Archive | chronic pain toolkit RSS for this section

Seeing Possibility

Making Some Kind of Peace With My Pain

 

During my descent into illness, all I could see was what was being taken from me. When chronic illness kept routinely shaking up my life in new and horrible ways, I started to believe that there was nothing to look forward to, and the injustice of going from perfectly fine to not fine at all was unforgivable. It’s natural to feel that way, everyone grieves uniquely, and we lose a lot in the transition from well to sick. Grieving is permitted, encouraged, and part of the process of regaining strength. It’s not pleasant to be in that place, where all roads lead away from your dreams, all days blend together because of the pain, and because of all the sadness, fogginess, stress, and panic of becoming suddenly or gradually disabled. You may in that time lose track of who you are for a second, or maybe for a lot longer, because it seems like it is all going to be taken and not one scrap of the person you were before will be left.

Surely, in this storm I will blow away, and all that will be left is the space I take up and the burden I place on others.

That is one stage, and it is not possible to skip steps in the recovery process without being forced to revisit them later.

 

Take a minute with me to envision what you have lost. For instance, as my illnesses multiplied and progressed, I lost my ability to work, drive, plan a schedule and stick to it, work out consistently, go where I want when I want, grocery shop on my own, pay bills, feel accomplished, cook, clean, and there is the scary possibility that I may not ever be able to have children with my specific problems. I have lost confidence, I have lost my sense of place and I have lost my mission in life. Or have I?

Okay, upon second look, yes, I have lost the ability to drive, but not my ability to travel with others and see through other’s eyes. I have lost my ability to work a traditional job, but not my ability to create a new legacy through artistic endeavors. I have lost many friends and relationships, but those were not the people I wanted and truly needed to find. I have lost the ability to plan ahead, but found the freedom to enjoy the spontaneous little joys my body does allow. There is a good chance I may not be able to give birth, but I can still have a family built on love, and maybe some day I can even adopt. I have lost confidence but then found it again in the oddest of places, like this blog and in my artwork and jewelry making. I lost a lot, yes, but the gifts that took residence in those spaces and voids in me where I felt loss and grief are astronomically more important to me now than what I lost ever was. What I have now cannot be taken away. It cannot be undone or shattered by someone or something external. I can and do still have dreams and goals, and they are not all tinged with the bitterness of “but only if I could just ____. It would be so much easier.”

Easier is not always better. It might feel better for a while, but I’m the kind of person who has always needed a challenge to rise to, a place to test my strengths and get to know my weaknesses so that they can never destroy me. Illness and hitting rock bottom emotionally, physically, and mentally was that place. With the door to my previous lifestyle, abilities, and routines firmly shut behind me, and no idea where I was or where I could go from there, I somehow found the strength to lift my head and take that first stumbling steps towards the only tiny pinpricks of light I could make out in the inky void in front of me. In the beginning they seemed either so small or so far away that the journey was certainly pointless, but still, I missed daylight and fresh air too much, so I put one shaky foot in front of the other and moved, as slowly as I needed to, as fast as I could. Sometimes I crawled with my head down through narrow passages, in the direction I thought I had seen the light, and sometimes I got lost and had to double back. Sometimes the light flickered and I felt a cold rush of terror and emptiness.

At those times, I feared I would be stuck forever in this place, and there were points where I was more certain of that than anything else, but still I wanted more, and still I crawled toward the promise of less stale air, away from the rotting dampness, and towards the possibilities that those lights represented. I imagined that when I found them they could be so many different things, maybe just a forgotten candle abandoned along the path by someone else who had gone before, or maybe it would be the full daylight streaming in through a tiny crack in the darkness. Maybe I could find that crack and widen it, pry it apart with my bare, bleeding hands, sucking gulps of fresh air into my screaming lungs.

Of course I stumbled and fell, sometimes a great distance. I fell all the time. Falling became a part of the journey, and one I became increasingly comfortable with. Go ahead, knock me over again, throw me off a cliff. I taunted the empty darkness, not out of bravery but out of stubbornness. Clinging to any surface that seemed stable, my feet learned to anticipate the road ahead a little better with each steep, scrabbling climb and desperate push to make it just one more tiny, trembling inch towards the light.

As I pulled and climbed my way through the darkness, I began to see a glow ahead, not the bright streaming light of day, but I large mass of light ahead, hazy and difficult to make out, but there, somewhere ahead of me, above me. My hands clawed at the side of the cliff face I was travelling up, searching for the edge, finding it and then pulling for what seemed like forever, my arms burning and shaking, my fingers slipping on the stone. And then I was on top of the cliff, looking back at the dizzying heights I had climbed to, so far that I couldn’t even see where I had come from. There was just the black abyss in the direction I had previously travelled in. I turned my back to the deep darkness, prepared to continue my escape, not sure how I had made it so far or how far I still had to go.

As I faced my new direction suddenly there were hundreds of lights, some tiny, some larger. I was overwhelmed by how many of them I could see, in every direction. The darkness behind me gaped open, reached out its fingers for me, but I knew the darkness was a lie now. Just like going outside of a large city to watch the stars wheeling in the sky in some dark corner of the wilderness, I was seeing what had lain ahead all along for the very first time. It had all been there already, but like the starry skies, hidden by nasty pollution, obscured by the much dimmer lights seeping out from under the doors that had long ago slammed shut behind me, and blocked by rainclouds I could not control. Every period of pitch darkness that I learned to live through, every cliff face scaled, every strange twisting path taking me farther and farther from the roads I had already traveled, had been leading me here, to the warm mass of lights joining together.

Then without knowing where it had begun, I was on a road again, a completely different road. It was a clear, brightly lid road, with others traveling along side me. I did not know how long they had been beside me, but I saw these souls carrying each other even when they themselves were weary and their feet dragged. They pushed each other forward with encouraging words, with outstretched hands, and the path became more and more filled with light. I began to follow their example, finding people who had fallen down and supporting their weight until they could support themselves again. Ahead of me I could feel the first rays of sunlight as the night began to dissolve into the distance behind me.

I kept moving, my arms linked with hundreds of other men and women who were determined that we would make it, all of us. As the sun rose higher, thawing the frozen fingers of my traveling companions, turning our lips from blue back to pink, I could see that it was not merely hundreds I travelled with, but millions. As far as the eye could see, the crowd extended, all joined together, all making sure no one fell behind. Suddenly I remembered that in the beginning, when I fell, I didn’t always fall that far, and it had been those outstretched hands pulling me back to safety when I teetered on the edge. I may not have realized it at the time, but the small candles littering my path, the tiny flickers of warmth and truth, each beating heart that extended me love, had been with me in the cold, lonely night, too. We had not seen each other yet, but we were all heading in the same direction, some crawling, some sprinting. Fear evaporated, all memories of bleeding alone in the dark overtaken by the friendly faces all around me, the warm and calloused, well-traveled hands holding mine.

