I read a great article tonight about fibromyalgia and it showed me something very important. I am reactive because I am embarrassed and ashamed.

Here’s the article:

Fibromyalgia and complex trauma are connected in so many ways. Do you deal with any of these symptoms?

22 “Embarrassing” Symptoms of Fibro That We Don’t Talk About

I don’t deal with all of these, but I do deal with many of them.

For me the most embarrassing thing (and the thing I get defensive about, and now thanks to this article I realize and accept that it’s because I AM embarrassed) is that I’m “too young” to have ANY of these issues.

People who don’t understand this kind of illness look at me like I’m nuts when I talk about my pain or my exhaustion, and tell them that those things are part of the reason I don’t go out much, but the MAIN reason behind my anxiety is that I don’t want to puke or get a messed up tummy in public.

I don’t make a lot of plans and I really don’t leave the house very much because between CPTSD and these symptoms, my anxiety is constantly through the roof – which leads to regular panic attacks and to depression in itself, in its own way, on top of “regular” depression.

I was recently diagnosed with both Celiac disease and major depressive disorder and put on a whole new cocktail of medication for depression (celiac is only treatable by diet, basically). And as the article says, all the meds have their own symptoms. But it makes me crazy and embarrassed when people say, “you’re not even 40 – you can’t possibly have that many health problems.”

They often have the same reaction – you’re just making excuses. It’s SO embarrassing when they say that it’s just nerves because I’m too young for any of that stuff. And it’s disheartening when they say things like, “you’re just not trying.” Like, you have to be 50+ to be excused of these symptoms.

I fall down every so often because of my joints and I often have a hard time keeping my balance. Sometimes I think people probably think I’m drunk. That’s ok, because that’s how it feels.

I also drop things CONSTANTLY because of sudden weakness in my hands and random shakiness. I have turned into Miss McButterfingers. That’s hugely embarrassing to me – especially when you drop the same thing like 7 times in a row before you finally have a grip on it.

And, the worst thing at home (which causes some tension in my relationship) is that my brain doesn’t work. Literally, if it’s not music I can’t focus and I’ll forget what I’m doing while I’m doing it. Even reading a book takes ages now because my brain can’t comprehend what I’m reading half the time. Homeschooling is SO complicated, even though I have notes and a curriculum to follow with my son.

Even writing blogs and these posts here, I have to read and fix them a few times (and usually still have errors I see and fix later). That’s hard because I love to write. I hardly blog anymore because of it. This post alone took over 45 minutes to write. That’s ok – insomnia means I have nothing better to do at nearly midnight. ((thumbs up!))

It complicates everything. It even effects friendships – but it’s generally me, not them. It effects moods and the way I process and see things…as well as how I react, often…to many things. Those who stick around, well, I don’t know why they do. It really is (and I am) too much for people. So…such is life.

I don’t share this to complain or to simply verbalize my experience. This has been therapeutic. These are real issues and I’m grateful to have read this article with quotes from people who go through the same things.

It doesn’t matter how old you are, how much money you have, what your ethnicity is, where you live, what you look like…having any chronic illness is HARD. It’s good to feel united with others who deal with these issues even if it’s just in an article on the internet.

If you are one of the many, many people who struggle with chronic illness, you are not alone. I see you when you’re invisible, I hear you when you’re silently struggling.

I support you and believe in you.

Lots of love,

C.

Oh dear. The things you come across thanks to digital technology and usb drives.

Disclaimer #1: I HOPE that this is the worst sound quality I will EVER upload. There is no way I could ever recreate the horrific-ness that is this recording.

Disclaimer #2: My guitar playing does not sound this bad in real life.

Believe

Guitar recorded into GarageBand, percussion and synth added in GarageBand

Image courtesy of Google

The Backstory

This is the first song I ever (tried) to record. I had no idea what I was doing with GarageBand. I no longer have access to the original GarageBand file for this. I deleted it and have never shared this because it was SUCH CRAP quality. I have a reason for sharing it now, though.

I have since learned many things, not the least of which is to invest in a midi controller or a quality recording mic if you want to record your guitar playing and not to use the built in mic on your computer. You work with what you’ve got, though, and that’s what I had (and still have if I want to record my own guitar).

