A Roller Coaster You Didn’t Ask to Ride.

How does one go from walking 2 1/2 miles one day to a few days later not being able to dress herself or communicate and needing a wheelchair?
A horrible accident? a surgery? A terrible injury?
nope.
Depression.
Can I just say going from such a high to such a low is really hard. But I have been dealing with some pretty big things in my personal life that can help explain the low I found myself in, and I have learned through many many many years of experience, this too will pass.
I just need to get through the day, and as my mom always said, “just take it an hour at a time and if that’s too much, take it a minute at a time, and if that’s still too much take it one second at a time.”
On those dreadful days I take it one second at a time.
I told my husband earlier today, when we were discussing my crash that happened yesterday, I literally felt like a tiny miniature version of myself was trapped inside a sound proof prison cell deep inside my body screaming “HELP ME!” and no one could hear me because my body lay there limp and unable to speak. As we discussed our different perspectives on the situation we had walked through many times before, we talked again about the do’s and don’ts for what I need in that moment.
Tough love is a no.
Trust me, in those moments the last thing that is beneficial is someone trying to “shame” or “scold” me into just doing it. Just talking, just getting dressed, just getting some fresh air.
Close contact and eye contact is a yes.
I need to feel life from you, because I’m feeling really numb (at least on the outside. Inside I’m screaming and shouting at myself to pull it together and snap out of it). I need to hear words of affirmation because I feel like a dead weight. I need to see care and calm in your eyes. I need you to reassure me that what I’m feeling will pass, that you understand that I’m doing my best, that you are staying with me and that you love me.
And if all that fails throw a (clean!) pair of undies on your head and run around the room like a crazy man! Anything to make me feel something and to make the pain less intense.
I think communicating to your spouse/friends/family what works best for you while you are in a crash, after you have recently had one, is really beneficial for the next time it happens. They aren’t mind readers and we can’t talk, so both sides need to give grace for shortcomings, but communicating about it is certainly a step in the right direction!
Another thing I’ve learned over the years is to be patient with myself on bad days. When we feel that darkness overtaking our minds and bodies our initial and natural response is to tense up, fight it, panic, fear it… But what we need to do is take a slow deep breath and speak some truths to our brain before it takes over completely to the point where truth and lies start to get mixed up. I also like to tell my husband something like ” hey, just so you know I’m feeling really bad and my depression (or anxiety or whatever I’m dealing with at the time) is really flaring up. I’m going to probably need you to be extra sensitive” or “I might be extra tense” or “I need some alone time”.
Another thing that helps sometimes, depending on the severity and what I’m dealing with, is using multiple senses. For example, playing a card game while eating a snack. One without the other isn’t enough. Now, can I be real? The last thing I usually want to do when I am feeling mental torment is to play a game or eat, but my husband usually talks me into it and it does help some of the time. It’s not like I’m enjoying the game or the snack, but I’m just using it to pass the time and to turn off some of the over reactive senses.
The point is, sometimes we have to go against what feels like a natural response and learn new, healthier habits to enforce when our bodies and brains betray us. And sometimes there is absolutely nothing in the world that you can do to stop it, even if you do everything right. So give yourself a break from the condescending, self-doubt and dish yourself up a nice heaping bowl of grace with whipped cream on top. You and I are doing the best we can and you are not alone in this fight! If it’s one of your hard days just take it one second at a time. You can fight for one more second. You’ve got this!
Keep Fighting,
Dawn Harris

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Music

Music is such a gift to my soul.

Whether it’s worship music or love songs, opera (on rare occasion), or happy up beat pop.
Music finds a way deep into my being.
It’s like if you mute a movie during a scary part, it’s suddenly less scary. If you mute it during a romantic seen, the romance goes away.
If you’re having a slow day, put on an upbeat song and you’ll get a little pep in your step. If your feeling sad, turn on a slow, deep, song and cry your eyes out until you feel better.
Music is powerful.
I use it as a type of therapy.
I love to listen to it and sing along with it. I love the chills and the emotion it evokes in me.
I also write songs.
I hope that one day they will be able to be shared with other chronic illness fighters and I hope they bring them the same comfort and move them as deeply as some of my favorite artists and songs have me!
This week has been a little hard, I had to go in for my TMS and my OCD has made its self very known, in fact it was so bad I was using music to help which led to this post.
My fibromyalgia has also been an unwelcome guest and with the rain moving in my body is in rebellion.

So carry on fellow fighters and maybe find some time to listen to your favorite music and let it sink deep into your soul!