From the blackness where I had first found myself, alone and terrified, to the uncertainty of the tiny branching paths leading away from everything I knew, to the first time a hand touched mine in the darkness, and finally to the moment that the sun began to rise and I knew things would be better soon, this had been a four year journey of climbing out, scraping knees and shoulders, muscles burning, hands shakily feeling out the rough outline of objects blocking my path, while my feet unconsciously learned to avoid the dangerous patches of shifting ground that appeared frequently. The many falls, the hands who helped me stand up again, the unconditionally loving community of fellow travelers who had all stumbled their way, thinking themselves alone, through the darkness. Each person beside me now was as insistent and stubborn as I was. We had not been willing to die in the valleys and ravines that life had flung us down. Working together, even when we didn’t realize it, we had found allies in those who also fled the same nightmares. The bright of the sun rising ahead of us made the long, harsh journey fall away. I could see people hugging, celebrating, and smiling, soaking in the widening rays of light as they congratulated each other. There would be other dark nights to travel through, but now we were not alone, we were moving steadily away from the vast emptiness behind us, with millions more beginning the final stages of their climb towards the daylight, and millions more up ahead.

The climb out is shorter in the end if you pace yourself, if you do not fall as often, if you survey your surroundings with purpose, resourcefulness, and an eye for opportunity, but also for danger. Making the journey meant frequently taking a moment to scan the horizon for trouble looming and for the possibility of new paths appearing in front of me at any time, in any place. It meant that I could pause, but I could never stop. Even suddenly in the middle of the darkness, there can be a new object in your line of sight that wasn’t visible just a few steps back. You don’t know what’s out there until you start moving away from the doors that are already closed and seek out the road(s) leading to what is still possible.

Up until this past year, there would have been no way to know what was up ahead, or even what direction I was travelling in. I was doing my best, but my best didn’t seem nearly good enough. All that surrounded me was loss and grief, and though I tried to focus on other things, my mind was always drawn back to the negatives. Trapped in the cage of chronic illness and chronic pain, I saw myself as useless, I imagined my future was full of only mounting grief, I felt horribly selfish for getting sick, I could find nothing to love about myself and could not see how anyone else could love me either. Things were bleak and dark, unfair, stacked against me, and I didn’t want to have to be the one who was stronger than I felt. I wanted to scream, I didn’t want to be inspirational, I didn’t want to be friendly, I didn’t want to learn mindfulness or try to be more optimistic, I didn’t want to try to build a new, healthy life within my limits because the limits seemed ridiculous and, well, limiting. I just wanted a cure, and anything less was inexcusably, woefully inadequate. And that’s okay. That’s a part of the process. Some of us stay there for longer than others. There is no right and no wrong here, and no shame, only the eventuality of picking yourself up, or taking the hands that are offered, and trying again no matter what. There’s no denying that when you feel like you’ve lost your purpose in life, it’s tough to see the point in putting one foot in front of the other.

Who knows what drove me forward out of that place, who knows what strength I dug deep to find in myself, or if it even was my strength. Who knows where I found the courage to ask for help, or to take the hands outstretched to me, when I didn’t know what I had to offer in return.

All that matters is that I made it, and that others have made it, and that you will too, one day. In the future, there will be a time when you look back, and you will see how far you’ve come and how many people have helped you along the way, and you will marvel, because wasn’t life supposed to be over? Wasn’t everything supposed to be spiraling further and further into the realm of tragedy? But it isn’t either of those things.

There are awful parts, there are many of them, and there are times when I pray for death because I hurt so much and I have nothing that helps, but from here on out, I can remember that I am always arm in arm with millions upon millions of other pain warriors. Even through the darkest night, the men and women I march with are always right beside me. They make sure I get up when I fall, they pull me along when I cannot walk, they lend me light when my own candle burns out.

There will be other doors in my life that slam shut on dreams I have held dear. Chronic illness is not the only fight I will have to survive, nor is my struggle with illness and pain over. It continues, and I continue to move towards hope and light all the same. There is no going back, there is nothing there for me. Only sealed doors. If you are in that same murky darkness, you are not alone. The paths away from the places you have been shut out from, take them, take any path, because I promise that where you are heading is better than where you have been. Maybe not tomorrow, or the next day, but eventually. Daylight is coming.

The biggest, shiniest piece of advice I have to offer on living well with chronic illness is that the company here does not suck. In fact, that person whose writing, photography, art, or youtube channel makes you feel like they truly understand you, go talk to that person! I can’t promise something magical will happen, but you never know. Magical things have definitely happened for me in the friends and community I have made online, and every time a new and beautiful friendship arises, it has started with an honest expression of admiration that turned out to be very, very mutual.

 

 

Advertisements

Distraction Therapy, A Guest Post For AXIS Dance Company’s Awesome Blog, And Exciting New Business Ventures

I know it’s been a while, I’m sorry to leave anyone hanging, I did not intend to abandon my blog for so long. I have been very busy while I was away from writing, I promise! One of the last things I wrote before I went on hiatus this past summer has just been published, thanks to my brilliant friend Rebecca, as a Guest Post on AXIS Dance Company’s blog. The article I wrote covers the topic of distraction therapy in relation to managing chronic pain, something I am incredibly grateful for. This isn’t the reason I have been gone, but it is something I have been wanting to write about my experience with for a long time. Though it was written months ago, when I came back to read it yesterday, I discovered that it applies even more now.

Here is the link to the post I am so excited for the opportunity to have written:

JESSI CHVAL ON DISTRACTION THERAPY AND CHRONIC PAIN

Published on November 24, 2015

Blog Editor: Rebecca Fortelka

In the guest post, I make sure to include steps I have taken to prevent losing my creative force. There is a portion dealing with guilt that was especially appropriate for me to remind myself of this week. I also describe my top ten distractions and some of the ways I have modified those activities so that they are still possible to enjoy, maybe not every day, but regularly. I am seeing first hand that with practice, pacing, and modifications to favorite activities, you can still lead a fulfilling, richly creative life in the face of chronic pain or illness (or both).

One activity swap I have done is due to not having the energy or physical stamina to paint any more, at least for now. I was devastated at first. Losing painting hurt so much and left such a void, and my grief over not being physically capable of painting seems to come in waves. Knowing how far away from myself I feel when I can’t garden, paint, or cook, three of my more physical hobbies that used to dominate my free time, I took the opportunity to rekindle an old hobby; beadworking and jewelry making! I am loving every second of it, even with the arthritis in my hands, this is something I can do in bed or sitting up.