I also learned that using the pedal I used with this was a no-no for raw recording. It sounds like a dying cat in this file. Baha! 😂

So, anyway, back to the story. I was trying to learn to use GarageBand and so I tried to mimic some of the sounds I was hearing in some of the GarageBand instrument loops and managed to (sort of) play by ear this guitar track and record it into the app. I then added percussion and synth loops with the guitar bits to create a full song.

Let’s be honest: it’s not all that good. It kinda…well…sucks. But THAT’S OK! That’s the whole point of sharing this.

I came across this video I made of the song and laughed so hard at myself. I decided that I wanted to share this as an example of how you never stop learning, and how practice will never make perfect because we are human but it DOES make you better.

I thought I’d deleted every single attempt I had made to make this recording work – I even tried a noise reduction software and it was so noisy that there was hardly any sound left when it was finished converting.

Listening to it now? The song itself was not bad. It was just that I had no idea what I was doing with the tools I had to work with and I gave up trying with this song because I didn’t believe in myself, and now I don’t even remember how the song goes.

I tend to create stuff on the fly with guitar. I never write down chords or score anything, I just fool around and play what sounds nice and try to create something out of it.

Lesson number three from this for me was to always make notes of what you’re doing because two years down the road you will NOT remember how you did it or what you did unless you write it down. Dorie always used to say, when we were working on servers or computers, “WRITE IT DOWN. You’re gonna regret it if you don’t write it down, I guarantee you.”

Well. That applies to lots of things in life, and making music is one of them.

Ultimately, the point is this: if you wanna make music, make music. Just start. Don’t be afraid of it sounding bad – you will only learn from what you do wrong and the more you screw up the better you will be (and the more comfortable you will be with it).

That, too, is true regarding lots of things in life – if not life itself. Don’t be afraid. Just do it. Believe in yourself.

I know. “You hardly leave the house, what are you talking about – don’t be afraid and just do it?” That’s what you’re saying to yourself if you know me or follow my blog. Truth is, yes, I’m still working on that in general. It’s still not progressing very far; nonetheless, I’m working on it.

But, I believe it’s worth using your own flaws to try to help someone else while you’re trying to help yourself. I do that with my kid all the time. I have an 8 year old who thinks he is 17. The internet no longer scares or intimidates me. Heh… 😉

Now then, I’m gonna eat my 10PM yogurt and take my night pills and leave you with this: it will not hurt my feelings if you’re sitting there laughing, or cringing as (if) you listen to/read this. I know you are. I see you cringing. Cringe on. We all gotta start somewhere. 😂✌️👌

**it really will sound less cringe-y if you use headphones.

Today I received the most unexpected “thank you” note. It’s said, “thank you for sharing your story with me,” and had a nice note alongside that spoke about art and creativity and the healing of trauma, grief and broken spirits.

I want to thank YOU, for much the same thing.

I think we often forget that a person’s art IS their story – regardless of the type of art they create – and that’s where I’ve focused my mind this afternoon. When we create any kind of art, even when it’s not a piece of writing that “explains” what’s in our minds, we are actively releasing SOMETHING. Whether it is good or bad, whether it is joy or pain, beauty or darkness, we are actively expressing our hearts in any creative endeavor that we are a part of.

I truly appreciate the kind feedback here, at Instagram, and all the other places. I appreciate YOUR art and stories so much. It’s a wonderful way to remember that we are really all the same, just living our own stories…even when we aren’t sharing our own out loud.

Thank you for the kind response to my sharing of my music. I was really very unsure whether it was “worth” sharing, since I only create it as a hobby. Turns out it’s much like my experience with sharing photography and writing – people enjoy other people’s art, they enjoy SEEING another human being, and you get to know other people who create the same kinds of art, whether it’s photography or writing or music…

I’ve enjoyed “meeting” so many different people since I started putting that stuff out there. It’s a blessing to get to know and learn from you.

It’s always been one of my greatest joys to share my creative pursuits and my spirit with the world. Thank you for encouraging and reminding me how important it is for a creative person and artist of any kind to do that.

I’m thankful for, and blessed by, you. Keep expressing yourselves in your ways, too. And stay awesome.

All the love,

C. 💜

It’s easy for people who don’t have major depression or a chemical depressive disorder to look objectively at a person’s life and point out all of the logical reasons why someone should not feel sad, angry, anxious, or any number of other emotions and emotional experiences that come with depression. But depression isn’t logical. Depression doesn’t care to reason, and certainly not to show mercy.

