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,

Amy

 

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,

Amy

 

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,

Amy

 

 

 

 

 

 

 

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,

Amy

 

Fear

Fear consumes me to my very core.

Even on my so-called “good days”. Fear overwhelms me.

I’m constantly afraid of the future pain I will face (both physical and mental), the losses, the mistakes, the betrayals, the misunderstandings, the hurt feelings, the mass terrorist attacks that change life as we know it, the germs, a new diagnosis…. etc.

As you can imagine new years brings all these fears to the forefront of my mind. What will this year bring? I can’t think of a single year in my past that I’d want to live through again. I can’t think back to any year and say, “wow, such a good year!”. Sure, I have the occasional bout of hope. The rare thought that maybe, just maybe this year will be different. Maybe this will be the year I find the answers I need for treatment, maybe this will be the year I get my life back… But just as fast as the positive thought passes through my head the dark storm of fear and doubt pour in and encompass my whole being, reminding me that sure, there is a chance for improvement, but with that chance of change comes the chance of complete and total destruction.

It’s not death I fear, it’s living through torment.

I don’t see the glass half full. The extreme pain and misfortune has shattered any rose-colored glasses that may have once been worn.

I’m in that awful phase of I do NOT want to relive my past because it hurts so much, then again I’m afraid of the future because I am fully aware things could be SO much worse.

I don’t want to stay where I am because I’m miserable, but at the same time at least I know mostly what to expect in my present miserable.

ugh.

Does any of that even make sense?

Perhaps not to a reader without chronic illness. But I venture to say, if you live in a state of constant never-ending mental and physical pain, you get it.

You are nodding along saying “me too”. Saying, “yes, I get it!”

As my husband so sweetly reminded me as I cried this new year with fear of the future, and the mourning the loss of normal. He said to me, New Years is only a new day, just like every other day. No need to put pressure or expectations on yourself.

So at the advice of my dear man, I am trying to continue on as if it’s just another day. Because he’s right. Everyday is a new day. We can’t stop the bad things, but we can work to empower ourselves to breath in and out and face what comes.

We are strong. If you suffer with chronic, life-altering, physical and mental pain and you are still here fighting. You are strong. It takes HARD work to live this life.

God is my strength, I pray He can also be yours.

Keep Fighting,

Amy

 

Isolation

Do you self isolate too?

When I’m not doing well it is always reflected directly by my inability and lack of desire to socialize.

I just physically feel so tired I can’t seem to get out of bed, and then I’m over stimulated by noise so I want my door shut and my OCD makes me scared to see anyone for fear of a trigger.

The thing is, isolation is not our friend.

Sure it helps to temporarily ease our discomfort and yes, sometimes it is necessary,  because it gives us a bit of a mental break, in that we don’t have to be super alert at all times if we aren’t affecting other people. But unfortunately, when we self isolate for long periods of time, we actually only feed the negative cycle.

I’m learning more and more about how to live with OCD and it is fascinating and frustrating. The very things you avoid, you are to pursue. The very lies that you try to argue with, you are supposed to agree with… It’s complicated and confusing to say the least.

I’ve been in counseling for years, but my main focus has been my multiple physical chronic illnesses, mostly because they kept me bed and wheelchair bound and in a lot of pain, but I underestimated their effects on my mental state. My physical state and my life circumstances created an isolation so deep that my already fragile mental state was just shattered.

I’m now in the learning, accepting, and rebuilding phase of life.

It’s hard.

But you and I are in this together, right?

Keep Fighting,

Amy

Breath After a Battle

Today I finally felt like I got a bit of a break from my latest OCD flare up. Of course it never really goes away, even at my best, but it lessons sometimes where it isn’t at the forefront of every thought.

Gosh this flare was a doozy. I mean the kind where you question if you can handle it and you think about everything in your life that you would give up if this would just. go. away. I seriously HATE false guilt and fear that comes along with OCD and the intrusive repetitive thoughts. It literally takes over me and I feel like I’m miles down in the ocean and it’s so dark I don’t even know which way is up. Everything is distorted and blurry.

I’m pretty sure it’s the worst feeling I have ever felt.

I joined a few online support groups for OCD and it is already making me feel less alone in my fight. I really believe there is strength in numbers and in finding the “me too”.

We were able to go to the Christmas parade in our town this afternoon and I managed okay in the crowd! I needed my walker so I could sit whenever my POTS and Fibromyalgia needed me to, but I didn’t need my wheelchair! After being in a wheelchair pretty consistently for over a year, just walking is such a gift!

I guess that’s all for right now. I hope you aren’t in too much pain tonight whether that be physical or mental. I know the struggle of both of those all too well and if you are in pain tonight please know that you are not alone. If you are looking for hope tonight perhaps try reaching out to a support group, there are so many on Facebook and finding others that can identify with your struggles may help.

