*If you don’t know what I mean by “spoonie” read this.**
I labeled this post #1 since I am quite certain that there will be many more in the future. The one currently affecting my life is this: Spoonies do not have the luxury of not planning things.
I know there are many people out there who like to plan. But, for spoonies, planning isn’t a luxury. It’s a necessity.
Mr. Lyndsy and I are planning to move back to the United States as he’s decided to take a friend up on a longstanding job offer. For some, it’s just a simple matter of picking a place to live and going from there.
Unfortunately, I need to know whether the job comes with insurance. Given how crappy healthcare is in the US, I have to make a somewhat concrete plan. I cannot afford to live with crappy or no insurance. ONE of the medications I take for diabetes costs $350 without insurance. (Where I am now it’s covered by insurance, but even if it weren’t, it’s about $9 per month.) Even with insurance, I have doctor visits every three months, at a minimum. I see a rheumatologist, nephrologist, endocrinologist. I see a psychiatrist either every month or every three months. At $45 each, the cost adds up quickly.
After the spinal fusion I took off work for about two weeks before going back. I believe I’ve mentioned before that I didn’t take off enough time. I worked for two weeks before asking for leave on short-term disability so I could get better. Rather than let me take off the time, they terminated me. Since then I have worked part-time, from home. Given how poorly I feel just doing household activities, I am decidedly unsure whether I can even work a full-time job, which would be a requirement if I have to have the job that comes with health insurance.
Of course, a job with health insurance isn’t enough if my medications aren’t covered or if my co-pays are high. I can’t not go to the doctor. I have serious chronic illnesses. So now, I’m looking at picking a job that not only offers health insurance, but also pays well enough to cover those things. I’ve heard that Starbucks offers insurance coverage to most of its employees, but I’m not sure a barista’s pay is enough to cover my health life.
Okay, great. But that’s not enough. This job I’ll need to have, what do they expect me to be able to do? What’s the sick time like? When can I use it? Is there a minimum amount of time I have to be there to be able to use it? I’ll have the same questions about vacation, in case I burn through my sick time. There are days where I just can’t get out of bed. Is there a probationary period that would be affected by my need for sick time?
These questions don’t go through the minds of people who are generally healthy. They think about vacations they want to take, not wondering if they’ll even get to take any time off for something fun.
I know there are people who look at spoonies like me and think, “It must be nice to be home all day.” To them I say, no, no it is not. Because we have to deal with the feelings of inadequacy that come with not being able to be out, working, earning an income. We feel awful – unable to justify taking money from others and our partners, who have gone to work to earn that money. We don’t feel like we can spend it for us, for fun things.
I was once a person who worked 26 days straight – including weekends, more than a regular 8-hour shift each day. I left for work at 5am and didn’t finish with either work or class until 9pm. I did that for months because I believed in what I was doing and it was necessary. Now I’m a person who has trouble waking up in the morning. Who can’t stand and do dishes for more than 5 or 7 minutes at a time. Whose back hurts while dealing with a single load of laundry. I have trouble remembering what I’m doing AS I’M DOING IT. I forget basic words (yes, the other day I said “machine that washes the dishes” because I couldn’t remember “dishwasher.” It happens to everyone, but it doesn’t happen to everyone all the time, every day). Sitting and working at a computer hurts my back and arms. Breaks don’t always help. Good luck being a lawyer full-time! That’s ALL they do.
I hate that my life has been reduced to trying to figure out how long each day I can work, what I can do if I am to work, and whether I can do it long enough during the year to not exhaust my sick and vacation time. But, this is my life now. The only thing left to do is live it. What people need to do, however, is step outside themselves for a minute to consider what someone else may be going through.