I used to travel for one job while working two jobs. People used to ask me why I didn't work one full time job and my response was always "I like the variety". I planned my wedding, a baby shower, worked two jobs and took classes at night, all at the same time, while still jogging to the gym for my hour long workout 4 days a week. After I had done my pilates that morning. It's true, just ask my husband. I used to tell people I couldn't drink coffee because I already had enough energy for three people.
I backpacked alone around Europe two times and with friends another time. I took off solo once and just drove around the western US by myself for a month. When I met my husband we used to say our motto was we "live life like we're on vacation" and he would get made fun of at work because we were gone every single weekend. I visited friends and relatives, I even volunteered. My brain was constantly moving a mile a minute and I didn't need more than 7-8 hrs of sleep to recharge. I drank wine and went dancing. I played tennis after working a full day and was always up for anything.
Now granted some of that has changed just because kids, but most of it is because of this illness.
When I was first pregnant I still worked out almost daily, until the morning sickness got so bad I wasn't eating enough calories per day to allow me to burn any extra off. I worked until I literally couldn't stand up anymore and then I was ordered to the couch for partial bed rest by my OB and here I am almost 8 years later. Yep. Life can change that quickly.
I've learned that the body and the mind truly are two separate things and they can work together or against each other. You can fight it and fight it and it's exhausting. My wise cousin once said "my body doesn't play for my team" and boy does that sum it all up. I have laid in bed truly feeling trapped inside this broken body more times than I can count. I have fought the urge to give in and give up because I'm not "me" anymore. And that is such a heartbreaking thing to feel.
I had visions of being an active working mother. I wanted to work part time while my kids were at school, but remaining working was never a question. And we had orchestrated it just so. I was working a flexible part time job, we had bought a house, time to add babies. Yeah, make a plan to make God laugh right?
So, now that you know who Kim is inside this broke ass body, when I say I can't get out of bed it means I've tried and failed. I've stood up and crumbled or fallen over, or the 7 step walk to my bathroom has left me in pain or feeling too weak to stand up. I have never woken up and said "I want to stay in bed today". I wake up, take my meds, and go through my "to do" list like everyone else, then I assess how many spoons I have and begin removing things from the list or shuffling them around accordingly. Sometimes I get up and use up my spoons doing my to dos, having coffee with friends, running an errand, doing anything I can to lighten my husband's load, making dinner and putting the kids to bed though never all of that in one day. Sometimes I use all of my spoons making coffee. And by using all of them I mean either the pain or the weakness has gotten so severe that I cannot take a step without consciously telling my legs to move, hunching over or shuffling back to bed. Sometimes the cane comes out to support my weak legs. At that point I have to go back to bed and begin trying to crisis manage my day- essentials are to find help to get my kids home from school, do whatever activities are absolutely essential- homework or things for school, things I've promised other people.
The first thing I scrap are always things for fun or for myself (no coffee with a friend, no doing fun stuff for the house, no dinner with the neighborhood girls, etc etc), little things get scrapped during the day always (no showers, making what I wear easier to get on and off, hair in a clip, kids eating in bed with me what they can prepare, phone calls, emails and texts, making coffee, wearing no socks or slip on shoes, any sort of cleaning up, you get the picture), next I scrap time with my husband and go to bed when the kids do at 7pm. Last to go is always dinner and bedtime with my husband and kids from 530-7. This is my ultimate goal each day and is important to me. So, I feel like a good gauge of where I'm at is whether I've gotten to eat dinner with my family and put the kids to bed, because I've scrapped everything I can possibly scrap at that point, except things I've committed to other people. So, if I'm not making it out to the table for dinner you can be sure that absolutely nothing else is getting done. If I'm flaking on important commitments to other people (bringing something promised to school, taking other kids places, etc. Not just cancelling a coffee date) then we are in like Rambo survival mode. I've never, in the 8 years dealing with this, missed as many family outings and dinners and bedtimes as I have in the last 6 weeks.
Rambo survival mode is where we've been living since Nov 8 when I was hit by whatever this is that they can't figure out. We are coming out of survival mode slowly now so if you go backwards you can assess what is getting added back to my day in what order😁 I will fess up to a coffee date in the last week as I'm feeling better, just to keep my sanity and remind people I'm alive. But they have to be at the place right next to my son's school because they have comfortable chairs and is close, it must be right after I drop him off so I don't have to leave the house multiple times. There are always extra requirements to be my friend which is why my friends are doubly amazingly awesome.
So, hopefully that clarifies where we are at and what it means a little clearer than "I can't get out of bed" and we're "hanging in there!" Which basically means hanging by the skin of our teeth.
😁
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