I Have the Blues

Carolina Blue Skies and Loblolly Pines

When I declared myself a writer in a recent post, I also promised transparency, authenticity and vulnerability in new ways.

That's a scary proposition.

I'm here today to say that I have the blues, even while we are here in this beautiful place filled with Carolina blue skies, where I wish the ocean waves could wash away my physical and emotional pain.

March Came in Like a Lion

Each year at the beach has been a transformative one for me. It's been one in which I found emotional, spiritual and physical healing. 

This year has felt so completely different. 

I may look back after the end of the eight weeks and decide that I did, indeed, grow and learn (I'm sure I have), but it's been a more restless, agitated process than in years past. It's been fraught with trying to learn how to live with and accept this illness so that I can find more peace and joy. 

What we had all hoped was that my time here would help to get me back on track physically after my setback in October. 

It breaks my heart to be in this gorgeous place and have many days when I am not well enough to enjoy it. I'm sad that I haven't been able to increase my walking, go on many outings, or just feel better in general. 

While we are still doing things--including making little outings and dinners out and visiting--it's much more limited and it's always a struggle with a price to pay later.

Something is 'off' that is keeping me from getting back on track physically and seeing forward motion, which for me, always triggers depression. I just want to figure out what I need to fix and do it!

Creek in Our Neighborhood

Depression is a hard topic for me to talk about, even while I openly empathize and support others I know who struggle with it too. 

It's like adding one more 'issue' to my 'issues'. 

One more item to pile into the category of 'things our society thinks we should feel shame over.'

I'm tired of feeling shame or being shamed for being a person with a disability, for having that disability be one that most people don't believe even exists, for being on Medicaid, for being a survivor of sexual assault, or for struggling with anxiety and depression as a result of chronic illness.

It's also a hard topic because for so long I was simply dismissed by doctor after doctor as being depressed and anxious rather than dealing with an actual physical genesis for my problems. I don't want to feed into the stereotypes that already exist about chronic illness (we're lazy and like to sit around and eat bon bons) and specifically chronic fatigue syndrome, which leaves so many of us disbelieved and dismissed because really, how bad can an illness with 'fatigue' in the name be?

A recent article I read noted the following about chronic fatigue syndrome:

Epidemiologists have suggested8 that the anguish of contending with the disorder and society’s general dismissal of it contribute to an up to sevenfold increase in the rate of suicide for people with ME/CFS. 

Those are some serious numbers that we need to contend with and face as a chronic illness community. I have not been able to get them out of my head since I read those words.

In Unrest, Jennifer Brea says something to the effect of: "I'm so proud of myself for not killing myself yet."

That might not have been the best way to approach suicide in an illness that is already seen as 'in our heads.'

One of my favorite books in recent years is Me Before You, whicht I felt realistically portrayed a quadriplegic man's ultimate decision to legally end his life. Our neighborhood book club all loved the book yet we each saw it through very different eyes. At the time one member yelled at me: "If you ever said you wanted to do the same thing I would be so angry with you."

I have never forgotten that moment. How I felt such empathy and compassion and understanding for the character, Will, who ended his life. How he had been given a way to end his life with dignity on his own terms. I understood his choice. Not because it was mine, but because of the suffering illness and disability can create.

And how, what we need most, is not anger at someone for seeing suicide as a choice, but compassion and prevention and, for God's sake, acknowledgement, awareness, treatments and help for people with chronic fatigue syndrome.

The Osprey are AMAZING to Watch!

Since I got sick, depression has been an on and off companion for me, and is especially exacerbated by setbacks like I am having now.

Sometimes I worry that I will always live with some degree of low-level depression as a result of living with such life-limiting chronic illness.

However, it's important to me to try to find a way to live more peacefully, contently, and acceptingly of my life as it has been given to me. I work super duper (like super duper) hard on this--through learning, medication, meditation, counseling and surrounding myself with a strong support system. I try to find joys and gratitude in every day.

I seek out little things to look forward too, even if it is a piece of chocolate or a TV show or texting with a good friend. 

I get up every day and give it my best shot. I may not be able to do anything physically other than eat, sleep, rest, and hang out, but I try.

Spring is Springing Along the Creek

What gets me stuck is how to find a way to be at peace with this body that betrays me every day. 

I am profoundly sad that I cannot engage in life in the ways I love. I spend an inordinate amount of time unhealthily thinking about how:

I wish I was healthier.

I wish I could work.

I wish I could go for long walks.

I wish I could cook.

I wish I could be independent.

I wish I could get better.

I wish I could have more hours in the day.

I wish I could do more to make the world a better place.

I wish I could read a book.

I wish I could travel.

I wish I could go on a girls weekend.

I wsh I could dance.

I wish I could take photography and art lessons.

...you get the point!

Instead of being able to accept that my days are truncated and hard as it is, I make it worse for myself with the endless lists of "I wish..."

Really, I just wish I was healthy. Over and over and over again.

I Love To Walk Along This Creek

I also can be super sensitive to medications. For example, Florinef, which is commonly used to treat dysautonomia caused me to be so depressed and anxious I did not recognize myself. It was terrifying.  I kept 'waiting it out' until I couldn't take it anymore and stopped the medication. I quickly felt like myself again. Thankfully, that was in 2001 and my episodes have never been that bad again. This side effect happens to 0.01% of patients. Ha!

Currently, we are beginning to suspect that while it is not a common side effect (1-3%), the clonidine may be contributing to this setback and more depressive episode. We had hoped this medication would help with both sleep and GI symptoms. 

I am in the process of cutting back on the dose to see if it will: 

1. improve mood

2. reduce fatigue

3. reduce dizziness that had increased as the dose went up

As my GI doc says: there are always a lot of moving pieces to my case, so it's very hard to sort out what is what.

Wildlife Galore Here

It's very hard to sort out the depression from the illness. 

What makes me the most sad day after day, week after week, year after year is how little energy I have to engage in life. And how, the sicker I am, the harder each of those actions of engagement become. 

So much of the past two decades have been about enduring and surviving, and often suffering.

Sometimes I do want to disappear. I want to evaporate. I wonder if I would like to not wake up the next day.

These feelings were the worst during the years I was completely bedridden. 

It scares me when I think maybe I just don't want to keep at this. 

What keeps me calm and grounded through these moments is that I never have been and remain still NOT actively suicidal and would not even think of making some sort of plan. I'm too afraid of dying to do that! I also stay grounded by my support system with point people I make sure to tell where I'm at emotionally. I always have professionals on board as well.

A Good Option on Days When the Beach is too Windy!

When we are at the beach I get a lot of messages about how much fun people hope I am having. I don't know what to say.

I hate being a Debbie Downer.

At the same, I believe that chronic illness and depression are interwoven, inseparable, intertwined  and important to talk about. 

I hate being depressed, but even more so when we are at the beach. Berating myself for being so isn't helping either. Hiding it from those I love or who follow my story doesn't help anyone either.

When I read the words about why patients with CFS commit suicide, I knew that part of my own voice had to be sharing my struggles with depression, my understanding and empathy for why some people do choose to end their lives, and my hope that by sharing my story I can be a voice for those who have been silenced by and because of this illness.

I have what so many people with CFS do not have--a caring team of providers, caregivers, puppies, a support system and insurance. The least I can do is use my voice and hope that it means we no longer lose so many of our fellow warriors.

I am here. 

I have the blues. 

I will find my way to peace.

Blessings,

Emily