.com/2015/01/17/the-spoonieselfie-challenge-2/. When you are done, send your pictures to BrainStorm’s email (annaeidt@gmail.com) so she post them at the end of the month. Please support and share her campaign throughout February, as she is an inspirational blogger running a very wonderful awareness campaign.

I want to thank Brain Storm for her energy and time and for the great idea of hosting this wonderful challenge, I couldn’t think of a better way to use these pictures. It definitely contributed to me being less embarrassed about the stupidity of painsomnia, collapsing joints, a concussion and just generally feeling like a failure for falling on my face in the middle of the night. Now it has a purpose! And I totally love her for that! Plus she posted this challenge on my birthday, so how could I not participate?!

If you haven’t already, now would be the time to go check out her beautiful blog, Brain Storm.
It is full of honesty, humor, and insight into the world of a chronic migraineur. Her writing is brilliant!
 –
Here are three of my favorite posts besides her #SpoonieSelfie call to arms:
 –
What are you guys waiting for?! Let’s share, contribute, have some fun with this, while educating people about your condition at the same time! Please participate in this challenge if you can, or share even if you cannot! The #SpoonieSelfie challenge ends the last day of February, so please have your photos posted on social media, tagged with #SpoonieSelfie and #BrainStorm, and sent to her email: annaeidt@gmail.com by February 28th at the very latest to be included in this awesome awareness campaign!

I Wear a Leather Jacket…. And I Love to Bake Bread, Can Jam, and Grow Organic Vegetables

I benefit greatly from living in a city where a girl with a motorcycle jacket and teal hair is approached by old ladies in the pharmacy waiting line so they can tell her how much they like the color. Those frequent encounters reinforce that I’m absolutely not weird compared to my city. I’m also not weird compared to any younger version of myself, each version I can think of readily would shake their head in disbelief that I am looking forward to someday having a child with a guy who *gasp* used to play football in high school and *gasp* still watches said games. She would be utterly disgusted that my favorite things are all so different (so borrrrrring) compared to what used to make the list. I think maybe that younger version of me was just trying too hard to be a stereotype I don’t actually fulfill, if I’m being honest to my own soul. So much has changed in me since I was a teen and I don’t want to be that cardboard cut out of a person, so easy to guess, so easy to figure out. Especially with chronic pain, I cannot afford to have such a flat personality.

So as I started thinking about it today, I went from bothered by my kinda strange hobbies to realizing something. In truth, all the things I worry will make me seem boring and “domesticated” are all the things that set me apart and keep people guessing. Lately I spend more time worrying about what will make me happy than what will make the people around me comfortable, which is a totally new thing for someone who used to be afraid to ask for a glass of water as a house guest. What makes me happy might not be exactly what is expected from my appearance, and I enjoy being a little odd like that, now more than ever.

Fall Pumpkin Harvest 2014

With me, what you see is in no way what you get, but then again, it very rarely is. This is a reminder and a wake up call to myself, that my life is not entirely about my disease. My illnesses are not how I introduce myself. Yes, being sick has caused me to no longer be able to work a steady job or drive unless it’s an emergency, and yes, it inconveniences and pains me every single day, and yes, there is no cure and the pills do not help much. It has made socializing terribly difficult, indeed. But after all of that, I still have to live whenever possible, and even some times when it does not seem possible in the slightest. The things I have managed to do while in pain in order to pursue my inner goddess of domesticity, they are not small things, even to most healthy people. People who know my limitations physically often consider my refusal to give up these last hobbies and passions as crazy. My family and close friends think I am nuts for baking my own bread, or lugging out the massive pressure canner for that bumper crop of tomatoes from my garden. The truth is that while these tasks hurt to accomplish, they also sustain me.

