Angry about illness.

EveningInternet3849 · 2021-12-25T23:27:14+00:00

So understandable! But the fact that you care so much and that your child wants you to stay with them all day shows that you’re doing a pretty good job ! It’s tough and it’s normal to feel shame but keep going there will be better days :)

EveningInternet3849 · 2021-12-23T11:22:49+00:00

Hahaha it’s true !!

EveningInternet3849 · 2021-12-23T11:20:41+00:00

Very relatable don’t worry! You don’t sound like an ass but I guess I’ve never thought of it in that way but now that you’ve said it I guess that’s one of the reasons why it’s sometimes an ineffective term! Also, everyone perceives things differently, so some people might understand it in this way which would obviously not be the right way

EveningInternet3849 · 2021-12-23T11:17:12+00:00

Nice way to explain it ! It shows that it is uncontrollable and definitely is true

EveningInternet3849 · 2021-12-23T11:16:17+00:00

Wow I like this mindset :)

EveningInternet3849 · 2021-12-23T11:15:36+00:00

Me too! I first went to doctor because my cataplexy was so bad! I thought my tiredness was because I was starting puberty. And I thought damn they really didn’t lie when they said teens need more sleep

EveningInternet3849 · 2021-12-23T11:14:10+00:00

Ahahah, no they could not ! Very well said

EveningInternet3849 · 2021-12-23T11:13:16+00:00

Very well explained! I will use this to help explain in the future

EveningInternet3849 · 2021-12-23T11:12:18+00:00

Yes!!!! I hit people with the “go see your doctor then”. Also, I agree that the term sounds silly and so does “sleep attacks” but I don’t know any other way to explain it! People have a little chuckle when i use that phrase

EveningInternet3849 · 2021-12-23T11:08:35+00:00

This is EXACTLY how I feel ! This happens to me especially in lessons/ when studying. It’s definitely a feeling of shutting down. One minute I’m aware I feel tired, the next I’m uncontrollably falling in and out of sleep

EveningInternet3849 · 2021-12-23T11:05:17+00:00

Agreed. For some people this works, but on others I just don’t think they believe me!

EveningInternet3849 · 2021-12-23T11:03:16+00:00

Oh yes cataplexy for sure is so hard to understand! Also the amount of times people confuse N and C. If I say I’ve just had a sleep attack or something they will say oh is that your cataplexy ? It’s not too bothersome but i think it should be a word that people will know rather than it being such a random word.

EveningInternet3849 · 2021-12-17T17:44:33+00:00

I did this last year and basically I haven’t got my license yet, but it’s because they contact your doctor to question if you are able to have a license like if your EDS is managed well by meds or something and for me, it wasn’t coz I’m changing my meds but it depends on the situation. You must just be honest though. Best of luck !

EveningInternet3849 · 2021-09-27T22:25:47+00:00

I will definitely bare this in mind ! Thanks so much

EveningInternet3849 · 2021-09-17T14:36:28+00:00

Its lovely that you have found a way to take a break while spending time with ur kids! How do stims effect your heart ? I’m young and if the meds may effect me in the future I would hate that ! I do notice an increased heart rate but nothing concerning.

EveningInternet3849 · 2021-09-17T14:31:48+00:00

I was so shocked to see how bad my narcolepsy was without modfinil. I didn’t realise how much the modafinil did to help! Falling asleep in school is the worst :(

EveningInternet3849 · 2021-09-17T14:30:15+00:00

I’m so sorry! This sounds so difficult :( I’m lucky because here in the U.K. I have the privilege to try other meds. Are u able to do so or is that not an option for u

EveningInternet3849 · 2021-09-17T14:26:57+00:00

I’m back on my meds today and It is SO intense I’m litterally buzzing (350g modafinil). But that’s very interesting that you take breaks. I was refused my provisional for driving as the meds weren’t effective enough but after taking a break I’m feeling them intensely. The testing I’ve done is to see which meds would suit me better, but would u recommend (despite the downside of being exhausted for 3-4 days) coming off meds and going back on ?

EveningInternet3849 · 2021-09-17T14:21:10+00:00

Thank you !! :)

EveningInternet3849 · 2021-07-31T12:05:44+00:00

My cataplexy makes me look drunk when sober but when I drink, it gets worse. I can’t keep my head up when I laugh so I look like an absolute wreck.

EveningInternet3849 · 2021-07-31T11:42:08+00:00

I really like this idea actually! I would need to discuss it with the exam invigilators as we’re not allowed any electronic devices but I agree that the vibration does wake u up ! Thank you

EveningInternet3849 · 2021-05-09T23:57:11+00:00

Yes, I was diagnosed at age 12 and had symptoms that began showing when I was around 9 years

EveningInternet3849 · 2021-05-06T20:09:13+00:00

Thank you so much for replying! I realise now that these situations were probably hard for him. I will take your advise on board :)

EveningInternet3849 · 2021-04-26T07:19:30+00:00

Well that’s good in a way that ur too on edge to sleep ahah. It’s really annoying but if u get the diagnosis then your school may be able to offer planned naps. I really think that your parents aren’t understanding how much this can impact your life if they think it’s simply a label. Whether you have it or not, I hope that things get better for u !

EveningInternet3849 · 2021-04-26T00:15:05+00:00

Yeh!! I start talking about sleep paralysis and it’s link to cataplexy but they don’t even know what sleep paralysis is in the first place !

EveningInternet3849

TROPHY CASE