You can’t talk your way out of it, pray your way out of it, think your way out of it, spiritualize your way out of it… You can’t analyze, theorize, medicate, or meditate your way out of major depressive disorder. You can’t shop, travel, read, or even act your way out of it.

For those people reading this who are in my shoes, you get it. For those in my life who can’t grasp it, I’m sorry. I know that you can’t get it. I’m sorry that I’m sick. I’m sorry that I am not who you want me to be or who I want to be to/for you. For those reading this who don’t get it at all, I hope this helps your mindset.

Please try to remember that it’s a disorder, not a decision. You can’t fake your way through depression every day. You get tired. And when you get tired, and feeling especially tied up in the straightjacket of depression, you really don’t care who sees or doesn’t understand.

Then, you regret that, because they think it’s them. They try to make it about something it’s not, because you should know if you pray or get spiritual or meditate or walk outside or even “JUST TALK” TO THEM!! then you will suddenly be ok! Then, you REALLY hate being here. You REALLY feel misunderstood and unloved. You REALLY want a drink and you REALLY don’t wanna take your meds – because you just want to sleep.

You want to sleep forever. You can’t move. You don’t shower. You don’t even brush your teeth. All you manage to do is go ahead and swallow the pills and go ahead and feed your kid and fake your way through homeschool. So…

The cycle continues. Until one day you say, “f*** the cycle. F*** it. F*** other people. F*** how it looks. AGAIN. I’m going to just make it stop.

And then you don’t. AGAIN. Because of him, in my case. My son. Because you’re too filled with love. That’s right – people with depression still love. They still feel “positive” things. And most often, when they commit suicide, they do so because they love others and they truly believe that the world and their people are better off without them. I know that’s hard to understand. But, it’s the truth.

Why? Why do they think the world would be better off without them? Not because of depression itself. Because they’ve had to fight their depression alone, which is impossible. They believe they are a burden. They feel their depression is causing too many issues for other people.

They feel…. Unloved. Ignored. Unseen. Without worth to add anything good to the world. They don’t want to make the world a darker place because they love. But when they end their lives, and usually while they are still alive and it’s often what pushes them to the end, along with the depression itself, they are labeled with things like selfishness, negativity, cynicism, laziness, etc.

None of those things are true.

You can’t do it alone, and anyone who says they did or do or that you can is a liar. Even if it was influences from media that helped them (music, movies, speakers, writers. etc.), nobody survives depression alone – especially not the kind that wraps itself around you like a second skin and doesn’t let go, and can’t be peeled off, and hurts even to try to put clothes on and cover it for the day.

And that’s the only reason I’m still here.

#welcometomyweek

I haven’t shared any of my music for a while, but, whelp, here’s a thing. Enjoy. All I can do right now is express the music (and the image edits) and that’s what this is. I may not have the words but I have the music. So far, I’ve always had the music.

The basis of this song is to end stigmas, to understand that those with mental illnesses need compassion and they need to be reached out to, not ignored or shunned or pushed away or further labeled, and saying goodbye to those labels.

There is some sort of problem with the video playing on mobile devices so if the video doesn’t work for you, you can listen to the song on SoundCloud as well as download it for free, for listening later.

I hope that YOU are doing well, and I hope that you get something out of this post that helps you better deal with or understand anyone in your life who struggles with depression.

All the love,

C. ❤️

**This song was mixed with Auxy using samples from Fanton ’87’s “Pay Phone.”

Herbs and essential oils are and have been healers and helpers for all of time, for humans and animals alike. I have really bad headaches – sometimes (a lot lately) they turn into migraines and these are not remedies so much as just helpers/soothers during migraines but they REALLY help and sometimes completely relieve my tension or sinus headaches.

I have two things that I use – one with dried herbs and one with oils. For dried herbs I just put one part each of eucalyptus, mint, and lavender into a small sachet bag or tie it up in a thin piece of cloth (cheesecloth works well) to make an herb bag. Then I just put it on my face and sniff it for a bit and try to nap or rest with it near my head.

