I Hate Not Working

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?



My heart goes out to you in your present mental space.

While I am not as ill as most members on this forum, I still have had intermittent glimpses of everything you have just said.

I also wrote a shorter version of your Blog in my diary several years ago (before I was diagnosed with FM).

And I DID lie under my desk on a yoga mat every lunchtime for some months before my lumbar disc surgery.

I always had the brightness of my work computer dimmed every day for the past 10+ years. There were days in my (old) office when I turned the lights off to rest my eyes.

I learned how to block out noise & voices in my office. I had my home phone disconnected 15 months ago because the sound & sometimes people talking were exhausting (amongst other things).

I remember trying to write a memo at work a couple of years ago & I couldn't remember how to write the letter "p". I thought I was going crazy. I tried "b", I wrote "q", I tried "d" - nothing seemed to be familiar. I left my desk & caught the lift down to the basement toilets. I sat on that toilet seat for ages trying to make sense of my problem. Eventually, I came back upstairs & sat down, a little calmer & tried again. I got it.

Even last Thursday at work, my Boss gave me a last minute task (which only I could do as it happens). I looked at my Boss rather vaguely. His words seemed to go in one ear, but somewhere along the way to my brain, they wandered aimlessly around in my head. I walked out of his office & sat down in my office to collate the information I needed to complete the task, & then stopped. What was I doing? What was this information for? I had to meekly go back to my Boss & say "sorry, I've forgotten what you asked me to do. Can you explain it again. Can you please speak slowly?"

How embarrassing. How humiliating. And on my second last day of work too.

It's easy to fall into your current mental space. I & probably many members join with you in this experience.

Sometimes life deals out this sh*t - we moan that life's not fair.

But Life doesn't discrimate. It deals out sh*t to young & old, male & female, single & married, poor & wealthy.

The thing to do is climb out of that dark space & look for what you CAN do. I know that seems insensitive to your present feelings, but it's not meant to be. You're probably thinking that I don't know what you're feeling at this current time. But I do, I've been there too. Sure, my black hole was a different shape & texture to your black hole. My black hole was a different depth too.

I would have to be one of the most creative, imaginitive, talented women around, but some days I think I have nothing. I thought I couldn't do anything OUTSIDE work, so what I did a week ago was quit work after 16+ years in my job.

There were days in the last few weeks when I was panic stricken at the thought of no income, I was terrified of starting out afresh at the age of 56. I knew I was burning my bridges behind me. At 56, with unreliable health, continuous pain & minimal computer skills & physical limitations, I knew there would be no Fairy Godmother to wave her magic wand & make me young & healthy again.

I was just plain scared of taking a chance.

So consider taking a chance. Take a chance at thinking what you CAN do, instead of what you can't. You have just typed a Blog on this forum. There's something you have done. You have collected your thoughts & put the words down on paper.

That's something to feel really good about. There are probably just as many members reading your Blog who can't put words onto paper (as there are members who are brilliant writers & skilled in putting their feelings into words).

There are probably 99 things that you & I together, can't do, but there is always something that we can do. It's just a matter of keeping faith in yourself, keeping hope in your vision & working your way mentally through the maze to the hidden door.

One day you'll wake up, having found the path through the maze & being confronted by the locked & bolted door. One day, you'll find the key in your hand & have the strength to draw the bolts free & unlock the door to your future.

There's always tomorrow & we can plan & anticipate what tomorrow will bring, but we can never truly KNOW what tomorrow will bring. Life is impermanent. Life is ever-changing. Maybe in your world today, you can't see any hope for change, but change will come, slowly perhaps, but I can assure you, it will come.
It's not about my mental state. It's about the truth of the here and now. And that the desire is there, but I'm not well enough to work. The point of the post was, it's not about depression, it's about being too physically ill to work and that is depressing.

I've had it for nineteen years, it's alittle hard to keep being a cheerleader when obviously, after nineteen years, it's not going away. My optimism is seriously draining away.

I have found no way out, and it's not for lack of trying or looking. Short of blowing it up, this jailcell is locked up tight.

I'm a caregiver responding, and want to thank you for very eloquently expressing the frustration I see in my husband every day.

He tries so hard to do things, and some days he can do something, and other days, no matter how much he wants to do 'something' he is just back in bed after breakfast and that's about it for the day. When you have always been a go-getter, and 100% at what you choose to do, it is the hardest lesson. I am so envious of those who have found a way to just somehow relax into it and accept that most days are bed-ridden and some days there is a little present and you can do something. It is a blessing for sure - compared to getting up and fighting every day to do what you cannot. I'm sure I'm simplifying here - even for those who seem more accepting, it must be very difficult.

I feel so helpless as the caregiver, 'cause I sure can't say what I'd be feeling if the tables were turned. And we are still trying to find the things he can do to while away the hours. His biggest heartbreak is the high anxiety that keeps him from even being able to read. He used to be quite happy reading books, now after a couple of pages he just can't focus. And by the time he picks it up again he has to read the same two pages again. Maybe I should start buying recorded books. hmmmm. responding to your post has just given me a good idea. I can download them in many cases and just need to figure out how to make it easy for him to choose one. He has a little ipod type thingy, but if I put more than one thing on it, it's too hard for him to figure out how to get the one he wants. Perhaps a CD player, so he can physically change them. hmmm.

Thank you again Carrigon, for letting us know he is not alone in the frustration. And you are a very good writer!

Pam and John
Pam, audio books are a good idea, I know alot of people with CFIDS/ME who have used them over the years. And there are plenty online you can download for free.

I actually have a degree in creative writing. I did a correspondence course many years ago and got it while sick. I was always prouder of it than my college degrees because I did it while sick. It's just now, I can't really use it and don't really want to. Writing is such an isolating profession and I'm already too isolated from this disease. Plus, I don't have the cognitive to deal with the research anymore. Researching locations, getting small things like the right kind of flowers and shrubs for an area, people don't realize that certain areas have certain trees and plants. Like you can't write about California and say the pine trees line up everywhere when they are palm trees. Writing takes alot of cognitive. And what I found was, most publishing companies are scams now. They want to charge you eight hundred dollars to "proofread and fix your manuscript". Even if it doesn't need that. And if you don't have the money and refuse, they won't deal with you. The agents are scammers, too. They charge a "reading" fee and then dump you because they are only making money off that fake reading fee. That's all they care about. So to really get your work published, you need the money to self publish. And if you don't have it, you are out of luck.

It is awful when you get that one day where you can do something, even something small like cooking dinner, and then you can't do it again. I go through that alot. It's horrible. I've even had that one odd day in a year where I feel better. And it's so cruel because it's like, this is what it would be like if you were almost well, but guess what, tomorrow you'll be too sick to move again.
Carrigon, that's very well written. I see a lot of myself in that post.

I know for myself not working caused 2 major hurdles. 1. Throwing myself into work or an activity was how I coped with a problem and that was taken away so I didn't know another way to cope. And 2. I was extremely embarrassed, ashamed and had guilt that I could no longer work. I could talk to people about my illness and being sick but I just couldn't discuss not being able to work. I HATED being considered lazy. I'd never been lazy a day in my life. But when you are young (as you and I are) and you don't work, I've found people assume that you must be lazy. And even if they didn't truly think that, I assumed they would.

I really isolated myself, not just because of this illness, but also because the first thing people often ask when they meet you is 'what do you do for a living?' - and that question always takes away a little piece of my soul. The DREADED question. You get that ever so slight puzzled/disapproving look. Then comes 'so do you have kids?' Uh, NO. Hmmm, so you don't work and you don't have kids but you are young and look healthy ---- ding ding ding ---- LAZY. ...and if you happen to run into some real dimwit who hates their job they will tell you how lucky you are that you get to stay home all day!

Being awarded disability helped me a bit. It was like a small victory, a vindication I suppose. And slowly I've be able to accept things more (some of the time), although I still do not want to meet new people. Someone said to me once that being chronically ill you will go through the 5 stages of grief (Denial, Anger, Bargaining, Depression, Acceptance). You are grieving for who you used to be, and you will swing back and forth between stages until hopefully one day coming to Acceptance. Until you come to Acceptance - I think the other stages can eat you alive.

I hope your family will also find acceptance and get off your back about working, that is anything but helpful.
Hi Carrigon

I hate not working too. 5 years after being medically retired it still hurts not to have the income, colleagues and sheer sense of purpose. Perhaps I'd worked too hard to get to where I was (with ME), perhaps my imagination is too limited to conceive of an alternative or perhaps I need to work on living 'mindfully' with where I'm at. Perhaps what I hate most is having to think in terms of, I'm 47 now, can my savings sustain us until I die? And I'm so bloody bored!

Its tempting to think that its just a matter of being positive - what can I do rather than what can't I do. But its not quite that simple.

You may be aware that in the UK the government has replaced Incapacity Benefit (for those unable to work) with Employment Support Allowance (ESA). The change in culture is that its not your diagnosis (or Doctor's opinion) that determines your ability to work but an 'independant' assessment of your functional capacity. You are encouraged to think what you can do - not what your illness prevents you from doing.

