There is Tired and Then There is TIRED

I'm tired. Ah, yes. We all say it, and by "all" I mean all people, not just those of us living with chronic pain. The phrase is common and the sentiment is universal. Everyone gets tired, every day.

But there is tired and then there is TIRED. Any healthy person who has ever had a flu knows that the usual sentiment of tired takes on a whole new meaning when the body is being assaulted. It's exhausting.

Yesterday, as I heard myself say to hubby -"I'm tired"- I realized how inadequate those words are. I'm pretty good at using the word exhausted when I'm blogging but in everyday conversations I tend to use the word tired. But when I say tired, I mean TIRED, the sick-with-the-flu kind. I mean that:
-every movement requires motivation and effort
-every activity, no matter how short, drains you as if you had just run a marathon
-even thinking is draining
-the entire body is involved - every joint, every muscle

When you think about it, living with chronic pain is just another type of assault on the body, not that different from having the flu. Only worse because it doesn't resolve like the flu does, it just becomes another complicating factor in everyday life. The worse the pain is and the longer it remains at a high level, the more intense the exhaustion is. It's only during those rare moments when all pains are low, that I climb out of the exhaustion and move into tired.

I need to stop minimizing what I'm experiencing by using the word tired when I mean exhausted.

Whimsy Wednesday

Time for more Henri - the tormented cat. He always cracks me up. 

Have a great day everyone! 

Having Fun and Paying the Price

Hubby and I attended a birthday party for the 2 year old daughter of his cousin on Sunday. I knew the party would be full of triggers as it was at an indoor carousel and it was a birthday party for a 2 year old but I really wanted to go anyway. It was a great excuse to get together with some family and do something we hadn't done before. Fortunately, when the day arrived, I wasn't in rough shape so we actually got to go and enjoy ourselves.

We got to chat with family, admire the cute little birthday girl in her party dress, eat cake and ride the carousel. It was bright, loud and the movement of the carousel made me a little nauseous. Thankfully the party was short and before long we were back home. I knew I would have to pay a heavy price to the migraine and fibro overlords but I felt like the fun and the laughs were worth it. 

I woke up Monday morning feeling terrible. My whole body hurt and a migraine was already in full swing. The morning was a complete loss as I waited for my rescue meds to kick in. Then I spent the rest of the day worn, loopy, exhausted and sore. At one point I logged onto facebook and saw the pictures from Sunday's adventure and was struck by the contrast between how I looked and felt for those 2 hours and how I looked and felt after. 

I never post those pictures. Well, I never take those pictures. The ones that show me in lots of pain with no make-up, no effort put into my hair, wearing my loose lounge clothes, hiding in the dark with a pillow, blanket and chihuahua. My friends and family see this:

Besides hubby, nobody really sees this:

Even if they did see me like this, I don't think they would actually see all the pain, sensitivities, exhaustion and brain fog that I was feeling yesterday when I took this picture. As I thought about the contrast I started to question if I ought to be doing a better job to show this side of myself to my friends and family, a question I ask periodically. I thought about it last night and some more early this morning when I should have been asleep. 

The conclusion I came to is that capturing the terrible moments on film and sharing it with all my family and friends on facebook is not something I want to do for 2 reasons. One. I don't think anyone wants to see that. Two, I don't think the visual of me feeling terrible can convey just how terrible I'm feeling. BUT, I do think I can do a better job educating my family and friends about the price I pay for the fun they see me having.

I honestly don't think they have any idea that every time I go out I pay a price. The more I do, the bigger the price. And that's if I even feel well enough to go out and do something. I can't schedule my pain or even predict when it will take me out. When I'm out and having some fun, I am still dealing with either or both migraines and fibromyalgia stuff. I smile when I'm out with people, even if I'm feeling bad. 

My concerns remain about being overly open with my friends and family on social media about the level of disability I experience. I don't see that changing anytime soon but I would like to use Migraine Awareness Month (June) to open up a little more and give them a glimpse. I'm not entirely sure how that will look but I have a couple months to think about it.

