So for school i'm going to spread awareness because i have EDS so i asked all the people that i know and all my friends and on are lockers we are going to put a paper on are locker that say "Ehlers Danlos Syndrome Awareness month" with the zebra ribbon. (1 like= i should keep doing this)
I think I will do that too, I have ehlers danlose as well. I am kind of worried because a year ago I was dying from another illness and was severely malnourished, I would go to sleep wondering if I would ever wake up. And I had some hyper mobility issues with my ehlers danlose so I am more flexible then normal, like now I try running and my knee hurts and has to be popped back in same with my arms and hands when I play volleyball, and even when I pick up somthing that weighs nothing it pops my elbow out of joint. And with food some days it's ok but if I eat too much diary or sugar I get a tummy ache and feel really sick, and that's not eating much of it lol could you maybe give me some tips or share more about the type of ehlers danlose you have? And I am so sorry you are going through all this, you are definitely alot more positive than I have been. And i understand the energy drain lol does your heart rate go really high too? Just standing there?
My heart rate goes up while standing. The doctors think I might have POTS which can go with EDS but I can’t do the test yet because I’m to young. But they do think I have something else which I forgot the name (sorry lol) but I am on medicine to help
I feel for you, sweetheart. 😑 I have leukemia, and constant pain. I have days where I literally spend about 22 hours of the day in bed. I have no energy and being up hurts, so I give in and sleep....and watch yt. Lol The difference is, I'm old enough (plus some) to be your mom. I had my crazy days when I was young. At 18 (here in Canada) I was old enough to hang out at the bar and dance... And boy, did I. Lol So I got my crazy days in my youth...and I'm so sorry that you're being robbed of that. You're so positive all of the time...but it's really not fair...and I think you're allowed to feel that way. *Being sick SUCKS.* I'm trying to pack to move, and my son is half way through his 4 years of uni to be a teacher. There's still so much I want to do. And when I feel sorry for myself, I watch your videos, and you remind me that I'm lucky. And we're still here, my dear. You're an inspiration. ❤
Amen to watching her videos when I feel the going gets tough. And to see how beautifully and strongly she carries herself, it kinda gives me a reality check and I begin to look at things in a more positive light. Ive always wanted to tell her that but I didn't wanna be like..." I watch your videos to make myself feel better for the life I was given" but she truly shines a light for me.
I now understand EDS so much better than I did before. I now realize how bad it really is. I love how you ways try to stay so positive! I will be praying for you!❤️
Hart of Dixie is a really good happy show! Crazy Ex Girlfriend is really weird and funny but I love it anyway! I used to be the same with going to bed bc of my EDS and mono, which I had for LITERALLY a year (fun times).
We hear you hon. I’ve been wiped out and only been able to leave the house 4 times since March. That means only the most vital appts gone to and because I’m in a chair and my hubby works, I am at the mercy of the “special transit bus” 🚎. I miss having energy for my hubby and kids. I feel all my feels. My kitten just listens to me weep sometimes. Hey remember 18 is not unusual to have not growth spurts as a female but brain growth spurts that do contribute to your exhaustion. It’s ok sweetheart. I think ifnot all of us, almost all of us can relate to the flares and chronic fatigue etc. I don’t have narcolepsy but it sure feels I do at times lol according to my spouse I’m like the kitty, fall asleep anywhere I can be comfy.💕 I’m relieved I’m not the only one triggered by all the medical basesd evening soap operas. Just too much. It’s 100% a ok tho. Nothing says u gotta watch. You have enough processing happening in your beautiful brain girly. Don’t waste time on stress. Keep concentrating on anything that makes you feel safe, less pain, less anxiety, etc, you get the idea..... Sorry I know you didn’t ask for advice.....it’s a side effect of being a mum. Lol but I know you got one of those too. 😉💕 Keep on keeping on M🌹
Don't overdo anything that normally makes you sick....eat in moderation....live life to its fullest as long as you be careful & don't jump the gun so to speak....you are such a trooper! Look at everything you have to live with and you can still smile...it's A Okay to be frustrated....no one is perfect!!!