The reason I have been gone for so long is that I opened an Etsy shop to sell my jewelry and artwork. The shop is called The Hopeful Spoon, where I design, make, and sell Awareness Jewelry for spoonies, as well as Boho beaded creations for the free-spirited style-hunter. Some select pieces of artwork are slowly being added to the store as well. In one month of being open for business so far, I haven’t done half bad! Currently, I am averaging a sale every other day, which is about a quarter of where I need to be, but definitely gives me hope that I can meet my goal in the not too distant future.

Many people have helped me get started, and if I could continue sitting up today, I would give them each the credit they deserve, but that will have to be my next post!

For my readers, I have special spoonie discount codes, as well as two public coupons that are displayed in my shop announcement. The first code is 10SSPOONIE for 10% off of any price order, and the second is 20SPOONIE for 20% off of $50 or more! Happy holiday shopping, and thank you for checking out my newest artistic endeavors. I am loving having my passion for art back in my daily life. I hope you love the designs I have been working with as much as I love creating them. Here is a peak at just a couple of the goodies up on my new shop, with more being added almost every day:

iusb_760x100.17030474_gr53

Etsy Gallery

 

Glad to be back here again, and I can’t wait to see what new achievements 2016 will bring.

Thank you so much for reading my guest post at AXIS Dance Company, checking out my jewelry shop, or sharing either project. I have had a happy, silly grin on my face for days despite it being a really symptomatic week.

I appreciate all the help I have been so fortunate to receive from my spoonie friends, because it is your help that my relatively good first month of business is built on.

Don’t forget the coupon codes if you head over to my shop! They do not expire until January 31st.

Hope everyone had a very tranquil Thanksgiving full of all your happiest holiday traditions.

Ehlers-Danlos Syndrome Medical Emergency Information Cards

Handy to print out or save to phone in case you end up in the hospital: edsemergencycard

This card is to go with my post on How to Use the ER in Case of Chronic Pain Emergency, which has gotten over 50k views in just under a year! I never thought anything I wrote would be shared to facebook 10k times, or viewed 50k, or shared all over Pinterest, or anything remotely close to that, honestly, especially in my first year of blogging. I’m so thrilled and so thankful for the opportunity to share what I have researched and witnessed firsthand about living with chronic illness, chronic pain, disability, and mental health challenges.

I will be hunting down more relevant alert cards and posting as I find and edit them. Please feel free to leave suggestions in the comments below, and I will do those first!

#ehlersdanlossyndrome #emergency #alertcard #justincase #infographic #chronicillness #chronicpain #EDSawareness #EDS #hypermobility #dislocation #subluxation #JHS #hointhypermobility #hypermobility #severepain #EDSalertcard

from Instagram: http://ift.tt/1cOstTW

Trigger Points In Neck Could Cause Dizziness via Fibro Daze

by Fibro Daze:

What Are Trigger Points

In simple terms, a trigger point is a knot that forms in the muscle and sends pain to other areas of the body. Trigger points cause the muscle to become tighter and shorten. When muscles shorten, they cannot go through the full range of motion, altering the way you move, sit or stand. This leads to strength and flexibility issues, creating more trigger points.

Research suggests that fibromyalgia pain is largely due to myofascial trigger points. Therefore, treatment of trigger points will help manage the pain associated with fibromyalgia.

Trigger Points In Neck That Cause Dizziness

The trigger points in the neck that can cause dizziness form in the sternocleidomastoid (SCM) muscles. The SCM is a large muscle along the front on both sides to the neck. It is made up of two interconnected muscle bands. These muscle bands start out from the mastoid bone behind the ear. One band connects to the breastbone (sternum) and the other connects to the collarbone (clavicle). The sternal band lies on top of the clavicle band.

The primary functions of the SCM muscles are to turn the head from side to side and flex the head downward. The sternocleidomastoids also help maintain a stable position of the head during other body movements. Any position where the neck is held in an awkward position can create trigger points.

Another function of the SCM muscle is to raise the breastbone when you inhale. The muscle can become overworked if you breathe with the chest, rather than with the diaphragm. The SCM also assists with chewing and swallowing.

Symptoms Of Sternocleidomastoid Trigger Points

The effects of sternocleidomastoid trigger points can be amazingly widespread. Symptoms created by SCM trigger points include:

dizziness, vertigo and imbalance

blurred vision, double vision, excessive tearing, reddening of the eyes, drooping eyelid and twitching of the eye

hearing loss, tinnitus (ringing, roaring or buzzing in the ears)

migraine headache, sinus headache

nausea

sinus congestion or sinus drainage

chronic cough, sore throat

stiff neck

cold sweat on the forehead

continual hay fever or cold symptoms

trouble swallowing

What Causes Sternocleidomastoid Trigger Points?

Trigger points can be created by postures that keep the SCM contracted to hold the head in position -for example, looking at a computer screen or driving. Keeping your head turned to one side or holding your head back to look up for extended periods of time, are sure to cause problems. Breathing from the chest instead of the belly can also overwork the SCM muscle.

Here is a list of activities that might create SCM trigger points:

  • Overhead activities
  • Keeping your head turned to one side
  • Forward head posture
  • Holding phone with shoulder
  • Stomach sleeping
  • Heavy lifting
  • Falls and whiplash
  • A short leg or scoliosis or awkward posture
  • Stress and muscle tension
  • Chronic cough or asthma
  • Chest breathing

Sternocleidomastoid Trigger Point Release

SCM trigger points are easily self-treated. The SCM muscle group can contain seven trigger points. The sternal division typically has 3-4 trigger points spaced out along its length, while the clavicle division has 2-3 trigger points.

NEVER massage a pulse. If you pinch the sternocleidomastoid, rather than press it against the side of the neck, you will stay off the arteries.

Follow these steps to release the SCM trigger points:

  1. While looking in a mirror turn your head to one side. You will see the sternal branch.
  2. Grasp the muscle with your thumb and fingers curled into a C shape and turn your head back to face the mirror.
  3. Keeping your face looking forward, tilt your head slightly down and to the same side you are massaging.
  4. Press only hard enough that it feel comfortable and try to discriminate between the two branches. Each branch is about as big as your index finger. If you pay close attention, you should be able to feel them separately.
  5. Milk the muscle with short repeated up and down strokes, start in the middle and work your way up to behind your ear and then all the way down to the collarbone.
  6. If you find a spot that hurts, gently pinch the trigger point. Reduce the pressure until you don’t feel any pain. Once you’re below the pain threshold, slowly increase the pressure over 60-90 seconds.

