My ImPOTSible Life

A blog about living with Postural Orthostatic Tachycardia Syndrome, Chronic Fatigue Syndrome, Small Fiber Polyneuropathy and Irritable Bowel Syndrome

[impotsiblelife]

I haven't posted on here in a few years because I've been busy trying to pursue more treatment, build up an at-home career, etc. Although I'm doing better than I was before physically and financially, within this broken system all of that effort is not enough to sustain myself independently of family. Late-stage capitalism requires even healthy people to burn themselves out to survive, which is wrong on so many levels and a whole other conversation. But as disabled people, we can't even attempt to keep pace with inflation and the full-time work and side hustles needed to get by. That feeling of never being good enough is pretty soul-crushing, and I just needed to express it somewhere.

[impotsiblelife]

Don't feel bad if you haven't recovered from a condition your doctor says is "very treatable." Doctors and society in general often underestimate how debilitating pain, physical illnesses, and mental health problems can be. Don't listen to anyone who insinuates that you don't want to get better or aren't committed to your treatment because your symptoms haven't improved much. Take as long as you need to heal.

[impotsiblelife]

Doctor: Don't worry, you'll grow out of it when you're older.

Me, a grown ass adult with a mortgage: *still waiting*

[heyatleastitsnotcancer]

The SSI Restoration Act of 2021 is currently proposed to congress. SSI is a type of disability payment for disabled Americans. The bill will increase the SSI payment to the poverty level (right now the maximum payment is 9528$ a year). It will allow disabled people on SSI to marry and not lose their income. It will increase the asset and income caps for SSI among other improvements.

Friends and I made a website that has all of this info plus a REALLY easy way to send an email to your state reps. If you click the link below and click send email, you can send a letter of support for the SSI Restoration Act to your state reps. It's already written and takes only a few minutes. Seriously it is ridiculously easy. These emails have more pull to reps than resistbot so please fill out if you can!

We also have a Facebook page called "Campaign to Fix SSI" that has this information and regular updates. Here's the link for that.

See posts, photos and more on Facebook.

Please do this and boost! It could change the lives of millions of disabled Americans.

[heyatleastitsnotcancer]

This got a big boost in reblogs/likes the last day or two. We are up to over 500 letters sent! Please keep boosting and if you are in the US and able to, actually do the letter campaign. We got 3 new cosponsors on the bill this week alone and will only get more if you contact your representatives.

[heyatleastitsnotcancer]

We are up to 900 signatures! The post is losing a bit of traction that it's had the last week (which has been amazing) so please keep boosting and send those letters! (and call your members of congress if you are able to. That holds the greatest weight but I understand it's challenging for many)

[heyatleastitsnotcancer]

10,000 notes and 1,700 letters sent. Imagine if everyone who reblogged/liked who could send a letter did. The numbers would be huge. So please if you reblog/like and are able, please send a letter in support of the SSI restoration act.

This could change the lives of millions of Americans.

[impotsiblelife]

Becoming chronically ill because of a virus or infection is such a surreal experience. One day, you were fine, and then after developing a simple cough, cold, or stomach flu, your life was changed forever. 

[impotsiblelife]

Your disability doesn't make you weak, it makes you strong. You cope with way more than the average person and still manage to keep on going. You're a badass.

[impotsiblelife]

You know you have a chronic illness when... you think your symptoms can't get any worse and then the universe proves you wrong.

[impotsiblelife]

It’s fitting that we’re called patients, because we need lots of patience to deal with unhelpful doctors and wait years for a diagnosis. 

[impotsiblelife]

You deserve doctors who won’t stop believing your symptoms are real after the first tests they run come back negative. 

[impotsiblelife]

For spoonies the saying isn’t we make plans and God laughs... it’s we make plans and our bodies laugh. 

[impotsiblelife]

When you work and have a chronic illness, most of your life is dominated by your job. On days that you’re not working, you’re resting and recovering so you don’t miss your next shift. You don’t have the energy to hang out with your friends or spend time with family. Work tasks also take you longer because of symptoms like brain fog and fatigue, so you may have to put in extra hours on your nights and days off to get everything done. Work bleeds into your personal life so much more than it does for a healthy person, and saps you of your energy so much that it’s often the only thing you have the spoons to do.

[impotsiblelife]

Chronic illness introduces a whole new set of worries and fears into our lives. We worry that our doctors won’t take us seriously. We worry that our medical tests and procedures won’t go well. We worry that the treatments we’re trying won’t work. We’re afraid that we’ll get worse and be unable to work, leave the house, or leave our beds. We worry that we won’t be able to provide for ourselves financially. We worry that some of the people in our lives won’t be able to understand what we’re going through, because they’ve never had to worry about health like we have. 

