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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.

 

 

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:

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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.

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.

Geography Cannot Stop Spoonies From Finding Each Other

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

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

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

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

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

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

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

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

My First Year of Blogging Felt Awesome!

This is actually my 50th blog post! Hooray, I made it! Thank you all for your support and help as I got oriented here and slowly transitioned back into writing again! I have met so many amazing souls through this venture! Hopefully by this time next year my blog will be much better established, I will feel more confident in my writing abilities and organizational skills, and I can start to use this place as a way to give back to the chronic pain community. As I move forward into acceptance and learning to live with more joy and awareness despite chronic illness and incessant pain, I know in my heart that I couldn’t have done it without a creative outlet, one that was provided to me here on this blog just in time for me to start my journey.

Right now I’m drinking a very rare hard cider, listening to my boyfriend and his best friend watching the Rose Bowl with animation and actually enjoying myself. I need to do this more often! Not drink, I mean I need to relax and dedicate some time to feeling good and being around enthusiastic, funny people. I could care less about football, but it’s fun to watch them having a good time. I know I often am in too much pain to tune into what is happening around me, and even then it’s hard for me to focus. It’s really nice to be able to take spontaneous advantage of one of my better days and giggle like a teenager again. One of my biggest laments last year was that I had forgotten how to have fun. Days like today remind me that it’s not impossible to have fun, it’s just not as easy as it used to be. The rare good days are what I will remember later on though, so I just gotta start living them to their fullest!

Also, is it weird to give your neighbors rolls that they have to let rise for an hour and then bake themselves for ten minutes? I didn’t even think about it until I was trying to explain to her how to finish them off. Sometimes I forget such simple little things! Meaning well, but not thinking it through, lol. I don’t look at a recipe while I make them anymore, they’re so automatic and fool-proof (as many milk-based doughs are) and the recipe is permanently embedded in my brain. Since my boyfriend bought me a Kitchenaid stand mixer I have slowly gotten back into bread making and at least twice a week (whenever possible!) I make either pizza dough/focaccia bread from the same recipe, or rolls/cinnamon rolls from another recipe. For special occasions I make pretty artisan loaves of bread whenever my body will allow.

Nothing is so satisfying in the kitchen as pulling a loaf of fresh baked bread or a homemade pizza out of the oven. That is, besides the popping noise my canning projects make as they seal, one jar at a time. That’s a pretty lovely moment, too!

Happy New Year everyone! Wishing you all many, many lovely things in the year to come! ❤

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 1,800 times in 2014. If it were a cable car, it would take about 30 trips to carry that many people.

Click here to see the complete report.

Random Acts of Kindness

This week I stumbled onto a secret I used to know, but which I thought maybe didn’t apply to me anymore since I am less able to do the things I used to do. I am less able to go out of my way for others, was my reasoning. I don’t have the energy, I can’t even shower but once every four days, I’m constantly hovering between a 6 and an 8 on the pain scale, so what do I have left to give to anyone else? What could I possibly have to give to others that was of any value, with brain fog, fatigue, and such tremendous pain and emotional distress.

I stumbled on the secret by accident. I’m have had a particularly bad week on every level, so I wasn’t planning on trying to be the saver of the day for anyone but myself, and even then…

Yesterday everything kind of crystallized into that perfect storm of craziness and incompetence of doctors/insurance and difficulties communicating my needs to others and feeling like maybe I haven’t really learned anything at all from all this searching for myself that I’ve been doing. I was wondering what the point of it all was. How am I going to get through living with an illness, having my medications held up every single month for the most stupid, but constant, oversights on my doctor’s part and absolute asshole-ishness from my insurance company? How am I supposed to live with myself when I have no job, I do not seem to be getting better no matter how hard I work at it, and except for my day to day mindset, nothing symptom-wise has improved this whole stressful, grief-filled year. The day before yesterday, having the ability to control my reaction to the situation just did not seem like enough. I flipped out on Marc, the manager of the pharmacy, a guy I admire and love talking to and a guy I have cried at and yelled at many, many times. He’s a saint. It was nowhere near a mistake he made or had any control over.