2014-08-11 11.10.39

The most important difference between working a few years ago and my much lesser version of “work” now: I don’t have to (and cannot) do it at a particular time. I don’t have to injure myself at someone else’s request over and over again all day long, I pick and choose what and when I do each thing. To say that my illness dictates my day is somewhat untrue. If it were true I would probably do a lot less than I end up managing some days. It would be easy to sit around all day and feel sorry for myself, and I’m not saying I don’t still do that some days. Sometimes I hurt so badly I would rather cut off several fingers than deal with another hour, and sometimes I cannot envision a life that adds up to anything while I’m burdened by these illnesses. It kills me to feel all my pre-illness plans for the future slipping through my fingers, and to have a lack of ability to contribute from both a financial and a physical standpoint.

Sometimes I feel like a monkey shot into space, left to slowly run out of oxygen, unable to control where I am headed or how long my ship holds up. Not a great feeling… but then I have to remind myself as gently as possible that my brain is a cruel liar in this area. I am not alone in space, spinning out of control, I am right where I need to be, taking it one day at a time. It helps to keep in mind that I am new to this and every single day and challenge I face is a learning opportunity. I don’t have to get it all right the first time, and I won’t. And that’s okay. Feeling hopeless and isolated is part of the process, as much as it hurts.

It was hard from the start for me to understand why I wasn’t supposed to tell people the name of this disease I had worked so hard to figure out, and which had such a profound impact on me in every area of my life. Why should I not be able to talk about my diagnosis? Had I not been diagnosed by a real doctor? I pushed back by declaring openly that I have fibromyalgia and chronic fatigue, to pretty much anyone who would listen to me, even for a little while. Explaining over and over and over again how certain symptoms felt, how I felt in the moment, how I had felt in the past, being as thorough and patient as possible while I was asked the same baffling array of stupid questions. Trying to be as insightful as possible, even though at the time I did not myself understand just how badly these two illnesses were embedded in people’s minds as joke illnesses, lazy housewife syndrome, etc. and how much I was being judged for telling my whole story. I didn’t care that I was oversharing, or bringing people down, or being a negative person, because to me I was just speaking the truth.

At first it was just a handful of symptoms, but then it became so overwhelming that I couldn’t keep track of them all and neither could my healthcare team. For the most part we do not know which symptom is caused by which illness, and which illness brought about the rest, or if they would have all manifested eventually no matter which conditions came first. Not knowing is okay too. Accepting that I may never know is finally a part of my story. It does not feel like giving up anymore. It feels like progress.

Getting to this point has meant a lot of sacrifice, I lot of crying and soul-searching and days of feeling listless, numb, and in serious danger of losing it at any second. I still visit those feelings often, and I know I will throughout my life, but they aren’t the end all be all of who I am. I am a painter, a gardener, an advocate for others, a seed saver, a baker, a friend, a lover, a person completely separate from the pain that I feel all of my waking and many of my sleeping hours. I will continue to have hobbies and passions and love in my life, no matter the effects that my illnesses cast across everything.

Garden Spring 2014

My favorite place to be! Here’s a glimpse of the raised bed garden we installed ourselves over two seasons. This is how it looked in late spring 2014 when we finally put in the last two raised beds, so it’s pretty tame and controlled looking. It’s amazing how much work can get done in just a couple of hours, or how I can lose a whole day wondering around pruning each plant and checking each leaf for signs of disease and malnutrition.

Appearances are so often deceiving, and whether that means that the crusty punk rock kid down the street will offer to help you change your tire in the rain even though he doesn’t own a car, or it means that I “don’t look sick” when I very much am, I think that’s just a part of life. We aren’t the neat little package we present ourselves in, and we never will be. I think we’re much better off avoiding labels anyway. Maybe that’s why I’m not so frustrated by that phrase as I know others with chronic illnesses are. It’s okay that I don’t look sick, because I also don’t look like I like to give frilly presents of jars of homemade blueberry jam and peach butter nestled in tissue paper, . But I am sick, and I do like to shower my friends and neighbors with art, homemade bread, pickles, jam, herbal remedies and laundry detergent, as well as homegrown produce. So obviously looks can’t tell you much!

