Tag Archive | ADHD

Staying Present During A Flare Up

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

Not Pretending

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

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

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

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

can you remember who you were before the world told you who you should be?

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

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

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

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

To be honest, I’m relieved.

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

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

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

Not the same, but certainly still me.

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

More Exhausted Than Ever

Right now, I will do something very small and have to sit down immediately after or during a slightly more rigorous task, and it’s not the pain that’s knocking me down so hard, although there is a lot of that, I’m just pretty damn exhausted. Like, my bones are way too tired to walk to the mailbox or make it down the stairs to the garden, but I’m still able to fight through and manage those things sometimes. It’s very confusing. Overall though, the fatigue has ramped up to a point where I’m scared a little.

This is not meant to be a bid for sympathy or anything, I just have to have a place to put all this down and get it out of me. My body won’t allow me to do much of anything else and even writing has me fading in and out of consciousness because it leaves me so fatigued. To be completely honest, I’ve been feeling a lot worse lately. I pushed myself trying to create a small business that was never going to happen, and in many other areas of my life, and none of my accomplishments have added up to anything lately, not even one completely clean room. I have learned a lot and there were tiny moments of excitement and victory, but that isn’t anything I can put on my resume, really.

It’s depressing to feel like your health is going in the opposite direction that you’re aiming for. A lot of us are familiar with that feeling though, unfortunately. It’s just another part of chronic illness unless you can find a treatment that works. For a while things will hold steady symptom wise, and then a cluster of new ones will pop up one after another, which is what has been happening recently. Not every single new symptom stays around long-term, some of them will just last the length of this particular flare up, and some of them will attach themselves to my illness and they will be added on top of my daily already unmanageable pain, fatigue, and bodily systems that are completely out of whack. But these new symptoms will not be so courteous as to show up clearly on a test. Just abnormalities here and there, nothing to make an easy diagnosis off of. It makes my head spin trying to get a clear grasp on even the list of weird things that have happened with my body, and a lot of it isn’t stuff I feel comfortable sharing.

This flare up has brought with it a bout of sleep paralysis episodes, limb tremors and increasing muscle weakness, much worse than usual chest pain, rib dislocations, absolutely unpredictable new headaches and some severe migraines that actually got the better of me and landed me lying down until they subsided, hip subluxations on both sides, knee instability and weakness, poor typing and speech, including mixing up words, writing something completely different from what I was intending or thinking I was writing, forgetting phrases and words, increased inability to finish a sentence because I can’t remember why I started it, using big words but forgetting all the small ones, dizziness, trigeminal neuralgia attacks that feel like being struck with lightning over and over again in the same spots on my face, occipital neuralgia that is like being chiseled into on the back of my head, or like someone is grinding a screwdriver as hard and slow as possible into my occipital nerve, tmj issues making it a challenge to eat/smile/talk too much, jaw dislocations hundreds of times a day, lack of coordination and hand dexterity as well as random violent spasming when I try too hard to control my muscles for extended tasks like painting and typing, really painful joints all over, fatigue so heavy I feel like my veins are full of lead and my muscles are made of tissue paper and my bones are filled with cement, GI issues which all of a sudden include throwing up just about every other day, and delayed stomach emptying with all the associated nausea and pain and hating food/food hating me, possibly gastroparesis but I’m hoping not, problems associated with migraineurs even when the really severe head pain is not present (olfactory hallucinations, auditory hallucinations, light/sound/smell sensitivity, big blurry spots or color spots in my vision, things that look like shiny, constantly moving sprinkles all over my field of view, thinking things are moving when they aren’t, as well as not being able to track movement very well), falling asleep suddenly after exertion with no warning, feeling like I’m walking on razorblades and broken glass, sudden moodswings mixed with lots of feeling hopeless or just numb and dissociated from my disobedient body, muscle cramping, brainfog that is stronger by far than my Ritalin prescription, not understanding what people are saying unless they repeat themselves a few times, some obsessive behaviors I cannot stop doing and ptsd flashbacks, skin that hurts like thousands and thousands of nettle stings, and just so much more, but it would take so long to list, and this is why seeing a doctor once every 3-6 months is totally and completely unhelpful.

And I’ve been like this for two and a half weeks now, and it keeps dropping new surprises on me so I’ve got no idea when it will let me go…

I lost 15 pounds, and that was startling and positive. Not sure why I was so startled, I think it’s hard for me to notice the healthy changes I make and pat myself on the back unless some kind of tangible progress comes out of it, but lately I actually have noticed myself doing better at picking the salad from the garden over chips or pasta on the side, I’ve been back into yoga in bed, and in my better moments I try to sneak tiny bits of yoga into my day, with my arms close to my body and not pushing my flexibility to it’s max because I’m not in that kind of shape and my body can and will bend too far in every direction if I don’t watch myself in a mirror while I do it.