Keep Fighting,

Amy

Up and Down

One of the hard things about living with chronic illness is the lack of ability to plan ahead.

You really never know how you will feel before that day, or in my case, even later the same day.

For example – I walked 3 miles this last week and that was a new record for me since getting out of my wheelchair. It was super exciting, but the very next day, I was in the wheelchair and even unable to speak due to slurred speech and depression so deep I couldn’t even open my mouth to make a sound.

If you haven’t experienced this or seen it first hand it might sound a little crazy, but it has happened to me too many times to just be a coincidence.

It’s confusing for sure to have abilities one moment and not have them the next.

The good thing about where I’m at in my journey right now is that these flares are usually pretty short-lived and not more than a few days at most (and not at the most severe level more than a few hours or so).

With that being said, I’m in the process of rebounding from this most recent set back and walked myself into the clinic today for my weekly TMS appointment!

I’m hoping you have a happy Thanksgiving (even if you dread the holidays).

We are just going to be having a meal at home and we may join a few of the neighbors (depending on how I’m feeling) who will be out near our pool, since they invited us. For me it’s all about taking cues from my body and knowing I can’t handle big crowds or big expectations!

Mostly no matter what you are facing I hope you are able to find something or someone to be thankful for! The saying “there is always something to be thankful for” is true. Even when I was at my very worst and felt like I couldn’t go on, I was still able to be thankful that as a Christian I know that my pain (both mental and physical) are completely temporary and one day all things will be made right.

Hang in there, and Happy Thanksgiving!

Keep Fighting,

Amy

A Lack of Progress is Not a Reflection of Your Hard Work.

I’m training for a 5k right now!

I never thought during those long days of being bedridden that I would ever get to the place where a 5k would even be within reach.

It’s an incredible feeling!

Here’s the thing, I’m worried about how people will perceive my progress. I know I shouldn’t care, but I feel like the me that was sitting in bed deserves the recognition for her incredibly HARD work.

If you struggle with chronic, invisible illness you know the type of judgement and “advice” you constantly get. The people who think they can cure you with whatever product they are selling, the people who just think you’re a lazy person and that you aren’t trying, the people who think exercise and eating right is all that you need to do… etc.

You see, the fact that I’m in the place that I am in has nothing to do with any of those things. I haven’t changed anything about how hard I work or what I do. You know what I did?

I moved.

Yep, we packed our bags and moved halfway across the country to get a fresh start, get away from some toxic people, and to find some stable weather!

Now, because the environment and the weather are kinder on my body, and the sunshine and lack of constant reminders of the past are kinder on my mind, finally the circle of constant torment is slowly shifting in my direction towards progress.

I’ve had so many doctors tell me that I was in a nearly impossible situation due to the loop of sick body – sick mind – bad weather-bad environment. It was a setup for disaster and yet we didn’t quit.

I say “we” because this journey very much includes my husband who has stayed by my side day in and day out fighting along with me. We continued to try all the medications, we continued through all the painful tests, we survived the hospital stays and surgeries/procedures, we went to the many many many doctor appointments, we persevered and cried our way through the treatment plans – programs of exercise, pain management methods, biofeedback, physical therapy, eating plans-  we drove to the different states to do the experimental treatments, we paid the many many many thousands of dollars for YEARS, only to get nowhere, and on more than one occasion we sat in despair as I begged for my heart to just stop beating…

You see, this journey has very much been “we”.

So while I’m THRILLED and proud of where I am right now physically, I can’t help but notice how the “noise” of happy voices has come up. where were the cheers when I cried my way through months of painful workouts only to have no improvement. Did I work any harder to walk 3 miles yesterday than I did to fight to keep living back then? No. support seems to kind of be one-sided.

One of the painful parts of being sick for so long was watching the people in my life slowly disappear and become silent while my struggle was at its height. Now, that I’m being able to do more, and my life is starting to look more normal, they are slowly starting to reappear. I’m not mad that they are celebrating my victories with me, It’s just that when I really needed them and they weren’t there. This seems to make me sound like a pouting baby. I’m really not, I’m just not sure how to feel about it and while I’m not angry, I absolutely have been hurt over the absence in the last several years. Because of that, I feel like it’s an important part of the chronic illness journey to share with you all. Either to let you know it’s not just you that feels like your friends and even at times family have disappeared during your time of need, but also to help bring awareness about the importance of being an intentional friend to those who are hurting so deeply.

So wherever you are in your chronic illness journey, know that first, there is hope for progress no matter how impossible it seems right now, and second, know that you are not alone! You are a fighter, and lack of progress is ABSOLUTELY NOT an indicator of the hard work you put in. You know how hard you fight and I’m proud that you haven’t quit!

Keep Fighting,

Amy