When it comes to oils, I use the same three herbs. I use 15 drops of peppermint eo, 15 drops of eucalyptus eo, and 11 drops of lavender eo, dropped into 10ml of carrier oil in a (10ml) roller ball bottle. I prefer jojoba for the undertone in scent but also like grapeseed as it is a little thicker and has no scent at all once mixed. The last bit I made, I didn’t have either of those oils so I just used what we all always have on hand – EVOO extra virgin olive oil). To use this I simply roll a bit on my temples and rub it in with my ring fingers, kind of massaging. I often rub it down along the bone of my eye socket or even on my forehead for the cooling. Don’t get it in your eyes, though!!

EVOO is a great deal runnier than other carriers, in my opinion, but it blends well and I do not notice much of an underlying scent at all once its mixed well. Another note: you can use more or less of each eo – I played with this until I found what I liked best and what seems to work the best for me. I like the stronger scent of the eucalyptus and the cooling of the peppermint oil. Some have better luck with 10 drops of those and more of the lavender for relaxing. It’s all your preference. If you’re very sensitive to scents (especially with migraines), you may want to mix some with 10 drops or less of each. Again, personal preferences and what your body desires is what matters.

Neither of these things are a cure all (NOTHING is for migraines, except time, just to be perfectly honest – or so has been my experience), but these old time “remedies” really help to soothe any headache I have and often will help to clear up a tension or bad sinus headache (as the mint/eucalyptus) is so good for helping loosen and drain mucous).

I hope this might help someone out there if needed…just a random little thing I did again recently and wanted to share. Hope you are all well and have no use for these “remedies,” too!

Take care…

C.

Partially rewritten from an old instagram account – the one that used to bear this username, I wanted to take a moment to catch up with you and tell you, in short, I’m doing a 5k in two weeks. 

I know, I know. What!?? My husband has been helping me prepare and is doing it with me, along with our little pup. It’s been a definite lesson in learning to listen to my body. Yesterday I made my best time, averaging just at 15 minutes per mile, which is basically shit for a runner but a miracle for someone pushing through with chronic pain. 

I suffered last night. Today I can hardly move. But this evening, weather permitting, we’ll be out again, pushing that time. Why? Because I WANT to. Neighbors and acquaintances alike are openly calling me crazy and expressing concern for my sanity more than my safety but using my safety as the key words, and I want to combine two things (this older writing rewritten for the now and a piece I wrote last night) and share it with you. Why? Because it helps me to share. 

Walk A Mile in My Shoes

I wrote this a while ago but was afraid to share it because I didn’t want to be seen as a complainer or as weak. This is what the stigma of invisible disease does to people. My friend sent me a challenge to share my truth as I used to – it’s called the #vulnerabilitychallenge. So, I AM going to post this & not be insecure, & know I am not complaining. 

If you have loved ones with CI or chronic pain, be patient with them. They can’t control their bodies & battle with them every day & some days every second. It’s hard to live with pain, especially invisible pain. Try to give them a break. 

Literally hours ago I felt like this black cloud over my head was lifting. I felt…happy. I got excited because the depression was leaving. But what I forgot is that it never leaves. It just rises & falls like the temperature…or the ventilator that kept my dad alive during his coma.

I realized I keep waiting – waiting to get better when I know I never will. I may not necessarily get worse, but never better. That’s what CI means. So I do the best I can…but forgive me when I suddenly crash, or snap at you, or act out of sorts or distant. It’s not just a mood. It’s not just pettiness or whining. Its not selfishness or taking you for granted. It’s fibrolife or a celiac flare. Don’t be angry with me & fuss at me or cuss at me or take it personally. Worse yet, don’t compare me to yourself or others – especially others with CI or depression. 

Instead, just take a moment to try to imagine your skin feeling like it’s on fire. Feeling like your legs are wrapped in barbed wire, and let down because it’s backpain again tonight, first headache in a while, leg cramps, stomach cramps, everything hurts, and it’s stress. My body reacts very bitchily to stress – especially extreme stress, like my preparations for this 5K. 

The day has settled down & now it all catches up with me. Don’t hold it against me if I don’t cope well with stress. But rest assured – I WILL walk on, I WILL keep pushing through, and I DO love you. But I am also upset with certain aspects of how I’ve been approached recently. 

It’s comparison that gets to me. Tonight I was reminded by a film I watched during this painsomnia marathon how my mother has always doubted me and how sensitive I am to rejection, being doubted, being abandoned as the weak or the crazy one…and how that has been feeding my insecurity lately from several different directions. This all in turn reminded me that I am plenty “enough,” and never “not enough” or “too much,” at least not for MYSELF, which is what matters, and I started thinking about how even though I know it will never happen, anyone who doubts me needs to stop judging and assuming and just sit back and watch me succeed despite the challenges I face or my ups and downs. 