I’m so exhausted that it makes me laugh that I’m adding yoga back into my days but I can’t shower more than once every five days. Priorities slightly skewed? I don’t know, a shower is one very big expenditure of spoons that you’re committed to once you start, and yoga I can stop any time it hurts me, I can modify it to hurt less or not at all and to be done lying down even, and I dole out spoons one at a time to each little micro-session which is much less punishing on my body than taking a shower. God I miss being able to do that every day. The stupid shit we take for granted when we are healthy, I was so greedy taking two or three a day during sports and summer or just to get warm in the winter, and I never imagined I would ever give up my obsession with being sparkly clean every single day. It hurts to think about stuff like that though, and in general I just try to accept that things are the way they are and not ask “why me?” too much.

Not being able to shower is a big gauge for how much of a toll this has taken on me. The things I would have never given up if I had a choice, the gardening every day and walking for hours, the freedom of driving and earning a paycheck even if I didn’t enjoy the job or the commute sometimes, my clean house, the freedom to work out or go out with friends whenever the mood hit me, frequently visiting vintage shopping and buying fancy coffees just to treat myself, painting whenever I had a creative idea come into my head, preserving and cooking food especially when it came from my garden, baking bread almost every day, fashion, being able to complete deadlines and not be a total flake, being able to plan my next day and stick to it,

I feel bad enough on a daily basis that younger me, who had a damn high pain tolerance, would have been asking to go to a doctor almost every morning. But I don’t go even when it gets to be unbearable, because it’s so discouraging to be told more than once every 3-6 months that there is nothing new to try, nothing else to do that is in my price range, nothing, nothing, nothing, and to be treated like a drug seeker, a whiner, a lazy kid who can’t be bothered to get a job, when I just want to get better. I just want some hope, some kind of a future to plan on and look forward to. I don’t want to have to take these drugs. I don’t want to have to take two sparse and precious oxycodone just to get through taking a shower. This is not something I constructed to get out of working. I miss working. I’m young, my ability to work was my future and now I’m very lost.

I’m reaching for that point towards acceptance of my illnesses and new life where I can start to explore my talents and try to find more solutions, more small improvements, more joy in my life. I feel like it’s both close enough to grab and pull closer and simultaneously so far away that I fear I just can’t get there. I know I can only take it one day at a time and keep looking for the small victories, the shiny bits and the lessons learned no matter how painful, so I can quietly celebrate my life for those wonderful things amidst the chronic fatigue and pain.

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?

Distraction Therapy

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

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

raindrops and ripples

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

 

Chaos, Cats and Chronic Pain

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

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

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

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

View original post 384 more words

Being Sad Doesn’t Make You a Leper

With a chronic illness or two (or five), it can feel, especially at first, like all mental growth and development is in limbo, that it is all so beyond you. Your ability to focus, care, be motivated/inspired, or be fully present in life is even suspended, and it takes a huge amount of effort to immerse yourself in any part of your day, from work to free time, pain can be so overriding that it even becomes difficult to focus on your significant other’s needs like you used to, or even to be aware of them. You feel terrible about these things, we all do. No one likes to have to compare our old selves to our new selves post chronic-illness.