You are just so beautiful inside & out Mickey. Maisy is soooo precious. I sure miss my cat but anyway I'm actually terminally ill but 90% of the reason why is my own bad choices when I was young. I can't even imagine what you go thru sweetheart. I just wanted to tell you how beautiful you are. You are so blessed to have such a supportive family..I don't. I lost a great husband & we have a beautiful daughter. I'm going to die for choices I made. Yes I'm over twice your age but just know I think you're really darn cool sweetie!! xoxo
I know what you mean, my disability means I use more energy and it got worse as a teenager I am now forty. The joke for me is that my condition makes me look half my age and sometimes I feel 90 and have to stay in bed. I do long bits of bed rest too and I had to give up my PhD this year as my health got so bad. I am trying to focus on my blog and will be doing more TH-cam. You are one of my favourite TH-cam channels you are wise beyond your years I value what you do and also Amy lee too.
So glad you were able to have a tasty chocolate treat. I have tons of allergies myself so I feel you, I’m being tested for mass cell. I love how real you are about chronic illness and not hiding how it really is. A lot of people don’t understand that just because we look normal, they assume it’s not so bad. Don’t feel bad for sharing some of the down sides, it’s educating people on how these conditions really affect people.
Oh Em Jee Mickey!! Now THAT is seriously cool and I'm so so thrilled for you as a complete chocoholic❣️💕 Frustration, Paingry feelings, exhaustion, I do sleep all day, I do sedate myself as a pain management method as a way to ensure I don't increase my pain meds over time. Spend three days a week sleeping all day to facilitate any activity on the other days so I have not only (a) energy but more importantly (b) composure so I'm not unpleasant
Mickey you are a strong girl. We are all here for you. Keep fighting you are amazing. I deal with similar problems it was hard for me but i got use to it.
Mickey you are a savage lol. To be in that kind of pain and still be able to be so positive, and upbeat. You're the definition of beast mode. Lol. You are strong as anyone and a true inspiration. I hope the pain gets better.
I'm so happy that your allergies are doing better and you're able to enjoy a bit of chocolate.Chocolate makes life so much sweeter🍫 On a more serious note, don't be so hard on yourself you're dealing with a lot.. The struggles you face daily other people have no clue even if you tell them or vlog. I deal with a chronic illness too and it's rough & weighs you down. Your body will tell you when to rest. So do it, REST without STRESS and take care of YOU! You're AMAZING! God Bless You 😊💕✨
I have some frustrating health problems too and I really felt understood when you were talking about what “normal” or “healthy” 18 year olds do. It can get so old not being able to drive myself anywhere I need or want whenever I want, shower whenever I want, do laundry/clean whenever I want, or commit to hanging out with friends. I guess I don’t like relying on other people so much and wish for independence. If I’m being honest about secret thoughts I have, I feel like an enormous burden. Because I am. I’m a burden that my husband and other family are more than willing and even happy to take care of, but I still see the moments when I need something and someone has to change their plans to help me. I struggle with feeling guilty sometimes. And I know that’s bad! Just putting down some thoughts to maybe help others understand.
Also omg if you like Psych, you’ll probably like Chuck. It’s a fun tv show that’s easy to watch! Lighthearted humor but ya still got some drama, too. The Kindness Diaries on Netflix is a super positive and uplifting show I would def recommend as well. Always puts me in a good mood, even if I’m feeling down.
I’m starting a project in school to raise awareness for teens with Chronic Illness, And I’m feeling so discouraged that there’s barely any websites for it, thank you for bringing awareness with youtube
I’m glad your allergies are getting better Mickey!!! Also, I don’t have EDS (diagnosed- but I’m suspicious) but I feel the fatigue thing so hard! I get home from school/theater/whatever and just take a nap lol. Also, watch the chilling adventures of Sabrina on Netflix! Has a similar scary vibe that centers on teenagers, except it’s witches not demogorgons lol
I don't have EDS but I have the same problem with the exhausting feeling and you explained it how I always do is that your so tiered it hurts. It is a horrible feeling.
