mybeautifulmigraine

https://migraineagain.com/life-with-migraine-through-art/?platform=hootsuite

https://americanmigrainefoundation.org/understanding-migraine/identifying-treating-migraine/

https://acestoohigh.com/2016/08/10/childhood-trauma-leads-to-lifelong-chronic-illness-so-why-isnt-the-medical-community-helping-patients/

I both appreciate and detest this article for it’s truthfulness and validity. When I think of what it means, I feel like I can barely breathe. Invisible hands close around my throat – it can’t possibly be all that simple, can it? Can it?

This is much of the premise of my therapy Integrated EMDR for CM. When I met Shanna a few months ago, she stated the premise of the article as casually as describing the weather. I was doubtful. It couldn’t be that simple – could it? What about genetics? Illness? Diseases? Was it all really just from a childhood trauma? When I named the trauma to her, she didn’t blink. And she’s been only the second therapist in my life to validate my bizarre experience.

Through EMDR, there’s a plain little girl tucked into the back of the wood rectangular family dinner table. I can feel the way the table felt, I can smell it. I can see the dinnerware I ate on/drank from every night. Tucked in the back end of the table – where no one else could fit. In my large family, I would participate. I would talk and engage. But it felt like only my mouth was moving… no words, no noise – like a mute. While I wasn’t heard, I certainly wasn’t invisible… No, not at all. Had I been absent from the table, there would be hell to pay. And I was so hungry (from not being allowed to snack), I would’ve showed up to eat anything. I would be seen but not heard. When you’re born into this game, you don’t know anything else, and your whole life revolves around these basic human needs. The need to feel loved, to be acknowledged, to connect with your loved ones. 

And I would go inward… Where I could be with my dreams. When you’re brought up to believe everything is your fault, you believe there’s something inherently wrong and bad about you. It would be decades before I discovered that “black thing deep inside me” that I hid from the world, was really me – the real me – and I was kind and compassionate and talented and smart and loving and curious and funny. Nothing black or evil about me at all, in fact. On the outside, I kept up the facade. And oh my, was it a lot of work. Because the rules to being the perfect daughter were always changing – that’s what they do. How can you “win” a game where the rules always change? There was this small part of me that knew something wasn’t quite right about all this… I referred to it as a bad feeling. And it would stop me in my tracks occasionally. 

We all played our roles in the Game: the golden one, the scapegoat, the lost one, the funny one, the quiet passionate one, the troublemaker, the caregiver. And of course the personality disorder and a whole lot of codependency. We were pitted against one another and didn’t know it, we were pawns. The other children would be told about how great we were – it was kept a secret from us.

And now there’s this: Chronic Migraine, Rheumatoid Arthritis, Sacroiliac Dysfunction, Depression and Anxiety. Do I wear my childhood as a Chronic Illness??Does that make the illnesses real or some kind of psychosomatic bullshit? And if it is the stupid ridiculous trauma, how can I fix it? Can I ever be well? Or am I made *more* well simply by the fact that I can acknowledge my childhood had a huge role to play in my Illness? And how foolish does this make me feel? How many tears are enough? When don’t he stop coming? When does the jail sentence expire? When do I allow myself freedom? 

No one has answers. Or do I just not understand the answers? 

There is a real reason I state adamantly that none of my children will ever develop a chronic illness. A real reason; I will never allow it to happen; and their childhood is meticulously void of the trauma I faced. They are cherished for exactly who they are, not who anyone decides they’ll be. Everyday, every single day, I strive to learn more about them, I listen to them, I ask them about their dreams and thoughts. And I know and believe with all my heart, that they are absolutely PERFECT just the way they are. They are separate individuals from me – not extensions of my life. God has blessed Marc and I with their care until they go off into this wide world to live their adventures. They saved my life, by ripping open the box of my childhood and exposing it. They made me face my demons. They helped me learn how to parent and love unconditionally. They saved me from myself and my pain. Every single day of their lives, I fret and fuss (“am I doing to them what was done to me??”)…the anxiety is incredible. I’ve been assured by many wise people: “By the simply fact you worry about this, you are NOT doing it. If you were, you wouldn’t be worrying about it.”

So now… Am I cured? Am I better? What’s the deal?

Starting to lose my shit. It’s low level migraine pain – like 6 – but too many days. Too many. I’m feeling like I just need to grow roots in this bed and check out.

Sheri:

Hi Donna…I used to be on long-acting morphine + another med for breakthrough migraines for over 18 years…on those meds I still always had a #5 migraine but a level #5 is better than the #10’s I was getting before the above meds! So I understand. 
When I first started getting migraines (age 18) they were episodic & after a few years they turned into SEVERE daily migraines. I’m just wondering if those of you who are just starting to get them everyday are fairly new to this migraine rollercoaster!! 🤕💜😵

Hi Sheri!

