A day in the life…
During the week my day starts around 7:15 am, getting the kiddies going out the door by 7:45 am. Then I take 100 units of humilin insulin, and sit and watch tv or play on the iPod. DH is sleeping.
I nod off for a short nap until 11 am. Then DH gets me breakfast and medicine (another 100 units of humilin, 60 of humilog, metformin, B12 and calcium pills).
If it’s Tuesday I’m off to the shower. I can still manage myself until I’m out. Grab the oxygen, then start to get ready. DH combs my hair, shaves my legs, and helps me get my clothes on.
After shopping we get home and I am ripped! DH gets me a drink and I sit, staying in my recliner for all but the occasional potty break.
DD comes home from school and we go over her day, homework, etc.
Another 100 units of humilin after dinner and another B12.
DS comes home after band practice. We catch up for about 5 mins then he has dinner and heads to his room to do homework and/or game development.
DH and I watch a little tv, sometimes together. Around 10:00 pm he usually makes some popcorn. He goes to bed between midnight and 1 am. I am usually up until 3 am or later.
Before bed I take 100 units of humilin, 80 units humilog, B12, calcium, metformin, and 2000 units Vit D.
During the course of the day, DH will have gotten me numerous drinks in between doing laundry, making dinner, etc.
My entire day is spent tethered to an oxygen machine of some kind. Even with that my walking distance is very limited.
I can’t do my hair or shave my legs (or pretty soon brush my teeth!) due to the pain in both hands from osteoarthritis. It is worsening quickly. I have to be very careful with NSAIDs bc I have congestive heart failure.
I spend most days battling fatigue, swelling, and pain. When the ascites is bad I look 9 months pregnant and feel it!
My kids and husband do everything they can to make me feel included, but often if it involves leaving the house I miss it.
The couponing makes me feel useful. When we get a bunch of stuff we need for free I feel good about it. Despite the fact that I can’t actually cut out the coupons, DD does 😉 But I do figure out the deals and such – stores don’t just hand stuff over LOL
My children I believe have learned empathy, and how to refill water on an oxygen machine!! Back when DH was working, DS sacrificed sleep to come out and unhook my infusions when I was recovering from sepsis. He knows how to do a hep wash now!
This is my life and I don’t see it changing soon.
PS. Did I mention I Twitter, a lot?!