My alarm is set to go off at 5:50, just so I can hit snooze several times. When my alarm goes off again at 6:10ish, I’m generally awake enough for the pain I’m in to really hit me. I do some stretches in my sleepy snooze state to try to loosen up. I’m finally up about 6:30. I hobble to the bathroom and play on my phone to wake up. I take my meds and do some dry shampoo (there’s no way a shower is happening in the morning during winter y’all, and sometimes this doesn’t even make it) before I head back to the bedroom to psych myself up to pick out clothes and get ready for work. I may use my biofreeze if I have particularly bothersome joint (i.e., if I had a saw, that joint would be history). I make some coffee and throw together my food for the day – some protein bars and greek yogurt and usually something else healthy and/or tasty (like some GF bread or pastries, or hummus and chips).
I head out to catch my 7:15 bus around 7:07ish or so – earlier if it’s icy or snowy, because my current apartment complex isn’t maybe the best at clearing any of that. Hooray. Our building is behind two others, and I usually go through one of the others to get to the bus stop so I’m not outside in the elements as long (read: I live in Wisconsin – ’nuff said). Since my bus starts its route at our complex, I’m able to catch one of the front disabled seats. It makes it so much easier for me to get around without having to whip out my cane and feel embarrassed.
Once I get to my stop, I have to walk a couple blocks and a few sets of stairs to make it up the hill and into my office. I’m usually in early, so I spend time with my work BFF before I’m actually scheduled to start. I usually am pretty into slurring my speech in the morning – something that much be a side effect of either having to be here or a medication, but I’m unsure what. I’m pretty tired in the morning and not necessarily here if you know what I mean. I spend most of my time on the computer, balancing our department credit cards and handling travel arrangements and all sorts of other things. When I have lulls in my day, I spend time working on our social media. Throughout the morning, I eat 50-100% of the daily value of protein.
By the time lunch rolls around, I’m pretty tired already. My biggest consolation is that for an hour I get to choose what I do, and at the end of that I have 3.5 hours until I get to go home. I write blog posts, participate in twitter chats, and just generally work on advocacy issues in addition to checking out my own social media (now that I have my wedding 85% planned anyway!!). I’ll make sure to check my calendar so I know I’m not missing any chats or things I’ve promised to be a part of. When it’s nice out, I try to go outside for a little bit of lunch, but with our lovely cold temps lately that’s not been an option really. On campus, they don’t do a great job of taking care of the sidewalks either so hooray for that. Every other Friday, we have faculty/staff meetings at lunch (which I don’t usually eat at) so I eat early or, more often, late. Lately, I’ve tried to cut back on caffeine, but I have to have some by lunch or my migraine/neck/back issues go crazy.
After lunch, I tend to sort the mail and take care of any additional packages that may have been delivered. I also start up my music if I haven’t already. It’s a huge part of what gets me though the day. We have office support staff meetings every other Monday at 2, so I’ll get ready for those when they happen. If I have any travel to arrange, I try to make sure I get it done in the morning as it’s usually less busy. I try to just kind of get random small things taken care of after lunch and save the bigger projects for the morning. Lately, at some point in the day (near lunch) I have to take a muscle relaxer. My neck/back have been huge issues lately and I’m not sure just why as of yet.
By the time 4:15 comes around, I start to put away our credit cards and keys and get ready to close up shop so I can be out of here at 4:30 and head down to the bus stop. There are more buses in the afternoon that can get me home than in the morning, but since my quitting time coincides with most people’s that also means the buses are more full. If I’m lucky (and I usually am) I can snag one of the disabled seats and not be forced to stand or crawl over someone.
By the time I get home, I’m usually fairly tired. T doesn’t get home until about half an hour later, so I’ll use the time to play video games or do Truvio surveys or watch TV or other things. I may eat a protein bar or a bowl of cereal, as I’m often pretty hungry about this time too.
I wish I could say that I was sticking to my running regime to train for my 5k, but lately I just feel so awful I spend most of the night on the couch. Recently I’ve begun to wear a pedometer and realized that I walk an awful lot more than I thought – a half mile by the time I get to my office in the morning alone! My new drug (Cimzia) is great for joint pain but I find my systemic features are more prominent than they were when I was in the grey area of no drugs. Maybe I’m just able to focus on that more as my joint issues are calming down. Who knows. Mentally, though, I’ve been able to handle paying more attention to things and have caught a number of mistakes made when I had high pain (i.e., when my Lyrica was tied up in the prior authorization game and no one was doing their job to move it forward). It’s frustrating to see this affect my job performance as well as other aspects of my life.
I’ve also been working on a number of projects lately that are keeping me pretty busy. I recently served on a JA Youth Panel for my local chapter of the Arthritis Foundation and I’ll soon be in DC for the Advocacy Summit, so I’ve been doing a lot of research and putting a lot of information together for all of these things in addition to planning my wedding. I’m not sure people understand how much effort I put into any of these things – mostly because I tend to not brag – but with the panel I spent basically November to the morning of the panel on February 22nd reading and creating lists and asking other people to share ideas and listing points to hit. I seem to be involved in a lot of these types of things, and while many may regard them as special events, they really are a part of my everyday life. Between my research and spoonie chats (every Wednesday night 9-11 ET on Twitter – use #spooniechat and follow DawnMGibson for info), there is some special thing I’m working on.
I take my bedtime cocktail of pills at 9pm so that I can hopefully be asleep by 11ish. Some nights I fall asleep before I even make it to bed and T has to get me coherent enough to get to our room. Sometimes it’s hard to find a comfortable position, especially with my neck and back issues, so falling asleep takes longer even though I’m ready to go. There are nights, though, where I can’t sleep due to pain but can’t take more pills if I want to work the next day. Being awake with nothing to do but think is very hard on chronically ill people. We think about everything we fail in and about all of our fears. We wonder if our new symptom is a side effect of a med or are we doing something wrong or do we have yet another illness. I personally think about death a lot due to having lost friends to their respective diseases. I worry about the future a lot, and it’s hard to turn that worry off. It’s hard to operate without enough energy/spoons. It’s hard to face these big issues alone – and to be in a state of mind where you seem to face them every day.
The great thing, though, is that I know the chronic illness community gets it. And that makes all the difference.