What Was Interesting, Frustrating and Great About My #Chroniclife Live-Tweet

As I wrote yesterday, the 48 hour #chroniclife live-tweeting experiment I did this week was interesting, frustrating and fun. I also included all of the tweets from the experiment in case you aren't on Twitter or had better things to do. Anyway, here are my thoughts about how it went.

What was interesting 
Since the whole idea was to comment throughout the day about what was going on with me, I spent the entire 2 days continually checking in with myself to see how I was feeling and what I was thinking. In doing this I actually found myself picking up on my body's cues faster than I normally do. I was just a little more in tune with myself. The flip side of being so aware is that I was so aware. It was harder to distract myself - something I normally spend a good deal of time trying to do.

I'm torn really. Part of me thinks being so in tune is a good thing but part of me thinks the more time I spend focusing on all of my symptoms the bigger they seem and, worse, the less time I spend on living life. Perhaps there is a balance to strike.

What was frustrating 
The hardest part about this was trying to express myself in 140 characters - well 128 characters since I needed to include the 12 character #chroniclife. Many of my tweets had to be rewritten 3 or 4 times before going out. My sentences were incomplete and I frequently felt like I wasn't able to really convey the complexity and nuances I intended. That's the nature of Twitter though, isn't it? It's a snapshot, not a movie. I hope that everyone who reads will understand that this snapshot into my world is just that. My diseases manifest themselves in different ways and with different severity from day to day, hour to hour, month to month. I guess that's why I blog about it.

The only other frustration was toward the end. My brain sort of hit a wall after dinner on the 2nd day. I started feeling overwhelmed because my brain just stopped reflecting and processing the way it had been up until then. I guess I hadn't realized just how big of a task I was asking of my foggy migraine/fibro brain.

What was Great
Overall I found this experiment to be a truly wonderful experience.
-I got to interact with some new people on Twitter. I got to see myself and my diseases from a fresh perspective.
-I was inspired several times throughout the process.
-I got some great ideas for Migraine Awareness Month in June and even got some ideas for future blog posts.
-I also started thinking about ways I can use social media to communicate and be more transparent with friends and family about what it's like to live with chronic migraines and fibromyalgia.

Of course, all the credit belongs to Britt over at the Hurt Blogger who created this experiment and inspired me to participate. Thanks Britt!

In Case You Missed The Live-Tweeting

You may have noticed, I spent the past 2 days live-tweeting about living with chronic migraines and fibromyalgia. Participating in this experiment was interesting, frustrating and fun. I want to say so much on the matter so I've decided to break it into 2 blog posts. Today, in case you didn't spent the past 2 days following along, or if you don't have Twitter, I thought I'd share the tweets with you.

To conserve my energy I'm just going to copy and paste directly from my Twitter page. That's why some posts have larger print than others. Variety is the spice of life, right? There is no time stamp on these but they are in order starting with my first tweet.

Tuesday February 17th
Just woke up and can't get back to sleep even though I don't have to be up for another hour and a half. #ChronicLife

Watching TV to keep my mind distracted and pass the time until it's time to start the day #chroniclife

Not quite time to start the day but getting up anyway. The rabbit and dog both know I'm awake and are anxious to get fed. #chroniclife

Just finished tending to our fur-babies and having a little breakfast - now I need to sit and rest up before I can shower. #chroniclife

My mood has begun to change plus I'm craving fries - this signals I'm in the prodrome phase of a #migraine. #chroniclife

Due to my increasing crankiness I've decided to put on some eye brightener so I don't look quite as bad as I'm feeling #chroniclife

Already hungry for lunch. Gonna snack on sweet potato chips and edamame hummus just as soon as I gather the energy #chroniclife

My migraine is progressing into the pain phase. Will it be quick-will it be severe-will I need rescue meds? Too early to know. #chroniclife

Exhaustion is setting in. Must lay down for a quick nap before lunch. This #migraine seems to be moving quickly #ChronicLife

Short nap turned long. Would've been longer if not for dog asking to go outside. Going to brave the sun and cold #chroniclife

Pain has increased, nausea has kicked into high gear. Should've eaten at 11am. The thought of food now makes my tummy turn. #chroniclife