Not new for me. I actually think I’m running on a 5 cuz my Botox is working. I was telling Aimee earlier that my jaw is RELAXED…a sure sign Botox is in the house.
I had my first migraine at age 6. Significant family history, no physical trauma to my head. I was episodic from age 6 to about 35. I had 4 pregnancies where I was nearly migraine-free (because of the stable hormones from trimester 2 on). As I entered perimenapause, my migraines became much more frequent. I did not understand what chronic migraines meant. All I knew was I was the only one in the world who was needing ibuprofen everyday. So there were years of denial and disbelief and isolation.

I failed oral med trial one after the other. I failed diet changes. I identified my triggers: hormones, weather, stress, etc. I finally went into Botox regimen in 2010/11 and it has been THE BEST preventative I’ve ever been on. It makes my migraines more respondent to meds, it shortens them to no longer than 72 hours and it keeps my pain levels lower (I RARELY see level #9#10). I still clock in at about 18 migraines a month and can’t remember a time where I had a full 24 hours without some head pain.

I’ve added other comorbids: rheumatoid arthritis, sacroiliac dysfunction, and of course my good companions D&A (which actually came before I went chronic).
So…this is not new for *me.* I’m a Chronic Migraine Jedi. The Force is with me, I am ONE with the Force.

Appts everyday this week. My full time profession. 😬

And being a mommy…😁

Here’s a new one…

And then there’s my Chronic Cough hanging on for dear life…

https://migraine.com/news/new-drug-continues-to-show-promise/

Waiting…

Today’s exciting episode…

Yesterday’s exciting episode…

My Botox is helping. Summer is a BAD season for Migraine. So much heat (100’s everyday) and with heat comes the constant change from AC to HOT and back again. My head…my head. Yesterday was not a happy head day but I was able to keep it tolerable pain levels. Today, I’ve already had to triptan and it still hurts like a mother. I have big plans to make and freeze breakfast burritos with my Nick. It’s 16:50 and I’m stuck in bed. Maybe we can cook together in another 30 min… Maybe I’ll be stronger and in less pain then?

To my brothers and sisters fighting the warrior life everyday, I send strength and love. To my true friends who don’t necessarily understand it all, but support me, I send love and gratitude. To those who think less of me or judge me and my life based on their ignorance, I say fuck off.

“Roads Untraveled”
[Mike Shinoda:]

Weep not for roads untraveled

Weep not for paths left alone

‘Cause beyond every bend

Is a long blinding end

It’s the worst kind of pain

I’ve known
Give up your heart left broken

And let that mistake pass on

‘Cause the love that you lost

Wasn’t worth what it cost

And in time you’ll be glad it’s gone
[Chester Bennington:]

Whoa-oo-oh-oh

Whoa-oo-oh

Whoa-oo-oh-oh

Whoa-oo-oh
[Mike Shinoda:]

Weep not for roads untraveled

Weep not for sights unseen

May your love never end

And if you need a friend

There’s a seat here alongside me 💔
[Chester Bennington:]

Whoa-oo-oh-oh

Whoa-oo-oh

Whoa-oo-oh-oh

Whoa-oo-oh

I love this piece:

Nobody is “normal.”

Everyone is unique.

That said, long-term illness can change a person; it can change your mind, your emotions, your perspective, your way of thinking… (to say nothing of your body).

And the places in your mind that change can be impossible to perceive; what is caused by the physical (hey come on, literal viruses and bacteria in our brains) or the changes that come from long-term isolation, suffering, frustration, loneliness, abandonment, hopelessness…. (trust me, even with the deepest introspection, lines are blurry).

So when you are in this bubble of misery and feeling desperate, many of us reach that crossroad decision of whether to reach out publicly or not. Now, some do so all the time and some seldom do so. I want to share with you, the healthy person, the “normal” person, what may be going on in our heads and where the need to reach out comes from. Because to you, (sometimes frequent) posts regarding how someone is feeling physically and mentally can come off as:

Desperate

Attention-getting

Overly dramatic

Whiny

Ungrateful

Lacking faith

Hypochondriac

Lacking strength

Emotionally unstable

Or “_____” fill in the blank

And honestly maybe some people with chronic illness are. But I am asking you to consider grace, and here is why:

Imagine you are living a fairly normal active life; you work, you socialize with friends a few times a week, maybe you are also busy with kids. You do stuff! You go out to movies, you eat out at restaurants, you meet friends for coffee, you have a lot of human interaction at work, you sometimes take day trips or mini vacations, and your life may not be perfect or exciting, but it is full.

One day your body starts to betray you. Suddenly all the daily things that were no big deal become as hard as lifting heavy boulders. Your entire body is tired, tired to the point it feels like you have lead in your veins. You swear Earth’s gravity just dialed it up a notch as you struggle to go up the same staircase you have been bounding up the last five years.

You start sleeping a lot more, so much more that you start to feel guilt over your “laziness.” Even after a full night’s sleep your body starts to shut down in the middle of the day and you need to nap. The thing is all this extra sleep doesn’t help and you are just as tired and fatigued when you wake up in the morning as the night before. Even worse, you feel hungover, even without alcohol: toxic, heavy, foggy, headache, basically like sludge.

