Staying Present During A Flare Up

It’s a major challenge to remain present despite the feelings of despair about all my worsening symptoms and lack of options that I am staring down. At the same time I’m always trying to figure out more and more about living inside my energy envelope and enduring the chronic pain, the lack of predictability, the severity and suddenness that my symptoms frequently come on.

Fortunately, a louder part of me than the despair knows that it’s important to grow and learn from this never-ending flareup, otherwise I am just surviving hour to hour, living in fear, and that isn’t enough for me. I’m greedy.

I want to get to a better place so I can really live again, within my limitations. So I can make my mark, however that is possible. It has to be possible. Everything is so hard now, but I know who I am, and I know who my friends are. I’m stronger than ever in some ways, and I am learning to forgive myself for the weaker parts.

Even when all I can do is breathe, it helps to remember that just being alive is amazing and improbable. I am so grateful for days when I am capable of seeing past the storms overhead. It’s okay that I can’t do that every day, because I’m doing my best.

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

Not Pretending

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

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

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

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

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

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

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

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

To be honest, I’m relieved.

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

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

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

Not the same, but certainly still me.

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

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

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

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

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

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

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

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.

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

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

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

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

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

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

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

Volunteer Opportunity Alert:

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

Click here to begin the sign up process

Suggestions?

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

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.

Awkward

That feeling when you pour your heart out and the other person says not one single word the entire time, during or after. Yes. That.

Exhausted from wanting to hear something, anything when I am done talking, or while I am talking, or even two hours or two days later, but I have to accept that it’s not coming. There is no apology. There is no reassurance. There is no “I’m proud of how far you’ve come” or anything else that would let me know that “I’m ready to wash my hands of you” is not still the underlying truth here.

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. ❤

where do you put your hands on someone who hurts everywhere?

How are people even supposed to know I appreciate and need physical affection if I can’t tolerate it sometimes?

It’s what I get for sleeping a full straight 8 hours. I actually woke up thinking about pain before I could even open my eyelids, I could tell within seconds of regaining consciousness that it was a flare day. My partner rolled over and tried to spoon with me this morning and I did not want to get out of bed; all I wanted to do was keep cuddling and relaxing like Sunday morning should be, except I HURT EVERYWHERE and I had to be rude and crawl my way slowly off the bed so I could limp in a circle around the house. I really did not want to get up yet, but the springs were digging into my hip and radiating pain down my leg, my other calf was cramping up, my low back screamed at me, my neck felt like someone was trying to rip my head off my shoulders, and that’s the short list, as I know many of you understand so well!

I get so damn guilty about stuff like that, though.

I mean, it’s not his fault, he shouldn’t have to suffer. But then I have to gently remind myself that it’s not my fault either. It just is, there is no one to blame.