Do this on both sides, a couple of times a day. Just go easy at first, and work at a pressure level that feels good for you. For a visual demonstration, you can watch the video and learn more at the original post, linked below.

via Trigger Points In Neck Cause Dizziness ».

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.

Tool Box : Resources for the chronically ill

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

My Chronic Lessons

Tool-Box

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

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

View original post 1,392 more words

Learn How To Rest

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

Maybe someone else could use it too?

Stock-Image-Separator-GraphicsFairy11

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

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

Love you guys!

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

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

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

7cupsoftea
 Free, anonymous, and confidential conversations. All sessions are deleted.

Stock-Image-Separator-GraphicsFairy11

10426108_324162374441586_795361327702660444_n

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

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

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

Volunteer Opportunity Alert:

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

Click here to begin the sign up process

Stock-Image-Separator-GraphicsFairy11

Suggestions?

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

So You Want to Date a Sick Person?

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

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

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

1. Think about it. Are you sure?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

8. No sympathy. Empathy, but never sympathy.

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

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

9. Talk with us.

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

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

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

Despite all of this

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

yesireallyamsick, dating, disability, chronic illness, mental illness, physical illnessinvisible illness, medication

Stock-Image-Separator-GraphicsFairy11

My Response to YesIReallyAmSick on Tumblr:

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

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

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

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

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

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

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

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

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

happiness

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

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

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

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

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

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

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

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

Self Care Isn’t Found at a Store

selfcare

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

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

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

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

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).

Awareness Ribbons Chart – Colors and Meanings of Awareness Ribbon Causes (From Disabled World)

Printable Awareness Ribbon Chart

via Awareness Ribbons Chart – Colors and Meanings of Awareness Ribbon Causes – Disabled World.

The website goes into much more detail, as well as noting extra conditions that are covered under each color/color combo. I’m thinking about doing all of the colors with each condition written on the ribbon in photoshop so that we can all save and post according ribbons if we want, without any confusion.

This search started, by the way, because a friend of mine from high school had posted a yellow ribbon as her facebook profile picture, and I wanted to know what cause she was representing, and the answer ranged from suicide awareness to bladder cancer to liver disease to supporting the troops. It wasn’t written on the ribbon, plus no clues were given via description, and that frustrates me. What’s the point if no one else knows what cause you are trying raise awareness for?

Anyhow, I will get around to that, but if illness interupts it could take some time. Hopefully I can make a resource page on this site where people can save a picture of the ribbon matching the condition(s) they have, to add to the bottom or sidebar of their page. And yes, when I do this, the first will be one for Chronic Pain all by itself, since many of us do not know why we are dealing with what we are dealing with, and many of will never know.

I might know a lot of you who fit into the “rare diseases” white ribbon, in which case, I want to make you a ribbon with your specific disease or condition or struggle, and you pick the color. Just drop me a comment, any time, either on this post or on the page I create later on. Post to come soon, hopefully with the first ten or so ribbons that are requested. I might do a poll on ribbon styling too…. it would be my first opportunity to use that option on WordPress!

Happy creative Saturday, friends ❤

I’m glad we all made it. This week felt like it just would not end, and I got next to nothing done. Hopefully this weekend I can shift gears, but I seem to be setting myself back with these big pushes when I get one slightly better day. Just so bored with this!!! I hate tv, so I’ve been trying to entertain myself other ways, and it’s hard! It’s only going to get harder when I ask my doctor for a heart rate monitor to keep track of my energy levels as best I can for a few months. Any time the damn thing beeps, I have to sit down. Doesn’t matter if I’m climbing the stairs, I gotta stop, sit down, record what time it is and what made it go off, and let my heart rate go back to a lower range. It sounds pretty frustrating, but who knows, it could provide me with some much-needed evidence-based data to share with my doctors, or it could provide me with just enough data to teach myself to live within my “energy envelope”. If you want to read more about heart rate monitoring and the logic behind it, check out these articles:

1. http://www.occupycfs.com/exercise-testing-and-results/

2. http://livewithcfs.blogspot.com/2011/02/heart-rate-and-post-exertional-crashes.html

3. http://www.cortjohnson.org/blog/2013/08/13/heart-rate-monitor-program-improves-heart-functioning-in-chronic-fatigue-syndrome-mecfs/

Distraction Therapy

Distraction Therapy and Art Therapy, rolled into one happy technique for doodling away the pain. I really do love this idea and immediately decided to go buy a few of these coloring books for adults!

This is one I sketched with pen and meticulously colored in with cheap watercolor pencils so as not to go insane while I was working at the Oregon Museum of Science and Industry, in the theater, in the dark, well before I had this kind of chronic pain or illness:

raindrops and ripples

I totally remember how calm I felt while I did this and think this might be a new favorite distraction technique. Big thanks to Moongazer for the wonderful idea and for sharing it with everyone!

 

Chaos, Cats and Chronic Pain

Distraction Therapy was first mentioned to me by an Occupational Therapist after my surgery but when I asked her for ideas (expecting her to have loads up her trained professional and experienced sleeve) she basically shrugged at me and googled ‘meditation’ o_O

So it is worth sharing snippets and suggestions amongst ourselves, methinks.

I find that sometimes, especially during a flare up of my FM, when the pain pills aren’t quite enough, sleep isn’t happening, and I am either too ‘foggy’ or bored or just plain restless for other things to occupy me – there is something I sometimes turn to as a distraction.

I have actually ummed and ahh’d a bit over posting about this, because I imagine there are people out there who might find this amusing, silly perhaps. But I saw another post about it the other week and decided Stuff it!! I will write about it.

View original post 384 more words

The Long Term Effects of Chronic Pain

Just another short and sweet, easy to print explanation of what even minor long-term untreated chronic pain can do to a person. A person without any other troubles or illnesses. Most of the issues discussed in this article are less life-ending types of chronic pain, but that just serves to further reinforce the point that any kind of pain if left untreated is unhealthy; it can trigger long-term issues with depression and anxiety, even rewire the brain, and can make it difficult to process even mildly disruptive daily events, such as bad traffic.

That is not nothing.

So many of us are in kinds of pain that are so far beyond this little pamphlet from a pain clinic, but the people around us often are not as aware of the little things that go awry when pain stays for too long and is not recognized and treated. I thought this was kind of a nice review for people who are new to thinking about or dealing with illnesses that involve never-ending agony.

Sorry, ignore me, I’m still not able to get this flare up under control, and it’s starting to scare me when I read about others who had their “Big One” in the onset years of their illness that lasted 6-12 months.

Do. Not. Want.

Even a good day is a fight for every positive thought; every scrap of willpower woven together so tightly just to do normal people tasks, inside my own home. On a good day.

