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.