Please stop looking at me like I'm a loser when I tell you I'm not working. I would actually love to have a job right now but I'd need one that was about 10 hours a week and those jobs are hard to come by. Most "part time" jobs are 35 hours a week, which means they are really full time but don't want to pay you insurance. So if someone wants to give me a job for a few hours a week I'm all ears.
That is just one example of what it is like live with a body like mine and I can cite countless other examples. Perhaps if I only had me to take care of I could work. I could survive working a few hours a week if I could come home and crash at the end, but I can't. I have two kids that need a lot of maintenance, maintenance that I have to survive whether I can use my hands or not.
If it weren't for me cleaning and organizing my kids and husband would probably be living in two feet of trash and you would see our house on Hoarders.
If it weren't for me my kids would eat chicken nuggets and candy for every meal instead of healthy made from scratch meals.
If it weren't for me my kids wouldn't have a loving, involved parents (not that my husband isn't involved, he just works a lot).
If it weren't for me no one would buy my kids Christmas and Birthday presents.
If it weren't for me the bills wouldn't get paid.
If it weren't for me my sick kids would not be taken to the doctor.
If it weren't for me my kids wouldn't be getting any homework done.
If it weren't for me my kids wouldn't have experiences like going to museums and other educational activities.
If it weren't for me no one would make Halloween costumes, purchase Christmas gifts for teachers, buy birthday party gifts for friends, fill out paperwork for field trips etc.
If it weren't for me there would be no groceries in the house.
If it weren't for me my kids wouldn't get to have their friends over and enjoy being kids.
So sure I could get a job, but nothing else that normal humans do to survive would get done. I would have to go to work come home and crash until I went to work the next day, which wouldn't make me a very good parent. I really really wish I could have a job, but the unpredictability of my health really won't allow it at the moment. So please don't tell me you wish you could lie around the house all day long because A) I don't and B) When I do it sucks. Believe me, staying home because you are too weak to move is not a fun thing. It is incredibly hard and depressing to watch people move on with their lives while you are stuck just trying to survive. So please stop asking me why I don't have a job.
You actually have people ASK you that, or comment on it? How incredibly freaking rude!! But that's "normal" people for ya. They can be the rudest, most inconsiderate folk at times. But oh, wait, so can some Spoonies… so I guess that means that it's just *people*, eh? Some are jerks, some aren't? In any event, I'm sorry you have had to deal with such impoliteness.
ReplyDeleteOn another note, that list you have there is a great "Reasons To Keep Living" list if you are ever despairing enough to be considering suicide. (Just reading all the things you do makes me tired!)
When people ask what I do or where on work, I tell them I'm a "Self-Care Coordinator." Sometimes I joke that I'm a "Disability Paperwork Specialist" and/or Hermit. On Facebook I describe my job duties as follows:
ReplyDelete"Schedule and prepare for 4+ medical appointments per month, maintain benefits and other assorted paperwork, compile and record daily symptom data in spreadsheet, follow current disease research, facilitate 12+ hours/day of sleep and rest breaks, supervise in-home care workers, manage and administer 17-30 different medications, integrate physical therapy, yoga, and meditation into managed daily activity."
Being sick and disabled is hard work. It's a lot of work. And we don't get to call in sick. We *have* to work when we're sick every freeking day. ;-)
That's great! It really is a full time job managing your own medical care. I don't think people realize how much time it takes. It's so much work being sick.
DeleteI love this post! I do all of those things too (which I don't even really realize) and I'm pretty sure that if it weren't for me, the trash cans would look like a jenga game, my boys wouldn't have bedtime stories and my kids would probably never brush their teeth. I want to save this for those days when I forget my contributions. LOL!
ReplyDeleteWhen I'm feeling really guilty about not working, I actually remind myself that if I ever die my kids quality of life will go way down! I don't know if my husband could really handle the two of them!
DeleteI love this post! I do all of those things too (which I don't even really realize) and I'm pretty sure that if it weren't for me, the trash cans would look like a jenga game, my boys wouldn't have bedtime stories and my kids would probably never brush their teeth. I want to save this for those days when I forget my contributions. LOL!
ReplyDelete