The haunting of hill house, hemlock grove, the get down, the chilling adventures of Sabrina, and maniac are all on Netflix and are all suuuuper good!! Maniac has Jonah Hill and Emma Stone in it and it's probably my favorite one on my list
I had my mom buy these puffs and LOVE them too! Super easy to drain, Gerber has tons of flavors they are called Lil’ Crunchies! Thanks for introducing them to me :)
Tv shows: If you have amazon or amazon prime, try oldies. My fave oldie right now is CHiPs. Just like that. I also love I love Lucy, Green Acres, the Andy Griffith show, and That Girl. Especially when I want to laugh or watch something light hearted.
While I thought seeing your dislocations was important and interesting for awareness, if it’s difficult for you to do, please don’t do it for the sake of us. Also, I totally understand the frustration of the exhaustion. I just recently got diagnosed with gastroparesis, and I’m really struggling too and it’s difficult because I’m 20 and in college and the exhaustion is so hard.
I would never purposely dislocate a joint to show anyone, that would be stupid 😂 haha but when I have to put them back anyways, its a good opportunity to film! So many people hear "30+ dislocations a day" their think that aren't as bad as normal dislocations. People also ask me all the time what it looks like, or how it feels. So its a great education and awareness option. Thank you for the concern and I think its important to remind people of this. If you have EDS never ever play with your joints, you will regret it!! And don't let doctors play with them either! I've had way to many orthos realize how bendy my joints are and go grab their colleague to come play too! Education - yes, Fun - no!
Mickey, I feel you about being tired! I have CRPS and Dystonia in both my lower legs and feet. I am in excruciating pain every second of every day. The excruciating pain and my medications make me soooo tired. I spend most of my days in bed. When I go out or have PT (every other week) I need to keep that in mind a few days before. Not do anything too much, or just rest all day. The summer is definitely better. I don’t have a winter depression, but my body has one. I am looking forward to summer, so I can go outside more. But being extremely tired stays all throughout the year. I don’t always go to bed early, but I am in bed all day, so the time does not matter to me. Often I even take an evening nap from 19.00 - 20.00 while I have already had a nap from 15.00 - 17.00. Also I often fall asleep multiple times a day. While I want to stay awake so bad. So I know the feeling, of feeling like an old person, or just a toddler / baby, who sleeps so much/early. This is definitely something you can just talk about even though you want to be positive. I am very positive myself, always! But it just sucks. Just like some other aspects of your and my diseases. So don’t feel bad. And yes, you talking about it is a part of the awareness! So don’t feel like you are not being positive. You just spread the message and explain what it is like to have EDS. As I do to people talking about such things of my diseases. I think it is a good think you talked about it. You weren’t complaining, just explaining, there is a huge difference between those two! Sending you love and energy (the little I have left). ❤️😘
I love how you keep it positive but I also love the honesty. Its totally ok in my book to hear the not so great sides of EDS. I am so happy that you can enjoy the tastes of some more things without having to be sick from it
Series suggestions: Anne With An E, Alexa And Katie, Grown-ish, One Day At A Time, Northern Rescue, Atypical, The Good Place, Good Girls, etc. If you're into architecture/engineering I highly recommend The World Most Extraordinary Homes! Sending endless hugs for you darling xx
Read the Handmaid's Tale! I don't know how I feel about the show (and it's definitely more "adult" than the book). The book is still hard to read, but I really liked it. I recommend it if you haven't read it yet!
You will find EDS throws things at you that least prepared for. Yes it’s not “the norm “ to be in bed at 8pm but like you said you need to rest majority of Eds people are tired just getting ready to start the day or just to do a simple task and their totally exhausted by end of it. Acceptance is a very very hard thing to do and that’s what your going through. You cannot worry about others thinks they don’t have to cope with a very serious chronic illness that effects every single thing in your life. It is what it is. You will have a social life but your still in test mode as to how your body reacts it takes time you can’t rush anything. You will find out all the answers as time goes by huge learning curve just keep going and if anything new happens write it down then take it to your next appointment self awareness is vital. Hope your day goes well you have to be real with chronic illness most Eds people vlog good and bad day anyway so don’t try to hide it your bad days as they can happen during vlogs if you get me. Like I said your doing way better than last year. Just carry on with your life to your best ability ☺️🙏🏾👍🏾❤️👊🏽🇬🇧
I feel you on feeling exhausted. I was just telling my husband how there is only so much I can do before I’m spent for the day. It really is rough, you are not alone.
