Surrounded by Ostriches
I am disabled, and I need help. I need someone to drive me to the doctor and help me keep track of medical instructions. I need someone to help with shopping, cooking and housework. I need someone who can help my kids with remote learning. I need someone who will keep track of paying my bills and ensuring my finances are in check. I need someone to do fun things with my partner and make sure his needs are met physically. I need these things not because I am lazy, privileged, apathetic, burnt out, overwhelmed, depressed, etc. I need these things because I AM SICK and physically can't do them without collapsing.
I can keep myself in a good headspace most days. Some days I falter, though, and I become a ball of overwhelming resentment and anger. All the people who surrounded me when I was able to function have disappeared. Family, friends, coworkers - everyone just vanished. I think they're just "waiting it out" as though I'm going to get well again miraculously and they'll be able to rejoin my life and pick up where they left off without having to acknowledge the ickiness of me being unwell.
The public seems to think that there are these great doctors, laws, and social systems in place to help people like me. Here's a big newsflash: there aren't. There are illusions of such things - and if you have help from a disability attorney, social worker, or other tenacious advocate you may be lucky enough to jump through all the necessary hoops to qualify - but a wonderful world of easy access to decent medical care, transportation, financial assistance, empathy, etc. does not exist for the disabled in the U.S.
So, I'm having a pity party moment. The list of things I need help with in my first paragraph gets longer every day, and help is not coming. My son is failing reading. Some nights we eat cereal for dinner. The house is messy. Our cupboards contain nothing but snack foods and things you can easily heat up. I am internally SCREAMING because these are all things that need attention, but my body literally does not have the energy to handle basic tasks...and the kids and my partner can only do so much.
I'm not angry about being disabled - it's no one's fault. It's not the result of some terrible accident or medical malpractice. It's not something I brought on myself with an unhealthy diet or lack of exercise. I have no one and nothing to blame for this. I was functioning at a million miles a minute, got sick, and that was that.
I just wish society, friends and family would acknowledge that I am the same person I was before and I still deserve to EXIST despite the fact that I am no longer as productive as I once was. Instead, I live in a bubble neatly hidden away from the sensitive eyes of the rest of the world who don't want to be faced with the fact that they, too, can get sick without warning. I am surrounded by ostriches.
#cfsmeawareness #MyalgicEncephalomyelitis #CFIDS