This all sounds well and good but the reality is somewhat different.

Thinking of myself, what can I do.

Well, after a generally sleepless night, I can get myself out of bed, have breakfast, get shaved and showered and after a bout or two of IBS I'm ready to face the world. Mornings are generally my best time of the day. On a good day I can spend a few hours doing a little light gardening or work around the house as long as I don't over-exert or try working with arms above shoulder height, or get into aerobic territory - all guaranteed to bring on a crash. Alternatively I can do at most one hour of mental 'work' - light admin, the tax return that sort of thing. But again any more and my mind just locks, and all the other symptoms come crashing down on me. Or the 30 minute round trip to the shops.

Coming closer to lunchtime I start feeling bad - not just fatigued but ill. Immediately after lunch I NEED to sleep for one to two hours (after the obligatory trip to the loo).

ON waking (another bout of IBS) I CAN do very little. I'm generally too tired to do much physically and anything requiring mental effort is out of the question until around 5 O'clock, but again limited to less than one hour. Then the evening meal, another few doses of IBS and struggling to stay awake long enough knowing that an early night means another sleepless one.

All of this accompanied by ongoing anxiety and guilt over not being productive.

On bad days I can't walk or think.

So that's me being positive about what I can do. Occasional, light gardener anyone?

Looking from the other perspective, what would any prospective employer want from me (apart from not having a 25 year medical history)?

Can you work for a full 8 hour day? - No

What about part time working? - Yes, but no more than 2 hours per day, some days, can't tell you in advance which days, won't be every day and may not be for weeks on end, and as long as it doesn't involve physical or mental exertion.

I see you have a masters degree in computing - what about IT? - My wife has to programme the video recorder.

Telesales? - One telephone conversation and they may as well be speaking Venusian - then I need to sleep.

Painter and decorator? - Fine as long as its very part time and doesn't involve paint.

The options are somewhat narrowing.

Actually I'd love some sort of self-employment If I could think of something that I could do on those days when I feel well enough to do a few hours work and could do it from home to avoid travelling and a toxic office environment. However customer service might be a little lacking!

And I'm still so bloody bored. Tired and wired!

Sorry I couldn't be more postive.


I hope your husband sees some improvement. He sounds like me for the year after I had to stop working. I couldn't read, walk or drive. While I still have anxiety, cognitive and all the other problems at least now I can read and drive for short distances. It may be just a matter of time. Perhaps he might try a zinc/magnesium/calcium supplement as a safe support for anxiety?
I understand completely. I feel that way myself. I have like 2 weeks out of a month where I am totally unreliable. I am lucky however in that I am quite creative and started my own business. I am a jewelry designer. So, I had a website built and it takes a lot of time for me but I am still ok enough to do it. There are times however where I can't. I work at home, so I stop when I need to. I work very part time. When I started it 5 years ago...almost six, I was much better. So, I have a clientele that always comes through. But I am always quite aware that this could change and does change throughout the month. I am a mess with my periods and can't function.
Another thing, we need money!! How are we going to get better without money! That is what comes to mind when not working also. It's an awful plight. Supplements, meds, electric, it all costs. The whole thing causes depression and feeling like a hamster on a wheel. A hamster that is going nowhere.
Kerrilyn, I hate all those questions, too.

What do you do for a living? I'm sick. Are you married? No, got sick before I could get married. Do you have children? No, I'm sterile from the disease. What do you do with your days? I spend alot of time trying to find something that will make me feel even a tiny bit better.

And then the crappy answers you get back. Oh, you are so lucky you don't have to work. I wish I could stay home all day. Or, how do you stay inside all the time, I'd go crazy. When I get answers like that, I just want to scream.

The stages of grief. I think I've accepted it more than most, I'm just angry. I hate the disease, I hate what it's done to my life. I hate how we get treated because of this disease. And I can't stand it when people don't understand that we have a right to be angry that it has taken away our whole lives. I even had one idiot doc tell me "you seem to have alot of anger toward this disease", no kidding. What am I supposed to be happy I have no life from it?

Me without things to do is not a good idea. I am bored. My nature isn't to just sit and do nothing. I want to join stuff, I want to be out with people. I'm just not well enough.