Hi! I love your videos and you're part of the reason I'm going to be tested for gastroparesis soon. I've had a lot of other testing the past few months with no results and I'm eating small amounts and feeling very nauseous and all of the meds they gave me for IBS did nothing. You know a lot about EDS and gastroparesis in the extreme but do you know if you can have them in a less aggressive form? I've had chronic pain and injuries for the past 7 years but I've been able to stay athletic with great difficulty. I feel like I have EDS symptoms but only the mild ones and I can't find much info on EDS online about people with only milder symptoms (but still problematic). I'm hypermobile (not extreme though) and have a lot of back/joint issues that docs have never figured out. If there are any tips you have for dealing with frustrating doctors plz let me know! Thanks and I love watching your videos when I'm too nauseous to sleep :)
I totally know what you mean about getting ready for bed early and feeling like your bedtime and missing out. I start getting my feeding tube meds around 7pm too. I was like, “ I know what she means “ The HandsMaids Tale is very good. Very interesting but it kept my interest. The 100 is excellent. I just rewatched LOST for the 3rd time. Also rewatched Prison Break because they had a new season come out. That series is SO good. Not a normal prison show. It will touch your heart and keep you in suspense! I also really loved the vampire diaries and I’m not even really a vampire fan lol
Hugs kiddo! I’ve been right where you are! Even though they did, why are you better do it now if you want them to bother them all up and have a good one later. My mother said I was born tired and the fatigue we feel is honestly indescribable to anyone who has not experienced it. Cheetos makes puff corn. It’s like the baby treats but tastes even better and drains perfectly! Are you familiar with the histamine tyramine restricted diet used to Mastocytosis? If you’re not familiar with it or need help, let me know. I’d be glad to help!
I was trying to grow my side shave out, but the night sweats got to me😏..I guess I'll try again after summer. Vikings has been my go to show. Maybe I'm bias because it's my heritage🤷♀️
Pain is exhausting- it just takes SO much energy to deal with it that it leaves you fatigued even when you feel like you ‘didn’t do anything ‘ Sorry you have to deal with that - I know first hand how much it stinks.
Im glad u decided to share the hard parts too bc they are a part of everyones life!! We all love you so much!! You got this and we are all here for you no matter what!!! Also I totally get being so tired from just getting thru the day as well I have c.f. so some days my body totally rebels and it sucks! 💜🌹💜🌹💜🌹💜💜💜💜🌹💜🌹💜🌹💜🌹💜🌹💜🌹
I hear your frustrations and definitely don't blame you. Know that you are not alone, even if it might feel like it. Some TV show suggestions. Broadchurch and Lie to Me are some of my favorites. They are both detectives like shows that are very different from each other in feel.
Oooo definitely have to watch Station 19!!! (The spin off of grays anatomy) If you liked the Captain America/marvel movies you also should check out Agent Carter
You dont need no makeup. I mean it did do wonders in a matter of seconds in this video lol. But you're gorgeous and your smile is beyond beautiful and very contagious lol. KEEP SMILING. Glad you're able to eat more foods without issues. Have a great day.
You need to do what you need to do. I understand some of your frustration though. I have a form of dystonia and sometimes have muscle spasms all day. It is exhausting. Hang in there. Praying for you.
Jane the virgin Crazy ex girlfriend Haven Ncis Criminal minds Bones Riverdale Once upon a time The fosters New girl Girlfriends guide to divorce Good witch Hart of Dixie Life unexpected The magicians Grace and Frankie Lost girl Parenthood Greenhouse academy I don’t know what type of books you like to read but currently I’m super into the house of night series by PC Cast. Wicked easy reads. Also another book that’s great is the Nine Lives of Chloe king. The maximum ride series by James Patterson. The Kane chronicals and the hero’s of Olympus by Rick riordon are also good series. I love anything by Jennifer e Smith. Especially the statistical probability of love at first sight, hello goodbye and everything in between, this is what happy looks like and the geography of you and me. Sorry, I enjoy books and tv shows :)
You know what you should get a console and some games!( maybe even vr games) Not for TH-cam but for yourself, I’m not in the same situation as you but when I find myself down or depressed I like to escape in video games and it really works. My favorites are always the ones that tell a good story, almost like a book or a movie. Minecraft seems more your style cause you’re so chill and sweet, but there’s thousands of options!
