I think it's important to blog about this in so many ways. I was always a workaholic. I was a straight A student and had a 4.0 in college. Anything I ever had to do, I'd give it a hundred and ten percent. Not being able to work is horrible. I would love to find something I can do for money, but I'm simply not well enough.
The smallest things are just too hard for me. I can't even sell stuff on Ebay because I don't know when I'd be well enough to pack it up and get it mailed. I'm just not reliable. And I really can't deal with people returning stuff and all that. I tried with Avon in my apt building and it was a disaster. I wasn't well enough to deliver it. I had to have someone help me, and she ultimately tried to steal stuff. Then I had people that kept returning stuff and I had to pay shipping and take it back to the post office myself. I had to quit it.
I'm not well enough for anything on Craig's List. Just looking at the thing depresses me. There are tons of things I could do if I were well, but in the state of my current health, nothing. I almost get suicidal looking at that list because I always see things I would love to do and can't.
Alot of it really boils down to not being reliable. I never know day to day or sometimes hour to hour how I will feel. And I'm often so much worse than even I think I am. I'll think I can do something and I try and can't do it. There have been times where I almost fell asleep in the laundry room just trying to get my clothes washed. And I have to rest up after any little thing I do. Just getting dressed, I actually have to rest in between putting on half the clothing.
Volunteering was a horrible disaster for me. I couldn't even last two hours every other day. And that was just doing minor secretarial stuff. I would almost collapse at the keyboard, the voices on the phone with my sound sensitivity were so painful, I'd get mean on the phone. And ultimately, after three weeks, I collapsed on my front lawn and hairline fractured my leg in two places. I simply was not well enough to do even that small amount of volunteer work.
Writing for a living does not appeal to me on many levels. My mother forced me to write her autobiography for four years of my life. It literally ruined four years for me, and I think made my health worse in certain ways. And then we couldn't get it published anyway. If you don't self publish with your own money, which we ran out of, it really doesn't go anywhere at all. The whole experience turned me off writing. I also do not want to write because my cognitive problems are so bad that I'm always using the wrong word and misspelling and having to fix stuff. It's just not good for me. Plus the short term memory loss.
Crafts take too much physical energy for me right now. It's a bad idea.
Alot of people ask me why I don't code for a living since I can code for The Sims community. I only know one code language, Simantics. It's not marketable. The game company has abandoned it and I can't sell files I make from it because they own the copyright to the code. My idiot relatives kept pushing me to learn another code language. I can't. The cognitive problems have made it impossible. I can't retain anything I try to learn and don't have the concentration anymore. It takes years to learn a code language and be good at it. And if you have cognitive problems, forget it.
Also, I don't have the ambition to learn a new code language because even if I managed it, I'm not well enough to do anything with it. People don't understand that anything I ever made, I did it in my own time, no pressure, and usually as a way of escaping the pain and other symptoms of this disease. You can't do things in your own time and with no pressure when you work for someone, even if you work freelance, you have a deadline. And if I was well enough for anything, I wouldn't work on the pc, I'd be out with people because the isolation of this disease is seriously killing me.
Thought of taking up a language again, like French or something alot more obscure. The cognitive problems really won't let me and it's a waste IMO. I'm too sick to go anywhere that would require a translator and most people just use online translation software today or they hire someone who can actually travel.
I went to OVR a few years ago, Office of Vocational Rehab. The head of the place and my caseworker told me that there is NOTHING anyone with CFIDS/ME/Fibro who has it severe can do. They told me they have tried many times over the years to get us back to work and they can't. They said the people can't even do the training, they flare up and can't do it. OVR said they wasted thousands of dollars trying to get us back to work at anything possible and that they don't even want to bother with us anymore. They actually closed my case and sent me a letter that I'm not employable. We even talked about doing customer service from home, but the problem is, the companies expect you to act like a healthy person and be able to work a certain number of hours or days. I can't do that. I'm not okay on any kind of consistent basis. These companies cater to people who only have certain kinds of disabilities, like if you're healthy but in a wheelchair, or missing a limb, or some other kind of handicap. They do not cater to people who are sick with a disease. Add my sound sensitivity on top and forget it. I cannot take a voice at my ear on the phone. I rarely ever talk on the phone anymore because of it. I don't even let my phone ring, I keep it off the hook and only return important calls. Even a chat customer service is way out. I rarely ever chat online because I get really sick. The concentration and the physical typing, I can't do it for hours.
None of this is excuses, it's just the reality of the disease. I'm not well enough to work. I would love to. I had wanted to go back to school for being a Home Health Aide. I can't do it. The POTS/NMH is so severe that I can't do anything with my life. I'm always too weak, lightheaded, have the dizziness, the tachycardia. Just a million things. It's just not going to happen. That's the really sad thing, the one thing that does appeal to me, that I would really like to do, I can't do it.