Then I wrote this note (blog) that was amazingly well thought out and put together and accidentally deleted it because it posted twice but it was a glitch so when I deleted one it deleted the actual note (and yes I’m pissed). Sigh…

The whole idea was that I no longer believe that our thoughts alone create our experiences, or that life has “terms.” I believe that there is a reaction for every action and that regardless of our thoughts or best intentions sometimes bad shit happens. I don’t believe we can control our lives with our minds alone, and that our hearts and our spirits have just as much to do with it. I believe that our actions and reactions, good and bad, feed on themselves to create our lives, and I also believe (know) that our lives can be effected by the actions and reactions of others but that we ALWAYS have a choice in how we live and face our challenges. 

I don’t believe in living life on life’s terms, I believe in creating my own regardless of what life has to say about it, even if that’s the harder way of dealing with things sometimes, and I’m sick of hearing people tell me lately that I need to accept life’s terms, I need to be careful with my body or I’ll make it worse, I need to just accept that I’m older or that I’m sick and so I can’t do the things I used to. Pffft. I know that they THINK that they have my best interest in mind, but they’re not ME. How can they know what is best for me – especially when they’re only a neighbor or an acquaintance I ran into in the dollar store? They can’t – not even just because they had an experience and found out what was best for them. 

Look… Listen to me hard right now. How many people who get a cancer disganosis say, “ok, I’m terminal. I’ll just die now and not try to fight back?” Some may, I’m sure…but all the people I’ve ever known to get that diagnosis, in real life or friends/acquaintances online? They may already know they’re terminal and they’ll die but they still fight – 99.9% of people I know who have had that diagnosis have not just accepted it as “life on life’s terms.” I even asked Dorie one time, because I used to judge that choice and think, “if I end up like that I’d never choose chemo,” why she made that choice and continued to struggle with it even though it was that that was killing her and not the cancer… Her response? “It’s the only way I know how to fight this.” 

My experience with Dorie and cancer and caregiving and watching her fight…that was the moment that I stopped believing in life’s terms and started believing in the human spirit and in the human heart rather than some stupid idea about how life works the same for all of us. IT DOESN’T. In a general sense, we all live and die. Everything in between? Not exactly the same for any two people. That was a huge lesson and realization for me. I’ve always known we are all different and we all do things differently and for different reasons. But that was my first slap in the face of how stupid it is to compare people or hold them to a standard we might think we have for ourselves but that can change in an instant based on any number of scenarios we may face. 

Fighting my body but learning to listen to it at the same time has reminded me of that. Especially today, after reaching that milestone in my mile time. My hip and my knee – my whole right side from the ribs down, really, is screaming at me. But it’ll pass – and it would have screamed anyway, probably louder, if I hadn’t reached this point. It would all come in waves regardless of any choice I did or didn’t make – because hello…that’s how it works.

Anyway, all of this reminded me about comparison. That was the whole premise of this whole bit of word vomit to begin with. Don’t compare – don’t compare ANYONE but especially not people with mental or chronic or physical illnesses in general. It’s not fair, because we ALL do things and face things and accept things differently and at different times and in different ways and even on differently on different days.  

I get that people may think I’m super crazy or annoying because I deal with life at both ends of the spectrum to an extreme and refuse to just exist or live somewhere in the middle but that’s because I don’t WANT to be or live a mediocre life. And, it’s also because I’ve always been a passionate and very free spirited person and I’ve always had to fight – it’s a learned behavior. I’ve always had to fight – those are hard words for me to “say” out loud, but it’s true and a realization that deeper discussion in therapy has helped me to accept.

