Tag: Chronic Fatigue Syndrome

Thrive

(4 min read)

I hear that word a lot. In podcasts, books on wellness, health culture, motivational speakers, and by some of my friends. 

The good news for me, is that I just had 3 entire days in a row where I’d say I was physically doing better than surviving. I’m really celebrating that today. 

Let me tell you what it was like to really live: We went out as a family to a nature preserve on Monday (Memorial Day). I felt good (except for my period which had just begun and I was cramping like mad). It was a perfect day. Warm, blue skies, no wind. We walked around, made a fort out of tree branches, swung on porch swings, laughed, and relaxed. 

Feeling so great, I wanted to keep living it up. We got some pizzas for the kids, then Justin and I went to a great restaurant in Minneapolis for a date night. I even had a little bit of his cocktail (I haven’t been able to drink alcohol in a long time). I was glorious. 

In the next few days, I began to show up as a mom in ways I’d been unable to for almost a year. We set up a new structure for our family. We talked about video games, screen time, and why we will be scaling back. How it shapes your brain and how it can begin to take you out of your actual life when we spend too much time in artificial worlds. 

We went for a bike ride to our little gas station to get milkshakes. We went on walks at night before bed time (and our cat Piper even came!). I took my kids to the beach on opening day, and swam with them and did handstands and laughed with them. I cooked good dinners and we ate out on our deck all together. I jumped on the trampoline with my girl, doing flips and tricks and laughing at each other. Me and the kids took turns going down the zipline in our backyard being dare-devils. 

I mowed the lawn. I painted our built-in cabinet in our newly remodeled bathroom. We played The Game of Life. We had conversations about balance. We talked about how the mind, emotions and body are all connected and all need to be considered as a piece to overall health. We talked to Howie about what he may want to do for his first job, and when he’s feeling ready for that. We talked about driving. 

I felt alive; present; fully me. The best version of me. 

We began a chore system. Since my kids are home-schooled for this time, house work is important to give them structure and discipline. Wednesday is floor day (sweep and mop), and Fridays are vacuum days. I’m still thinking about what Monday’s will be…..don’t tell the kids!! 

I’m just really feeling like the best mom and partner and woman I’ve ever been. The one thing that being open and finally seeking the help of a health practitioner has given me is that I’m really living honestly. I’m really paying attention. I’ve been having major health challenges for 12 years now. But instead of pretending I’m fine and privately suffering and lying to people about why I disappear, I’m being honest. 


And this honesty has given me so much strength to really step fully into my power on my “good” days. 

Honesty has forced me to process my experiences. There is no room to ignore things anymore. I have to feel all my feelings, then pick myself back up and show up to my life in whatever way I can that day.

Last night while we were playing The Game of Life, I suddenly became dizzy. I began to lose coordination of my limbs and fingers, and feel very weak. It comes without warning in an instant.

Oddly and infuriatingly, when this particular type of crash or flare occurs, it’s often accompanied by being unable to sleep. I feel weak, cold inside, fatigued to the bone and shaky. AND I CANT FUCKING SLEEP. 

And this usually lasts 4-5 nights till it passes. 

Today, I can only lay down or sit propped up by pillows. Im dizzy, out of breath, weak and so sad about it. I layed for an hour in bed while the kids were playing together, and cried on and off in between stressing about what in the hell I’m going to do. 

Writing is one of the only things I can do in times like this, and even this is difficult, for lack of coordination. 

I could’ve just turned on Netflix. But I am sick of this and sick of being a sick girl zoning out to TV. 

This is me, showing up today in the midst of a terrible flare up with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome made more complicated by Lyme and Walking Pneumonia.

Do I sound pathetic? Sometimes I’m afraid that I do. 

But fuck that, this is my truth. I am a survivor and thriver. I’m trying to live my life each day to the fullest, no matter what I can’t control or plan for. 

And I am sure that no matter what your life is made of, you have challenges just like I do. Not one of us is living an easy life. Life is a burrito made up of so fucking hard and so fucking beautiful. I can’t change my circumstances today. I am still here though, asking myself “what good thing can I do with my day today?” 

And before I sign off, I want to give a special shout-out to my fellow sufferers of ME/CFS. Most people have not heard of this hidden disease. Most have no idea what we go through. There are people in my online ME/CFS support group who cannot and have not gotten out of bed for years. Who can’t shower for weeks, too weak to do even that. I want you to know that I love you, I see you, I care, I get it. You are stronger than most for what you endure. And a moment doesn’t pass when I’m not thinking of you and hoping for a healing path for this disease. 

I love you all.

Love, Heather

Asking Better Questions

(4 min read)

As I continue to trek down the path of uncovering the chronic health issues and seeking the help and support of my doc, my heart burns with one question over and over again. Will I get better?

Sometimes I break down about it. Because this still feels like it shouldn’t  be me. This still feels impossible. Like it can’t really be happening to me. 

I cry. Sometimes Justin catches me. He walks into a room, and there I am on the floor. Crying into my hands. Because I had just been trying to clean or work on a project or cook, and my body will just stop being able to take it. I collapse. And sometimes I handle that with grace. Deep breaths. Mantras of acceptance and release of control. Because when I tense up and stress about it, the crash gets worse.

Sometimes though, I collapse and cry. I’m unable to stop the sadness from boiling over. 

So Justin will sometimes catch me. And when he does, I sometimes ask him through my tears “will i get better?” 

It’s an impossible question for me to ask of him. He says various things. He tries to comfort me. Something in me so badly wants to know with certainty that I’m going to be well again.

Today, through writing, I heard an answer come to me. It came to me from……source? My highest self? God? I don’t know what you want to call it. All of the above are true. 

“If your question is one of fear, then it is also your answer. For an answer to a question that is birthed from fear is already in motion- creating in the Universe more fear. You cannot really answer that question with Love. Instead, hear the fear in your question, and re-phrase it to a question that is based in Love. A question that is based in Love is also an answer, and will go out into the Universe, creating more Love.” 

(I apologize if that sounds too airy-fairy; its just what came to me.)

And I realized that “will I get better?” was coming from the fear in me. It’s coming from terror that I will not get better. There isn’t a good answer to it. Fear will only actually create more of the same……more pain, sickness, fear, etc. 

And since our thoughts are creative, and have the creative energy to transform, and our words have even more creative power, I am sitting here trying to re-imagine that question into one that is coming from a place in me that is grounded in Love, not fear. (Since Love and Fear are the two operative forms of creation and are always in motion). 

So, I’m thinking that it’s okay to cry when I’m sad and scared. No harm in the honest raw expression of emotions. But then, to carefully create a better thought about my circumstance.

And that maybe my question could instead be 

“what will I do with this today?” 

Or 

“How can I bring love into this challenging situation that I am in right now?” 

“How can I accept myself today, in this moment?”

“How can I show my body love in this moment?”

Or at the very least

“Justin, can you just sit with me for a few minutes?” 

And, as difficult as it is sometimes, to remember that the future self is never coming. I will always only ever be in this moment. In the present. Here. Now. And all I will ever be able to do is accept the present moment as it is, with grace and gentleness. 

Because honestly, wondering about the future me, and if she will still be sick in 1 year, 5 years, 10 years………makes me sick. Makes my body tense. Makes me stressed. My heart races and I get anxious and sometimes even begin to panic. 

And though I do not believe that I have brought this sickness upon myself in any way, I also hold the tension of knowing that I have the creative power to re-create myself in each moment. Our thoughts and our feelings and our words are powerful, always writing and re-writing our experience.

And yeah, maybe I just got wayyyyyyy tooooooo  spiritual, metaphysical, theological cosmology- ish. 

But aside from all of that, I really do only see one way to truly live well: Acceptance. Loving what is. 

This is what I can control: How I feel about it. What I say about it. What I create my life to be about. 

Grace or anxiety.

Peace or fear.

Relaxing or White knuckling.

Flowing with life or Fighting it to the death.

Breathing in acceptance and love, or panicking and wondering. 

Weirdly, one of the reasons I write about my experience is to create for myself (and maybe for a few others who read this and find it comforting in some way) something beautiful from this pain- to ask a better question about the challenge I am in. 

I will, at the very least, have my own words as a living witness to my experience. To go back to and remind myself of how it has hurt, what wisdom I have gained, how it has created my heart to be more open, how much I have grown and become truer. 

With much love y’all, especially those of you who have hidden illnesses and challenges. I’m with you!! 

Riding the Waves of Hope and Hopelessness

*originally written in December 2020

Today, its hopelessness. 

That may sound dramatic, and honestly it may be a little dramatic. But it’s the strip-you-naked truth. 

The last two weeks I had been feeling and experiencing more hope. I think what makes me feel hopeful is when I can take meaningful action to solve a problem. When I’m faced with a problem, I like to come up with a plan of action to solve it.

That’s what makes this so damn hard for me.

I just can’t fix this.

I can’t figure out how to fix this. How to fix my aching, tired, sick body.

I hate how that even sounds. I hate saying it. Chronic Illness. Chronic pain. Chronic Fatigue Syndrome.

I hate those words. They make me feel weak. Sound weak. And God I hate feeling weak. And God I hate not being able to fix myself.

So for years and years I’d been pretending I was well. I deeply believed that if I acted okay, and pretended to keep up with everyone else, that I’d trick my body into being fine again. 

Obviously I am sitting here writing about feeling hopeless about how much my body hurts and how no one has figured out exactly why yet, so ignoring my body’s struggles totally worked. 

I have ups and downs with pain, fatigue and an all-over ill feeling. This last low I hit two weeks ago was after experiencing such enormous pain in my neck and shoulders, that my husband found me in the bathroom sobbing hysterically into a bath towel. This was after we had been watching a family movie, and even the act of laying there watching a movie was excruciating. So much so that i had tears rolling involuntarily down my cheeks. In an attempt to hide the tears from my kids, I causally got up, went to the bathroom, and buried my face in a towel to muffle the sobs that wracked my body. 

This level-10 pain is new, as of 2019. I’ve had these chronic issues since 2009, but things have taken a dramatic turn for the worse for me since 2019. 

So a couple weeks ago I did some research, and called several doctors and a physical therapist. I finally, after over 10 years of ignoring my body and its signs of distress, have decided that I need answers. 

Jumping into action felt good. 

My physical therapist feels that although i have a history of chronic pain and illness, that the severe and worsening pain, dizziness, memory problems, nausea, uncontrollable tremor and vision problems are connected to a concussion and whiplash that occurred in 2019.

My family doc, who has been seeing me for a year now, ordered a repeat brain and cervical spine MRI, as he has believed for a year now that this is MS. (only a neurologist can diagnose this, so he is pushing me to see another neurologist.)

And a rheumatologist I saw last week didn’t really address my chronic issues yet, but thinks the increase in pain and addition of new symptoms are related to the neck injury.

I feel frustrated and anxious today, wondering if any of them can really give me the answers I need. I sense that neither of them are barking up the right tree. I sense that this is something different, something else, something more…….

I suddenly realized a couple weeks ago, that I cannot fully grieve and find acceptance for what i’m going through until I understand what it is. And I can’t seek the kind of help and support I need until I know what’s happening to me. 

Today I feel afraid that no one will figure this out. 

And I just needed to say all that out loud. Because it’s an incredible burden to keep inside me all this suffering; both physical and emotional. 

And I can’t just say this to my husband every day of the week. Or my friends. Or my family. He knows. They know. It feels awful to complain all the time. So I don’t.

This blog is to give myself the space to cry and grieve and feel it. So that I can pick myself back up again and go make dinner and be with my little family. I need to be present and joyful for my kids. They deserve a mom who smiles and laughs with them and enjoys their company. 

I just cannot let this problem I’m having turn me into a ghost.