Keep Fighting,

Dawn Harris

Pain

Ouch!

My fibromyalgia has been so bad the last few days, keeping me awake and just throbbing.

It’s really discouraging because usually it flares up most when the weather is changing, but here lately even with the stable weather it has been really painful.

Stress is also a cause of a flare ups, and my stress level has been quite high! We have only a few weeks to find a place to live and we just started going to a small group type thing on Thursday nights and I’m dreading it.

I mean, I want to want to go, but I don’t. My anxiety and depression really want me to stay in. Plus the threat of getting the flu with this awful epidemic scares me to death! I do not have a healthy immune system and the last thing I want is to give any germs to my daughter!

It’s hard to live life when you are physically and mentally disabled.

The truth is, we all face difficulties. We can’t choose our battles, we just have to live with them.

Accepting and not fighting it helps.

Just the other day we were having a family day that ended abruptly due to an intense OCD attack. I was so upset and felt terrible about it, but my husband sweetly reminded me that this is our life and that it’s okay, it’s just something we have to live with.

One day at a time friends, hang in there and give yourself grace when you can’t do everything you hope!

Keep Fighting,

Dawn Harris

Nightmares

Nightmares.

Were sleep goes to die.

Anyone else here deal with nightmares every. single. night.?

I’m talking years were I can’t remember a single morning waking up without a bad dream (usually multiple). As a quick sample for you, over the last 4 nights or so I have been attacked, chased, somebody attempted to rape me, my husband betrayed me, my dad shot himself in the head, and my husband cheated on me multiple times.

Restful yes? not.

You guys I’ve tried everything!

It is so hard to start my morning off with a headache, literally aching body from being so tense, crying, angry… etc.

I don’t have advice for this one. I really don’t. I just want you to know the hidden parts of mental and physical illness if you are learning about us, and to you, reader who understands, I just want to remind you once again that you are NOT alone in this fight! I see you, I hurt for you, I’m proud of you for pressing on. I know your fight doesn’t end when your head hits the pillow. I know this is a 24/7 fight. Hang in there, we can do this even when it really really really sucks.

Keep Fighting,

Dawn Harris

 

Techniques

Growing, learning, waiting.

Life with chronic illness takes a lot of strength. It is hard to face a future when even facing an hour can feel impossible! I try to find truth in the midst of the pain and or mental confusion.

When I am hurting I try to give myself grace to rest and just be. If it is a physical pain I do what I can to make myself more comfortable. Something like a hot bath, using a heating pad, taking a medication that my body will tolerate (there aren’t many), slow deep breaths, closing my eyes, and being intentional about relaxing every muscle in my body. Pain makes us tense up causing us further pain.

When I am hurting mentally I also start by trying to give myself grace. I use a few different techniques in dealing with myself. I struggle with several different things so the approach I take varies by what I’m facing at the time. For depression I usually will try to gently force myself to attempt to get up and outside. Fresh air is so good! Luckily I live in a state with great weather all year around so that is a great option for me. If my depression worsens, I know it’s a day where I just need to let my self isolate until it lets up a bit. If my depression lessons, I continue on with the day as best as I can. If I’m dealing with a bad OCD flare up, I usually will try to ignore it, laugh at it (even if I’m faking), agree with it (even though it’s a lie), or again, if those things fail I usually will isolate until it passes.

When I have to isolate for any of the above problems I sometimes put in my ear buds and crank up my favorite music to block out the madness and to control what I hear so as to avoid triggers. I suggest choosing positive music, something that speaks to your soul! I love worship music and Kari Jobe is my go-to girl!

I know isolation and avoidance are not the answer.

I’m simply stating that in my case, I feel, that on occasion, it is the necessary course of action for temporary function. I don’t give up and stop fighting, I just realize that at times, acceptance is a better course of action.

Then, as soon as I can, I get back at it! Facing the fears and trudging through the shadows.

I’m so thankful to have this space to write and share real life experience and to share different techniques that I have learned over the years from other brave souls for have been willing to share their stories!

Together we can help end the stigma of chronic illness and mental illness!

Keep Fighting,

Dawn Harris

 

Learning to accept me.

Since I was little I saw things differently.

But life was good.

I was always tired and struggled to get out of bed.

But life was for the most part still good.

By the time I hit puberty my world started to shift.

Big emotions and hormone changes.

People I looked up to let me down.

I started to withdraw.

I felt sad and didn’t know why.

I felt guilty for every thought or action that wasn’t perfect.

I dreaded special days like Christmas and my birthday.

