Tag Archive | self-worth

Staying Present During A Flare Up

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

A Book for Moms With Chronic Pain and Chronic Illnesses!

I know I haven’t been around in a while and I’m very sorry, life has been so crazy and my typing and thought process so poor that I’ve been taking an unintentionally long break. I have been writing every now and again, but mostly on Tumblr and Instagram, and sometimes for images I make in photoshop. Maybe I should post all those soon? I have also written about thirty drafts on WordPress that have been eaten, gone unfinished at the last minute, or that I am too embarrassed to post right now (and maybe ever). I will get back into the swing of things slowly but surely in the next month.

But, for now, I was stumbling through Amazon, and found this book and it just about made me burst into tears. I want kids so badly but because of EDS pregnancy dangers, my family history of Spina Bifida occulta and neural tube defects, the strong possibility that I have the MTHFR gene mutation, and a bunch of other factors, including a total phobia of doctors (I can’t even get into that on here or I will freak out and lose my relative calm for how much pain I am in and the fact that it’s 3:30am).

Though I want children desperately, what I really want and desire above a biological child is to adopt. I’ve always wanted to adopt. There will always be kids out there right now who need families. It seems so against my values to selfishly have a child via birth when I know there is little chance that child will not suffer like I do, and when I know that my ability to be a good parent to a very young child is never going to be strong enough. The thing is, I have a lot of love to give and knowledge to share, if not a lot of physical ability. Unfortunately, I will still struggle with very basic mom things, like shopping for clothes, or food for that matter, or taking them places at all, and cleaning isn’t getting any easier or more feasible lately though I try really hard. I’ve always wanted to be the perfect mom, but I think a large part of chronic illness is accepting that even healthy people don’t live up to that, therefore I certainly won’t.

I will be a good mom, I think, but I will have to work really freaking hard at it, and it will take everything that I have to give and more. Even if I do adopt a child, I am worried that I will feel like a failure as a mom no matter how much I try to cut myself slack for what I can’t control.

Seeing this book helped me a little. Knowing others are struggling with this, and that enough people even to sell a book about it.

Has anyone actually read this to their kids or bought it for themselves/future reasons? I hope there are more books like this out there by the time I am able to foster or adopt.

Why Does Mommy Hurt? by Elizabeth M. Christy

Why Does Mommy Hurt?: Helping Children Cope with the Challenges of Having a Caregiver with Chronic Pain, Fibromyalgia, or Autoimmune Disease

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I Am Not Your Inspiration: The Problem With Inspiration Porn

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

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

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

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

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

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

Bull. Shit.

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

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

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

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

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

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

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

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

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

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.

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!

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.

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!

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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.

Failure IS an Option

I don’t mind failure, I relish in it, honestly. Without failure there would be no success, no learning and no growth.

However, just because failure doesn’t scare me, the thought of having to go through a lengthy process like applying for disability more than once is unbelievably daunting now that I am dealing with several chronic illnesses. And since I have the focus of a golden retriever puppy on a walk…

What was I saying? Oh yeah, since I completely lack all concentration whatsoever, I have had to develop some strategies for getting around my deficit. It has been about keeping it simple, being less self-conscious of my mistakes, and looking for positive reinforcement in the smallest of victories.

That was just a list of stuff, so here are some examples: If I want to paint tomorrow, I know I can’t expect to complete a piece start to finish in one day. I have to pare down tasks into steps, or pick smaller goals now, like just sketching my idea out one day and then doing a couple coats of gesso the second day. When something turns out not quite right when I do finally get around to painting on the third day, or maybe the fourth or fifth, I just try to focus on the process more instead of the final result. Even if it turns out looking more like a muddy field than a work of art, if I can use that canvas as a learning tool for teaching myself a new technique (or how not to use a new technique), then I go ahead count it as a victory, whereas before I would have gotten mad at myself.

I think one of the most valuable things that being chronically ill has taught me is how to view failure as success. I have become very good at being my own inner cheerleader (see, I’m doing it right now!). There is always a silver lining, and there always has to be. Every time I find one, I win and Chronic Pain loses. It might not even seem like much at the time that I find the little shiny piece of gold in all the shit, but it is everything when I look back.