Letting yourself go to bed because you need to is very grown up. Little kids fight sleep. Also, Jesus understands frustration (ie.: table-flipping in the temple, the disciples lack of faith- Luke 9:41). I like the show "Adam Ruins Everything" on Netflix and "Obsessions: Dark Desires" and "The Good Doctor" on Hulu. Btw. : Girl, your nails are so freakin' cute.
I'm so glad you are able to tolerate more foods. Chocolate is my favorite, but I have not been able to tolerate it without benedryl for most of my life due to stupid mast cell problems. I'm so exicited for you.
If this is too personal, you are free not to answer but I am curious. when you bathe or shower, do you have to cover up your stoma so water doesn't flo into it? It just seems that having an open wound would make washing oneself difficult. Thanks.
I just wanted to drop in and let you know that I have been watching your videos fo a while now. I've been really inspired by your honesty and your informative topics. I mentioned you in my recent video as one of my top two favorite EDS channels. Thanks a million for all that you do for the EDS community
Same tho on the sleep, I'm also 18 and absolutely hate how much time I spend in bed. I'm there almost the entire day, between pain and just. So. Damn. Tired. Even so exhausted I only manage to sleep by 2-7 in the morning, then people wake me up by 2 pm at the latest >.> I guess it feels less weird to be staying up all night, but spending almost all day in bed wishing I could either sleep or do something active is so frustrating some days.
I have also struggled hugely for several years with the extreme exhaustion by 6/7pm sometimes even earlier just by living daily life. I’m a mom of two (likely zebras) so I have to wait to get to bed until they’re fed, schoolwork is done and they’re in bed so I’m basically miserable until 8:30pm. Thankfully they’re getting older (8 & 10) and are much more helpful and understanding a lot of the time.
I'm right there with you. I have chronic illnesses as well. Not the same as yours but I understand how it feels to be kinda jipped out of normal stuff.
Love seeing you and your brother do the face mask that was cute. Sorry you are so frustrated. Maybe don't think of it as you have to go to bed early because of you EDS, maybe think of it as you need to rest for your job. Bare with me a minute to explain. Some people get up at 3 or 4 am to go to a job and work 8 hour, go home do house work then go to bed by 6 or 7 PM, just to get up and do it again. Think of your illness as a job. Your body works hard so you can take your medication, clean your room, socialize some with friends and family then its time to rest. You do more in a day then you think you do. Take care.
God only gives the hardest challenges to the people he knows can endure it. You're far from a failure. Through you and your strength you have touched so many lives for the better. You're gods angel on earth. I'm sure they have talked about it or whatever but do they give you extra vitamin b12?? Seems like it may help a bit with energy.
try the good doctor it takes place in the hospital but it's mostly about the main character and jow smart he is and how he deals with autism I really liked it so far but like I only wached 10 episodes so I can't fully judge it I love you strong girl 💕💕
Watch impractical jokers (so funny), Adam ruins everything, stranger things, the good doctor, Alexa and Katie, and switched at birth. Your dog is so cute btw
I'm so early!!! I have a question does you insurance pay for your drainage bags? We have been having a problem with getting insurance paying for drainage bags and Grip-loc and they are so expensive!!!!
Yes, my insurance pays for them. My GI doctor had to write a special prescription and then they agreed. They fought us at first. Keep fighting to get what you need!
@@LifewithStripes thank you so much. I will continue to fight with them. They seem to like to make me fight for everything. I am having to fight for a knee surgery tight now. They say it's not needed. Like I would agree to a surgery that wasn't really needed...
a lot of times, if you stay completely away from a food for a good period of time, you will lose your allergy to it. That's not to say it can't come back, but go slow.