Big days meant expectations and I couldn’t meet those.

I became fearful and didn’t trust.

By 15 I had been told so many times that I was just “being selfish” that I “needed to choose to be happy” that my mood “sucked the life” out of those around me.

I wondered what was wrong with me.

I tried harder to be who I was supposed to be.

At 17 I fell in love, and by 18 I was married.

Still fighting through the darkness my health had started to decline.

I didn’t have a car or job.

I kept the door bolted and the blinds shut, crippled by fear.

The darkness continued.

People in our life tried to manipulate us.

We fought about the hurtful words they would say.

He said “let it roll off your back”.

I said “I can’t”.

I wanted to, really I did, but the words and actions were on a replay reel in my head.

2 months after turning 21 I became pregnant.

We were so excited.

I thought this will give me purpose, this will make me happy.

I was hit with sickness immediately.

Then only a day after announcing to my family that our baby was coming, the bleeding and cramping hit.

We were told we would most likely lose our baby.

I grieved deeply, no woman in my family had miscarried before.

I prayed for a miracle and it was answered with a yes.

Our baby’s life was spared.

My sickness increased and nearly took my life and my baby’s life.

Even a sip of water could not be kept down.

The doctor scolded me when I cried because he was admitting me to the hospital.

He said I would lose my baby within a day without immediate care.

I felt shame.

I didn’t think about that.

I was frail and couldn’t walk or even stand on my own.

After a month I was released to go.

Although I was still vomiting several times a day, the feeding tube had put some healthy weight back on my bony frame.

Halfway through the pregnancy we found out we would be having a beautiful baby girl and both of our dreams came true.

The next day we got a call.

It was her heart.

We were ultimately told she was only given a 20% chance to live and would require multiple open heart surgeries and or a heart transplant.

We were also offered an abortion.

How is this happening?

NO!

We were devastated.

I bawled my eyes out.

We found out that because of the complexity and rarity of our daughter’s heart defects, we would have to travel out-of-state for her care.

We delivered via C-section at 39 weeks 1 day gestation.

She was crying and as we reached up to touch her fingers she turned blue.

They put her on a ventilator and they rushed her off for her first surgical intervention.

A week later she crashed on her way to the OR for what was supposed to be her first big open heart surgery.

The surgeon did an experimental surgery that day that had never been done before and it saved her life.

At 2 weeks old she narrowly missed needing a transplant and went through her second open heart surgery.

She recovered and when she was 1 month old they were ready to release her.

They said she is very fragile.

You cannot be too careful.

If she gets a cold she can die.

Something inside of me flipped that day and I’ve never been the same.

The whole world was a threat to my baby.

I isolated.

I put up barricades.

I monitored.

I administered meds.

We went to weekly cardiology appointments.

Then at 3 months old something was wrong.

I called the doctor’s office and they brushed it off.

She was placed on oxygen and we took shifts watching her during the nights.

I called again and again.

Finally days later I received a call letting me know a mistake had been made and that our daughter needed immediate emergency surgical intervention.

We raced through the usual 4 hour drive to arrive at the pediatric cardiac ICU in the middle of the night.

She came through but my fear was deepened to yet another level.

I felt even more weight on my shoulders after their error.

After all it wasn’t the first medical error.

What if I hadn’t persisted?

She would be dead.

I must never miss anything.

2 months later it was time for her next big open heart surgery.

She came through but it was brutal.

About 1 month later, my husband broke.

You see, I was falling apart mentally and physically.

We were shut in just the three of us.

I had yet to recover from my C-section and pregnancy.

And finally he couldn’t take it anymore.

He said some hurtful things out of his own fear and lack of knowledge of mental health, and it shattered me.

I knew I wasn’t doing well and I started seeing a counselor.

We began to communicate better and he began to understand what I was going through.

Over the next year and a half we began to realize we had toxic people in our life.

We decided our marriage and our daughter’s well-being must come first and we began to detox the things and people who did not respect our new life.

While it was a necessary part of life, it was a painful part as well.

It made me feel guilty.

I’m a pleaser.

I like everyone to get along and for everything to be resolved neatly.

Real life though, sometimes requires you to be uncomfortable in order to do the right thing.

At 2 1/2 years old our daughter had her 5th and 6th surgical procedures, including another major open heart surgery.

We moved into a new house and without anymore scheduled open heart surgeries on the horizon I thought I would finally be able to start living a bit more of a normal life.

I was wrong.

By my daughter’s 4th birthday I had a bit of a mental breakdown.