This year was the year of perspective and organizing my thoughts, and one of the results is that I finally decided I am not weak. I have been through too much and stayed true to myself for too long to be weak. I might be writing this in a jumbled mess of words that will hardly make sense when I go back and try to fix it up into some semblance of English tomorrow morning over coffee, but I am writing, not wallowing. I’m changing my story by choosing to find the victory in the very small. So that later I can look back and see happiness.

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.

Beauty: Peeling Back the Layers

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

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

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

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

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

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

Society is Wrong

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

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

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

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

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

Not Cute, But Strong

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

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

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

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

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

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

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

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

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

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

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

Enough

So many people I love and care about deeply are going through the toughest (I hope) times of their lives right now. To all you warriors out there who aren’t sure what the future holds, try to take it easy on yourself. You haven’t given up. You are trying your hardest. You are surviving. That’s enough, no matter what anyone else says. ❤

Stream of Conscience: The Chronically Ill Are Tougher Than Nails

Us spoonies are tough stuff. We deserve more recognition for how great we are doing when we undertake a task that is dreadfully painful and will probably cause later repercussions. Having the courage to do small amounts of work that healthy folks take for-granted; experiencing pain and fatigue at unimaginable levels, and persisting anyway, time and time again. Everyday with chronic illness is someone else’s nightmare, and still spoonies find a way to cope. That is bravery. When one of those magical, unscripted moments where we take our illness by the throat and tell it who’s boss finally does happen, we don’t want to be afraid that pushing ourselves will lead to someone using  “well, you did it yesterday!” against us later. Just because we did something one day does not mean we are at all better. It could have even set us back a week or two, no matter how small the action.

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For instance, I drove my boyfriend to the hospital last month for severe hip and back pain. It was horrible. First time I had driven in over a year. I sat in the hospital sobbing like I was the patient that needed assistance. When we got to the ER, they immediately took my boyfriend and I back to a room, he talked to a doctor for a second, and then they gave him IV valium and dilaudid without so much as making him feel like a drug seeker, not one time. My boyfriend’s doctors kept coming in with boxes of tissues for me and judgmental faces, like I didn’t have a right to be in so much pain. I pushed myself way farther than normal taking him to the ER that day, and I was hurting, but pain alone doesn’t usually make me cry in public.  Truthfully, I was also crying about the fact that I will never be treated that well in a hospital, I will always be treated like an addict when I am in the most need. I have been turned away from ER’s and Urgent Care many times because “they don’t manage chronic conditions, that’s what your primary care is for.” OMFG, REALLY?!

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Just like with me driving my boyfriend to the hospital, doing something once does not mean I can do it again tomorrow. The next day I was almost unable to get out of bed, and by “almost unable” I mean it took two hours and a handful of pills and I’d rather not talk about it. Pushing through the pain is not always the best choice for those of us with chronic pain, it can and will cause flare ups that are disproportionate to the thing that set them off. One less painful day or one easier week does not mean I am cured (but they are really, really, really nice!). Going outside will not cure my illnesses. Trying harder isn’t really an option since every single day I am trying with all my ability to not let this illness get the best of me. I am not a mooch, I am not lazy, I do not enjoy depending on others for help. I did not ask to be in this much pain or to burden the love of my life with my conditions. All I can do is keep putting one foot in front of the other, like so many others dealing with chronic illness and chronic pain. We are tough because we have to be. It’s not an optional character trait.

When I have these conditions in remission enough to drive, I will get us in the car and head straight for the coast or the mountains. I know my boyfriend wants me to be able to drive again. I do too, so much! But wanting is not the same thing as being able to make it happen. It’s beyond frustrating… it’s a kind of frustration and desperation that try to drag me deep down into depression. I want to be able to assume these responsibilities again, I really do, because emotionally it felt great to drive him somewhere when he needed me, but the way my body reacted to all the movement, walking, sitting, twisting, was enough to convince me that my driving days are on hold again for now.

Despite the pain and restrictions of having several chronic pain conditions, my favorite phrase is still “I can do it” even when I really can’t. It might have taken me an hour to get that glass of water, but damn it, I did it myself. I try to push my limitations as often as I get a chance, in order to feel human.

Healthy or chronically ill or somewhere in between, we all push our boundaries to feel alive. It’s the difference between existing and really living. I’m going to keep pushing myself as so many other spoonies do on a daily basis, and if that allows me to get back to driving eventually, even better! I’m tired of hearing what I “should” be doing… instead I’m just going to do what I can and be happy about it, every day. To everyone else out there struggling with what others think you should be able to do, it gets easier to stand up for yourself every time! No guilt, we didn’t ask to be sick!