So of course you pump yourself full of caffeine because you have a life and things to do… only the caffeine is a quick fix that doesn’t last, so you have more. After a few cycles of this you start to blow out your adrenals, and things get worse…. You start to feel like you are letting the people in your life down as you can’t be there for them in the capacity you were only a short while ago. Oh, and did I mention the pain? You are dealing with pain that has no business in your body at your age! You feel old and achy. Joints and tendons, muscles and tissues that you never even “felt” at all before, are making their presence known by infusing non-stop pain.

Along with all of this (and a myriad of other symptoms I could mention) is the fact that your mind and your thinking are as foggy as your body. You know that feeling when it’s past your bedtime and you feel your brain trying to shut down for the night? How everything becomes difficult if you are fighting sleep? Trying to just finish that chapter, watch the last 10 minutes of that movie as your brain wants to sleep… Now it feels like that all the time, all hours of the day as your brain is constantly trying to go down as you are trying to get it to go up. Every waking moment is a battle.

Normal conversations become difficult because it feels like you are fighting through fog to both process what you are hearing while trying to formulate the appropriate response. You never knew until now that it actually takes energy to communicate and be with people. You frustrate yourself as word recollection fails you and you can’t seem to formulate articulate conversation.

As time goes on all this takes a toll and you start saying no to things. The energy it takes even to get ready, drive places, prepare for things… becomes too much, and you start having to pick and choose what you are able to do in a day, or even in a week or month as things get worse.

You start realizing that every activity also requires recovery time, and one afternoon out may mean you need two days in bed afterward.

Your world grows smaller.

As time goes on mentally and emotionally you for through all kinds of cycles that can be up and down and all around. These can swing extremely even over the course of one day from crying to anger to apathy.

At first all the people in your life are supportive, but as time goes on and you don’t get better, and you have seen this specialist, and that specialist and tried every suggestion of every caring friend from acupuncture, to massage, to “this amazing doctor that helped my friend who had the same problem!” you have read every article ever sent to you on any condition that even sounds similar, you have done crazy alternative things you would never have thought you would ever try…

But slowly friends start to drop away, check in less and less, and stop inviting you to things because they know you will just say “no.”

Life moves on without you and as the years go by your world gets smaller and smaller and smaller until you find you are alone most of the time.

You probably at this point have little to no money because it’s been spent trying to figure out what’s wrong with you and/or trying to get better. You also probably either can only work very little or not at all, and if you can work it drains you so much you have nothing left for any semblance of a life.

Remember when I mentioned the muddled place of your mind and your emotions caused by both the physical and psychological? This is where you are now. You may feel desperate and sad and lonely. Since you don’t see people in person so much anymore you might reach out to your friends online; both your real-world friends and your friends who you met in chronic illness forums and such.

So I am speaking to you, “normal” person, who I love and admire. When you see this chronically ill person prolifically posting, “wanting attention,” talking about what they are going through very publicly, and (sometimes) going into TMI territory… know that this did not happen overnight. This is the same person you know and love and they are beyond desperate to be the person they once were.

They may post because:

They want fellowship,

They want friendship,

They want to both hear and be heard,

They need a sounding block,

They want to feel normal,

They don’t want to disappear and be forgotten,

They want to have a glimpse of normalcy and online may be all they have,

They don’t see people much face-to-face so “Face”-book is their life.

Hear me now as I write this for my sick brothers and sisters: Everyone needs people! When you are sick and isolated, online is your people!

I don’t believe we are grand-standers or attention getters (at least not most of us). I think we are people just like you whose lives have changed and been shaped by illness and circumstances. All we want is to be normal and healthy. We may covet the little things that most people take for granted, even just taking a walk on a sunny day.

One more thing I want you to know: Worry about the chronically ill people who don’t post and instead stay quiet. They may be experiencing everything the communicators are but internalizing their pain versus reaching out.

It’s about having an outlet, versus internalizing everything. Isolation, versus reaching out. Honesty, versus putting on a happy face. I have seen too many of the “quiet one’s” obituaries online. Please also know the anxiety a person may go through on what to post and what not to post. It is so hard to judge because (especially) on a bad day, perspectives may be askew… and the reactions from people can also vary greatly.

You get the positive feedback from the chronic illness community: “Thank you so much for sharing, I am not alone.” “So glad to hear another person’s perspective.” “Thank you for being honest and blazing a trail for others that will come behind you.” This community supports you and your difficulties as you support them. And this is a safe and honest place to be raw and real in your times of pain.

But, you also may get the negative reactions of people who think you’re a drama queen, or are sick of hearing about your pain, or… (see list at beginning of post). So you may get the negative feedback, or the stony silence of family members, or the snubs and shuns of people who used to support you.

In closing: why am I posting this? I will tell you it’s not for attention or sympathy. I want to give a voice to the silent struggling ones. I want to advocate for those whose families don’t believe them. I want to open a window into a world (I hope and pray) you will never experience so that you can have a better understanding of your sick friend or family member. So consider grace and understanding first when encountering someone who has been struggling for a long time. We have so much to learn from each other.