And I respect that, very much so, and do not want to take away from the reality of those moments. Though I often try to emphasize the positive on this blog, I will be honest, there days when I have to write the positive message I want to say over and over again until I really believe it, or skip the “fake it till you make it” approach and wait to post something until I feel less cynical about life. I am often stumped by my own depression, my own guilt. My illnesses and pain often overwhelm me and leave me so hopeless I can’t even bear to write about it. I never want to trivialize the absolute difficulty of living in constant, unrelenting pain that threatens to burn you alive with its intensity. During times when I feel that terrible and dysfunctional in every way, I tend to shut down, pouring my energy into worry, fear of rejection, and often anger, among other negative emotions. I do not believe it is anyone’s “fault” if they feel upset about something. There is always, always, always a reason for why people feel and act the way they do, and though that may not excuse behavior that is harmful towards others, it also provides a framework for starting to understand those in all stages of recovery or maintenance with a chronic illness. Just because some of us happen to be really good at dealing with pain, and some of us do not handle it as well, does not make those of us who are struggling any less worthy of love or admiration for where we are in our life and what it has taken us to get there. It also does not give someone who is in a better place mentally, or who feels like they are in a better place, the right to demerit someone who is just starting out on this journey, or someone who is picking themselves up from the depths of hell for the 42nd time and trying again, or even someone who isn’t yet aware of the path in front of them and can only focus on their own misery all of the time. These are all stages of the same state of existing and trying to thrive with a chronic illness. We are no better or worse than anyone else in pain, or bedbound, or learning to walk again, or even than someone who has given up, spiralled deeper and deeper into the sadder side of illness. No one wants to suffer. We were not born aiming for misery. At no point did someone walk up to us and sell us this illness, we did not choose it, we would do anything to be better, and many of have done everything. This is hard. Bottom line. You are allowed to have days, weeks, months, years, where you feel like a failure. You are allowed to grieve, hurt, or be miserable. You are allowed to scream, cry, or feel the hollow, numb, hopeless apathy wash over you for a time. These are your emotions, you are supposed to feel both highs and lows, and all things in between.

No one gets to tell you that you aren’t dealing with your illness in the best possible way for you, even your doctor’s advice needs to be taken with a grain of salt and a deep knowledge of what is right for you, in a long-term sense. Listening to your intuition is confidence boosting, I promise. We are all doing our best, even if the whole world makes you feel like a scab on a wound stuck on the back of society, that is not our fault, and it is not forever! Nothing is worse than being stuck in the negative side of emotions, and on top of that, also feeling guilty for your own disordered thoughts.

Dear spoonies, you are doing the best you can. Please, please, try to take some comfort in the fact that there are people out there who know how hard you’re working, how every single day is a massive achievement, and how determined you really are underneath the tears, the desperation, and the bad habits that will not be dealt with right now.

You don’t have to think positive all the time. You can be loved anyway, no matter what side of the emotional spectrum you are currently leaning towards. You are still worth just as much when you are sad as when you are happy, so please don’t feel like just because you are depressed, you are worthless. Depression is a part of this. A study from 2008 at Northwestern University shows how pain actually changes our brains, and it takes some time to adjust to that change and figure out how to work around what you have been given. We are all different, there is no formula for everyone to achieve optimum happiness, and anyone that insists there is might not be as brilliant as they appear.

Chronic Pain Harms the Brain, Study Finds

CHRONIC PAIN HARMS THE BRAIN

In a new study, investigators at the Feinberg School of Medicine have identified a clue that may explain how suffering long-term pain could trigger other pain-related symptoms.

– See more at: http://www.northwestern.edu/newscenter/stories/2008/02/chronicpain.html#sthash.dRdjvMuf.dpuf

Someone who tells you that it is possible to be chronically ill your whole life without dealing with bouts of depression, obviously hasn’t suffered any major trauma in their life, either that or they are in some deep denial. Whatever the reason for their skewed logic, don’t listen to that crap. Illness can be traumatizing, but you are safe in thinking your thoughts, no one has dominion over what you feel, you are in charge, you are allowed to experience the ups and the downs in life without censorship. Just in case you don’t have a safe place to be yourself in all of your disease’s ups and down, I am always honored to listen and encourage. No one should ever have to do this alone. Chronic illness is an adventure best enjoyed surrounded by those who understand and commend your quiet everyday courage just in getting up each morning to a body that does not behave and a life that is more stressful than most. I admire each and every one of you, even if we haven’t met yet, I know you’re trying and I’m rooting for you.

Beautiful spoonies, you all fight so hard, and that makes me so proud to be a part of this wonderful and supportive community. Even if we’re depressed from time to time, we are still fighting to be here in a meaningful way, and very much deserving of finding that. ❤

Psychiatry Changed My Life For The Better

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

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

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

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

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

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

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

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

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

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

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

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

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

Gotta Laugh

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

example of ToDoist in use

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

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

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

Plus it’s free!

Here’s the official website:

ToDoist Download

And the Google Play store link:

ToDoist on Google Play

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.

Undiagnosed Warrior

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

moderndaywarriorprincess

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

Quinn's Cauldron

Handmade Jewellery and Wiccan Crafts

iamchronic

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

No More Silence. Speak Out Against Domestic Violence.

Silence Enables Violence. Find Your Voice.

Hannah's Battle to Breathe

Living with a chronic illness: the ins and outs

highwaytohealingblog.wordpress.com/

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

chiaricontinues

chiariwife. chronic pain. awarness.

%d bloggers like this: