Disability of any kind is a thief. It takes away being considered as valuable as other humans. It steals identities (my existence WAS being a nurse). It robs people of a sense of purpose and value. It is a constant reminder of what was. And, no matter how hard I try to figure out some way to still be that younger, healthier (though the health stuff started decades before my body finally pooped out), and active person, my body says ‘nope- can’t do it’. I’ve had to adjust to a new normal- and I haven’t been that good at it. I have days when just getting from morning to bedtime is a struggle emotionally and physically. I miss my old life.
I do realize that I’ve got a lot to be thankful for. My body is essentially intact (I’ve got all four limbs, and they operate moderately well). I can still think, though I do get a bit foggy at times. My sense of humor is intact. I have a decent home (apartment). I love my dog- crazy as she is ❤ I have my doll collection, gemstones, and books. I’ve got a great computer, and a lot of cable TV channels. But I’m not ‘whole’ when my body is broken down and examined.
I look relatively intact, which is great- but it also gives the impression that I’m ‘fine’. What people don’t see are the endless days of chronic pain from fibromyalgia, degenerative disc disease (most of spine), bone spurs on my spine, osteoarthritis, and chronic headaches. Methadone and Norco don’t give much relief. I had a neck injection today (steroids and numbing medicine); it lasted an hour. People don’t see the dysautonomia symptoms (though they might see my ice vest that I have to wear to avoid passing out in public when I get overheated- which happens in any environment over 55-60 degrees). Indoors with the heat on is horrible- I can’t go to appointments or to anybody’s house without being packed in ice. Nobody sees the nocturnal temporal lobe epilepsy, or the chewed up cheeks and funky ‘hit by a truck’ feeling I get when I wake up after them.
Nobody sees the struggle to just get basic chores done. Going to the grocery store is agonizing, and I’m slow, so I go in the middle of the night. It’s cooler (still wear the ice vest), and fewer nasty people are there to sigh loudly, in what sounds like disgust, as they try to get around me. I stay over to the side as much as I can- but at night, I don’t have to deal with them. Getting things in from the car to the kitchen is very painful. I’m done for the day after that. I get paper goods and cleaning supplies mailed from Walmart.
People don’t see that getting dressed is a careful dance of getting the clothes on and not losing my balance. I don’t ‘bend’ well. Socks are a major problem. Now, with this crazy thing going on with one of my neck discs, using my left arm is getting harder. And I can’t use it for moving or carrying things as well.
My apartment needs to be thoroughly cleaned, but it hurts way too much for me to get after it with any sort of real productivity. I can get a small area done here and there, but not what I ‘approve of’, and not like I used to get done. My kitchen floor is disgusting by the baseboards. I’ve decided I will do six inches of it at a time with a Mr. Clean Eraser. I have things I’d like to get donated to charity, but I can’t move the boxes. I need help, and am hoping that the people from a church who agreed to help will pan out. I’m hoping. A lot.
Looking at me, I look ‘abled’. If I move, it doesn’t take long for someone to see that I’m definitely limited, and some things are just not possible anymore. It bothers me every day. I want to be more useful. I want to be of value somewhere. I want to be missed if I don’t show up. I want to have something someone else can benefit from (nursing skills). I want my old life. It wasn’t perfect, but I was functioning at a level that kept me employed. Knowing that the last place I worked at found me more of a liability than an asset hurts (they had to call an ambulance at least 10 times in about 2 months at the end). They had nothing I could do within my limitations. Being unconscious isn’t good for a resume’. I had a good reputation as a nurse when I was in Texas. When I moved back here, the dysautonomia and seizures got too bad. I wasn’t worth anything as a nurse. But I’ll always identify myself as being a nurse. I keep my license current. I got that license 27 years ago. It’s still mine.
And yet, I try to look at what I have. I’m not homeless (which I probably would be if I had to rely on Social Security alone). I pay around $500/month (MONTH) in Medicare premiums and co-pays- but that’s better than nothing. (Medicare is not free by a long shot). But, I don’t have much leftover for much ‘fun’ stuff. This month, I got some good bread- and I’m so happy to have it. I’d love to get more fresh produce on a regular basis, but it’s not possible. But I get by. I’m not eligible for the $133.00/MONTH that food stamp recipients get… how are people supposed to eat ‘lean’ foods on that? Healthy stuff is expensive. I’m trying to get blood sugars straightened out after what chemo for leukemia did… So I do the best I can.
I miss what was. I have days when accepting this ‘new’ normal is really hard, and I don’t do it well. But, it’s what I have to accept- and I’ve got to figure out how to be of value in some other way. I believe that God has a plan for all of this- I won’t pretend I ‘get it’ yet. But I do have faith that for some reason, my life is what it is- and that I can be used to help others. Or it would be in vain. I won’t go there. I’ve survived too much to just be some joke. I want to be able to help people who have been through or have similar stories. I want what I write about the rape I survived to be of some value to someone else who has been too scared to talk about what happened to her.
I have to really accept that I can’t do what I used to do, and just figure out ways to do what I can to continue living independently, and with relative quality of life. I’ve got the dog- she helps a lot. And I do have people who care about me. I really don’t have social contacts- though I’m rarely ‘ok’ enough to meet someone somewhere. I do have much more to be thankful for than the ‘disasters’ that have come to be no big news when they occur. I watch the news, and realize that I’m fortunate. While it’s not a competition, my life is worth living, even though I’m not ‘intact’…my challenges are still valid reasons for frustration- but in the long run, I could be doing a lot worse. Some days I remember that more than others. ❤