We never know what we will find just below the surface. Sometimes we just need to look more with our hearts and less with our eyes. Healthy or sick, we are all so much more than our outer shells. I strive to be more than my illness as well.

On Pushing Myself

Throughout all of this blogging experience I realize I have made a mistake. I often write as though my body is this weak thing that never gets off the couch and that I never use like I used to. While it’s true that almost every day is a series of compromises compared to my old life where I never stopped for a minute, there is still actually very little time in my life for rest. I am trying to make more. I am trying to encourage others to make more room in their lives for real, relaxed rest. But I know how hard/impossible that is with people who depend on you.

My body is not frail and weak, not by design any way. In my past life, I used my body every day for real, repetitive physical work, and then I came home and worked in the garden and on fixing up our home. I find it hard to give up those habits of the past me. The problem I see with continuing on like I am, without ever learning how to put my rest first, is that I know people with fibro who work full time and have continued to work without stopping since their diagnosis, and I see those friends take handfuls of pills now to keep on their feet, and they are miserable every second of it. None of them have improved by relentlessly pushing through the pain. They seem to regard their bodies with pure hatred, and I feel so bad for their struggles. Not to say I do not know some successful working friends with fibromyalgia, but those who are successful have learned to adapt, change, flex, and yes, compromise. They are not attempting to live the exact same life as before their illness hit.

There is acceptance before there is success, with a chronic illness. Acceptance does not mean giving up, it means finding another way forward. I am trying to find that way, but I don’t know where to look.

The other aspect I must find is balance. From past experience, the less I move, the more I hurt the next morning. However, too much movement can also send me into a horrible flare up. Other times, it’s just the tiniest sneeze or attempt to tie my shoe that send me into a downward spiral of pain and nausea and anxiety. I cannot seem to figure it all out. The longer I sleep, the more I hurt the next morning. If I don’t sleep enough I hurt more too. On and on like that, until it becomes more evident than ever before that having fibromyalgia and ME means I live a life balanced on the blade of a razor. One wrong move sends me plummeting into an abyss. The climb back out of which is terribly arduous and depressing and takes everything I have, every single time.

Until I can learn to stop falling (with the understanding that it will get better but never stop completely) the best I can do is to become better at getting back up again. The falls are inevitable, really. My ability to stand back up, to keep fighting, is all that keeps me from staying at the bottom of the abyss.

This determination to keep going, it demonstrates beyond a shadow of a doubt that my body is not weak. It is fighting. I am fighting. FMS/ME can’t take everything from me.

I will keep pushing myself. And I will keep doing more and more physical activity despite the pain, but I will not pretend that I do not have these illnesses. Not to myself and not to anyone else.

I am not weak, I am still always on my feet, never napping, never stopping for too long. There are those days when I do feel weak, but it is temporary. And I am thankful for my still-strong, still active body. Though I am mostly housebound and cannot figure out driving or working with all my meds and issues, I do not sit in one place with my heating pad more than once a week, except at the very end of the night, in bed. I do not lounge on the couch, I do not lay down in bed. If I need to lay down, it’s usually the floor that I end up on, because I’ve pushed myself that far and suddenly I am done moving, and even crawling is a challenge then. Some days pass me by and I feel like I have barely even participated in them at all, and sometimes I have nothing to show for myself, no matter how many time I paced back and forth, doubled over in pain every few minutes, trying to remember to do a task that has slipped my mind, yet again. But wallowing in bed is not in the script. If it gets that severe, I will know, my body will force me into bed, but it is not there yet and I will fight with everything I have to stay on my feet even if I get nothing done, even if the pain has me by the throat and chest, and I stare off into space and create jumbled garbage when I sit down to write and paint, even if I doze off in my chair for a few minutes at noon, and snap out of it by using the pain of doing the dishes to wake me up. It’s war. Whatever means necessary, you know?

