Mourning

I'm about to write about something that a lot of people know about and experience; yet it rarely gets talked about.

Unless you're even slightly acquainted with me, that is. I've been talking about my chronic illness pretty consistently since I started having obvious symptoms a little over a year ago.

Fibromyalgia has changed me and it keeps changing me and I seem to feel the need to explain this to everyone I interact with, including myself. Then I get frustrated because, despite how many people are dealing with chronic illness of some sort these days, there seems to be so little widespread knowledge of how it affects people.

When I first started feeling pain, twitching and being chronically tired in the fall of 2016, I had an idea of what might be happening. I thought that since I went to the doctor fairly soon after the symptoms started (thanks to a close friend who pointed out how frequently I was feeling sick and encouraged me to go!) I could start to get things under control and continue to live my normal life.

For a while, I was right. I was tired on the weekends and couldn't run as far as I used to, but for a few months I was able to continue to be as social and work as hard as I used to.

And then, over the course of a few more months, I could no longer understand myself. I became a different person, a person whose body I could no longer interpret or predict.

I officially started mourning on Thanksgiving this year. A few years ago, I was able to ride my bike to a couple of different houses and have multiple Thanksgivings and was still able to walk the next day.

This year, I was in too much pain to drive to Peoria to be with my family and too tired to wait in line at the buffet that I went to in Tucson instead.

I wasn't even sure at first if that was the case. I hurt, but maybe not too much. Maybe I could make the two and a half hour drive. But I remembered that in the past the drive made me tense and stiff and I would be in greater pain afterwards. But maybe this time I wouldn't? I ended up texting friends who also deal with chronic illness and asking for feedback. I didn't know what my body was trying to tell me so I looked to other people to help me understand.

The decision to stay in Tucson was the start button for my mourning period, a common part of chronic illness that doesn't always get acknowledged. I cried while I cooked my Tofurkey, I cried while I texted my friends to make alternative plans, I cried while waiting in line at Govindas, I cried while bingeing the Good Place for the rest of the afternoon.

I finally acknowledged that I've lost a lot of the control that I worked to have over my body and my life. I can't commit to plans the way I used to, I can't always plan on having energy to do things after work, I can't run or bike, I can't keep my house as clean as I want, I can't participate in hobbies like I used to, I can't work as hard or as much as I want to. I'm a different person now, and not because I want to be.

It's possible that I will gain more of that control back as I get farther into this illness and relearn how my body works. That's my hope. In the meantime, I'm trying to be nice to myself; to accept and be grateful for what I CAN do, to plan around the things that I do know. I'm tracking everything, trying every suggestion, starting over in so many places.

While I do these things, I'm also trying to remember and acknowledge the importance of mourning. It's okay and even healthy to be sad for what I've lost, even if I see that my fibromyalgia isn't as bad as it could be. It's okay for me to be angry and grumpy sometimes. It's okay for me to take time to be by myself when I need it. This is part of healing.

Does anyone?

Does anyone really like to shop for groceries?

I think I did when I first moved out on my own. It was a freedom and a challenge: I could now eat whatever I wanted, whenever, as long as it fit into my $10/hour budget.

Now, though, ten years later, grocery shopping has become another chore on the list of things I need to do to survive as an adult. And when I started showing symptoms of fibromyalgia about two years ago, shopping for and eating food became complex and anxiety inducing.

I have seen the following doctors between late 2015 and today:

• sports medicine specialist
• physical therapist
• psychiatrist
• therapist
• primary care doctor
• neurologist
• allergist
• rheumatologist
• sleep doctor

Almost every single one of them has had an opinion of what and how I should be eating.

Here are the things I've been told to avoid:

• sugar
• dairy
• gluten
• soy
• eggs
• nuts
• shellfish
• carbs
• calories
• preservatives
• chemicals
• caffeine
• spicy foods

Here are the things I've been told I should eat:

• Meat (even after stating I'm a vegetarian)
• spicy foods
• honey 
• juice
• specific fruits and vegetables
• probiotics
• All Of The Supplements
• Food cooked by a personal chef that I'm supposed to hire

It's not totally obvious from these lists, but a number of foods on both lists overlap. Also, if I followed all of the advice from every doctor, there would actually be very little left in the world for me to eat.

So grocery shopping and eating have become a complicated, exhausting, and expensive dance that I never asked to be invited to. 

When I started feeling consistently low energy and in pain toward the end of 2016, I stopped counting calories and thinking about weight gain for the first time in my life. I tried to just eat when I was hungry; to eat what I knew to be healthy, eat what I knew would make me feel good, and to not waste my precious little energy deciphering whether or not the food that I could afford to buy met the stringent criteria I'd been given by various doctors.

Then, of course, came the "If you lost weight you'd feel better" and the "You should be exercising more", even though the weight gain was a side effect and came after everything else that was going on. The expectation seemed to be that I should somehow still have the ability to maintain the active lifestyle I used to have before fibro kicked in while also figuring out a complicated diet plan, readjusting to work so that my job wouldn't drain all of my energy, keeping my house clean, continuing to see friends, etc etc.

Does anyone with a chronic illness really ever figure out how to manage and balance everything? I'm only at the beginning of my journey and I hold out hope that I'll find some combination of suggestions and advice that works well for me.