I’ve ALWAYS HAD TO FIGHT and it is a LEARNED BEHAVIOR – my mother, my health (yes even as a child – mostly because of allergies and reactions which we now know was related to celiac but especially the time I had chicken pox and then scarlet fever and almost died when I was 7, which is what led to my heart issues as an adult), my depression, and a whole hell of a lot of people in my life as a young person (family, not people just randomly existing in my life, but yes, some of those…) who never accepted me because I was adopted and who always judged and hated me and belittled me because I was different…I was bullied a lot in school when people found out I was adopted – and I still have no idea exactly how that happened; because of how my “family” treated me I NEVER talked about being adopted to anyone. I guess there’s always that “one friend” in middle school… LOL I digress…

Rest assured – I may appear weak at times, especially when depression has me down – depression is the hardest and cruelest battle I face and yes, I face it head on daily and “fail” miserably sometimes in the eyes of others and even myself when I forget that surviving another day is a huge achievement some days, but weak is the farthest thing from reality that I am or that ANYONE with depression is. It’s the farthest thing ANYONE with ANY disease is, physical or mental. So just because someone doesn’t complain or express thoughts about their illness to you and you think, “ohhhh they’ve got their shit together, why don’t I or why doesn’t she or why doesn’t he?” Just don’t. Because they DON’T have their shit together. They’re just dealing with it in a way that makes it look like they do – and if they’re not talking to you about their struggles it’s easy to think they’re not struggling. 

News flash – not everyone talks about their struggles. Some people are very private. Some only express their physical and emotional exhaustion when they’re alone in the shower or in bed at night crying themselves to sleep. Some express it with a scream into a pillow that no one ever hears. Some express it by not expressing it. Silence is a sound, too… I’m not one of those people that is very private, and that doesn’t make me a bad person or a weak person or an ungrateful person or a “not coping well” person… And tonight I’ve been reminded by art imitating life imitating art of how much I HATE to be compared to anyone else and how much I strive not to compare anyone else to myself or to others. 

I don’t want to hear about what you approve of or disapprove of how I have a goal to make it through this 5k coming up with a “broken body,” or about what I should do or what I can’t do or what precautions I should take and so on and so forth. I CAN READ and I have been researching my physical conditions a lot longer than you’ve been thinking about all the ways my legs might not work during a 3.3 mile trail run. Speaking of which, it’s ONLY 3.3 MILES. It’s not the fucking Iron Man. 

What I want is for you, if you’re one of those people, to just sit back and watch what I CAN do, despite my insecurity and fear and pain and my body that screams, “fuck you!” to me every time I begin and end a walk or a jog. I want you to sit back and choke on those words of doubt and judgments, even if you’re only thinking them. Because I will NEVER say them to myself and I don’t want to hear them from anyone else, and I don’t want to be compared to anyone else – especially not anyone else’s imaginary standards for me (which are generally double standards, anyway). Nobody does. 

Tonight I’m laying here with heat on one spot and ice on another, and you know what? I’m relishing in it – I feel strong. I think I’m stronger than the doubters and judges in my life because guess what? I’m doing something besides worrying about what everyone else’s is doing. I’m focused on MY goal and MY current “dream.” And I’m gonna get a T-shirt for this particular experience, whether I come in first or 80th or dead ass last. But what I’m really gaining is a window back into myself. And that is priceless to me, even if it costs me more than I have to pay in the end. 

**A memory…**

 

It is…

Dark soul…

Untamable.

Black.

Deep space, ever deepening.

Always expanding, demanding.

Churning black hole, hollow.

Sucking me in everyday,

Spitting me out every night.

Holding me hostage.

Prisoner.

Chained.

Bound.

Aching.

Swallowed.

But holding on.

No choice in the blackness.

Can’t afford to get lost…

Yet…

Feel my way around it…

Hold on to what can’t be seen:

Angel wings.

Butterflies in spring.

Positive thoughts.

Energetic streams.

Consciousness.

“They need…me.”

Private tears.

Silent screams.

Memories blur.

Sleep.

Restless dreams, where she smiles.

Brightness, but not enough to pull me out of pain.

Rain.

Tears inside.

Anger.

Resentment.

 

Shower it all away.

Scrub until the skin is as raw as the pain inside.

Sing Tiny Dancer…

Cancer…

Churning sucking churning sucking churn suck churn churn churn churn.

Today I thought we’d lost her.

((09-15-14))

I was supposed to be having the time of my life.

Much to my surprise at the disdain many feel for Sylvia Plath, she gets it all so right in “The Bell Jar.” There is a strong resonance there for me, from the exploration of self to the sheer willpower to survive an experience…only to, as Plath herself did, give up in the end. I struggle and I strive not to reach an end like that. Some days and even for long periods of time, as I mentioned in my last post, that is extremely difficult to sort out and to sort through and to achieve.