Here’s the article:

The Long-Term Effects of Untreated Chronic Pain

Even minor pain, such as a stubbed toe or a paper cut, is unpleasant but that pain fades relatively quickly. Imagine being in pain that never fades, or that fades only to come back a few hours later. What would that do to a person? This is what people with chronic pain have to deal with every day.

Chronic pain, a diagnosis including arthritis, back pain, and recurring migraines, can have a profound effect on a person’s day to day life when it goes untreated. People dealing with ongoing or long-term pain can become irritable, short-tempered, and impatient, and with good reason. Constant pain raises the focus threshold for basic functioning, which leaves the pained person with a greatly reduced ability to find solutions or workarounds to even relatively mundane problems. Something like a traffic jam, which most people would be mildly annoyed by but ultimately take in stride, could seriously throw off the rhythm of someone who is putting forth so much effort just to get through the day.

After a while, pain wears a person down, draining their energy and sapping their motivation. They sometimes attempt to limit social contact in an effort to reduce stress and to decrease the amount of energy they have to spend reacting to their environment. Eventually, many people with chronic pain develop depression-like symptoms: lack of interpersonal interaction, difficulty concentrating on simple tasks, and the desire to simplify their life as much as possible, which often manifests as seeking isolation and quiet. Sleeping often makes the pain less intrusive, and that combined with the exhaustion that pain induces means that it isn’t uncommon for a person to start sleeping upwards of ten hours a day.

Some recent studies have also shown that chronic pain can actually affect a person’s brain chemistry and even change the wiring of the nervous system. Cells in the spinal cord and brain of a person with chronic pain, especially in the section of the brain that processes emotion, deteriorate more quickly than normal, exacerbating many of the depression-like symptoms. It becomes physically more difficult for people with chronic pain to process multiple things at once and react to ongoing changes in their environment, limiting their ability to focus even more. Sleep also becomes difficult, because the section of the brain that regulates sense-data also regulates the sleep cycle. This regulator becomes smaller from reacting to the pain, making falling asleep more difficult for people with chronic pain.

Untreated pain creates a downward spiral of chronic pain symptoms, so it is always best to treat pain early and avoid chronic pain. This is why multidisciplinary pain clinics should be involved for accurate diagnosis and effective intervention early in the course of a painful illness – as soon as the primary care provider runs out of options that they can do themselves such as physical therapy or medications. However, even if the effects of chronic pain have set in, effective interdisciplinary treatment may significantly reduce the consequences of pain in their lives. There are any number of common treatments, which include exercise, physical therapy, a balanced diet, and prescription pain medication. Ultimately, effective treatment depends on the individual person and the specific source of the pain. One thing is very clear, however: the earlier a person begins effective treatment, the less the pain will affect their day-to-day life.In addition to making some symptoms more profound, the change in brain chemistry can, create new ones, as well. The most pronounced of these are anxiety and depression. After enough recurring pain, the brain rewires itself to anticipate future bouts, which makes patients constantly wary and causes significant anxiety related to pain. Because chronic pain often mimics depression by altering how a person’s brain reacts to discomfort and pain, chronic pain often biologically creates a feeling of hopelessness and makes it more difficult to process future pain in a healthy way. In fact, roughly one third of patients with chronic pain develop depression at some point during their lifetime.

via The Long-Term Effects of Untreated Chronic Pain – Integrative Pain Center of Arizona.

Personally I think that depression statistic should be a lot higher… severe chronic pain almost always manifests some form of depression/anxiety/ptsd, although of course there will always be exceptions.

The number would certainly be higher if stigma against mental illnesses were lessened and people felt free to come to their healthcare practitioners with issues relating to depression without fear of being told to take a pill and get over it, or worse; threat of hospitalization.

Many of us have run the wheel before and we don’t need people mistaking our pain for what it is not, so we keep it mostly inward unless we find someone who really understands the myriad issues surrounding chronic pain, disability, and illness. Bottling it up wouldn’t be such a frequent reaction to stress, depression, and anxiety if we lived with a different cultural attitude toward mental and invisible illnesses.

But that’s for another post.

Wishing everyone a low pain day, with extra energy. ❤

Antioxidant Midnight Snack

Lately I have been obsessed with putting as much anti-inflammatory foods as possible in my diet. I don’t eat very often, and am often too nauseous or pukey to even try eating, so this has been a struggle. The key for me has been to find things that feel more indulgent than eating junk when I’m too sick to actually cook. That meant replacing ice cream or cookies when a late night craving hits with something to help my overall health and lower inflammation, and I have found a pretty stunning array of foods-with-benefits. 🙂

My favorite thing right now is a steaming mug of organic chai tea with a tiny splash of organic cream or almond milk and an extra sprinkle of cinnamon on top, served with a handful of whole dried tart Montmorency cherries and marcona almonds. Absolutely delicious. Full of flavor, full of good stuff for my body, and in no way do I feel like I’m missing out. In fact, I am totally satisfied making these kinds of substitutions and have much more confidence that I can and will stick with the changes I am making. Baby steps! This is just one of oh-so-many.

midnight snack

Yum!

How do you incorporate anti-inflammatory foods into your everyday diet, and what are some of your favorites?

Psychiatry Changed My Life For The Better

How’s that for an obvious title? Okay, I mean, seriously, you all know that chronic illness affects us mentally as well as physically, and it isn’t about being a “strong” or “tough” or “capable” person. It isn’t about being good or bad. It is just logic that feeling crappy physically will bleed over into every other area of your life, too. Sometimes we need help getting the thoughts and memories swirling around our brains out in a productive, constructive way. When I’m alone, the chances of finding productive solutions to my problems are much lower than when I work them through with a therapist, but until recently, I had never met a mental health professional who knew how to talk to me. My current provider is a completely different story. I am overjoyed that I took that first step and called her office back to set up an appointment. It is like everything in my life was on hold until I met her, and then suddenly I started to see options everywhere, where before I felt helpless to change my situation.

I have been in and out of therapy throughout my life, but only ever with psychologists and therapists, never have I had the opportunity to see a psychiatrist, though I have wanted to for a long, long, long time. There is a massive difference between open therapy with my past counselors and going to see my psychiatrist. First of all, she’s kinder than anyone else I’ve ever talked to. I am usually so self-conscious that therapy is useless for me, I can’t wind down enough to think clearly or say what I mean. Not so this time around! It’s not fun, and it is work, and I do struggle with being open with anyone about my past or my innermost thoughts and worries, but it is worth it, and she makes it so much easier than my last few tries with therapy.