Wow Mickey You came Far from 10k subs to 60k you go girl .Thanks for showing awareness for us R.I.P To all the fellow Zebras We lost #EdsAwarenessMonth
Crystal Carroll it’s a condition where the stomach is paralyzed and doesn’t empty when you eat. It caused nausea, vomiting, pain, reflux, distention, and more. People with severe gastroparesis receive nutrition via feeding tubes or central lines
I am 19 with CP and I go to bed super super early most nights to end it always makes me feel super embarrassed and nobody understand why but it’s not something I can explain my body is just too exhausted to do anything else but yet I feel weird because other people are still up
Handmaids tale is so good have you watched the fosters or vampire diaries or splitting up together or call the midwife or Nashville or young and hungry
You are so precious and beautiful love your hair love your personality and I'm not saying this just because of your situation. Sending Tons of love from a Kentucky grandma in my granddaughter Addison.💜💜💜💜XO
So for school i'm going to spread awareness because i have EDS so i asked all the people that i know and all my friends and on are lockers we are going to put a paper on are locker that say "Ehlers Danlos Syndrome Awareness month" with the zebra ribbon. (1 like= i should keep doing this)
YASSSSS!!! YOU GO GIRL!!! COUNT ME IN WITH WHATEVER I CAN DO!
I think I will do that too, I have ehlers danlose as well. I am kind of worried because a year ago I was dying from another illness and was severely malnourished, I would go to sleep wondering if I would ever wake up. And I had some hyper mobility issues with my ehlers danlose so I am more flexible then normal, like now I try running and my knee hurts and has to be popped back in same with my arms and hands when I play volleyball, and even when I pick up somthing that weighs nothing it pops my elbow out of joint. And with food some days it's ok but if I eat too much diary or sugar I get a tummy ache and feel really sick, and that's not eating much of it lol could you maybe give me some tips or share more about the type of ehlers danlose you have? And I am so sorry you are going through all this, you are definitely alot more positive than I have been. And i understand the energy drain lol does your heart rate go really high too? Just standing there?
The original version of Roswell
Absolutely keep it up darlin!!🌹
My heart rate goes up while standing. The doctors think I might have POTS which can go with EDS but I can’t do the test yet because I’m to young. But they do think I have something else which I forgot the name (sorry lol) but I am on medicine to help
I feel for you, sweetheart. 😑
I have leukemia, and constant pain. I have days where I literally spend about 22 hours of the day in bed. I have no energy and being up hurts, so I give in and sleep....and watch yt. Lol
The difference is, I'm old enough (plus some) to be your mom. I had my crazy days when I was young. At 18 (here in Canada) I was old enough to hang out at the bar and dance...
And boy, did I. Lol
So I got my crazy days in my youth...and I'm so sorry that you're being robbed of that.
You're so positive all of the time...but it's really not fair...and I think you're allowed to feel that way.
*Being sick SUCKS.*
I'm trying to pack to move, and my son is half way through his 4 years of uni to be a teacher.
There's still so much I want to do.
And when I feel sorry for myself, I watch your videos, and you remind me that I'm lucky. And we're still here, my dear.
You're an inspiration. ❤
This made my day. You are so sweet 😘
@@LifewithStripes .... Yay! You make mine *all* the time. Keep fighting, hunny!! 💕
Amen to watching her videos when I feel the going gets tough. And to see how beautifully and strongly she carries herself, it kinda gives me a reality check and I begin to look at things in a more positive light. Ive always wanted to tell her that but I didn't wanna be like..." I watch your videos to make myself feel better for the life I was given" but she truly shines a light for me.
I now understand EDS so much better than I did before. I now realize how bad it really is. I love how you ways try to stay so positive! I will be praying for you!❤️
Hart of Dixie is a really good happy show! Crazy Ex Girlfriend is really weird and funny but I love it anyway! I used to be the same with going to bed bc of my EDS and mono, which I had for LITERALLY a year (fun times).
Watch The 100! Season 6 just aired last week. It's on Netflix. There's a book series too, but most people like the show better (so do I!)
I love the 100 😍
What's your typical show?
30 Rock?
Serenity?
Suits?
White collar?
Ya, I watch a lot of TV and am happy to help. I hope your day goes better.
