Give Me a Break, Give Me a Break....

When you are chronically ill, you do not get days off. You might be thinking that every day is a day off for me. You couldn't be more wrong. Not only do I have to do so many exhausting things just to manage my illness and keep breathing, I'm also my own full-time secretary. I am constantly on the phone or video chats with doctors and their offices. I am always filling out some form or sending in paperwork to social services offices. It seems I have a case worker visit about once a week. The phone is always ringing, and the mail never stops.

My husband takes care of me — he helps with dressing, bathing, grooming, cooking, cleaning, you name it. He gets paid for it — not enough — but it's still better than our options were in the past. I get a tiny amount from Social Security each month. I have no idea how people live on that amount, but good for them for figuring it out. I am just super happy we get our rent covered by Section 8. Even with all of this help, I'm still working constantly just to survive.

Yesterday was my husband and my anniversary. We used to take off work to spend the whole day together, but we haven't had that option the last few years. I am always working on battling my illness and managing appointments while he takes care of me and the home.

This doesn't just ruin anniversaries. We do not get breaks — ever. No weekends. No holidays. No birthdays. Nothing. There is no clocking out when you are chronically ill. You are on the clock full-time, and it is the same for family caregivers.

Obviously, this becomes depressing very quickly, as we are people who love to enjoy time together. Then I get too sleepy, and I am back in bed by 10 a.m. Then the depression kicks in, some hopelessness, and then I tear myself out of bed an hour later to make some necessary calls and eat some good food. We always get good food on special days. That is our one piece of celebration that, thankfully, doesn't fail. Except for when my tastebuds are off, so instead of one really good meal for the day, we need to make sure to have multiple set up so I can enjoy at least one. Yesterday, I enjoyed breakfast and lunch, but unfortunately not the Coke slushy I got or the sushi that evening.

I love writing because it is a great escape (not the band) for me. It lets me get all of my feelings out and educates people on different battles at the same time. Reading seems to slow my brain down a lot too. Even if sometimes I can only read crazy large print on a screen or an audiobook, it takes me to another life with different jobs where people actually get time off.

I desperately want to get away — to travel anywhere. Anywhere I go I'll still have to be on the clock, but at least the scenery would change. Maybe someday I can handle an RV trip for a few days or so. Maybe someday.

I have to go call some people now...