fibromyalgia

A Gal’s Best Friend

Velcro Dog and Thunderstorms

I’m not going to apologize for not posting. These last months have been about writing the story, revising the story, finding a freelance editor, and trying to find a new way to bring order to what feels like a chaotic life.

I’ve posted before that I’m not working. My full time job is all about managing my chronic health issues, trying to keep on top of house stuff, and writing. Oh, and being Velcro Dog’s entertainment and food service. One would think that having so many hours in the day would mean I could get it all done and be rested and relaxed.

Excuse me a moment while I laugh/sob hysterically.

Here’s the thing, not only are there only so many hours in a day, there’s only so much energy a person can expend during a day. With my brand of health issues that energy varies from hour to hour let alone day to day. Every day I start with some goals and a task list. And every day I have to prioritize and reprioritize those lists so that I get the absolutely most important things done. Things like pay the bills, feed the dog, take my meds, interact with my husband. On crazy low energy days this may mean I eschew showering and instead feed and exercise the dog so he won’t plot ways to kill me in my sleep. Or I skip making my word goals so I have energy enough to have some quality time with my husband. Or toss my blog plans out the window so maybe I can work on my wip.

This is what I mean by chaotic. I can’t create a schedule and just stick with it. I have to be flexible with my energy output. In order to do this I need to be okay with leaving things undone.

Which is HARD for me! I am that typical first born child who wants to excel at everything I do. I’m a recovering perfectionist who is learning what good enough looks like. And trying to make peace with the fact that even good enough changes from day to day.

One of the things that helps me the most, aside from some amazing friends, is Velcro Dog. When I was in grad school for my psych degree I met a woman who trained therapy animals. We got to talking one day and she told me just how important animals could be to the therapy process. We had a different dog at the time, a big white fluffball who always seemed to know when I needed to snuggle with him. I told my colleague about our fluffball and she told me about her animals.

Then I graduated and didn’t think much more about therapy animals until I had to leave my day job and spent most of my days at home. Days turned into weeks. Weeks turned into months. And yes, months have turned into years. Pain and fatigued filled years.

Last year I started thinking again about therapy animals. Velcro Dog is not a trained therapy dog. He’s just a very loving dog who happens to think my days exist to serve his needs. I’m not complaining. I love my dog and I am happy to spend my time playing with him and snuggling with him. Even when he’s driving me up the wall because he has energy we weren’t able to burn by going to the dog park.

But I think of my life without him and how these last years would have been very different if he wasn’t with us. I would probably be way more depressed than I am. And I would not move around as much as I do. I wouldn’t be laughing as much without his antics to bring me out of myself. There is something incredibly life affirming about Velcro Dog and I’m so glad he loves me enough that he never plots ways to kill me in my sleep. I hope.

Pre-Writing Conference Anxiety and Me

Airport

I’m going to my first writer’s conference since I had to quit the day job due to my chronic health issues. It will be my first time traveling alone since that auspicious event as well. And I’m somewhat nervous.

I used to travel a lot for work. And I used to attend conferences all the time. I’m no stranger to airports and sleeping in strange hotels. I am an introverted extrovert. Or is that extraverted introvert? Either way, I enjoy being around people and can handle the buzz of the masses for a few days with grace and aplomb. Or at least, I used to.

Why am I nervous? I’m nervous because I will be navigating the airports by myself . I move slower than I used to. I can’t managing being on my feet for long periods of time anymore. And if my February vacation taught me anything, it’s that the lines are longer and slower than the last time I travelled alone. I’m going to need to give myself more time to make it through the security check and then wind my way to whichever terminal my gate happens to be at. I’ll need to stop and rest along the way.

My stress level is going to be elevated, which is something that triggers the pain and fatigue in my body. I’ve already started making checklists of checklists I’ll need to have with me. Already plan to have them in Evernote and printed out. Cuz it will be just my luck that my phone dies at any point along this journey in July. And I’m not planning on my bringing my laptop. Maybe my iPad and a keyboard. But my laptop is too damn heavy for me to lug around by myself.

It’s going to be hot and humid in Orlando. No, it’s going to be OHMYFUCKINGGODWHYDOESANYONEGOTOFLORIDAINTHESUMMERIAMGOINGTODIE hot and humid in Orlando. This means using my down time to remain cool and comfortable in my hotel room. Maybe at the hotel bar. Definitely not anywhere outside. I love Disney World from the one brief trip I had there during a work trip about ten years ago. I’m so very sad I will through necessity need to skip all the park stuff and will be held hostage by the conditioned air. Heat aggravates my health condition. Humidity nearly kills me. My friends will be having great fun with Mickey while I…won’t be.

I may need to skip sessions or events like the RITA and Golden Heart awards ceremony. Not because I can’t afford a new outfit (which I can’t), but because if I’m going to make the most out of the conference, I need to save my spoons for workshops and fangirling people like Farrah Rochon, Erica Monroe, Kristine Wyllys, Kimberly Fisk (who is also going to be my awesome roommate), and everyone else I read and stalk follow on Twitter. If a morning is difficult, I’ll have to make the difficult decision to skip workshops or meet ups. If a migraine is coming on, I’ll need to hide in my room for a while. If the fibromyalgia is being a PITA, I’ll need make sure I don’t flare so badly I am in my room for the rest of the conference.