This is life, fighting a long battle with a group of cruel illnesses who are using my body as their host. Tonight, after I have spent all day floating in a strange haze, I cannot be angry at myself for doing my best today despite the severe brain fog that plagued my every heavy step. The laundry is somehow done, and I managed to take a shower for the first time in four days, which feels like absolute heaven. I am snuggled up in a long sleeve waffle knit, two layered zip up hoodies, leggings, loose pajama bottoms and two pairs of soft cushy socks. Yes, it’s coooooold here!

Being cozy despite not being able to get comfortable, I have to reflect that many are not warm inside this winter, and I am so lucky to be here in this house wearing all these soft clothes, clean and dry. Suddenly my world is brighter and kinder, and I am transported out of the pain of my body and into my surroundings, able to participate again for a brief time, and thankful for every second of it!

capturinggratitude

If it is a particularly painful or fatigued day. I will allow my body to dictate some of the events of the day, but not all of them. It is enough that I keep trying to find my way, right now. As long as I do not give up, then this is learning, and it is messy and unpleasant and even at times thrilling. There are things my body can still do that would not have seemed possible a year ago. But there is also the agony of steadily increasing pain over time, the horrible fear that my strength and toughness will be outstripped by my worsening illnesses someday. I cannot get rid of the fear completely, but I can choose to not let it take me hostage. Who cares what tomorrow brings, because there is no controlling that. However, I do have control over my reactions, and that is enough to get from here to a better place, in time.

I can choose to live, right here and right now, no matter what is happening with my body. There is so much power in that.

Fibromyalgia Palm Challenge!

Fibromyalgia Palm Challenge

I didn’t find out until the Fibromyalgia Palm Challenge until a few days ago, but I’ve been wanting to participate ever since. Finally, I got my chance!

Here is my response to the Fibromyalgia Palm Challenge:

Fibromyalgia Hurts. Everywhere. All the time.

Related Links:

Facebook Page for Fibromyalgia Awareness (A place to display your palm pics if you don’t want to put them on your own timeline, or do both for maximum impact!) Use #FibromyalgiaPalmChallenge in the message somewhere in order to make your pic easy to find.

Announcing the Fibromyalgia Palm Challenge Blog Entry on FibromyalgiaAwareness.com

Fibromyalgia Awareness Blog

Please help us spread awareness of this life-changing condition by snapping a picture of your palm with one thing you learned about fibro and the hashtag #FibromyalgiaPalmChallenge on Facebook or here on WordPress linking back to FibromyalgiaAwareness.com. You do not have to have fibro in order to participate!

For a short and sweet, but extremely educational post about Fibromyalgia, I recommend this one: Why Fibromyalgia Makes You Hurt From Head To Toe

Any and all sharing of the challenge or participation is appreciated!

Happy posting!!!

Consumed

I would literally rather have a finger chopped off (I have actually lost the top part of a finger right above the last knuckle so I do know what that feels like, I’m not just saying this in ignorance), maybe even two fingers, than deal with this cruel pain.

It starts in the back of my head and the base of my spine, and then the two painful areas spread out, reaching towards each other up and down my back, like it’s encasing me in a spiky shell made out of pure, unadulterated pain, then up, up, over my ear and it curls so evilly around my eyes. It is so immense. So sickening. So beautifully and radiant and piercing that I am unable to do anything but stay still and be consumed. I feel like a sponge being wrung out over and over again. There is no way to adequately explain the waves of pain cresting and rolling over my body.

I am misery. I am made out of twisting, tearing, crushing pain. Lightening is running through my bones, doing whatever it wants unchecked.

But this is right now. Tomorrow might be better, tomorrow is hopeful and waiting for me, if I wait for it.

