Finding a job with hypersomnia and chronic farigue

@Sabran Thanks for sharing what you're living with. You're not alone and the rare disease world can be really discouraging when it comes to lack of treatments, cures or boosts for quality of life. Sounds like you've identified some barriers and also know what your body and condition won't be able to tolerate when it comes to traditional employment. There's got to be something, don't give up. Possible that your doctor could recommend a part time or per diem option that could flex around your symptoms? Are their supported employment options in your community? I hope the disability support is approved and wish I had some advice- truth is I recently had to leave my job after realizing illness and new limitations don't allow me to physically do much anymore. I'm hoping also for some kind of way to still support myself. Best of Luck!

Hey, I have a lot of fatigue too due to illnesses. I quit school and other symptoms factor in, but in terms of day to day functioning fatigue is the biggest barrier for me. I also know though things can get serious if I push through fatigue.

I have a job now. I found an issue at a company where people didn't want to do some of the computer based responsibilities of their jobs and would often be asking others who had a lot to do already to do these tasks for them. I approached someone at the company and offered to do this. My husband works there (it's how I was aware of this issue) eventually up the chain agreed this was a good idea and created a position for me. I do have a degree connected to the work I do although it's not necessary for what I do, it helps. I work from home, most of the time hours are flexible, people who send me work have been informed to give me a few days to complete the tasks but I do get rushed requests too. I also had to go in for some training and had additional in person training so I could learn more that did cause me acute flareups and I crashed for a few days after.

My job actually started off as a joke, where people who get paid a fair bit to do things didn't want to do these tasks and I was like well gee, they should just pay me a small portion of their salaries for me to do that for them. (I could never do the main responsibilities of their jobs which involve some heavy lifting). As this happened more and more it turned into a serious opportunity when this issue grew bigger. Now I actually oversee a totally different aspect at the same company as well, again because others didn't want to do it and it's something I can cover remotely and with flexible hours.

I know this isn't really typical, but I think there are many companies that can be flexible with employment if you approach them with accommodation suggestions. As an example, I have seen job splitting where 2 people share 1 position.

I do find some of what you have posted to a be a bit alarming. Sleeping for 72 hours, do you mean straight? Are you still seeking some answers?

My fatigue is pretty bad, but at max I sleep for 24 hours straight and that has only occurred a handful of times in my lifetime. I'm sure you're aware but longer than that (and even 24 hours can be a problem) can have a lot of negative effects due to dehydration, issues related to not using the bathroom, etc. Also deficiencies from not eating if days like that occur fairly close together.

I don't know much about the criteria for being labelled with idiopathic hypersomnia. So this may just be my total ignorance but to me it's sounds like it's describing a symptom along with stating it's not known the cause. ie. idiopathic - unknown cause. I do know though that for now there are things that are put under idiopathic labels and they are considered diagnoses for now, which often change as more is discovered. I'm just not aware of idiopathic hypersomnia falling under that - please correct me if I'm wrong, I would be interested in learning more if I am! It's never a diagnosis I was given and it has taken many years to get proper diagnoses that connect to my fatigue. For example, I have numerous tumours that took years to be discovered.

Generally with symptoms that are pretty extreme like how much you sleep I encourage people to keep up with following through on testing - deficiencies, inflammatory panels, autoimmune marker, kidney function, liver panel, thyroid, sleep study, PFT brain MRI, etc. I also understand how exhausting it is to deal with it, but even just doing a full physical including some extra tests added to the normal screens once a year sometimes pick up on something that previously didn't show up/no one thought to test before. Hopefully that will eventually pick up something that can allow for some treatments that can either resolve the symptoms or at least improve them!

Very useful information, but I would also like to know how to start my own business! What are the nuances and what is needed for this and how difficult is it?

If you want to open your own business soon and people will work for you, then you need to make an employment contract so that you can officially hire employees and each of you knows your rights and obligations. This is a very useful thing that is necessary when running your business! Use it, it's very important!

@Sabran

Hi nice to meet you, im here if you want to talk.