I have struggled lately to write openly because my goal is to shelter the world from more negativity than it is already swallowed in. The struggle, the pain, the complication, the general melancholy… But it seems to me, after some of your comments here and some of the conversations that have taken place in my Instagram DM over the last week, that there is no sharing the overcoming and the victory without sharing the struggle. What good, after all, is a victory if no one knows what was overcome?

For the record, for those who are new readers or who are uncertain what the struggle is here, I am striving to overcome my emotional battles, learn to live with (or despite) my grief, and gain some sort of normalcy in a life plagued with chronic illness and pain. All of these things could easily remain invisible. They remain invisible to some despite how openly I express them in my day to day life. My biggest purpose in working through my struggle to share is two-fold. The first is to somehow be a part of ending the stigma of invisible illnesses, both physical and mental. The second is summed up in one word: community.

I’ve been having a conversation with my new friend bumblebeechula (from The Musings of a Young Lady Girl) about living in a place of constant undermining and doubt from those people who we go to for help – in this case, doctors – and how constantly coming up with a non-diagnosis is so defeating. It adds another, more emotional/mental element to the battle of living with chronic illness. Then, we attempt to share our experiences and unless we can find some (almost impossible, unachievable) super shiny, positive way to express them those around us begin to view us a pessimistic, self-absorbed, even self-loathing… That’s not the truth at all – it’s just extremely difficult to cope with an invisible illness, and it’s nearly impossible to express it in ANY words in a way that someone who has never experienced it or struggled with it can possibly understand.

Just a quick example here: yesterday at my session, I was explaining to Ginny (my doctor, for all intents and purposes, even though there is no help for this disease aside from diet) that I was really beginning to struggle desperately with anxiety and depression because of my Celiac diagnosis.  My husband, who was with me, quickly belittled my expression and my concern, and literally said the words, “she says that but all I can see is her doing better all around.” Exactly. That’s what HE can see. Because all of these issues – celiac, depression, anxiety – they’re all invisible to anyone who isn’t walking in my shoes. People can look at me and see the most put together, healthy, wonderful woman if they only see the cover. And that’s what they do, even when I try to open the book for them and give them a peek inside.

I hear everything from how I’m too young to be dealing with peri-menopause (even though it’s been scientifically proven that I am via my bi-weekly blood work and other testing), to how it’s ridiculous that I’d be complaining of issues with hip pain and pain in my hands (due to also medically diagnosed arthritis), to how gluten sensitive and celiac is just a total crock of sh*t, to how mental illnesses like anxiety and depression are just excuses not to do things and/or to avoid my true problem which is grief – which, by the way, is apparently something that is only a problem because I refuse to let go. What I personally find ridiculous is how, even if I pull out the paperwork and show people (hi, Mom) the reality of what my body is going through, it is quickly reduced to being all in my head, every single time.

I lost my mind over on Instagram earlier this week because the above experiences were finally culminated with some DM’s regarding my sharing of Sylvia Plath quotes. The one that really “broke the camel’s back,” as it were, was the one from a complete stranger, an eastern Indian person studying to become a doctor of some sort, who politely encouraged me by saying, “please stop feeling sorry for yourself and don’t put your head in an oven,” a play on how Sylvia Plath committed suicide. It just pushed me right over the edge – and the ensuing public conversation was about how, YES, I became defensive; I did not, however, become defensive of myself – it was for all the people struggling with invisible illness and how much harder their daily battles can become because of off handed comments like that. In reality, none of what I posted had a thing to do with feeling sorry for myself. It had to do with those quotes being exactly the reality of my life at this time.

It is beyond the truth: statistically, any 38 year old woman should be having the time of her life, whatever that means for her. Whether it’s reaching highs in her career, or being a single woman with resources who wants to travel the world, or being a homemaker and a mother, whatever she wants to do with her life, by 38 all the women I know are busy achieving their goals. The majority of them are having the time of their lives and living like crazy. Me? Not so much. I’m NOT having the time of my life. I’m busy struggling with chronic illness, the loss of both my mother and my father, the hopeful rebuilding of my marriage and my life, and the depression that is developing regarding all of those things…