Trying to pull together someone resembling lunch while trying to decide if I should take an Imitrex or not. #ChronicLife

Deciding to use an Imitrex is difficult. The stakes are high as is the price paid for a poor decision. I'm taking one now. #chroniclife

I take a generic Imitrex. It makes me feel terrible - it will make my pain much worse before making it better-plus side effects #chroniclife

Side effects kicking in already. Pain quickly getting worse and my sinuses are starting to drain. #chroniclife #migraine

S&*# the dog is asking to go out again - sun and snow should really make this worse #chroniclife

In the thick of a #migraine. Laying back down, this time with an ice pack and some Friends on Netflix to distract me #chroniclife

At some point laying down stops being helpful - that time has come. I'm still a useless blob on the couch but I'm upright. #Chroniclife

Head pain, jaw pain, neck pain, sinus pain - light, sound, motion sensitive. Exhausted, foggy and nauseated #migraine #chroniclife

4 o'clock is exercise time. On tough health day like today I do only gentle stretching and gentle yoga poses. #chroniclife

Stretching always feels so good, all the pain really stiffens my body. Still feeling bad all-around just not as stiff #chroniclife

5pm and it's official - I didn't get either of the items on my to-do list done. But I did shower and stretch. #smallvictory #chroniclife

Gathering the will to feed the fur babies since I can't seem to find the energy. #chroniclife

How can such a simple task be so exhausting? It's called chronic #migraines and #fibromyalgia. #chroniclife

Trying to figure out what to eat for dinner. Still quite nauseated, nothing sounds good, but I am hungry. Hate this feeling #chroniclife

Decided to have a Cliff Bar for dinner. Small, tastes good and at 260 calories, it's a good back up when feeling so bad. #chroniclife

Feeling overwhelmed by the day and that pesky crankiness is creeping back up. Hope that some cuddle time w/hubby will help #chroniclife

Head pain is getting a little worse - some sharp pain around my right eye. #chroniclife

At this point I've begun a countdown to bedtime. One hour and I won't feel like it's too early to go to bed. Sleep = freedom #chroniclife

Finally in bed - so sweet after a hard day like today was. Good night everyone. See you in the am #chroniclife

Wednesday February 18th
12:30am- after being awaken by the wind a half hour ago and failing to return to sleep, I am officially up and watching TV #chroniclife

The whole idea now is to distract myself with mindless shows so my mind doesn't engage until I can return to sleep. #chroniclife

Just woke up again - jaw was clenched and #migraine pain at a 7. Going to just lay here until I must get up #chroniclife

Feeling VERY hungry this morning. Time to get up, deal with my pain, get some food and tend to the fur babies Pure will power #chroniclife

Once up and moving around I wasn't feeling too bad so I took advantage and made some pesto. Now I just need to rest. #chroniclife

Pain only at a 5. Headed into the shower - fingers crossed that this low level of pain will stay with me all day. #chroniclife #smallvictory

Exhausted from the "busy" morning. Busy for someone living a #chroniclife anyway. Hello couch, hello Netflix - looks like it's just us now.

Pain is on the rise. My eyes are struggling to look at things, my jaw is tense and tender and I'm fighting the urge to nap #chroniclife

Wish I had done this yesterday - eating now before the nausea kicks into high gear. #chroniclife

After food and rest my pain has gone back down a bit so I've decided to hold off on taking Imitrex for now. #chroniclife

Instead I'll take 400 mg of Ibuprofen, drink a glass of water and focus on moderating my activity/managing my symptoms. #chroniclife

Pain is creeping up again and I can hardly keep my eyes open. Maybe a nap is just the thing. #chroniclife

Awake and the pain has gone down a bit - again. Although I'm now feeling quite sore - left elbow and neck are the worst. #chroniclife

Having accomplished so little the past couple days I'm feeling like a slug. I want so badly to be up and doing. Hate this. #chroniclife

4 o'clock time for gentle stretches and yoga. #chroniclife

Feeding time for fur babies then I'll need to prep for dinner. Pain is focused behind both ears. Not enough to keep me down. #chroniclife

Feeling a little overwhelmed and so very tired. #chroniclife

I'm heading to bed now. Sure hope I sleep better than last night. Good night all #chroniclife

The end

So there you have it - 2 days in the life of me. I was glad that both days were different types of days. Tuesday was a migraine day, not the worst but bad enough to ruin the day and need medication. Wednesday's pain wasn't as bad, basically I spent all day managing my symptoms in hopes that I wouldn't have to take my rescue meds.