I have an interesting book story. I spent half my life, more I think, trying to find a book I had loved when I was younger. No one could tell me what the title was. I had left posts all over the internet for years. Finally, it turned out, the main character's name was the title of the book! So after over twenty years of searching, I was able to get a copy of it. And then........I found that due to the cognitive problems of this wonderful disease, I was only able to read some of it and had trouble with even that much. I ended up putting the book in a drawer and haven't touched it since I got it. And this was something I had searched and searched for and finally gotten and was so excited to have again. And it really hurts that I can't enjoy it at all. It's a long out of print book, not on audio books and the whole point was to read it and enjoy it quietly.
Spitfire, exactly, we do need money. And none of the supplements or alt treatments are ever covered by insurance. I feel that if I could afford all the stuff I really need to help me, I'd probably be alot more functional. But I can't afford the amount of supplements and alt treatments it would take.
Carrigon, if it makes you feel any better, I really once had an employer that was as understanding as the one you describe in your last few paragraphs- and still I couldn't work. It was the job I had before I got sick and everyone was really very understanding. Of course, it was my college kid movie rental store job and I made only a few dollars over minimum wage. I never made it to a grown up job as I got sick right after graduating college. I could work as much or as little as I wanted, and call off if I could find someone to cover (never a problem) I could make my schedule so I was never alone, and had co workers so awesome that they did not complain if I was late or had to leave early, or if all I could do was lay on the floor and sort things or make phone calls. They made special shifts so I only had to come in for 3 hours at a time, once or twice a week.

Even with overwhelming accommodation that most could only dream of, I still couldn't keep going, it was taking too much out of me. And my ever so amazing boss, when the reality set in that I just couldn't go on- would call me every so often to see if I was having a good day and might like to come in and do a little organizing or labeling for a few hours and get paid cash. No pressure or expectations, just to see if I might like to and be able to. On top of that, all my former coworkers continued to give me free movie rentals until I moved away (probably almost 2 years after I had stopped working there) we joked it was my consolation prize, and, for a sick person who laid on a couch all day, a pretty good benefit.
Before I got sick, I worked in a video store, too, for awhile. Absolutely loved that job. It was my favorite job ever. I got to put on new movies all the time. And they had an awesome stereo system so you could put music on all day. It was great. They ended up closing down because it was a private small business and as soon as Blockbuster and other big places took over, they couldn't compete.

My friend, Kathy, who also has CFIDS/ME, she got sick while working at a music store. And the boss was accommodating to her, but she still couldn't do it and had to quit. She'd end up laying down on the couch in the employee lounge and couldn't get up and finally it was like, quit or be fired. Employers can only accommodate so much. If you can't do the work, you can't do the work. She loved that job, too.
Interesting. Yeah we were lucky in that the town I lived in at the time was so remote that blockbuster would never dream of locating there! There was Movie Gallery on the other side of town...but our movie store is like one of those amazing repositories where you can find the most obscure things you could ever dream of, so the chain stores are no match. Netflix on the other hand might do them and a lot of other indie stores in in the end.

I don't think it's a coincidence that I got sick working there. People rent movies when they are sick. And in Maine in the winter, a lot of bugs go around. Even with tons of hand sanitizer and washing, we were catching every bug that went through town, every winter. I just kept getting virus after virus and finally something just gave out.

Anyway, it being my last job I still have a lot of work "fantasies" related to the movie store. Just seeing myself rocking out to music and putting stuff away on the shelves and organizing everything. One of my best friends (who was actually my manager at that job and still works there) sent me a bunch of burned cd's for my birthday last week in these little paper envelopes that we used to store used cd's and porn in when they were for sale. I almost burst into tears when I realized that half of the numbers that had been scribbled off the envelopes were in my own handwriting! It was just so weirdly touching to realize that however far gone the world of work may be for me, that part of me was still there, and that my handwriting is still all over a lot of stuff there- almost 3 years after I'm gone.

Can you tell that I miss working too????? hahaha I'm rambling!
Maybe we're just not meant to work? I don't know. Before I got sick, I was going on job interviews and alot of weird stuff kept happening. I went on one for a book publishing place and got a flat tire before the interview. I actually lost getting the job because of it. I got there and was upset about the tire and I guess I didn't make a very good impression because of it. And then, I went on a job interview for a homeopathic company and the owner said she felt I was meant to do something creative with my life and didn't hire me because she said she didn't think I would stay. I really wanted that job, too. It just seemed like everywhere I turned to try to get work, nothing panned out. I was even up for a job at a florist shop and then suddenly the owner's daughter decided she wanted it, so I didn't get that, too. And then I got sick. So I didn't get to build up a real work history. And that really sucked because I get so little in social security because I got sick too young to have paid into it much.

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