I have spent the last 3 1/2 years almost completely bed and wheelchair bound.

Our daughter has had 2 more surgical procedures.

I’ve been shuffled from doctor to doctor, state to state, test to test, medication to medication, treatment to treatment, therapy to therapy.

You know what I’ve learned?

Our bodies are not made to live this way.

I have many disabilities.

I was born this way.

But it wasn’t until I was 28 years old that I finally got the diagnosis of OCD.

Yes, depression and anxiety.

Yes, fibromyalgia.

Yes, dysautonomia in the form of Postural Orthostatic Tachycardia Syndrome.

Yes, autoimmune disease.

Yes, vaginismus

Yes, inappropriate sinus tachycardia syndrome.

Yes, a bicuspid aortic valve.

Yes, double inguinal hernias.

Yes, chronic fatigue.

Yes, central sensitization disorder.

Yes, acid reflux.

Yes, irritable Bowl Syndrome.

Yes, symptoms of endometriosis.

Yes, pectus excavatum.

Yes, post traumatic stress disorder.

Yes, hypermobile joints.

Yes, hormonal imbalances.

But the one that literally changed my life was OCD.

Three letters and yet it haunts me every single waking hour.

It even haunts me in my sleep.

Nightmares.

Guilt.

Obsession.

Unwanted intrusive thoughts.

Needing approval and constant reassurance

Everything feels like a life or death decision.

Carrying the weight of the world on your shoulders.

Fearful of causing any pain to the point of fearing all interaction.

Over analyzing.

I can’t begin to explain the pain that this journey has brought me this far.

I have literally, on more than one occasion, been bawling in the fetal position begging my heart to stop beating.

I didn’t think I could take the pain anymore, but one rapid beat at a time my life continued.

My husband gave me a beautiful gift the day he learned about me and chose to understand mental illness instead of continuing to believe the cruel misinformation that is widespread in the world today.

I’ve always known that my daughter is worth fighting for.

And now as I continue to learn about myself, I’m learning that I am too.

 

Keep Fighting,

Dawn Harris

 

 

 

 

 

 

 

Tips and Tricks

Here lately my mental health has taken the attention of this blog more so than my chronic physical pain and limitations. While my physical condition still very much affects my daily life, it is the lack of a healthy mental state that plagues me the most.

I think one of the most useful tools in fighting this battle is sharing what we learn and in turn learning from others who walk this journey along side of us! Each of us are different, we are affected differently, some techniques help us while not helping others and so on. However, I believe, unless you have lived it first hand, you simply cannot completely understand the struggle. Therefore I like to share what I learn from fellow chronic fighters and hope that they help you too!

I recently watched a video about the terribly negative way we speak to ourselves and how when we think about how harsh and critical we are of ourselves we should realize that we would never say such hateful things to a friend and we shouldn’t say them to ourselves. Then, the woman held up a picture to each of the women she was speaking too and in the picture they faced themselves as a child. She asked them if they could tell the child version of themselves the same harsh words they speak to themselves now.

Cue the emotions.

You wouldn’t tell your 5-year-old self that they are worthless, that they are too fat or too skinny, or that they are lazy and ugly. So why do we say it to ourselves right now.

I immediately thought about my daughter (S) who deals with MANY of the same struggles I do. But when she is struggling, my heart aches for her SO deeply. I hug her, I confirm her, I lift her up, I denounce the lies she is fighting, I encourage her good heart, I nurse her wounded spirit. I do not think less of her because of something she can’t control. I do not for a moment, even remotely, begin to say or even think the harsh words I would speak to myself if I was fighting the same battle.

Whoa.

It hits you right where you need it. Am I right?

How many times have we come down on ourselves for things completely outside of our control. For the things that happen to us, not the things that happen because of us.

We hold ourselves to impossible standards and when we fall short we are ruthless.

After I watched this exercise and began to think through the truth in it, later that day I caught myself coming down hard on myself for something that had happened to me. I started into myself with “what is wrong with you?!” and almost immediately I remembered the video that I had watched, and as I imagined my daughter coming to me with the same struggles, I imagined the things I would say to her, and then, I gently said them to myself.

It felt like a comforting hug.

A conformation that my illness is not who I am.

It didn’t take away my struggle but instead of heaping false shame on top of my already struggling mind, I felt a renewed awareness of the truth and that this battle is mine to fight not because of what I’ve done, but because of an illness.

Strictly, because of an illness.

And that my friends is my tip.

Be kind to your spirit.

Keep Fighting,

Dawn Harris