I’ve written before about how tough it is, how draining, to wait without any end in sight. I often have to sit with a severity and kind of pain that consumes me, there is no other option. I do not have access to the correct or even halfway correct painkillers and muscle relaxers, Lyrica is a joke. I wish I hadn’t started taking it because it will not let me stop. I ran out of Aleve…. it was easier on my stomach than the mostly useless Diclofenac I have been prescribed. I can’t seem to take hydoxyzine without having worsening panic attacks or some awful, foggy, un-refreshing naps all day long, and propanolol was causing me disrupted sleep, worsening and more frequent panic, and severe brain fog, so I was told to discontinue using it. I could not write or organize my thoughts on either one, and my speech was declining as quickly as my short term memory. I do not think that Lyrica is helpful with my speech either, what with it’s toxicity to new brain synapses (post to come about that research later, when I can think). When you’re in a ton of pain and your supposedly super smart neurologist(s) tell you to start taking Gabapentin, then Gralise (the once a day version of Gabapentin) and then finally they land on Lyrica, you just go with it, right?

NO. No no no.

If only I had known that my doctors had no idea what was wrong with me at that time, that they were guessing in the dark, and that they were only getting slightly closer by prescribing Lyrica. They were also condemning me to a long period of taking pills that are highly dangerous to a fetus. I wish someone had explained that, because 22 year old me still knew she wanted kids pretty soon, illness or no illness.

For now, all I can do is tough it out, sit here with a level of pain that is worse than having a missing finger, even with all the non-narcotic pills and supplements I do have at my disposal.

How can that possibly be?

Because when a normal person chops off their finger in a freak accident, they have inherent opioids and opiate receptors inside the body, and a healthy body will send out lots of pain-dampening chemicals to keep the pain contained. I didn’t cry when the top of my finger got bitten through, but I did lose a lot of blood and go into shock eventually. Sometimes, even though I’m not losing blood or crying, I go into shock from the amount of pain that my chronic condition causes. For people in chronic pain, all the possible opioids are being flooded into the system all the time, almost completely in vain. Unfortunately, on top of this normal cycle of central sensitization that happens in many kinds of chronic pain, in fibromyalgia patients there are not enough opiate receptors to get any real relief, even if that constant flood of internal opiates was enough to help us with the level of whole-body pain we experience.

In the face of a spine full of invisible daggers, my body’s helpful ability to make opiates is next-to-useless. Unfortunately, chronic pain sufferers never get the natural rush of relief that comes along with acute pain.

It also means pain pills do not work as effectively for people with fibromyalgia. Some of the folks who need them most can’t even make efficient use of painkillers inside the body. Completely unfair, right? I think so too!

For now, I am waiting. I am not calling my doctor’s office frantically, although I may at some point today, and I am not sobbing hysterically even though I would like to completely melt down. I know it can actually be worse than this, as much as that seems impossible right now, because I have been in even more pain than this and sat with it.

It took years to get from “I will never accept that someone can just feel like this most of the time,” to “Oh well, what am I still able to do despite the pain, in between the waves?” It’s not an easy journey, but I can say that I am happy with the progress I have made, slow as it is at times. Like all progress, I go back and forth, not every day is a good day no matter how much positivity I pump into my life.

To be perfectly honest, I do want relief today, I can’t take this, and narcotics would absolutely help me do the many many things I need to get done but which will have to wait until tomorrow, at the very least, because there is no relief for me any time in the near future. Fortunately, I am still able to write, albeit slowly, and for that I am thankful. I know that it is a slippery slope with the painkillers that do help me, and I am 25, and I can sit with this pain again and again, and I can wait. It doesn’t not mean it is fair, or that I am happy with the situation, just that I know my will is stronger than this horrible pain. I will still be here when it recedes a bit, and that is all that matters right now. Half of me is trying to be calm and logical, but the other half wants to scream and cry and use up precious energy on fear.

I might feel like I’m being consumed by my pain at the moment, but in truth, I am pushing through the fire, and I will emerge mostly fine on the other side when this pain is done with me.

Here’s hoping that happens really soon.

Beauty: Peeling Back the Layers

I’m still getting used to the idea that I can’t be fixed, because I’m not broken in the first place. Everything good about me is still here. I am not worth any less than before I became ill.