Many of us already know that trauma in childhood and chronic illness later in life are connected, especially for women because the mistreatment actually leaves scars on two areas of the brain for girls, versus just one area of a boy’s brain that is most affected by trauma. Perhaps this helps to explain, in addition to other factors, why chronic illness is often seen as a “women’s issue” and Fibro is diagnosed in women four to five times more often than in men. Either way, childhood trauma, abuse, neglect, and rejection are all linked to physical pain, and that is not insignificant for many of us. What I did not understand was how it was affecting me as an individual chronic pain patient, or how to do anything about it.

The hardest part was deciding to go back for my second appointment. I instantly felt comfortable with her but I was still judging the entire situation the first time I saw her, and weighing the pros and cons of emotional vulnerability. I was having a relatively lucid day and I think I came across as a lot more put together than I actually am, but I’m sure she could tell that I wasn’t really. Deciding to continue with the second appointment was so difficult because I started remembering things I did not want to remember, and it would have been really easy to blame the fact that I was seeing a psychiatrist instead of the people who caused the trauma in the first place. I wanted to get out of having to work on myself, and when the flashbacks started a week or two after my first appointment, I thought I had a good reason to not see her again.

However, some small part of me was ready to face everything this time, and the rest of me followed reluctantly. I went to the second appointment, I was honest about the flashbacks, and I was honest about fears and issues I have had for so long that I was beginning to think they were normal. It felt terrifying, I walked out of my second appointment numb and shaky, but reassured that I had a partner to help me work through things I wasn’t ready to deal with all by myself. Though I was still not sure how I was going to cope, I felt lighter having let it all out of me and having someone actually hear me.

Fast-forward three months later and I am pleased to report that the flashbacks don’t happen nearly as much. I have woken up mentally in ways beyond just feeling better emotionally: I am more confident in my needs and my value as a human being as well as in my abilities, I am looking forward to the future by making plans that reach out years ahead, and I have more coping tools than ever in my arsenal against chronic pain.

I am not saying with absolute certainty that I could not have gotten this far on my own, but I know that if I did progress this far alone, it would have taken so much longer, and been very difficult, and who knows what the end result would have been, really, except that I am so, so, so glad that I’m not doing this by myself.

I would urge anyone who is on the fence about pursuing therapy to start with a knowledgeable, extremely compatible psychiatrist that they trust from the start, and to be as honest as possible no matter how terrifying. From there you can figure out the appropriate kind of therapy for you. Therapy isn’t a one-size-fits-all approach, in the slightest. Another major benefit for me was that seeing my psychiatrist helped to solve long-standing questions I had regarding the nature of my anxiety and inattentiveness, for starters. Getting the appropriate diagnosis can help so much fall into place that you weren’t even expecting, especially if you’re like me and you feel a need to try to fit the puzzle pieces together as much as possible.

The work is certainly not done (and it will never be), but it is started, and that is pretty awesome considering how stuck I had been feeling the past two years. Just by getting a little bit unstuck, I no longer just survive my days, hoping for each one to end as quickly as possible. Wanting to change and not knowing how is both frustrating and overwhelming. I’m much less frustrated and overwhelmed now that I have an ally in my mental health and am learning the tools to carve out a life for myself despite severe and yes, depressing, amounts of pain that I deal with every day. I’m learning to stigmatize my own mental health less, to avoid behaving like a victim in areas of my life that I am not helpless in, and to look for positives in places I would not have bothered before.

Just writing that I was gaining ground six months ago would not have been possible and here I am, trying to write about it as often as I can.

If you’re feeling stuck, just keep looking for your opportunity, and know that it will come.

Until then, you’re doing your best. You are good enough. You have value and choices. People care about and love you, even if you don’t know it yet.

Wishing everyone extra spoons and days with less pain than usual. ❤

Gotta Laugh

I just can’t get over how talking to a friend from the same small town I am from reminded me of being a child and hearing all the times someone told me to eat right and exercise. And all the times I blew that off and ate a cookie or smoked a cigarette or decided not to work out. What made me react to perfectly good advice like a dumb-ass? Who knows! Who cares, kids don’t do everything with the same logic that adults do (not to say that their logic is less! It can certainly be more astute sometimes) and that is behind me now.

As an adult who suffers from chronic pain and has been through almost every treatment and test and minor procedure to attempt to lessen that pain somewhat, and who has taken every pill and every supplement and every “miracle cure” and hoped so badly that something would work, I am finding that all I am left with are lifestyle changes. Fortunately, they are lifestyle changes I have wanted to make for a long time, but have not had the courage to pursue. That’s changing now, I’m starting to realize that yes, my body does hurt every second of every day, and yes, I can still be happy for hours at a time despite that.

Being ill has taught me that all those things we shrugged off as kids, all the health-class reading and the boring PE classes; that stuff actually mattered. What the hell, right?! In all seriousness though, that is really the end-all-be-all of managing my chronic illnesses and pain. I’m not great at always eating the right thing, and I sometimes skip sleeping, eating, and working out, because of illness, but in between not getting it right, I have to keep trying. I’m finding as time goes on I get better at certain things, but my progress is almost so gradual that I miss it if I am only looking at the ground gained from one day to the next, instead of the big picture. Looking back I can tell that certain things have shifted, for good. For the first time since I was 13, I am avoiding frou-frou coffee drinks, and there is usually NOT ice cream in the freezer these days! I have been craving things like salmon, cabbage, tart cherries, and homemade low-sodium pickles. Weird, and no, I am not pregnant. 😦

Some of the other changes I have made are slowly incorporating a regular amount of movement into my days. I now know that I feel worse, not better, if I sit around all day long. Even if I’m not up to working out or exercising, I have to keep moving throughout the day to avoid making my symptoms even worse. When I am up to it, I split my work out time into two or three 10-15 minute sessions of stretching, very gentle yoga, and super light arm and ankle weights. I focus more on my breathing than anything, and at least six times a day, no matter how awful I feel, take a few moments to regulate my body by breathing deep and slowly into my lungs, focusing on my belly rising and falling instead of my chest. It helps with pain to breathe like that, but it also helps long-term too, by forcing more oxygen into my tissues, which is a major problem for people with fibro.

My morning coffee drink is no longer overrun with fake, bad-for-me ingredients and now I add organic milk and coconut sugar (try it!!! it is the only low-glycemic sugar that I have actually enjoyed more than raw can sugar because it isn’t quite as sweet but is full of flavor and essential nutrients like zinc, potassium and magnesium!). I do not bake as often which cuts out most of our sweets around the house, and I try to buy only whole foods. Recently I have begun to include a 100% fruit smoothie in my day as often as possible, instead of the dairy based smoothies I used to make. I take probiotics every night with dinner, and I will never stop taking them.

