Day 29L Bullet your whole day
Uhhhh, just so you all know, this is an embarrassing post to write because when most people describe their days, they did something cool, or at least got lots of things done. My day however, is always different depending on my pain levels and even then I rarely have even a slightly productive day.
Bedtime-10pm-I usually go to bed before 10 every night, even with at least one long nap during the day. I rarely wake up feeling rested or relaxed. Usually I wake up every morning feeling like I got hit by a truck, despite sleeping in until noon. My grandma used to always tell me that if I sleep too much, I am more tired than if I had gotten less sleep. As true as that may or may not be, it doesn’t make me feel any better. There have been many times where I make myself stay awake all day, so that I can sleep at night. Even those times, I rarely get a good nights sleep because I toss and turn a lot and usually either have bad dreams or strange ones. There have been many times that I wish I could just fall asleep without having any dreams at all.
Noon- Slowly start waking up, usually it takes me a while to go from laying down, then from sitting up, then even longer to get from the bed to the couch and by that point I have already lost what seems like 3 spoons already and my day hasn’t even started yet!
For those who are just starting to read my blog or don’t know what a “Spoonie” is, here is a post written by Christine Miserandino called The Spoon Theory.In the post, she describes to a friend of hers what it’s like for her to deal with Lupus. She gives her friend 12 spoons and asked her to tell her everything she does on a normal day and each task will take a spoon, sometimes more, before she even gets out of bed. She does not have the option to get more ‘spoons’ to help her get through the day.
2pm- At this point in my day, I have successfully made it from the bed, to the bathroom and then the couch, feeling exhausted. I hadn’t even tried to change my clothes or shower because already I was running low on spoons.
2pm-7pm- I always feel embarrassed when admitting that usually by the time I get to the couch, I rarely move from my spot. I watch Netflix, rest, and try to save my energy for the shower I desperately need later today. And since it is Monday, I have plans with a friend of mine to go to the dollar store and try and work out my stiff muscles and get as much exercise in before I hit my exhaustion point. We do this each week. Some days we just watch a movie, but most weeks I try and force myself to go out somewhere, anywhere to get the little exercise I know I need and try and relearn how to be human around ‘normal’ people.
7pm- At this point in my day, I usually require the help of my husband to help hold me up in the shower, or help me out when I sit in the tub letting the warm water relax my muscles and, I swear, Every time I take a bath and let the water cover me and I feel myself relax, I wish I could meet the person who invented the tub and tell them I love them because I feel so much better after the bath with Epsom salts. It never lasts very long, the relaxed and pain free moments after my bath, so I usually head right to lay down on the bed while I try and get ready for bed.
8-10pm After my shower and getting dressed if I have even a fraction of energy, I wash my face, put moisturizer on my face and then put my lotion all over my body to try and give my body the moisturizer it desperately needs before it ends up cracking and bleeding from the dryness.
10pm- Finally, I stop fighting my body to stay awake and slip into an unrestful, but needed sleep.
My day makes me so embarrassed when anyone asks me what I do since I can’t work and so I sit at home all day. Some days I push myself to do something easy but productive, just so I can feel even a fraction less embarrassed when people ask me about my day.
Since my doctor appointments, (Pain Management, Physical Therapy for my bladder, Endometriosis and Pelvic Floor Dysfunction, surgeries, tests, and new treatments that I really hope will mean the end of my pain, of my body trying to destroy itself from the inside out) and other appointments are not set at the same time each week, there are a few days during the week that I do get out of the house. I do go places. Yes, my life is super boring and it seems like I want to be lazy, but the truth is, I would trade anything in the world in order to have even just one good day a week.