While this is a great slice of my life, I regularly experience several different kinds of days other than the 2 I just tweeted through. I would need an entire blog post just to go through all of them. Another day.

Whimsy Wednesday

As I continue to live tweet today I thought I would share this video of guilty dogs. Have you ever had a dog who felt guilty about something wrong?

Have a great day!

Live Tweeting Today and Tomorrow #ChronicLife

After waking up a little before 5 am this morning, I jumped right into my live-tweeting. It has officially begun. You can follow my #chroniclife journey @migrainista for the rest of today and all of tomorrow. 

I will be tweeting all about my life with chronic migraines and fibromyalgia. Check out my post from last week for more information about what I'm up to and why.

Heading into the Valentine's Weekend.

Well, tomorrow is Valentine's Day. I have big plans with my sweetheart. We are going to head over to his parent's house to help them solve a computer problem they are having and then we're going to do our taxes. Ohhhh. Ahhh. Jealous?

So the truth is, we don't celebrate Valentine's Day. In the early years of our relationship we made sincere attempts to celebrate and have a special night that honored our love on the 14th of February because, well, because that is what you are supposed to do. The trouble was, things never worked out. Either I wasn't feel well enough, or hubby was too tired. The restaurants were packed and we always had to wait way too long to get a seat and even longer to get the meal. It was expensive, stressful and never any fun.

We finally started asking ourselves what we were doing. We don't enjoy going out to dinner. Restaurant food is expensive, way too salty and not many places offer good vegetarian options. We aren't the kind of people who can count on feeling up to doing "something special" on a specific day. Neither of us have bought into the idea that what we do on Valentine's Day says anything about our relationship or our love. Ultimately we decided to opt out entirely.

The day after we got married.

I love my husband and I know he loves me. We celebrate us every chance we get by doing the simple things that we love doing. It never involves stuffed animals, expensive jewelry, dinner at a fancy restaurant, chocolate, or greeting cards. We do go ahead and mark some dates that are special to us like the day we got engaged, the day we got married and our birthdays. But we don't necessarily make a big deal about celebrating on those specific dates - opting instead to do what we can when we can.

Simply put, we don't celebrate Valentine's Day because it just doesn't make any sense for us to do so. But I have to admit I also find so much about this holiday to be objectionable. I think greeting cards are generally overpriced anyway, but V-Day cards are twice the price of the everyday overpriced cards. Same goes for chocolate and flowers, the price suddenly sky rockets this time of year. And the pressure, oh my word the pressure to have the perfect romantic night is crazy. It makes single people feel lonely and left out. It makes people who are dating feel like they have to define their relationship based on prescribed gifts and food. Yikes.

Jim Gaffigan proposed we do away with the holiday on CBS Sunday Morning this past weekend. If we were voting on the matter, I would vote yes.

Gearing Up For a Live-Tweet Experiment Next Week

I've been inspired by a recent experiment done by Britt over at the Hurt Blogger. Earlier this month she did a 48 hour live-tweet about her #chroniclife, documenting what she was going through while she was going through it. What a great opportunity to give people a glimpse into the down and dirty reality of living with a chronic pain condition.

She has encouraged other people living with chronic pain to do the same and I have decided to accept the challenge. I think the idea of taking a raw picture of the lives of different people living with different conditions is fascinating and I am honored to take part in it.

