Every day starts the same. I wake up after roughly 4-6 hours of sleep (I lay in bed for hours thinking about everything I didn’t do the day before, and everything that I need to get done tomorrow). This is the reality of someone who has a lot to do in a body that is able to do none. My thoughts race about how will I get it all done, can I rest in between meetings (even though I work remote), is anyone mad at me because I missed events recently, have I spoke to all my friends and family, do any of my medications need to be refilled – and so on, and so on, anxiety is a b**tch, but I digress..
So I wake up in the morning, and for about 10-15 minutes I talk to myself and will my body to get out of bed. “Yes, I know you are in pain and everything hurts, but you have to get up and take your medicine.” “Rebecca, you will feel better once you start moving”. “No you can’t call out, I don’t care if your body feels like it is on fire and a blow torch is being used on it burning your insides out, get UP.” And finally, “my dogs need me” – and that is the one that gets me moving every single day. God bless those pups.
So once I talk myself into getting up, I lean over haphazardly, ohhhh, ahhhh ouchhh my way out of bed and begin to take my medicine. I have a beautiful arrangement of about 7-12 pills to take pending on the day. On the absolute worst days of the week, I take 9 chemo pills (5 in the morning, 4 at night). On these days, expect absolutely nothing from me. I will see you in 24 hours. For those of you who don’t know, methotrexate is a chemotherapy and immunosuppressive drug that is used to treat autoimmune diseases. After asking myself if I took every single one (brain fog man), I indulge with 5 different vitamins *gummy of course, and continue on with my day.
My boss is an absolute GEM and has been letting me work remotely through the pandemic. Truth be told, I am not even sure if I can handle being onsite anymore. My days consist of remote meetings (from my bed) because sitting up in a desk chair, and sometimes even just being on my couch is too painful. Insert ice packs, heating pads, medication throughout the day, diclofenac gel to help with the inflammation and pain from typing too much, putting on a brave face during meetings and wincing through it all, and when I can find time to take a lunch break, I take a nap. The fatigue is ALL too real and even working remote is absolutely exhausting.
I am very fortunate to have a helper during the week. My little brother’s girlfriend comes over a few times each week to help me get things done around the house. Imagine, working REMOTE and being 30 year’s old, and not being able to maintain a household by yourself. But lifting the laundry out of the dryer has become too challenging, and there are days I can’t even brush my hair, let alone put on makeup.
After 8-10 long hours of pretending I am not in pain, or that all is well in the world, I log off for the day, and once again – NAP. No, I am not kidding. Most days I need 2 successful naps to be functioning. After napping again, I wake up, force myself to go for a walk, and then lay in bed for the rest of the night and watch tv only to start the same day again tomorrow. It is like ground hogs day every single day. There is no way out because I am too tired to add anything else to my day. And if I do, then I need to plan every small detail in advance because surely I won’t be able to move for days to come. During the work week, I am absolutely useless. I don’t go out for social events, and I certainly don’t have a life.
Now I know to some this may sound amazing, working from home in bed, watching Netflix all night and laying with your pups. And trust me, some days I feel similarly. What’s better than a relaxing day and snuggle sesh? But I yearn for the days of being able to go out for dinner with friends without knowing I will pay for it tomorrow. I miss not having to nap two times a day, or drink a monster, and a coffee, and take an adderoll for chronic fatigue. I would love to go out on a week night, and not be curled up in bed with sausage swollen like figures rewatching tv shows aimlessly and wondering if my life will ever be my own again?
I pose this question, if you knew it was the last day you were ever going to feel “normal”, what would you do? When I post on social media my doggies during “lunch”, or text my friends throughout the day, do they know how hard it is for me? Do they know everything it takes to make it through each and every day? Does anyone? This post goes out to my chronic warriors. I do. I know.
Chronically Fabulous 