In the meantime, I'm going to continue ordering these high calorie, carb-full vegan meal boxes I've been getting because they are infinitely better than trying to think of and shop for what to make on my own. 

I just want to live.

There's a lot going on behind the myriad facets of my blood and medical phobia: in seeing others' wounds there's over empathizing with their pain; in witnessing a medical emergency there's a fear of being unable to help; in getting an MRI there's a feeling of being trapped.

I've been in therapy for a long time dealing with generalized anxiety, depression, and some trauma related stuff. What's interesting is that, as I've healed from the wider reaching problems, my panic in relation to blood, injury and all things medical related has become significantly worse. There are two reasons that I can currently think of why this might be: 1) I'm becoming more in touch with my feelings overall and 2) I really, truly, wholeheartedly want to live as long as humanly possible in a way that I didn't during the first 20 something years of my life.

In some kind of comedic timing, my improving mental health was also met with worsening physical health, peaking with a current diagnosis of fibromyalgia. In the larger scheme of things, fibromyalgia (or at least, my version of it) is fairly mild, manageable, and generally not life threatening. Combined with a phobia, however, the symptoms and effects of this chronic illness are maddening.

In these early stages of examining all of the symptoms to make sure that there really isn't anything more sinister at play, I find myself reflecting frequently on my own mortality. When I'm short of breath, I begin to imagine that I have tuberculosis. When I have trouble falling asleep because of my pounding heart, I'm convinced my heart will stop while I'm sleeping. When I struggle to push my stiff body into a standing position, I expect to hear my bones crack irreparably.

All of this comes together into a constant, electric cacophony of anxiety over which I scream, "I just want to keep living". 

I've been convinced that I don't want to die ever since a near death experience I had about 8 years ago. Before that, this belief was questionable. I tended to waiver between indifferent, wanting to sleep forever, and being okay where I was that day.

Comparing this past to my current situation sometimes makes me furious: I finally really, truly want to live and I am suddenly daily reminded of how fragile life is.

I believe it's finally time for me to face this phobia head on: to lower it's volume so I can hear the more subtle notes in the discord. Underneath the daily balance of life and death that we face as humans, I think there is a beautiful waltz; a delicate dance of being able to appreciate what I have without obsessing over losing it; of seeing this chronic illness as life changing but not life ending.

In movies and books a serious illness tends to lead to the story's hero taking some kind of life changing adventure that inspires them to live better. All I really want from this fibromyalgia experience is to find some grounding in reality; to be able to acknowledge the changes in my body without sensationalizing them. I'm strong. I know I can handle this. I just have to convince the rest of my body that it can, too.

When the "chronic" in "chronic illness" becomes real.

I was officially diagnosed with fibromyalgia about a week or so ago. I thought that the diagnosis would bring relief- I had assumed I'd had it almost since the beginning of having symptoms, and I thought a diagnosis would help me feel validated. Instead, though, I started to feel very depressed- in a low energy, low motivation, grieving sort of way.

The depression turned to anger and anxiety this morning when I woke up feeling exhausted and stiff and foggy and remembered that Monday is my longest day of work with the most clients and the least amount of breaks. When my supervisor asked me this morning how I was doing, I told him the truth and asked for help. How do I manage this exhaustion and keep this job that I love?

He brought up two things: a dialectic from Dialectical Behavior Therapy (DBT) and a story he'd heard about a president of the National Fibromyalgia and Chronic Pain Association who kicked off her presidency by hiking Death Valley and telling the world about it, and how the way she talked about and broadcasted this story could have been invalidating to so many people. (I haven't been able to find the story my supervisor was talking about, but the idea of this happening relates to what I'm going to write about so I'm going to keep it in.)

In DBT, we balance the idea of validation and change, and acceptance and change. In my case, that would mean acknowledging both that I have a chronic illness, that it has changed my body, that I can't do as much as I want to AND that there are things I can do to manage it, to feel better, and that acceptance doesn't necessarily mean I have to stop doing what I love and living a life I want.

What a struggle! How do I validate what I'm feeling AND avoid long periods of unproductive moping? How do I allow myself to feel depressed and grieve AND keep moving forward? How do I practice self-care without limiting myself? How will I know if I'm accepting too much and changing too little...and vice versa?

There are two fairly common responses that I tend to get when I first tell people that I have a chronic illness: "Wow, that's really terrible and sad!" and "Don't worry; you'll be okay, you can still do anything you want! Just have a positive attitude/eat this special diet/do yoga/etc." (There are, of course, also a number of more moderate responses in between those two, and I am grateful for people who respond in these ways).

The woman who crossed Death Valley and used it as a "You can do this too" type message may have wanted simply to be an inspiration, but this event could also have fallen squarely in the second response for so many people. I would love to be able to hike (not in Death Valley though...) that far and run and dance and work long hours and take myself on a solo road trip and have a wide social life like I used to, but I'm not there right now and I don't know if I ever will be again. When I feel depressed about fibromyalgia, it's often in relation to wishing that I could do those things and instead being weighted down to the couch, too tired to even read.

So what do we do about this? How do people with chronic illnesses still live lives that they love without overdoing it? How do we know how far to push ourselves?

How do we balance this acceptance, validation, and change?