I was being unreasonable, childish, horrible. Not the person I want to be. I kept repeating the things other people had told me, that I could pick the prescription up on the 4th or any time after since I was having to take more of them once or twice a week due to extreme stress, flashbacks, and anxiety that feels like I’m dying, that I had been taking only half strength dosage for almost a week because it was a full seven days since it was supposed to be filled according to my prescription. I whined pathetically that I had come in on Saturday and asked them to call the doctor on Monday and make sure that she changed the instructions on the prescription, and no one had done it yet, but he wasn’t even working on Saturday so it wasn’t his fault at all. I yelled a little that the insurance company couldn’t deny my ability to pay out of pocket to pick up a drug I had been legitimately prescribed extra of so that the extra I had already taken (with psychiatrist approval) would not put me short this month. I pleaded that I needed them, instead of asking him if there was anything he could think of that I should do to fix the problem. So instead of being an adult and taking care of the mess with my insurance and psychiatrist by myself, I let the compassionate and extremely helpful pharmacist do all the work. Somehow, magically, in just an hour and a half, Marc fixed everything. When he called me, I had composed myself and was polite and apologetic, but I still felt terrible.

As I thanked him over the phone, I was staring at some red and white stylized snowflake christmas cards that I wasn’t even planning on using this year, and my hand was reaching out to snatch them off the table the second the call ended. I knew I had to thank him in real, concrete words for saving the day by getting me a medicine I depend on to keep my anxiety from spiking through the roof twenty or thirty times a day. Usually I struggle greatly with cards, thank you cards especially, but this time I could barely fit my gratitude on the inside of the card. And when I brought it in, I did not even get to give it to him directly. The reason being that of course he made about ten more phone calls to speak to doctors and insurance companies so other people could get their medicines in the span of time I was in line. People like Marc make dealing with a chronic illness much less terrifying. I just hope my puny little card was some kind of reassurance for him that his compassion and work ethic do not go wasted or unappreciated.

Then the power went out last night, right after the sun went fully down, and the dark is very very dark when  you have absolutely no moonlight, no streetlights, howling wind and hurtling tree branches. The young teenage girls across the street came running and screaming up to our door, barefoot in the storm, eyes all huge. They talked over each other that their mom and her boyfriend were at the store about ten minutes away, and that they didn’t have any light, that they were terrified, that their rottweiler was terrified and they had to carry her inside somehow, they they hadn’t ever dealt with anything like this before. We were in the process of trying to find our own lights, so I invited them inside with me and the one light we did have that was easy to find. Eventually my boyfriend dug out the rest of the lights from the camping gear, and we handed out lights and went with them back to their house to find a battery operated lantern and candles in their garage. I have never heard two people so pissed off that the internet was down. Wow. Haha. All that attitude about the online games they couldn’t play and they were afraid to go around any corner in that dark house without one of us right next to them, even with the lantern! We stayed for a half hour or so until mom and boyfriend got through the checkout line, then went to go find our own candle stash and get fast food because cooking wasn’t an option. I’m not proud of the fast food ending, but I am happy that we were there to help out while mom wasn’t home.

Today we woke up and another neighbor had lost huge chunks of roofing and soaked plywood was exposed all along the top of his roof, which surprised me, the roof was newer than all the rest of the houses and no one else lost a single shingle. Anyway, they didn’t notice, and we realized they hadn’t noticed when the forecast started to predict more rain and there was no sign of a tarp or any indication of trying to keep the house from leaking all over the place. We did the neighborly thing and broke the bad news to them with plenty of hours of light and time before the rain hit.

Three random acts of kindness I wasn’t expecting to happen, but I am not prone to just letting people suffer for no reason. When it comes down to it, those situations will always bring out the best in me, and they will always sustain me for longer than the spoons I expend on the random acts of kindness.

So the secret, which isn’t really a secret at all, is that the more of myself I give to others, in return the energy of being helpful will sustain me far longer than my spoons would normally last.

My passion is being needed by others, and I thought that was dead when I got sick. Logic dictated that I give up that part of my life as well. I stopped being that ever-present friend, I stopped returning every bid for attention and drama that was directed at me. I learned to distance myself from all of the things that seemed to drain my energy and in my brain, that would of course include doing things for others when I can’t do things for myself. Not true! I had completely misjudged myself on this area of chronic illness. I can still reach out, I can still be involved, and most of all I can be loving and kind and responsive when for some the world is none of those things.