Most exciting of all, I have begun to get off of Lyrica. This means so much to me, I can’t even put it in words. I wish someone had warned me that women of a child-bearing age have no business being on Lyrica if they actually do want children. Which I do, and have for quite some time, and would have caused me to find something different to take instead of the Lyrica, had I been warned. Lyrica causes some severe neural tube defects, often leading to miscarriage or at the very least developmental delays. I am not dooming my future child because of my inability to deal with the severe pain I am in, it just is not how this is gonna go. So starting December 26th, I have gone from taking 3-4 of the 150 mg pills every day to only taking 3 of the 75mg! Down more than half from my old dosage, and ready to start taking just 75mg every twelve hours and seeing how that goes! I kept a diary for the first week as I started to get off of it and then trashed it because every day sucked, for the first two weeks. I allowed myself to level out to a place where I wasn’t throwing up every day again and didn’t have the pounding, blinding migraines and gnarly headaches, skin crawling and lots of increase in my neuropathy and radiating nerve pain from pinched and torn discs in my spine, but I’m gonna see this through this year. I do not want to live with the loss of short term memory and feeling of complete apathy that washed over me while I was on Lyrica. And yes, that means those things, my emotions and feelings and everything I had been shoving down successfully have bubbled to the surface, and I have been forced to actually deal with my emotions instead of pretending they don’t exist. This is all good, I believe, but it hurts, and it’s been rocky for both me and my partner. Poor guy has seen me go through every shade of depressed, hopeless, negative, manic, hyperactive, over-sharing, impulsive, and mostly whiny that I am capable of. He loves me still, so I think he’s a keeper! 🙂

Other weapons in my arsenal right now include affirmations, journaling with an actual pen and paper, being honest with myself and the people around me about what I’m going through and what helps vs hurts, and remembering that the way I feel detoxing is not the way I will feel forever. I just have to keep looking forward, and keep making these plans and dreaming again for the first time in ages.

The longer I have this much pain and sickness every day of my life, the better I learn to work around it and deal with it naturally or at least work with my body instead of just suppressing its natural instincts. I have realized that big pharma has only so much to offer me, and in many cases it isn’t worth the cost, both literally and figuratively, of taking a drug that only masks symptoms instead of treating the root cause. I know I’m not the only one who has really struggled going full circle from all-natural, all-homeopathic remedies as a young adult, to taking handfuls of pills every day a few years later, and back again to attempting to distance myself from harsh medications with a meditating, herbal-remedy-taking, eating-right-and-exercising lifestyle. Not that my doctors ever told me not to eat healthy or not to exercise, I’m just saying that offering a pill was usually their first line of defense. Then, when that didn’t work they would tell me to walk it off or to learn “self care” which I did not even understand a little bit at the time. It made me angry (to put it mildly) for over a year. Now I just gotta laugh, because I literally say to my friends and my boyfriend at least once a day “oops, I’ve been sitting for too long, I have to go walk around the yard or stretch now so I don’t get worse,” and I have noticed so many good changes in both my mood and my body as a result. Not that my symptoms are diminishing noticeably or that I believe I can be “cured” by my renewed interest in healthy living, but it is honestly the best and most hopeful treatment I have tried since receiving my first diagnosis over a year ago. Hope is everything when living in such overwhelming pain and with so many other debilitating symptoms running the show most days.

Chronic Pain Toolkit: Using a To-Do List App to Improve Organization

Getting organized with chronic pain is no small task. But it is necessary on so many levels. One of the major secrets, the dirty untalked about secrets of the chronically ill, is how hard it can be to stay on top of even basic daily tasks no matter if you’re having a good pain day or a lousy one. Being disorganized can make it hard to take spontaneous advantage of the good moments, because we often feel overwhelmed and out of control all the time. Reducing mental clutter is the antidote, or at least part of it. Since I didn’t exactly start out organized, it’s been an uphill battle, one I probably wouldn’t have been prepared for if I hadn’t been fending off chronic pain and illness for years.

I have always had some pretty wicked ADHD that I hid throughout childhood with a high IQ and a love of books. I could still focus, sometimes really, really well, but only on things I deemed interesting and not too intimidating. As a kid that wasn’t such a big deal, it just meant I never progressed beyond my fifth grade abilities in math, and that I almost never turned my homework in. Somehow I still managed to be a merit scholar in high school and get mostly good grades. At the time, I used my then-resourceful brain to figure out how to navigate around the many daily challenges brought about by a complete lack of focus. I did so by setting up reminders for myself, making tons of lists, setting alarms on my phone, sticky notes on the walls, writing on the back of my hand long after it was considered socially acceptable, and generally learning how to fake that I had my shit together.

Unfortunately, my ADHD and forgetfulness have only been getting worse as I age. And then, lucky me, chronic pain and brain fog got added to the mix just over three years ago. Even worse, the IQ that I used to rely on seems to belong to some other person I barely recognize now; my brain feels walled off from me by layer after layer of cotton. Every now and again I get a glimpse of the old me, the smarter me, but it happens less and less.

Eventually, it got to a point where I couldn’t stand by, watching my brain wither in front of me. For the longest time, I was finding myself frustrated to the point of tears, often multiple times a day. Not from pain usually or even frustration about how long I had been in pain, but instead from how hard it was to remember even basic things. It was an adventure, a frustrating one, trying to keep a thought in my head long enough that I could find a pen and notebook and jot it down. I love lists, but all of them summed up, spanning several different notebooks, often scattered about the house and used by other people… it was all starting to drive me insane, not to mention take up too much space and time. I was losing very important information like appointment times, phone numbers I needed, receipts, everything was getting lost!

The definition of insanity is doing the same thing over and over again, so I decided to stop crying about my frustration and start trying to make changes. I downloaded about a dozen different To-Do List apps, all free, all promising me increased productivity and less mayhem. The first few I tried just made me angry. No way to reorganize the list, clunky slow programs, things that worked on the tablet but not the PC and the other way around, no way to keep crossed off items visible, no way to make different lists or different subheadings within each list. I was just wasting more time, and getting more frustrated. Keeping digital lists seemed like it was not going to work for me. Then I started using ToDoist, and for the first time I had some hope for an organized brain, and a few more glimmers of the old me!

Oh so many notebooks have been saved from my scribbling and constant list-making by this app! I downloaded it specifically to keep track of each online earnings website I am a member of. It has made the whole experience of making money online manageable instead of the complete mess it would otherwise be. Under the website names, I list each task I do that gives me a confirmation number to keep track of, and I keep my earnings up to date on each website. I also keep track of how many times I have cashed out on each website, what referral programs they each offer, what requirements there are such as cut-offs for cashing in, and the date of pay out if they only do so once a month, as well as due dates for canceling trial memberships.