Which means I’ll need to pace myself. And not commit to too much ahead of time. And give myself permission to find a dark corner to sit and cry in when my energy flags and I become very upset with my health. My body and I have this epic love hate thing going on and I’m not too proud to say my body mostly wins. Living with chronic health issues can almost break me, especially when it means I can’t do what I want to do. It’s like I’m the unpopular kid at school crying into her ice-cream because all the other kids got invited to Susie’s birthday party except for me. Okay, it’s not quite that junior high. But it is frustrating.

So, I’m nervous. Sometimes at night I’ll whisper into my pillow just how terrified I am about this trip in July. I’m excited, don’t get me wrong. I love my fellow romance writers and spending time with them in person is just about the best thing in the world. But I’m also terrified that my body is going to fall apart and I’ll have the most expensive health flare ever. Expensive in that I paid good money to go to HELLA HOT ORLANDO in order to have it.

I’ll be okay. No, I’ll be better than okay. There are going to be people at this conference who get it. They understand living with chronic pain and fatigue and the choices that must be made every hour of every day. If I need to breakdown, I know there will be people there who understand and will help me to my room, or lend me a shoulder. It’s a sisterhood within a sisterhood. And that’s what we do, we’re there for each other.

And no, this won’t be like the last time or five I have been to this writing conference. I’m trying to look at this as though I’m a newbie writer attending for the first time. My experience may just be that different. And I need that to be okay.

 

Photo by Hernán Piñera via Flickr, cc Attribution-ShareAlike 2.0

When Health Fights the Story
What it's like to walk around in a fibro fog. Barely able to see ahead of me.

Original image via Flickr WANA Commons courtesy of Celine Jeanjean

The writing, she is not going well.

I know why. The weather is changing and my fibromyalgia is fighting me every step of the way. How do I cope? Honestly, there are days I don’t cope. On those days I can be found curled up in ball either reading books or watching movies in an effort to forget the pain. Or my mind is so fogged that I can’t remember what I did a minute ago let alone where the story is currently going.

I’m pulled so far out of the story that it takes me rereading my notes and what I’ve previously written in order to jump-start my writing momentum. And this happens more often than I wish.

This last week has been full of bad fibro days. My hands hurt so badly I can’t type. My body aches worse than the flu, with sharp knife like pains stabbing at the base of my neck. My vision is our of focus and my brain; forget any help from that corner. My brain is so wrapped in cotton balls that it’s amazing I can tease out enough brain power to get Velcro Dog to the dog park for his daily jaunt.

It’s days and weeks like this that can plunge me into a grey funk where I question whether I’m ever going to be able to do any productive ever again.

In the past, when I worked a day job as a project manager, I would fight the fibromyalgia. I had deadlines and people depending on me. The projects I was assigned to were important for the company. I couldn’t be the squeaky wheel. Or worse, the locked wheel that could turn no longer. So I pushed and I did half-assed work (that, incidentally, others thought was great. I wonder what the learning here is?). I would come home so exhausted and in such pain that I would collapse on the couch or on the bed and not move again for hours. Weekends were about allowing myself to sink into fatigue. I was no use, no help. At work, I was productive, but just barely. At home, I was a paralyzed zombie.

This is why I quit the day job a year ago. And why the writing has only been barely productive. I’ve also been in creative recovery. I had to find the joy in the story once again. And I found it. It’s a good story, if a basic one. But there is beauty in simplicity, and this story, she is beautiful.

If only I could write it. Every day. Stay connected to the rhythm and the prose. I do so much better when I’m able to remain rooted to my story. So much better.

What’s a girl to do when she really can’t sit, or lay, down to write? She beats herself up. Which is the opposite of productive. It’s so destructive, it can destroy that fragile bud of confidence that’s growing out of repaired and replenished soil. Negativity is the salt that destroys the earth. I refuse to be my own salt.

Last night I had insomnia, another symptom of fibromyalgia. I wrote for a bit, because I was up and the computer was on. The words were a hot mess, but they were on the page. And this is the shitty first draft so get over it already, girl. Just get over it.

After I wrote my hot mess, I started sorting through a box of old papers from college. I’m attempting to declutter the house so it’s less of a giant to clean and organize. This box has been sitting in the office for years, just gathering dust. I was almost manic in glancing through the notes and tossing. Glance and toss. Glance and toss. Glance and, whoa, now this is interesting. I found some notes from a psych course I had taken to earn my M.A. in Psychology. The notes were around self-care. I had written in big bold letters, “BE KIND TO YOURSELF!” Even then I knew I was my own worst enemy.

What does it mean to be kind to myself AND still be a productive writer, keeper of the house, and slave to the dog? Especially on the not so great days.

I don’t know. Not 100%. I know attitude is key. And that there must be tools out there that will help me write when my arms and hands just won’t cooperate. I know that I can research on those days, or read and edit. I can email or message friends and let them know what’s going on. I can look for something joyous to bring me laughter. I can fill the well instead of depleting it.

I don’t have a solid plan other than to make a list of things to try, and evaluate what works and what doesn’t. Experimentation, life at it’s best.

And I know that I need to incorporate mindfulness now more than ever. Acknowledge what I’m thinking and what I’m feeling without judgement. And just let the thoughts go. Or counter the negative thoughts with the truth. Which means knowing what is true. Living in the moment. Just. This. Moment. The past is done. The future, it’s not written and definitely not guaranteed. Now is what I have. So take things one moment at a time.

Today may not be a great day to contribute to the story. That doesn’t mean I’m a failure. Or that this story will never be written. It means I accept today for what it is and fill it with things that I can accomplish. That I enjoy. That will make tomorrow’s return to the story all the better.

The story, she may not be going so well. But I am.