I'm lactose intolerant, but that is different than a dairy allgergy
And that's completely different to Mast Cell
I recommend criminal minds, the original charmed, NCIS, and supernatural.
We hear you hon. I’ve been wiped out and only been able to leave the house 4 times since March. That means only the most vital appts gone to and because I’m in a chair and my hubby works, I am at the mercy of the “special transit bus” 🚎. I miss having energy for my hubby and kids. I feel all my feels. My kitten just listens to me weep sometimes.
Hey remember 18 is not unusual to have not growth spurts as a female but brain growth spurts that do contribute to your exhaustion. It’s ok sweetheart. I think ifnot all of us, almost all of us can relate to the flares and chronic fatigue etc. I don’t have narcolepsy but it sure feels I do at times lol according to my spouse I’m like the kitty, fall asleep anywhere I can be comfy.💕
I’m relieved I’m not the only one triggered by all the medical basesd evening soap operas. Just too much. It’s 100% a ok tho. Nothing says u gotta watch. You have enough processing happening in your beautiful brain girly. Don’t waste time on stress. Keep concentrating on anything that makes you feel safe, less pain, less anxiety, etc, you get the idea.....
Sorry I know you didn’t ask for advice.....it’s a side effect of being a mum. Lol but I know you got one of those too. 😉💕
Keep on keeping on M🌹
Don't overdo anything that normally makes you sick....eat in moderation....live life to its fullest as long as you be careful & don't jump the gun so to speak....you are such a trooper! Look at everything you have to live with and you can still smile...it's A Okay to be frustrated....no one is perfect!!!
You are just so beautiful inside & out Mickey. Maisy is soooo precious. I sure miss my cat but anyway I'm actually terminally ill but 90% of the reason why is my own bad choices when I was young. I can't even imagine what you go thru sweetheart. I just wanted to tell you how beautiful you are. You are so blessed to have such a supportive family..I don't. I lost a great husband & we have a beautiful daughter. I'm going to die for choices I made. Yes I'm over twice your age but just know I think you're really darn cool sweetie!! xoxo
My 18 yo son with EDS and more is like you, early in bed but not necessarily asleep. Me who has EDS and more too has to push through and in bed by 9!
I know what you mean, my disability means I use more energy and it got worse as a teenager I am now forty. The joke for me is that my condition makes me look half my age and sometimes I feel 90 and have to stay in bed. I do long bits of bed rest too and I had to give up my PhD this year as my health got so bad. I am trying to focus on my blog and will be doing more TH-cam. You are one of my favourite TH-cam channels you are wise beyond your years I value what you do and also Amy lee too.
I so understand your frustrations, Mickey. I’ve been tired like that since my 20’s xxxxxxxxx
So glad you were able to have a tasty chocolate treat. I have tons of allergies myself so I feel you, I’m being tested for mass cell. I love how real you are about chronic illness and not hiding how it really is. A lot of people don’t understand that just because we look normal, they assume it’s not so bad. Don’t feel bad for sharing some of the down sides, it’s educating people on how these conditions really affect people.
Fatigue is not a fun feeling. Frustration with it is normal!
Oh Em Jee Mickey!!
Now THAT is seriously cool and I'm so so thrilled for you as a complete chocoholic❣️💕
Frustration, Paingry feelings, exhaustion, I do sleep all day, I do sedate myself as a pain management method as a way to ensure I don't increase my pain meds over time. Spend three days a week sleeping all day to facilitate any activity on the other days so I have not only (a) energy but more importantly (b) composure so I'm not unpleasant
Mickey you are a strong girl. We are all here for you. Keep fighting you are amazing. I deal with similar problems it was hard for me but i got use to it.
I dont understand how people can get used to severe pain. TEACH ME YOUR WAYS 😂
Mickey you are a savage lol. To be in that kind of pain and still be able to be so positive, and upbeat. You're the definition of beast mode. Lol. You are strong as anyone and a true inspiration. I hope the pain gets better.