Chronic pain is almost inevitably isolating in the beginning. Yet, if you come to a place where you can navigate through illness with extra kindness and respect for others, it may also provide a gateway to other possibilities, other avenues in life that were only a vague, wispy haze. My car accident changed my life, certainly, but despite severe and disabling fatigue, pain, cognitive dysfunction, anxiety, plus a long list of other issues, I still care deeply about my friends. I still care about their relationship woes and work stories and successes in school. I will always care. I know that often people think I don’t have energy or time to comfort them in their dark hours or that I will be unable to muster up joy for them in their success. That is simply not true. I can find the greatest joy now in sharing in the happiness of others, and I often feel the greatest depth of sadness for the losses my friends experience.

While I was writing this a friend came over to talk and we found out that he had just been through a deeply saddening breakup. He is someone I admire, and to hear that his partner of several years had “fallen out of love” made me question love itself for a minute. If someone can fall out of love with this awesome guy who was the first person to introduce me to reframing my thoughts in a more constructive way, then what was love all about anyways. This friend is a wonderful, caring person who I met while I was in a dark place.

When we first talked, I was initially so confused by his relentless need to spin my angry thoughts into positives. I even thought he was just minimizing my pain and anger so he didn’t have to deal with it, but over time I realized how valuable it is to hear in action what a positive thought sounds like, especially when my self-talk had been unshakably negative for such a long time. Now of course I can see that he was doing the opposite of ignoring my pain, he was teaching me coping tools, every time I saw him for a year straight I learned something. It takes a special kind of person to care that much that you are willing to say the unpopular thing because it is the right thing to do. His ex will realize what a fool he is for not including our friend in his life path.

I can’t usually make my friends’ pain, emotional or otherwise, disappear, but I remember how much it sometimes helps to be held, and fibro flare up or no, I’m all about powerful hugs and can put up with the pain of a real hug for a friend in need, any time. It’s so worth it to be there for someone and to reflect maybe a little of that positivity they have been shining on my life back at them for a minute. I will not ever give up on expending that energy, no matter how severe the fatigue or the pain get. Not a one of the unexpected acts of kindness that I was allowed to perform this week made my body rebel any worse in the long run, and my heart feels fuller that it has in a long time.

I hope every time that I am presented with the option to be caring and loving, I am able to take that opportunity and be a shoulder for someone to cry on, a hand to rub their back, and a voice to tell them how important they are to others. Or the lantern-finder in a power outage, the overflowing gratitude scrawled across the inside of a thank you card, and the knock on the door that alerts our neighbors to a problem before it becomes a disaster.

There is so much to be gained spiritually from not taking the easy way out, that it often cancels out the amount of energy the more difficult path requires from you, and can even renew you. That is math that I can understand, for once! So even if you think you’re way too tired to go out of your way for someone else, I encourage you to look for every opportunity, small and large, to prove that theory wrong. When you brighten the lives of those around you, some of that light is always reflected back at your own beautiful soul. Nurturing someone else also means nurturing a part of yourself that believes in love, joy, and passion. It’s never a bad decision to be there emotionally for a friend, and remember, even a stranger’s day could be changed completely by a random act of kindness!

<3, good vibes and low pain days to everyone

On Pushing Myself

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

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

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

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

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

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

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

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

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

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

capturinggratitude

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

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

The Joy of Gratitude

Being grateful is my new go-to emotion.

If I’m feeling numb or distant or like I want to spiral down and down, I pick out one thing I can still do, one personality trait I am grateful for, and one thing that happened that day to be thankful for. Sometimes I just write the answers over and over again until they carry the meaning they need.

Of all the surprising benefits of being grateful, the one that strikes me right now is that it actually makes it easier to feel like I have all the reassurances I need, so I do not need to seek them from other people.

I only figured out in the last year what it means to truly find good in everything, and to make that spirit of thankfulness a priority. I was so ready for a change internally that when the gratitude that people had been telling me about for so long finally sank in, it became a part of my daily life almost immediately and with not nearly as much effort as I thought. Looking back, I started small and worked my way up to being able to write a list of positive affirmations almost every day. Writing those lists has been an incredible experience in the last three months. Now when I feel lost, I can look at the page after page of lined notebook paper and find myself again.

If you are fighting a battle with a chronic condition or chronic pain I especially hope you have the power of gratitude on your side, maybe not right now, but in the future at least. It doesn’t take my pain away, but it is almost like a blanket that keeps me warm no matter how cold the winds in my life are blowing (it’s freezing here, lol).