Trying to Wear all the Hats While Chronically Ill

This is a post about me, but I hope it touches someone else as well.

I realized today that for the last three years I haven’t had a day off, because although I’m not able to work, I also am not able to relax. This upset me. I haven’t had fun in so long I don’t know what it is anymore.

I used to be a fun person, didn’t I?

It wasn’t even that long ago.

Why can’t I relax? I do all these relaxation rituals every day like they’re going to save me, and I even get some benefit out of them. How come I can’t get where I need to be? I’m usually good at doing anything I really set my mind to, even with all the glitches my mind has nowadays. I have dedicated the last three years to healing myself, so why is relaxing so unbelievably hard? I’m sure most of the people around me think that’s all I do in a day; relax. It must look like it from the outside in, when I’m mostly in one place all day long, and I don’t work, and I don’t contribute to our bottom line. I’m sure there are a couple people out there who think I’m doing it for attention or for some other sneaky reason. Let me assure everyone, the only reason it looks like I’m okay is because I worked really hard to not spend the entire day crying, freaking out, and catastrophizing my painful and scary symptoms. Believe me, faking chronic pain isn’t easy or common, in fact, only about 1% of chronic pain patients have been found to be malingering or milking the system. That’s a stereotype for a differing blog post, though!

Then it hit me: I’ve been a patient for the last three years, but that’s not the only role I have been filling by any means. I have also had to be my own researcher and doctor for most of that time. When I stopped working a little over a year ago, I filled those hours immediately with my other duties (which were being completely neglected at that time because I was too sick to do both). I never really slowed down, because I felt so much guilt over not continuing the agony of trying to work a few hours here and there, when I could even get out of bed / stop vomiting / not have fiery and ugly hotflashes all day long. My first unemployed days overflowed with housekeeping, baking, doctor appointments, tests and imaging, canning produce, tending the garden that we depend on for subsistence each season, helping my boyfriend with his massive amounts of homework, keeping my houseplants alive, writing budgets and grocery lists, self-care routines, research my illnesses and symptoms, teaching myself ACT (Acceptance and Commitment Therapy), keeping track of my friends who are struggling with life-altering or life-ending illnesses while trying to help them emotionally whenever the opportunity arises, and acting as a caretaker for my boyfriend after his three hip surgeries.

None of these things are things I dislike or don’t want to do. In fact, I can’t imagine giving up any of these things any more than I imagined I would ever be forced to give up my job and driving. Giving tasks up means that someone else has to do them or they will go undone (like my make up and hair, for instance!). All the responsibilities that I am no longer administering to, such as driving, they mostly fall on my poor boyfriend, who is himself a chronic pain warrior.

I’m not happy with this situation. But I am learning to accept that I am not a burden simply because I can’t do all of the things I used to be able to do. The next step, the step I haven’t quite been able to take yet, but my toes are over the edge at least! I’m getting closer to being able to make this leap: at some point in the future I have to start doing the things I want in spite of not having enough energy to do the things I need to do afterwards, I have to start wearing less hats. It will mean downsizing my life again, which is yes, totally terrifying.

Most importantly, I am in control of what goes and what stays, this time. I know that getting any of my conditions into remission will be a process that requires me to reclaim my emotional well-being as much as my physical, if not more.

I have been afraid to step into the roles I really want to take on because I’m not doing a great job right now, trying to wear all these different hats for different people.

From now on, I’m making a pledge to myself, but also for all the other over-worked & underpaid spoonies out there, that I will not beat myself up for what I cannot do. I will be more gentle with myself when deciding whether to push through a painful task or take a short break. I promise to feel less like a burden and more like myself. No more guilt for trying to be a happier person, whatever it takes!

It’s a whole shift of mind, but I’m finally getting there. Closer, but the damn guilt still won’t let me paint like I used to, even on a better day.

I will get there soon, though. I can feel it.

🙂

If anyone has any advice on how to accomplish this new quest for self-love and self-worth, I would love to hear your input!

To all spoonies: You are good enough. You are not a burden. Be gentle with yourself when things are too overwhelming or too difficult to accomplish alone. You are worth loving and lending a hand to, no matter what. ❤

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