Harder to get used to is the idea that I didn’t do everything wrong; that this is exactly where I need to be right now.

Hardest of all the lessons I am learning is that I too deserve to be happy and loved. I even deserve to love myself, for that matter.

Crazy how notions that seem so simple and straightforward, things I tell people all the time and think I understand, will refuse to fully sink in for myself until the right moment.

It took me until this year to realize that my vision of my own relative unattractiveness was based on something false all along, which is the idea that women (or anyone really), owe it to the world to be beautiful, pretty, lovely, and that some women are somehow more attractive than others based on a ridiculous set of rules guiding conventional beauty, which, hooray, most of us were brought up with.

We don’t owe the world a pretty outer shell! However we define that for ourselves, let’s only define it so we can junk that and write a new set of rules that direct us to look inward and associate things like honesty, kindness, generosity, and strength with beauty.

Society is Wrong

None of us owe it to anyone to look any way other than we were born looking. We were born as perfect as we are going to get, and there is no point in trying to be anything else, on the outside or inside. It’s a crazy realization, and it lifted some of the emotional fatigue and numbness I have been contending with lately. Of course I still can appreciate outer beauty, without associating it with a person’s value, and I do love to look at pretty pictures as much as the next person, so aesthetic beauty will always have a place in my heart. However, I vow to stop depreciating myself because I do not compete visually with someone else.

Being ill means that my looks just aren’t as important to me. They were never that important, let’s be honest. I frequently hang out in comfy tennis shoes, yoga pants, men’s band tees, and hoodies that are too big for me. I have always had so much black in my closet that when I do the laundry I’m just pulling one black garment off of the next until I find the fabric that feels right. I wore flannels and ripped jeans in the awkward in-between time when the 90’s forgot to leave the small towns in the Northwest, and before it came back into fashion in the bigger cities again. I promise I did have a girly phase that started about five years ago and the development of which has slowed to a crawl since being diagnosed with fibro, then adult ADHD, then one pain condition after another including CFS/ME, Occipital and Trigeminal Neuralgia, among several others. What effort I was beginning to expend on outfits and the occasional fully painted face suddenly went into surviving.

I am not proud that I don’t have the energy to shower every day, I’m not proud that I only have a couple put together outfits to wear outside of the house now, and I’m not proud that doing my make up is way, way too much effort even for special occasions; the best I’ve manged in years is powder foundation and a little bit of a cat eye with liquid liner. I’m not proud that the teal in my hair is more of seafoam green, and I haven’t had it cut by a professional in almost five years.

Here’s the radical part though: I’m also not ashamed. Not anymore. This is me as much as I have ever been me at any other time in my life. If it means I can work on a blog post or help my boyfriend with his homework or make one dinner this week, it’s worth giving up some time spent on the outer shell and focusing that precious energy onto far more important priorities.

I understand that to some, this sounds like allowing my illness to win. However, this part of my journey has been incredibly empowering. Would I like to effortlessly be considered beautiful? Of course, but only if I could still know for sure that the people in my life were in it for me and not the shell of me. Does it break my heart that I’m not thin and my eyebrows are too dark? Not anymore! I have more important things to worry about, and my shell looks just fine in the grand scheme of things. I look like I’m supposed to look. Not by dolling up myself up, covering things up, creating illusions and using smoke and mirrors to hide the things that aren’t considered pretty. Instead, I’m finding my beauty, the one I have had all along regardless of fashion sense, diets, and make up, and I’m finding it by peeling off the layers, one by one. Asking myself why these things are considered beautiful and then repeating the answer back to myself until it just sounds so silly and frivolous. In the process of gaining this insight and sense of self-worth for the real, permanent parts of myself, I am also humbled. I am not pretty because I have high cheekbones and almond shaped eyes, or because I put on expensive perfume or drew the most perfect pair of cat eyes on my lids. It’s okay to appreciate those things and recognize them, but assigning a value to aspects of our physical beauty is a losing game for everyone. What would happen if all that were taken away in an instant? You would still need to feel valuable, and guess what? You would still be valuable. That’s an important, seriously liberating concept.

