RANT Stop Suggesting Jobs for Me!

[Carrigon]

This is something that just makes me so angry. And the jerk I just dated did it to me. And I've had other ignorant people do this to me.

People start saying, I should do this or that. Oh, you can do your own hair, so why don't you get a job in a salon? Or, you're so good with computers, you should be making good money, go work for a company. UGH!

First of all, if I could do those things, I'd be doing them, and I don't need some idiot suggesting what I should be doing with my life.

Second of all, what part of not well enough, on disability because I'm too sick to work do these people not understand?

I don't care how well I look to them. I am not well. I can pass for well for a certain amount of time, and then I crash very badly.

Also, how I live my life and what I do is NOT up for discussion. It never has been. No one has the right to come into your life and tell you how to live your life. Do I butt into their lives and tell them what they should be doing? No, I don't. Seriously, this really makes me mad.

I do what I can do. And I often still do surveys to make some money to supplement my income. I'm sorry these idiots don't consider that to be work, but it actually is a form of work. It might be low paying work, but it's still a form of work.

And most the time, I'm so sick from the POTS lightheaded attacks or the pain I get and the crushing fatigue and the cognitive symptoms that all I can do in a day is feed my cat. But I shouldn't have to justify my life and how I live it to anyone.

People should try having this before telling us how to live and work.

 

[heapsreal]

i just pictured you lying down cutting people hair, mm how does that work??
I agree with you, just because you can do your own hair doesnt mean you can do it for 8 hrs a day 40hrs a week, all the time, they just dont get it.

good luck.

 

[Carrigon]

What gets me is that it is rubbing salt into my wounds by telling me all the things I could be doing if I were well. I'm well aware of what I could be doing if I were well, and I don't need those idiots telling me so.

Do they think we're just too stupid to know what to do?

 

[justy]

Carrigon, i sympathise entirely. Only yesterday a friend said to me "you should sell your jam, it was lovely the jar you gave me and you could make it into a business" Does she think i havent thought of that!? or that i wouldnt be working if i could, and to be honest if i was well enough to work i wouldnt faff around making jam for peanuts but get a proper, interesting job, earning good money that would be both lucrative and fulfilling. Unfortunately ive never been well enough to do this in my life, but i have tried a number of times only to crash again and end up more ill. Do people really genuinely believe that we havent tried to work or thought about all the different ways we could earn a living, even as we lay on our backs in pain?
Sympathetically, Justy.x

 

[SickOfSickness]

Love your posts, they echo how I feel too. I was just thinking the same about my sleep. It's bad enough that I have to suffer through this, but then I have to hear the advice and comments too. It's not a choice to have irregular and unrefreshing sleep. I say almost everyone is just really dense and clueless. Sometimes I even had a person who seemed understanding and kind, say 5 times in a row, and then they screw up the next time. They forget or they aren't being careful that time. We have so many layers of crap to deal with. Horrible illness.

 

[Rooney]

The job comment just happened to me this week from a close family member. An elderly person so I try and make excuses, but it is abusive none the less. Now I must avoid him as it happens all to frequently. Crying shame.

Thanks for sharing.

 

[Carrigon]

I swear, the next person that does this to me is not going to like the response. Do we suggest jobs for them? Maybe we don't like what they do for a living. If someone does this to me again, I'm going to say, if it's so easy, why don't you try doing it. Or maybe I'll be really rude and say I wouldn't want your job. Why don't you try something else. I'm just so sick of people butting into my life who have no clue.

I know how to do my own hair because I used to have my own haircolorist for years. I watched him long enough to know what I'm doing. And I also went to beauty school for awhile when I was a teen. But I didn't get to finish it because I got sick and had to have surgery. So I don't have the license. But I can cut and color my own hair my way. However, I only do it once every bunch of months when I can finally get the energy to do so. And there have been plenty of times when I've been so sick from the lightheadedness that I've had to sit down about eight or more times while trying to do my hair. It's not easy on me at all. And I would never make it trying to cut or color someone else's hair when I have to keep sitting down and feeling sick. Not to mention the pain in the back and arms trying to angle and hold the scissors and do it right on someone. And then there's the chemicals you breathe in and touch doing it. I can't walk into a salon anymore because of that. My MCS flares right up. That's why I have to do my own at home. I can't be in a salon anymore. But the idiots who suggest I do it have no clue.