I wanted to blog about this because of the desire to work. I very much want to work. It kills me that I can't. And it's so important to get that out to people, especially because they keep watching those horrible Cymbalta commercials where they keep trying to make them sound like us and they'll say how you never want to do anything in life when you are depressed. There is a huge difference between clinical depression and CFIDS/ME. We want to work. We're dying to do things in life. We can't, we're too sick. We aren't clinically depressed or lazy, we just physically and cognitively cannot work.
My relatives kept acting like I could ignore the symptoms of the disease and hide it from an employer. You can't. It's impossible. When I have to lay down, I have to lay down, the same with having to sit. And usually I have to lay down after I sit because I get too lightheaded even doing that. I don't have stamina. I cannot hide not having stamina. I cannot keep up with healthy people. I can't hide a flare where I'm in so much pain that I cannot move at all. I have sound and light sensitivity. I can't hide that. I can't take noise and I can't take alot of light. Try that in a busy office. It's kind of like what people get with a severe migraine or hangover, but without the headache.
I'm also leaving out the audio processing disorder. I cannot take orders because most of the time, I can't understand anything anyone says to me. Everyone sounds like they are speaking in a foreign language. It takes awhile for my brain to process what was said. This leads to me getting easily confused. Although, I seem to get confused by most things anyway.
Basically, the list of why I can't work and what I can't do in life is huge. But the main point is, I want to and I can't. Which also goes for attending religious services. I'd love to, can't do it. Can't join anything, can't take classes. Really can't do anything with this disease. But I would very much like to and it kills me.
I had an idiot uncle tell me all I needed was a sympathetic employer. Really? There's no such animal when it comes to this disease. Let's see how it would go:
You might get me one day of the week, but then I'll be too sick to come in the rest of the week, in fact, I might be too sick for the next three weeks after that. Or, you might get real lucky and get me for three days, but those three days might put me down for a month maybe more, would that be okay?
Can I lay down on your office floor? I might have to suddenly lay down, and guess what, I won't be able to get back up again for possibly twelve hours. Is that okay with you?
Can't understand a word you just said, do you think you could give me every work order on paper? But guess what, I'll forget anything you wrote down anyway.
The light in the office hurts my eyes, do you think anyone would mind if we turned off all the lights and worked in the dark?
Yeah, an employer would love all that, wouldn't they?
The smallest things are just too hard for me. I can't even sell stuff on Ebay because I don't know when I'd be well enough to pack it up and get it mailed. I'm just not reliable. And I really can't deal with people returning stuff and all that. I tried with Avon in my apt building and it was a disaster. I wasn't well enough to deliver it. I had to have someone help me, and she ultimately tried to steal stuff. Then I had people that kept returning stuff and I had to pay shipping and take it back to the post office myself. I had to quit it.
I'm not well enough for anything on Craig's List. Just looking at the thing depresses me. There are tons of things I could do if I were well, but in the state of my current health, nothing. I almost get suicidal looking at that list because I always see things I would love to do and can't.
Alot of it really boils down to not being reliable. I never know day to day or sometimes hour to hour how I will feel. And I'm often so much worse than even I think I am. I'll think I can do something and I try and can't do it. There have been times where I almost fell asleep in the laundry room just trying to get my clothes washed. And I have to rest up after any little thing I do. Just getting dressed, I actually have to rest in between putting on half the clothing.
Volunteering was a horrible disaster for me. I couldn't even last two hours every other day. And that was just doing minor secretarial stuff. I would almost collapse at the keyboard, the voices on the phone with my sound sensitivity were so painful, I'd get mean on the phone. And ultimately, after three weeks, I collapsed on my front lawn and hairline fractured my leg in two places. I simply was not well enough to do even that small amount of volunteer work.
Writing for a living does not appeal to me on many levels. My mother forced me to write her autobiography for four years of my life. It literally ruined four years for me, and I think made my health worse in certain ways. And then we couldn't get it published anyway. If you don't self publish with your own money, which we ran out of, it really doesn't go anywhere at all. The whole experience turned me off writing. I also do not want to write because my cognitive problems are so bad that I'm always using the wrong word and misspelling and having to fix stuff. It's just not good for me. Plus the short term memory loss.
Crafts take too much physical energy for me right now. It's a bad idea.
Alot of people ask me why I don't code for a living since I can code for The Sims community. I only know one code language, Simantics. It's not marketable. The game company has abandoned it and I can't sell files I make from it because they own the copyright to the code. My idiot relatives kept pushing me to learn another code language. I can't. The cognitive problems have made it impossible. I can't retain anything I try to learn and don't have the concentration anymore. It takes years to learn a code language and be good at it. And if you have cognitive problems, forget it.
Also, I don't have the ambition to learn a new code language because even if I managed it, I'm not well enough to do anything with it. People don't understand that anything I ever made, I did it in my own time, no pressure, and usually as a way of escaping the pain and other symptoms of this disease. You can't do things in your own time and with no pressure when you work for someone, even if you work freelance, you have a deadline. And if I was well enough for anything, I wouldn't work on the pc, I'd be out with people because the isolation of this disease is seriously killing me.
Thought of taking up a language again, like French or something alot more obscure. The cognitive problems really won't let me and it's a waste IMO. I'm too sick to go anywhere that would require a translator and most people just use online translation software today or they hire someone who can actually travel.
I went to OVR a few years ago, Office of Vocational Rehab. The head of the place and my caseworker told me that there is NOTHING anyone with CFIDS/ME/Fibro who has it severe can do. They told me they have tried many times over the years to get us back to work and they can't. They said the people can't even do the training, they flare up and can't do it. OVR said they wasted thousands of dollars trying to get us back to work at anything possible and that they don't even want to bother with us anymore. They actually closed my case and sent me a letter that I'm not employable. We even talked about doing customer service from home, but the problem is, the companies expect you to act like a healthy person and be able to work a certain number of hours or days. I can't do that. I'm not okay on any kind of consistent basis. These companies cater to people who only have certain kinds of disabilities, like if you're healthy but in a wheelchair, or missing a limb, or some other kind of handicap. They do not cater to people who are sick with a disease. Add my sound sensitivity on top and forget it. I cannot take a voice at my ear on the phone. I rarely ever talk on the phone anymore because of it. I don't even let my phone ring, I keep it off the hook and only return important calls. Even a chat customer service is way out. I rarely ever chat online because I get really sick. The concentration and the physical typing, I can't do it for hours.
None of this is excuses, it's just the reality of the disease. I'm not well enough to work. I would love to. I had wanted to go back to school for being a Home Health Aide. I can't do it. The POTS/NMH is so severe that I can't do anything with my life. I'm always too weak, lightheaded, have the dizziness, the tachycardia. Just a million things. It's just not going to happen. That's the really sad thing, the one thing that does appeal to me, that I would really like to do, I can't do it.
I wanted to blog about this because of the desire to work. I very much want to work. It kills me that I can't. And it's so important to get that out to people, especially because they keep watching those horrible Cymbalta commercials where they keep trying to make them sound like us and they'll say how you never want to do anything in life when you are depressed. There is a huge difference between clinical depression and CFIDS/ME. We want to work. We're dying to do things in life. We can't, we're too sick. We aren't clinically depressed or lazy, we just physically and cognitively cannot work.
My relatives kept acting like I could ignore the symptoms of the disease and hide it from an employer. You can't. It's impossible. When I have to lay down, I have to lay down, the same with having to sit. And usually I have to lay down after I sit because I get too lightheaded even doing that. I don't have stamina. I cannot hide not having stamina. I cannot keep up with healthy people. I can't hide a flare where I'm in so much pain that I cannot move at all. I have sound and light sensitivity. I can't hide that. I can't take noise and I can't take alot of light. Try that in a busy office. It's kind of like what people get with a severe migraine or hangover, but without the headache.
I'm also leaving out the audio processing disorder. I cannot take orders because most of the time, I can't understand anything anyone says to me. Everyone sounds like they are speaking in a foreign language. It takes awhile for my brain to process what was said. This leads to me getting easily confused. Although, I seem to get confused by most things anyway.
Basically, the list of why I can't work and what I can't do in life is huge. But the main point is, I want to and I can't. Which also goes for attending religious services. I'd love to, can't do it. Can't join anything, can't take classes. Really can't do anything with this disease. But I would very much like to and it kills me.
I had an idiot uncle tell me all I needed was a sympathetic employer. Really? There's no such animal when it comes to this disease. Let's see how it would go:
You might get me one day of the week, but then I'll be too sick to come in the rest of the week, in fact, I might be too sick for the next three weeks after that. Or, you might get real lucky and get me for three days, but those three days might put me down for a month maybe more, would that be okay?
Can I lay down on your office floor? I might have to suddenly lay down, and guess what, I won't be able to get back up again for possibly twelve hours. Is that okay with you?
Can't understand a word you just said, do you think you could give me every work order on paper? But guess what, I'll forget anything you wrote down anyway.
The light in the office hurts my eyes, do you think anyone would mind if we turned off all the lights and worked in the dark?
Yeah, an employer would love all that, wouldn't they?