I’ve been diligently working through “You Can Heal Your Life,” Louise Hay’s one-stop-shop for how to change your world and create a healthy, happy you, all by simply proclaiming it to be so, and I find myself becoming more and more disgusted with her methods and her ideas. It’s hard because no matter how many times a day I look in the mirror and proclaim to myself, “I am healthy. My body loves me and works just as it should,” it does NOT negate the fact that my body is not built normally on the inside and it will NEVER work just as it should. That’s just factual information – not doubt, not negative self talk…

My body is broken compared to a “normal” or “healthy” body and the thing that is broken about my body can only be managed for the rest of my life – it can never be “fixed” or “healed.” It’s so annoying…because I swear on my father’s grave that is not a negative statement or something that comes from a deep pit of negativity inside me. It’s just…reality. Some realities are not positive and happy. And therein lies my challenge of expressing it all without being read as Negative Nancy – because that’s the last thing I want to bring to the world…

As I mentioned, I’ve been conversing with bumblebeechakula about this and one of my most inclusive replies was, “Thank you for the encouragement to continue posting. I’ve been battling with that for a little while now, which is almost hilarious as I only started this blog this year. Sigh… It’s true what they say – it takes a village. Not just to raise a child, as the saying was initially about, but for so many things. Coping with chronic illness is one. I’m happy you’re part of my village, and grateful to be welcomed into yours.” This was in response to the most wonderful, perfect statement in her comment about dealing with chronic illness. “I think it’s so important to share our stories with other people.”

It IS important. And it is important for them to see ALL of it. Chronic illness, whether physical or mental, is hardly ever an easy experience. It is most often riddled with confusion, frustration, pain, and getting knocked down more times than you feel like you’ll ever have the strength to get back up from. Most of us DO get back up – over and over and over again, sometimes multiple times a day. But it’s not without struggle and it’s not without some expression of the pain, whether it’s a wince or a grunt or a moan, or a random, monthly rant to a friend or on our blogs or social media about that frustration and struggle. Those “once in a while” expressions of the reality of the struggle are not cause to label a person as weak, or negative, or a complainer, or self-pitying, or selfish. It’s cause to label them as a person who is struggling through some extremely difficult thing and COPING.

I think it is important to change the perception of chronic illness, as I’ve just described. I think it’s important to show all sides of it, and then, when we do have victories, no matter how big or small, they serve a far greater purpose in encouraging and helping someone else. Nobody who ever had it all from the get go ever made an impact in this world. Every single person who has made an impact in this world has had their own, personal, fair share of struggle – whether financially, physically, mentally, socially, etc., anyone who has changed anything in this world has not done so without overcoming SOMETHING on their way to making an impact, and that, my friends, is something to be commended.

In closing this post, I want to share a sort of a story with you. It’s a story about this image (below) and where it took me.

I stared at this photo for quite a long time. It really resonates with me, much like the Sylvia Plath quote I shared above. It forces me to consider how this is a very good representation of what life often feels like when you have an invisible illness or disease; when you struggle with chronic physical or mental illness that you can’t prove to anybody.

After some of the responses to my DM’s after my Sylvia Plath posts, I had a friend – a good friend – reach out to me and say, “you know you don’t have to defend yourself or your choices. You’re under no obligation to defend anything to anyone.” That is SO true, but I think what I realize from this comment and from thinking about what she said is that it’s not defense of myself that is my concern.

I do not defend my choices of posts. Rather, I defend the general issue – the open expression of the struggle people face when they are battling depression. Especially in conjunction with chronic illness, it’s something people tend to not be able to wrap their heads around. It’s a struggle they can’t grasp, and because of that they often falsely judge others and they publicly add to the stigma of both mental and physical chronic illness.

That’s where the root of my defensiveness lives. I don’t think I’ll ever reach a point where I don’t feel obligated to defend the world of the chronically physically and mentally ill against stigma. I’m upset at the population in general from that standpoint. I wish I could educate in a “better” and more tangible way, but for now all I have are my own experiences and thoughts. I have quotes, and my photography and writing. Those are my only tools, and the things that I’m good at. Those are the ways that I’m comfortable and best equipped to be an example. Whatever your way is, please USE IT. Please keep expressing.

My experience this week personifies the struggle of judgment, undermining, and insult that people face when they live in a world of chronic invisible illness. So many give up trying to express themselves because of this. Don’t give up. I don’t want anyone to give up. Ever. Especially not on themselves. THIS is what I want to change in the world. THIS is my goal. I want to help people to understand, and to BE understood. It is equally important, from both ends of the spectrum.