Not Cute, But Strong

As women we waste such precious time, and teach others so many bad behaviors, by being so hard on ourselves and being hard on other women. I wish for everyone’s sake that this would stop. Just because another woman wants to dress up and have every hair in place, does not mean she is also brainless or any other stereotypical assumption I could make. It does not give me the right to tell my boyfriend she looks like a slut, because I’m jealous (read: insecure) of her legs in that skirt and those heels. What right do I have to treat her like an object? What do I know about her life? Maybe she hates wearing that stuff and does it because she was brought up in a culture where women behave and dress in a certain way. Maybe she loves dressing up; maybe it’s her creative outlet. Some women see make up as a lie, some see it as warpaint.

Nothing is as simple as it seems, and the more we assume, the more we pile the judgement on others around us, the more damage we do to ourselves. In the process of calling that girl a slut out of insecurity, I would also have been degrading myself, continuing a pattern of self-defeating hubris wherein I must be better than everyone else in some way, but also feel bad for the areas in life in which I don’t meet expectations. Why? Why can’t I be exactly as good, exactly as deserving, exactly as sexy, as the next woman? Why can’t the next woman be exactly as creative, exactly as kind, and exactly as thoughtful as I strive to be?

The truth is, we are all deserving, sexy, wonderfully creative, and thoughtful. We are not better or worse than anyone else. I am not better or worse than anyone else.

I think even within the spoonie community, sadly there is a culture of one-upping each other that is dangerous and undermines our strength as a whole. If we can’t trust fellow pain and illness warriors with our raw, real selves, who in the world can we trust?

Together, our voices are stronger than ever. Together we have the power to reverse stigma, to undo prejudice against the disabled and those with invisible illness. We can absolutely create a better world in which the chronically ill can lead fuller and more enriching lives. We have the power to make the world less lonely for others just by existing and sharing our stories. That is incredible! Before I was sick, I didn’t believe in my ability to change the world for the better. Now I understand that a life with purpose is the only possible way forward, and as a result I see potential everywhere to educate, to reach out, and to encourage those around me who need it most.

So here’s my style tip of the year: Own it. Whatever “it” is. If you’re not into pretty dresses, don’t force yourself to wear them. If you’re not okay being seen in your pajamas, that isn’t wrong either. Be comfortable in your skin, and kick standards of conventional beauty to the curb for good. No one else knows how we earned our gray hair, our medical equipment, our scars, our weight gain or weight loss, our wrinkles, or our battle wounds, but it shouldn’t matter. We should never be measured by something skin deep.

For years I have read the words of so many girls and women with illness, no matter age, and unfortunately the theme of shame over looks is constant, it’s instilled in the language we use to differentiate ourselves, and even in compliments we dole out. I hear the same longing to look “normal” and “not sick”.

Having a chronic illness, sadly the pressure to somehow keep up with the person we used to be is immense, specifically the pressure to look like the person we used to look like. Some of that pressure comes from within. Mostly it comes from a culture steeped in telling women what “beautiful” is, instead of letting us tell the world how we are each uniquely and inherently beautiful.

I think we should spread a new message to girls and boys alike: Beauty is not your looks, it is a state of being.

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I don’t think we need to get rid of the word or the concept of beauty, just rewrite its definition.

When I say someone is beautiful, I say so meaning they are beautiful in every possible way; that they are perfect the way they are, that they would still be perfect no matter what flaws are present or mistakes are made, and that they will continue to be just as beautiful as the years pass, if not more radiant still. That is the kind of beauty I want to encourage others to see: beauty that is layers and layers deep and only grows the more you get to know someone.

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"Life shrinks or expands in proportion to one's courage."- Anais Nin

chiaricontinues

chiariwife. chronic pain. awarness.

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