And I could never work for anyone anywhere. I'm always in pain, I flare up all the time. I barely made it to do my foodshopping today, and I cannot tell you how much I am suffering for doing it. I have to take something for it or I'll never get rest. I did the big major month's shopping. Even the cashier asked me how long all that would last. And I said the month. People don't understand that I can only go out a few times a month, so I have to stock up because I end up stuck sick in the house for weeks on end.

I also have the adult autism symptoms pretty badly. I have trouble driving and can only drive a very short distance to the store and back. I have too much audio processing and sensory input problems.

I can't even volunteer anywhere. I'd never make it. And it's not for lack of wanting to. They want me back at the senior center I volunteered at years ago. But I can't do it. I'm not well enough.

Anyway, I really wish people would try having our illness and our pain and all of our suffering before telling us how to live our lives. Like I said, our lives are NOT open for discussion. If we're not asking, they should keep it to themselves.

 

[Enid]

Sorry to hear Carrigon - yes the absolute ignorance surrounding ME is very tough. Hoping you will more understanding around you - like 3 junior Docs in Accident and Emergency after foisting a psycho on me (I was in a completely collapsed state) sheepishly admitting "you know when you ill" and disappearing. Can't think how I managed to find my way home.

 

[Snow Leopard]

Maybe you should turn it on its head - assume they are suggesting things for you to do when you have recovered and take it as an opportunity to speculate on increasingly outlandish/speculative things you could do. They might get the hint when you suggest you want to ride a bicycle across the world to raise money for charity.

 

[Carrigon]

I had someone a few years back suggest I go to work at the potato chip factory as a potato peeler! Eight hour shift. Yeah, right. I can't even sit up past two hours and that's pushing it. If people really saw how I am behind closed doors. I don't stay in my living room long because I start to feel lightheaded, so I end up having to lay down. I have alot of pain in my upper back, shoulder, arms. I can't even do any of the hobby stuff I used to do because it hurts too much.

 

[hurtingallthetimet]

went to post reply accidentaly deleted...arrggghhh...

hello carrigon i hope you are doing well....was very sad to see how you were made to feel..i think alot of us if not all know how you feel...just becuase you felt like fixing your hair why in the world would someoene who knows your ill think you could stand on feet all day fixing someone elses?? thats crazy...or peel potatoes..thats even more crazy...

i know how you feel though..my family whos known me since birth. they know i was never on medications...worked my whole life....doing alot at the same time also...very busy...and i worked as long as i could when got ill and i was and still am devasted when had to stop working...i love my kids more than anything and miss helping provide for them...but still my family will ask when am i going to find a job....they know im ill they know i need surgery cant afford etc. etc...it is very hurtful..i even thought about lying and saying i have a job..how pathetic is that? but thats how embarssed i am and how i have been made to feel..

as you said if people could see how sick we are...no one would want to live like i do...i have to force myself to do things...i have to take morphine to get through the day...i was never on anyting before..i dont know of any other illness that gets such little understanding and respect...if someone with another illness that caused the same problems your having to live with daily fixed thier hair a party would probably be thrown for that person..but someoen with this illness fixes their hair and its like a witch hunt...you can fix your hair and move your arms so get out and get a job...geezeee...its hard to make it through anything...get up lay down between doing anything...memory problems alone and foggy and sedated from medications how can anyone do anything??? just upests me so much..its a sore subject for me because im disappointed i cant do more for my kids and my family treating me like you were as i said i understand how you feel..

you seem like a strong person who speaks their mind and thats wonderful...you should be very very proud of the surveys you do..if people had to walk a day in our shoes they would be amazed at the strength it takes to do anything most days...all i do is groceys or doctors and its an ordeal in sooooo many ways....but what do pepole expect??? other illness that cause alot of pain and fatigue just like these illness are given understanding and sympathy...but with the illness with have to deal with its treated cold and hurtful...just like other ill people...we have to wash hair...dont always feel like it...dont always do it like i use to...but we have to live...its just crazy...no one should have to justify fixing their hair...or anything...what they dont understand is the great amount of pain and fatigue that comes along with doing anything even fixing hair one day!

