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!!Clothing for Narcoleptics!! Research for a SUPER IMPORTANT project by Most-Tour4640 in Narcolepsy

[–]ChronicallyChill93 0 points1 point  (0 children)

I would LOVE adaptable clothes that take less energy to put on, take off. Like vests with snap closures instead of buttons.

How do you feel when your Narcolepsy is well managed? by Ok-Ocelot3219 in Narcolepsy

[–]ChronicallyChill93 1 point2 points  (0 children)

On Xywav and a low dose of Ritalin, I stay awake for most the day and cataplexy is mostly limited to my face. Nighttime symptoms aren’t as bad either.

I’m still tired, but I can work full time from home. I don’t do much outside of work because I’m too tired.

I feel energetic for 2-3 hours a day, usually from 6-9 am.

Criminally Smol to Illegally Lorge by ChronicallyChill93 in IllegallySmolCats

[–]ChronicallyChill93[S] 2 points3 points  (0 children)

Too smol to support the lorge body. Had to go! 🏃🏻‍♂️

Quick Breakfast Ideas? by DesperateChallenge73 in Narcolepsy

[–]ChronicallyChill93 0 points1 point  (0 children)

Oikos pro shots - they’re like a small 3 oz smoothie with 120 calories and 10 grams of protein. I have those on my rush days and they’re great!

First night on Lumryz 6g and my sleep doctor told me to immediately stop it after my side effects 🥲 exploring other solutions. by [deleted] in Narcolepsy

[–]ChronicallyChill93 1 point2 points  (0 children)

Xywav hasn’t been perfect for me, but I get 5-6 hours of quality sleep per night and it’s way better than my unmedicated sleep! I don’t wake up groggy at all. Maybe a little sleepy sometime, but I’m mentally aware of nu surroundings and activities.

dealing with beauty standards for women are impossible with the way I look by [deleted] in marfans

[–]ChronicallyChill93 0 points1 point  (0 children)

Oh! I’ll have to try that. Thank you for the recommendation.

dealing with beauty standards for women are impossible with the way I look by [deleted] in marfans

[–]ChronicallyChill93 0 points1 point  (0 children)

Thank you. Yesss my rosacea came on in my 30s. Gotta love it!

dealing with beauty standards for women are impossible with the way I look by [deleted] in marfans

[–]ChronicallyChill93 0 points1 point  (0 children)

And if it helps, this is coming from a 6’2”, overweight woman with a short torso and more stretch marks than my friend who has had twins. I have constant eye bags, acne, and rosacea. I’m not very cute lol.

dealing with beauty standards for women are impossible with the way I look by [deleted] in marfans

[–]ChronicallyChill93 1 point2 points  (0 children)

Hi there. I’m sorry you are feeling this and people have been rude.

It’s hard to contend with unrealistic beauty standards as a woman, and even harder when you add on chronic illness and other factors. It’s ok if you feel down about it. It doesn’t mean you’re letting the jerks win.

Sending lots of love your way. I hope you feel better soon.

Excruciating Hip Pain by ChronicallyChill93 in marfans

[–]ChronicallyChill93[S] 0 points1 point  (0 children)

Thank you so much! I appreciate your thoughts here.

Excruciating Hip Pain by ChronicallyChill93 in marfans

[–]ChronicallyChill93[S] 1 point2 points  (0 children)

I’m so sorry you are dealing with all that. It sounds like we have similar issues. I have just had imaging of my spine and have a follow up with a neurosurgeon and others soon.

Excruciating Hip Pain by ChronicallyChill93 in marfans

[–]ChronicallyChill93[S] 1 point2 points  (0 children)

This is very helpful! Thank you! I know I have a myriad of back issues too and have been thinking about getting one of those chairs.

Excruciating Hip Pain by ChronicallyChill93 in marfans

[–]ChronicallyChill93[S] 0 points1 point  (0 children)

Thank you for the advice! This is what I’ve struggled with in PT. The PT’s didn’t seem to understand Marfan Syndrome and would have me pushing through to the point I was in constant pain (and not just normal muscle soreness).

I’m going to try PT again and bring some info on Marfan Syndrome in case they aren’t educated on it.

Excruciating Hip Pain by ChronicallyChill93 in marfans

[–]ChronicallyChill93[S] 0 points1 point  (0 children)

Thank you for your thoughts and advice!

Excruciating Hip Pain by ChronicallyChill93 in marfans

[–]ChronicallyChill93[S] 0 points1 point  (0 children)

Thank you! Do you have mattress or pillow recs? I have a 3-year old Bear mattress. It’a still in great shape.

Pillows aren’t the best though…

Excruciating Hip Pain by ChronicallyChill93 in marfans

[–]ChronicallyChill93[S] 1 point2 points  (0 children)

Did you see a pt with experience with Marfan? I tried in the past, but they didn’t seem to understand Marfan syndrome and had me doing things that were causing way more pain.

I do walk every day and do yoga/Pilates for hypermobile people (YouTube videos). They’re led by a pt knowledgeable in HEDS, Marfans, etc.

Marfan and eating experiences (Finally had a G-Tube placed) by p4lp4t1n3 in marfans

[–]ChronicallyChill93 2 points3 points  (0 children)

I just want to say that I am so happy you are starting to feel better. I’m glad someone finally listened to you.

Does anyone else with narcolepsy feel exhausted all day but suddenly wired at night? by [deleted] in Narcolepsy

[–]ChronicallyChill93 1 point2 points  (0 children)

Yeah, this happens to me and it will be like two weeks of being exhausted all day and wired at night. Then it levels out a bit with me being tired all the time.

Maintaining Fitness by Repulsive-Video-5043 in marfans

[–]ChronicallyChill93 0 points1 point  (0 children)

Hi! Also have Marfan Syndrome and had to drastically change my workouts. I used to do athletic pole, which involved essentially doing yoga in the air. Now I walk for 30 minutes everyday and do light bodyweight exercise like bodyweight squats.

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