Easy is absolutely nowhere to be found in my new post-illness life, although people on the outside looking in must think I am lazy and everything is handed to me while I sit back in comfort and make demands on everyone around me, that simply is not the truth. In all this craziness, gratitude helps, that’s for sure. My life isn’t easy, I just make the best of it. Hard to prove, though!

Fortunately, all that matter is that I know how much grueling, non-stop work is going on even on those all-important rest days when I seem my laziest to the casual observer. Among the changes fostered in me when I adopted gratitude into my outlook, it’s finally getting easier not to care what people think. I have always been so self-conscious that by age 10, even sitting with my family in a restaurant, I was sure I was so hideous that everyone must be laughing at me, and every “her” I heard, I was sure it was me being discussed in all my disgusting glory (my self esteem was not the greatest, as a kid), so gaining some ground there is awesome, to say the least.

Join the #CapturingGratitude Revolution!


Apparently when everything else falls apart, we get time to explore ourselves, and pull all the good things we have buried back up to the surface again.

It honestly feels like all this soul-searching could be the most important thing I do for myself in my entire life. I am grateful for the chance to pursue it.

Pick One Thing

Even in between flare ups I can only do one thing. One thing before I have to lay down. Sometime just one thing the entire day. I cannot shower AND leave the house on the same day. I cannot do light work in the vegetable garden AND make dinner in the same day.

In fact, any one thing I do choose to focus on could be the last all week, if I hurt myself!

So how do you pick which task gets your attention?

Before chronic illness I would make a list, and I did all the hardest chores as fast as I could. No matter how awful I felt. Powering through and forcing myself to do everything that everyone around me “needed” was my way of life. I swore by that.

As I developed more and more symptoms, inevitably that behavior translated into trying to ignore my pain and push on. I was in much more pain, cognitive issues were becoming a daily and noticeable problem, I was having much more severe flare ups, I was always anxious and I was even having suicidal thoughts for the first time since high school.

Now, three years in, I finally understand that overdoing it is a ticket to my own personal hell, and I don’t have to buy that ticket.

Only I can know what overdoing it means, and I am the only one who can give myself permission to take a break, change tasks, or stop altogether. Of course, real life gets overwhelming and self care can fall to the wayside during a crisis, but the important part is that this is a habit that is sticking. And I am learning gratitude as a result. In between flare ups, I am capable of doing one thing. That is something to be be grateful for.

I am learning that it doesn’t have to be frustrating picking where my energy goes. It can be freeing, too. I am acknowledging my limits and despite the chaos that causes and the emotions it brings up, I have faith that my life will ultimately be better as a result. I can focus on the good that is left, rather than what I miss. It’s a process, I still have days of utter and complete depression in the midst of a long flare up, and I don’t feel like there’s anything wrong with that. Thanks to chronic illness my life will be full of ups and downs that are much more dramatic than before I got sick.

Post-chronic-illness, I am sorting through the wreckage for the potential in me, the things that I value about myself even when my body is not as strong as it was. Being able to do one thing, even if it is sleep and recover all day, is a gift that I am finally willing to accept.

Join the #CapturingGratitude Revolution!

What I am Grateful for Today:

Chronic illness is a battle, a burden every day, but it gives us a unique perspective on life. I feel like most spoonies I meet, whether online or in person, have the important things figured out (but we rarely feel like we do!). Those with chronic pain and illnesses have had to pare down their lives to the bare necessities for survival. We are skilled at finding the silver lining in almost every kind of adverse situation. We do not fret the small stuff; we are tough. These are just a few of the truths that I am incredibly grateful for.

Most of all, I’m grateful for all of the wonderful #spoonie support that happens every second, both online and in our communities. Where would we be without each other?

Click the badge below to head over the site and get started expressing gratitude through photos!

Capturing Gratitude Revolution #capturinggratitude

Join the Revolution! Click the image to head on over to capturinggratitude.com and get started posting photos of things, people, places, feelings, anything you can think of that you are grateful for. There is lots of inspiration on the website if you don’t know where to start!

There is something trance-like about scrolling through the #CapturingGratitude wall, and I hope more people join the revolution immediately! The idea is to post pictures of anything you are grateful for, easy as that. Setting up an account takes two minutes, and then you’re ready to upload pictures of everything that lights up your life. It’s like public meditation, and it helps me focus on all the little moments in life which I need to consciously recognize and appreciate.

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