 

[Carrigon]

So true. The whole thing is, I can pass for well for short periods of time. But no one realizes that I crash and die afterwards. I might be able to pull myself together to go somewhere, but it takes me like four hours to get ready. And I can go for a short period of time. And usually after an hour I'm wishing I was dead from the pain and sensory overload. And when I come home, I am in so much pain and so dead. And I have to take pills just to try to kill some of the pain. And then the rest of the week, I'm pretty much dead and flared up in so much pain and suffering that the outting was not worth it. It's never worth the payback. I end up wishing I was dead or suicidal from the pain. It's never, ever worth it. No one normal understands what I go through and how horrible it is.

 

[hurtingallthetimet]

hello again carrigon...hope your feeling much better...and i think we all understand what you are going through and how hard and painful and exhausting it is..

as you said you can pass for being well for a little while but poeple dont see the big picture...sure you felt like fixing your hair or maybe you didnt but you did but point is fixing your hair shouldnt be painful or tiring...and i dont understand why someone doesnt get that..its not normal to be so tired and in so much pain and crash after doing what is a normal everyday chore for someone not ill....they may see tiny bits and pieces of us pretending to feel ok but you put together all those little broken up pieces over time and it may look ok on the outside but if anyone had any sense theyed know that a persons life shouldnt be broken up into pieces and put back together to look normal......i konw if i am asked how i feel i always just say fine because i figrue no one really cares...but if i go anywhere espically if hubby doesnt drive and i cant take pain and anxiety medications it is horrible...all the overwhelming of everything..the anxeity...then the soreness and pain and fatigue crash after you get home or the next day is beyond horrible..

my conselour suggest i do something i use to love and i use to love love love garage sales when i was healthy so i pushed myself to go to a few...it was kinda nice but so much pain afterwards it was like i understand why conselour wants me out of house to help with the anxiety but no one should crash after going to a garage sale.just very hard to want to do things to get better and not being able to.


as i said any other illness that causes the same amount of pain and fatigue that we go through is given respect and sympathy even if its invisiible also..but why do theese illness get treated so badly? still cant believe someone suggested you peel potatoes thats beyond crazy...as i said a sore subject for me because how badly i feel for not being able to do more for my kids and the way ive been treated...maybe someone who has influence with the world will be ill with these illness one day..not that i wish it on anyone at all..but if someone with influence did get ill with these illness maybe people would understand more and have more understanding for us...

 

[Carrigon]

No member of the elite, government, the Bildebergs, nor anyone else in power will ever be sick like we are. They don't get vaccinated. They don't eat anything unless it is organic and prepared by their own private chefs. They know what they're doing, and they know they got us sick.

Anyway, I agree. It's not normal to find the smallest things make you sick and dead. Cooking nearly kills me. There have been so many times where I felt like I was going to collapse at the stove. I've had people say to me, oh you cooked dinner tonight, why can't you do it tomorrow, too. And it's like, just because I managed to do it once and nearly collapsed, that doesn't mean I can do again tomorrow. No one gets that. If I can do one thing one day, I usually cannot do it the next day or for many days after that. It's just like the whole passing for well thing. It never lasts. But people don't look close enough and they don't look at the whole picture. I'm pale as a ghost, I'm double the size I was when I got sick. I have dark circles under my eyes. If they would really pay attention, there are big differences. Even the way I walk now. I walk like someone in pain.

