The meaning behind “live like you’re dying” is usually to live each day to the fullest as if it will be your last day. But that’s not what I’m referring to.
This past month has been particularly rough for me. Losing my Dad at the beginning of November, set my body into a massive flare. If I’m being honest though, things haven’t been going that well for awhile now.
This is my life:
Mondays- longest, busiest day at work; when I finally get home, I put together a quick dinner for my kids and am asleep by 8.
Tuesdays- I wake up exhausted but power through my morning. Pain is bad but manageable. I try to go to the gym after work which sometimes goes well and other times, I barely make it 20 minutes. I usually have to hit the grocery store before heading home.
Wednesdays- Pain is pretty bad at work. I find myself promising myself that if I make it through the day, I’ll take off Friday to rest. I usually make dinner (or ask the kids to throw something together) and get in bed at 8, even 7:30 sometimes. Heavier pain meds are mandatory.
Thursdays- Always a ponytail day as my arm can’t support the blow dryer in the morning. I’m in pain immediately upon waking and usually start my day with a fever. Work is hard- cheeks are feverish and bright red for most of the day, the pain can cause me to fight back tears in my office. I have usually packed my gym bag the day before but there is no way I can go today. I make it home and take pain meds the minute I walk in the door.
Fridays- Everytime I arrive at work on Friday, I’m so proud of myself for making it this far. The fatigue is at its highest point, multiple energy drinks keep me from sleeping at my desk. I keep telling myself that I just have to make it one more hour and then I can leave early. I promise myself this until the day is done. I finally make it home, needing to go to the grocery store but I physically can’t. I take pain meds as soon as I’m home and hit the couch. There are a lot of tears involved- from pain and from sheer disappointment in what my life has become.
Saturdays- Target and the grocery store with my daughter. I am back on the couch by 1pm to sleep away the afternoon. I inject methotrexate around dinner time and am usually back asleep by 8.
Sundays- Recovering from methotrexate. Trying not to vomit and trying to stay awake- usually asleep until mid afternoon when I’ll make dinner, do my pills for the week, pack lunch for the next day. All to be back in bed around 8.
This isn’t living. This is dying. This is struggling to literally meet my own basic needs and those of my family. I love to cook. I love new recipes. But I can’t find the energy or enough pain free moments to cook much anymore. I miss knitting. I miss bowling. I miss the gym. I miss just having energy.
I am so tired of hurting. So tired of being tired. I am on my fourth biologic in just under 5 years of battling Rheumatoid Arthritis. I’m losing hope that there’s something better out there. That there’s something that can help me.