I will be live-tweeting all day Tuesday (2/17) and Wednesday (2/18) and following the basic guidelines that Britt set up for her experiment:

I WILL:
-Tweet every time I feel pain
-Share the mental health aspects of my diseases
-Share all the medications I take
-Share all the devices I use

I WILL NOT:
-Activity respond to all the replies, unless they offer a chance at clarification, or improving the education of the experiment.
-Respond to how the experiment is making me feel in the moment. I will save that for the wrap up blog post.
-Filter Myself
-Embellish how I'm feeling

I ASK THAT YOU:
-Not judge me and be constructive - While you may find yourself consciously or unconsciously wondering why I have made a decision regarding my health, I ask you to be constructive. Stop and consider why I have made or have to make that decision. How you might handle the situation. What those in health care might learn from the decisions I've made. And by all means, if you have a better work around solution, please share.
-Consider committing to live-tweeting your #ChronicLife for 24 hours to help others understand the reality of your condition(s). If you are interested please get in touch with Britt. 

Whimsy Wednesday

A little Larry David added to any day is a good thing. Here is a great clip from Curb Your Enthusiasm.

Have a great day.  

A Short Winter Break

Mother Nature gave the St. Louis area a little taste of spring over the weekend with temps in the 60s and even hitting 70 for a short time on Saturday. What a lovely February treat. Of course, migraines and a small fibro flare prevented me from doing much to take advantage of this winter break. If I was able, I would have washed the car, ran some errands and maybe even set up the fire pit.

The spring-like weekend wasn't exactly a total loss thanks to my rescue meds. Hubby and I took Gypsy to the park for a walk and I managed to make it to the grocery store. We even got our water softener installed. Of course, that wasn't so much something we did as it was something that we were home during.

Overall this winter hasn't been so bad. We haven't had any real amount of snow and while the temps get pretty brutal from time to time we also have had some nice day. Perhaps because of the mildish winter, I'm not feeling the usual impatience for spring. I'll certainly be happy when it arrives and I can do some planting and spring cleaning, but I'm still enjoying my winter wardrobe and the baking this cooler weather encourages.

She loves the park.

And we love taking her.

Whimsy Wednesday

A little fun to help get you through this Wednesday.

Have a good one.

Curating My Life - A Change In Perspective

Yesterday I wrote, "Living with chronic migraines and fibromyalgia has forced me to edit my life", as part of a post about the Super Bowl. The phrase, edit my life, reminded me of design. Editing is very important no matter what kind of design you are talking about it. We need to edit what pictures get displayed, what accessories we wear, what clothes we put in our wardrobe, what we put on our shelves, what goes in our garden, etc.

My point is, I totally get editing in the context of design and as soon as I framed my activities the same way, my perspective changed. Normally I think about the things I can't do, or how I need to modify the way I do other things, or how much my activity level has changed - you get the idea.

By simply saying the word edit I started hearing the word curate, a word with clout, prestige and class. Suddenly it wasn't about what I couldn't do but about being very selective about the things I allow myself to participate in - as if I was a museum or a or a fabulous interior space.

The things that make the cut are the things that are most important to me. I can't be everything to everyone. I can't even be everything I want to be. But, and this is very, very important, I can be great at what I am if I curate my life properly. Perhaps by purposely designing my life I can better manage all the crap. If nothing else, I bet the change in perspective will help me cope.

I sort of feel like this revelation requires that I try to develop a mission statement of sorts for myself to help me focus. Hmmm. I'll have to think about this one.

No Super Bowl For Me

Did you hear? The Super Bowl is tonight.

Pregame coverage has been hard to miss. Seems everyone has been reporting and speculating on everything from Vegas odds to outrageous ticket prices; from deflate-gate to commercials. The stores are packed with people stocking up on beer, soda, potato chips and the like. People are wearing team gear and gathering to watch the game. I almost feel like I should care, but I don't. 

Maybe I could get excited if hubby was a big fan of one of the teams playing, or if the game didn't go on for over 3 hours, or if I felt like the NFL was a good organization. As it is, I just can't get into it. 

Sitting on the couch this afternoon, trying to recover from yet another migraine, I sort of feel like a grouchy old woman complaining about the world around her. I would even bet most people would find me a real buzz-kill. But the truth is, I just don't have the energy to get excited about these sorts of cultural events anymore. Living with chronic migraines and fibromyalgia has forced me to edit my life. I simply can't take part in most of our social and cultural norms. I must carefully select what I do, only the most important events making the cut. 

The Super Bowl just doesn't make the cut.