Thursday, July 21, 2016

7/20/16- A (work) day in the life of RA

So recently I got some blood results back; not a surprise the inflammation (CRP measurement) is up a little.  It's not a surprise to me (or probably to my husband and son) as I've had achy joints and stiffness in the morning.  This is what doctors like to call "flares" for autoimmune disease patients.

It means your immune system is at it again (at attacking joints, brain, stomach, whatever part of your body your immune systems thinks is a foreign body).   I just like to call it "this is annoying, I'm achy, and I'd like to take a nap now."  Aka, not fun.  Instead telling people I"m having an RA (rheumatoid arthritis) flare, I should just going around saying I'm having an RA NFT (not fun time).

So anyway, this current flare made me realize that I haven't recently talked about being a mom/wife/engineer with RA.  So I thought I'd capture a what a typical work day was like for me: a RA patient/mom/wife/engineer.

7:00  AM: I'm still in bed.  I can hear Jack and Bobby in the family room. Bobby's trying to wrestle Jack into clothes for school/daycare.  I know I should go help Bobby with Jack--  I want to help.  It'd also mean extra time with them before work and daycare. My finger joints ache, and I'm tired.  I want to fall back to sleep; just another hour of sleep would be good.

7:30 AM: Bobby brings Jack into our bedroom to say good bye.  I sit up to kiss them both.  Jack sits down on the bed, playing with the baby monitor, and I lay next to him, as Bobby packs up the car.

7:45 AM: The boys have left, and I can't fall back asleep, so I decide to move to the couch to watch TV.  Take the first pill (prescription) of the day.

8:00 AM: End up on Facebook for an hour while I eat breakfast and sip 2-3 cups of black tea.  Take 4 more pills (vitamins and supplements). Coffee is only used in emergencies (like I didn't sleep the night before).  Sometimes Bobby will bring me back Starbucks after dropping Jack off at daycare.  Yep, I'm spoiled on those days.

9:00 AM: Log in remotely to my work PC. Check email, decide who to email back right away (sometimes there's groans and eye rolls), then decide which tasks to tackle.

10:30 AM:  After completing a task (typing forever in Excel or Access), I decide it is time for a nap.  Then talk self out of nap as that means I'll finish work later. I can nap at the end of my work day and before picking Jack up from daycare. The idea of taking a nap and talking myself out of it won't be the only time I do that today.

12:00 PM: Time to eat lunch!  Eat a sandwich (they're my favorite lunch time food)! Take 1 more pill. Then look at dirty dishes, garbage, etc.  Decide I'll do it later because a short nap at lunch sounds better.

12:30 PM: Decide I should exercise (yoga video or stationary bike that we have at home) as this will renew my energy and help stretch out my joints.  Sometimes I do the exercise; sometimes I think about a nap and look at Facebook.

1:00 PM: Log back onto my work PC.  See if someone IM'd me or sent an email and feel guilty if they did. I feel guilty when this happens. I also feel guilty when I'm at the doctor's office in the middle of the work day. I'm not one of those people who doesn't do anything when they work from home, but I am still worried one missed IM or email is going to make people think I do NOTHING when I work from home.  I do not want to lose the privileged of working from home when it's so import to my health.

2:00 PM: Think about a nap again.  On days where I'm really fatigued I will just fall asleep while sitting at my laptop.  It probably doesn't help that I have the laptop set up on move-able tray and I sit on the couch, but comfort is so nice when achy and tired (or when you're fighting your 7th cold for the year because ,you know, horrible immune system).

3:00 PM: Think again about a nap.  But no, must push on and finish assignment.  I can nap in a half hour; that's when I'm officially off the clock. (Or I'm just waking up from my accidental nap, Hammerhead! now I need to work after Jack goes to bed.)

4:00 PM:  Shark, I'm done with work now, but it's too late in the day for a nap at least for me.  If I nap after a certain time of day, then I will have a hard time falling asleep or staying asleep at night. Decide to either drink green tea or watch TV/read a book/rest with eyes open.  End up playing Candy Crush for a half hour.

4:30 PM: I should shower and go get Jack, but then it might be just be the two of us for the next hour, and I'm too tired to chase after the toddler.  Feel immense guilt (more than I ever could about work and missed emails) over this decision.  When I'm not having a RA NFT, I do go early, and we have the best of time just the 2 of us.

5:00 PM: Bobby calls. He's leaving the office.  He'll be home in about a half hour.  I rush through a shower and go get Jack.

5:30 PM: At daycare.  Jack gives the biggest smile. Best time of day for me (and I do not feel the urge to nap)!

5:45 PM: Jack and I are home.  Struggle to get him out from his car seat. Look I get that car seats need to be safe and not come undone in a car accident, but surely we can make a car seat buckle that is safe and arthritis friendly?  Bobby is home, and he has started dinner.  Jack wants to be held by Bobby, so I finish dinner.

6:00 PM: We eat dinner.  Jack goes either really fast or really slow.  We've sat at the dinner table with him for at least a half hour in the past.  I'm okay if he sits there eating forever, as it means I get to sit longer.

6:30 PM: Jack is playing, Bobby is washing dishes, and I'm watching Jack, from the couch.  For the next hour and a half, we move all over the room (sometimes to the back yard), not sitting in the same spot for longer than 15 minutes.  I think about a nap, or just going to bed at 8 PM when Jack does.

7:45 PM: Bath time for Jack and then wrestling him in to PJs.  Bobby usually has to do the wrestling of Jack into clothes.

8:00 PM: Read Jack bedtime stories and kiss him goodnight.  Lately, bedtime has ended in tantrums; Jack is having too much fun with us to go to bed.  I had no idea Bobby and I were that cool.

8:15 PM: For the next two hours, Bobby and I talk about our day or cuddle and watch TV together. Usually it's the later right now, as I'm so tired.  I always think I will go to bed early when feeling sharky, but I don't.  Sometimes I log back into work during this time because I have to make up for a doctor's appointment or an actual nap or I really do a full time job in a 24 hour work week.

10:00 PM: Sleep, finally!  If I have any energy I wash my face and brush my teeth, but that is like 3 times a week where I feel energetic enough to hold a tooth brush. I usually just crawl into bed (good thing I worked from home and able to wear yoga pants all day, so I can just get into bed). Also take final 2 pills (1 prescription, 1 supplement) for the day.

I should note, that I do go to my actual work office about once a week; it's nice to say hi to my colleagues and let them know I haven't died or what not.

So that's my typical work day when I'm having issues with RA.  I'm lucky to have support of family and work from home when NFT is occurring, so thank you to my wonderful support system (special thanks to Bobby).

And thank you, reader, for reading about my day; all you've probably learned about RA is how much I want to nap every day! :) Take care and be well!

No comments:

Post a Comment