 

[taniaaust1]

I'd hate to have a ME person cut my hair if their ability to concentrate is anywhere like mine is... I'd be worried about loosing an ear!!!
hahaha if anyone ever said that to me.. maybe I'd offer to do their hair! (I actually cut my boyfriends finger open just trying to cut his nails due to my lack of concentration)

Even worst when comments like that come from people who should know you better.

 

[lisann]

No member of the elite, government, the Bildebergs, nor anyone else in power will ever be sick like we are. They don't get vaccinated. They don't eat anything unless it is organic and prepared by their own private chefs. They know what they're doing, and they know they got us sick.

Anyway, I agree. It's not normal to find the smallest things make you sick and dead. Cooking nearly kills me. There have been so many times where I felt like I was going to collapse at the stove. I've had people say to me, oh you cooked dinner tonight, why can't you do it tomorrow, too. And it's like, just because I managed to do it once and nearly collapsed, that doesn't mean I can do again tomorrow. No one gets that. If I can do one thing one day, I usually cannot do it the next day or for many days after that. It's just like the whole passing for well thing. It never lasts. But people don't look close enough and they don't look at the whole picture. I'm pale as a ghost, I'm double the size I was when I got sick. I have dark circles under my eyes. If they would really pay attention, there are big differences. Even the way I walk now. I walk like someone in pain.

EXACTLY!! Bilderbergers/ruling elite do NOT get sick like this .... we know where Lyme came from, and I think CFIDS came about the same way. How else to explain the initial cluster outbreaks in Tahoe, Lyndonville, etc.? Since the Fukushima meltdown(s) last March I wonder if they are somehow immune or have some type of antidote/protection even against radioactive fallout.
The Chernobyl meltdown was covered w/ boron/concrete fairly quickly, but so far not even any plans to do the same to Fukushima .... over a year later and fallout continues to pour into the air and seawater. Instead of sealing it up they are giving contracts to "rebuild" it. (?!) My memory is currently shot - so can't recall the name of company (possibly Shaw Construction?) but contracts so far have gone to a division (or shell corp.) of Halliburton, the "crisis capitalism" specialists.
What possible reason could there be for this - besides depopulation w/ plausible deniability? Estimates of Chernobyl related deaths are around a million people .... imagine the eventual death toll from Fukushima. (And what a name ... FUK U shima ... FUK us indeed)

I've been sick since 1991 and have gotten more "suggestions" for possible employment than I care to remember. If I had a dollar for each ridiculous peice of unsolicited "advice" I've received over the years, I wouldn't need a job at all! And it IS so much worse coming from family or friends who you would have thought - and hoped - would know better.
Sadly, the ability to "pass for well", and leave the house for a few hours looking "normal", seems to only make things worse for us in the long run. No one sees all the pain and suffering, before and long after (even during) those few hours. And really - after 20 years - if anyone cared to pay attention .... I don't think I even appear "normal" anymore, for the same reasons - huge abnormal weight gain, then loss; pale, unhealthy look to skin; and the frail movements of someone twice my age - or in horrible pain.

By the way, I absolutely love your signature quote, and have borrowed it many times. (Except for the "wealth" part .... while that still applies today to many diseases, unfortunately now wealth is almost essential to treat/recover from this one)

 

[Carrigon]

Lisann, I got sick in 91, too. So many of us got sick in the early 90's. It's no coincidence. Do you watch Alex Jones on Youtube? He's always talking about the vaccines and aspartame and everything else they do to make us sick.

 

[jimells]

My former partner used to cut help-wanted ads from the newspaper, even though I was already working about 10 hours a week, and could barely get through that. The worst part of it was that *she* had fibro, but still treated me like a lazy welfare bum! Of course, it was different for her, since she was collecting Social Security Disability. The reason I wasn't collecting SSDI? I wasn't trying hard enough!

When I came home from work to a Dear John letter I was devastated emotionally and financially. Now I am only devastated financially (my only income is food stamps) so that is actually an improvement. Being almost completely isolated socially is preferable to hearing the b.s. from my family and former lover.

I'm so grateful to have my little birds - they never pass judgement on how I live my life, and they are always nice to me.