With my newly downloaded app in hand, I started transferring my piles of written notes and ideas into organized sets of lists with subheadings and due dates where appropriate. It took a while, but I finally got all of the most important info about my life into the app and I am so proud of myself! I use it multiple times a day because it syncs across my tablet, phone, and laptop. It saves itself every time you enter a new line. A major bonus to me is that you can share projects with friends or invite them to help you finish a list, which is perfect for the at-home business I’m starting with a good friend in the beginning of 2015. Consistency is usually a problem with me, especially with the ADHD, but once I see a benefit, it’s hard to go back to a less efficient way of doing things. Right now I’m using the ToDoist app constantly on all my devices while I brainstorm, when I think of needed groceries, and to keep an organized, up-to-date list of medical information, in addition to a current list of my online earning activities.

I really have been striving this month more than ever before to be as organized as possible, and ToDoist helps me because it makes keeping track of my whole life so automatic and easy. Using ToDoist to record everything has allowed me to let go of the nagging thoughts that were occupying my brain so I have more room for the bigger stuff that really matters. Sold!

example of ToDoist in use

Someone’s example of the ToDoist due date feature in use, found on Google.

In general, I feel much more in control now that I am using ToDoist instead of keeping four or more different notebooks with me all the time and still not being able to find that one thing I need. Plus there are keyboard shortcuts to help improve productivity with the app even more. Love!!! I am still going through all my really old paper lists, like pages of handwritten records of what seeds I have saved for my veggie garden, and pulling information I need out of them to put into the app. This whole process has been the second best thing to replacing my broken, useless brain with a new, improved, cleaner, less anxious one. Going back through those old lists I can see all the things that I have accomplished in the last year, despite all the brain fog and frustration, and I am not feeling as hard on myself as I was before I saw all of that progress on paper.

Another nice feature of ToDoist that keeps me organized is that I can add due dates to each thing, and then I can easily see what out of all my various projects is due today, this week, and later on this month. Once I cross something off, it stays on the list, just in a lighter shade, until I delete it purposefully. That is perfect for me, sometimes I need to see all the steps I have taken previously in order to figure out a project. Having due dates for posts I’m writing, like this one, has helped me focus first on what needs to get done each day instead of floundering for hours, wondering what I should be doing. I’m considering that alone a huge victory because my brain fog often will not let me remember something long enough to even find a pen to write it down. Sometimes I used to spend hours looking for something I completely forgot to write down in the first place. This is much, much, much better!

Plus it’s free!

Here’s the official website:

ToDoist Download

And the Google Play store link:

ToDoist on Google Play

Chronic Pain Toolkit: Affirmations

Gaining Ground Despite Chronic Illness

Since I first started going down the rabbit hole into the land of stranger and stranger medical mysteries, I have been losing things.

For three years, all I could see were the things that were slipping through my fingers, and I grieved considerably for each loss. I lost my job, my ability to drive, my self-respect, my future, and even at one point I let myself believe that I had lost the ability to be a good mother when the time comes. My grief was so strong that it blinded me to the possibilities that were opening up in front of me even as other doors closed.

Change is scary, from going to a new school, being diagnosed with a chronic illness, or starting a new business, newness is challenging. For myself, I had to learn to accept that I cannot change the stigma against Fibro alone, and I cannot make my doctors or my boyfriend or my mom understand it, but I can and have found others out there who feel what I feel and struggle with burdensome illnesses.Through reaching out to people in similar situations, I am hoping we can bring out the best in each other, and that is exactly what I have found here. Within the chronic illness blogging community there is so much support and enthusiasm that I can’t help but get swept up in it all. My healing process didn’t really begin until this blog got up and running. Yet, I have to remember that even once started, healing does not look like a straight line, especially with illnesses and conditions I will have for the rest of my life. I will always have very, very, very bad days and then there will always be awesome days to balance them out.

There is considerable strength to be found in just living to the best of my ability. Easier said than done, but a goal for me to aim towards!

There is no simple way to make the illnesses we face easier to confront, or even to take away the pain for a single day, as much as I wish otherwise. We spend our days fighting an invisible monster called Pain, and every day he is there when we wake up. We do the best we can, whether we are battling our illness from bed, from crutches, a wheelchair, a scooter, or our feet, every day is a marathon for us.

When we start to feel like we’re losing control of everything around us because of chronic illness and pain, the place where we have most control is in our self-care and self-love, which I couldn’t even fathom until I began to write a page of weekly affirmations. In the midst of the fear and chaos is acceptance. If you are in the grieving stage, I promise, acceptance is the best thing since sliced bread. It doesn’t happen overnight and it doesn’t happen easily all the time, but when you look back, you’ll see how far you’ve come. And it is worth it. We all deserve to accept ourselves, illnesses and all. If acceptance is an area you struggle in, why not try jotting down self-compliments or reassurances. They can be all the things you wish people told you, it can be all the things you believe about yourself, it can be as simple as saying “I am passionate about writing and I have a lot to say”, “I deserve to be loved”, or “last night I got enough sleep” or as complex as you need them to be. I feel like I’m not even writing when I do this exercise, the words just spill onto the paper from somewhere deep inside of me. I guess I must have been not allowing myself to think positive, comforting, reassuring things for a long time. I don’t know why, but I do know I have an awful lot of affirmations to get off my chest.  Certain ones I find myself writing over and over again each week and sometimes on other days as well. These seem to be things I have a hard time believing, but which are important to me none the less. Someday, hopefully even these hard-to-digest messages of self-love will begin to sink in, and gradually, as many of the other affirmations have, they will become a part of every day outlook. Affirmations have helped me gain so much that I didn’t even know I was missing. So instead of losing things, now I can focus on what is still there, what is inside me that I can love and share with the world.

If you’re looking for a good way to start 2015 off, writing down a list of positive things about yourself can change your perspective on life. It can give you that boost of self-esteem and motivation you were looking for. It’s easy, painless, and you don’t have anything to lose! I bet you will be amazed by what you find out when you start writing. ❤

I hope that everyone had a wonderful weekend!

Undiagnosed Warrior

Be brave, little fighter. There's a warrior within you.

moderndaywarriorprincess

Because All Women are Princesses & are Stronger Than We Ever Knew

Quinn's Cauldron

The Traditional English Witch, Rowan Quinn

Hypermobility Syndrome India

information and narrative

Lyme & Co

A therapist's journey through Lyme Disease

iamchronic

Writing Through The Tragedy And Terrible Beauty Of A Life In Chronic Pain

No More Silence. Speak Out Against Domestic Violence.

Silence Enables Violence. Find Your Voice.

Hannah's Battle to Breathe

Living with a chronic illness: the ins and outs

%d bloggers like this: