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.