Dealing with all of those very real worries and fears can get pretty exhausting, so remember to take care of yourself. 

[impotsiblelife]

I recently had a doctor tell me that I should “stop seeing doctors” because a treatment I received has eased some of my symptoms. I didn’t say anything to him at the time, but I wanted to tell him how wrong he was. 

I can’t function nearly as well as I was able to before I got sick. Why should I stop seeking treatment just because I’ve improved some and am no longer totally bedbound or housebound? I don’t think that my doctors would accept such poor health for themselves or their family members, so why should I? 

I think doctors also don’t think about the fact that my health directly influences how much money I earn. I want to have the option of working full time for someone else to increase my paychecks, but I don’t think I’d be able to sustain that kind of employment right now. I can’t support myself on what I currently earn online, and I don’t want to live on a below poverty level income if I don’t have to. 

So, sorry doctors, but as long as I’m on my parent’s health insurance, I’ll be seeking out new treatments. 

[impotsiblelife]

I'm turning 27 next month, I'm homebound due to illnesses, and still living with my parents. I get so frustrated and down when it comes to money. I have literally no income. My bank account is at 0. It makes me feel so trapped and hopeless. I've looked into survey sites for money but I worry about scams or how to do them properly without wasting massive amounts of time for no money. Do you have any tips for making $$ when you're confined to your bedroom? any little bit would help

Hi! I’m so sorry this took me so long to reply to! 

Two survey sites that always have surveys available are Swagbucks and PrizeRebel. They have a lot of the same surveys so I’d only recommend using one (I use Swagbucks). Other survey sites only send you surveys a few times a month and some are even invitation only. Pinecone Research is invitation only for example, but sometimes invites are available on Swagbucks (you’ll get extra points for signing up) or on blogs. It’s definitely worth signing up for, so far I’ve made $9 for very little effort and I successfully cashed out a $3 check two months ago. I also like YouGov which gives me surveys that are mainly about politics every few days. You could also try Vindale Research or Global Test Market, they’re both reputable. 

It’s very hard to get into, but Amazon Mechanical Turk is also great for surveys. I’ve seen people making hundreds of dollars on MTurk a month by doing surveys and something called “batch HITs.” They’re small Human Intelligence Tasks that usually involve transcription or data entry. MTurk isn’t always accepting new applicants, so if you try to apply and get rejected, try out Clickworkers and Neevo. They’re very similar websites and you could still realistically make at least $100 a month on those websites. 

A few other things to look into are freelancing, teaching English online (head on over to a Reddit forum called OnlineESLTeaching for a wealth of information about this), and working for companies like Appen or Lionbridge that do search and social media engine evaluation. Currently I freelance and it’s a lot easier than you’d think. I’d recommend virtual assistant work because it’s not super mentally taxing. Try Fancy Hands - it’s like UpWork or Fiverr but it’s specifically for virtual assistants. Tasks are posted there daily and you can pick up tasks when you have time and feel well enough. Freelance writing is also easy to break into, try a freelance writing board like ProBlogger or Freelancewriting.com. I hope some of that helps, message me if you need anything else!

[impotsiblelife]

Making a little bit of income every month has greatly reduced my stress. 

Before I started “working” online two months ago (I use the word working loosely because I mostly use survey sites and “beermoney” apps to make money), I was constantly stressed out about money. I knew that not being able to work because of my chronic illnesses was nothing to be ashamed of, but that didn’t change the reality that not being able to support myself financially was incredibly stressful. 

I’m not making enough money to support myself yet, but each month I’m seeing my income increase as I learn more ways that I can earn money from my bed without tiring myself out too much. A few months ago I didn’t believe that was even possible. I’m worrying about money less and less and my mental health is improving a lot. 

It’s incredibly sad that anybody has to worry about how they’ll put a roof over their head and put food in their mouths. I wish things weren’t this way. But if anybody needs some help figuring out how they’re going to make ends meet with limited spoons, or just wants to vent about their financial stressors, I’m here for you... just reach out to me over chat. 

[impotsiblelife]

Accepting your limitations when you have a chronic illness or disability doesn’t mean you’re lazy or pessimistic. It’s more than ok to acknowledge and respect the fact that there are things you just can’t do. Don’t listen to anyone who tries to put you down or make you feel guilty for saying “no” when you aren’t able to do something. 

[impotsiblelife]

Sometimes I feel like being tired all the time isn’t “that bad.” That I should be able to push through fatigue and get things done like everybody else. But then I remind myself that extreme tiredness and sleep deprivation are forms of torture. I once read a study that suggested that healthy people would have to go without sleep for 3 to 4 days to experience the kind of fatigue that chronically ill people feel. 

Chronic fatigue is real, disabling, and not just something to “push through” or “get over.”