I'm so happy that your allergies are doing better and you're able to enjoy a bit of chocolate.Chocolate makes life so much sweeter🍫 On a more serious note, don't be so hard on yourself you're dealing with a lot.. The struggles you face daily other people have no clue even if you tell them or vlog. I deal with a chronic illness too and it's rough & weighs you down. Your body will tell you when to rest. So do it, REST without STRESS and take care of YOU! You're AMAZING! God Bless You 😊💕✨
I have some frustrating health problems too and I really felt understood when you were talking about what “normal” or “healthy” 18 year olds do. It can get so old not being able to drive myself anywhere I need or want whenever I want, shower whenever I want, do laundry/clean whenever I want, or commit to hanging out with friends. I guess I don’t like relying on other people so much and wish for independence. If I’m being honest about secret thoughts I have, I feel like an enormous burden. Because I am. I’m a burden that my husband and other family are more than willing and even happy to take care of, but I still see the moments when I need something and someone has to change their plans to help me. I struggle with feeling guilty sometimes. And I know that’s bad! Just putting down some thoughts to maybe help others understand.
Also omg if you like Psych, you’ll probably like Chuck. It’s a fun tv show that’s easy to watch! Lighthearted humor but ya still got some drama, too. The Kindness Diaries on Netflix is a super positive and uplifting show I would def recommend as well. Always puts me in a good mood, even if I’m feeling down.
I’m starting a project in school to raise awareness for teens with Chronic Illness, And I’m feeling so discouraged that there’s barely any websites for it, thank you for bringing awareness with youtube
I’m glad your allergies are getting better Mickey!!! Also, I don’t have EDS (diagnosed- but I’m suspicious) but I feel the fatigue thing so hard! I get home from school/theater/whatever and just take a nap lol. Also, watch the chilling adventures of Sabrina on Netflix! Has a similar scary vibe that centers on teenagers, except it’s witches not demogorgons lol
I don't have EDS but I have the same problem with the exhausting feeling and you explained it how I always do is that your so tiered it hurts. It is a horrible feeling.
The haunting of hill house, hemlock grove, the get down, the chilling adventures of Sabrina, and maniac are all on Netflix and are all suuuuper good!! Maniac has Jonah Hill and Emma Stone in it and it's probably my favorite one on my list
I'm a big fan of BBC Merlin! I recommend it if you're into fantasy/medieval/magic!
i completely understand but please don’t beat yourself down love. i know it’s hard to deal with every single day but just keep on pushing.
I had my mom buy these puffs and LOVE them too! Super easy to drain, Gerber has tons of flavors they are called Lil’ Crunchies! Thanks for introducing them to me :)
Tv shows:
If you have amazon or amazon prime, try oldies. My fave oldie right now is CHiPs. Just like that. I also love I love Lucy, Green Acres, the Andy Griffith show, and That Girl. Especially when I want to laugh or watch something light hearted.
Also Little house on the Prairie.
I am 41 and I have been going to bed between 4pm and 6pm for the last 20 years. So you aren't alone in the exhaustion.
While I thought seeing your dislocations was important and interesting for awareness, if it’s difficult for you to do, please don’t do it for the sake of us. Also, I totally understand the frustration of the exhaustion. I just recently got diagnosed with gastroparesis, and I’m really struggling too and it’s difficult because I’m 20 and in college and the exhaustion is so hard.
I would never purposely dislocate a joint to show anyone, that would be stupid 😂 haha but when I have to put them back anyways, its a good opportunity to film! So many people hear "30+ dislocations a day" their think that aren't as bad as normal dislocations. People also ask me all the time what it looks like, or how it feels. So its a great education and awareness option. Thank you for the concern and I think its important to remind people of this. If you have EDS never ever play with your joints, you will regret it!! And don't let doctors play with them either! I've had way to many orthos realize how bendy my joints are and go grab their colleague to come play too! Education - yes, Fun - no!
Mickey, I feel you about being tired! I have CRPS and Dystonia in both my lower legs and feet. I am in excruciating pain every second of every day. The excruciating pain and my medications make me soooo tired. I spend most of my days in bed. When I go out or have PT (every other week) I need to keep that in mind a few days before. Not do anything too much, or just rest all day. The summer is definitely better. I don’t have a winter depression, but my body has one. I am looking forward to summer, so I can go outside more. But being extremely tired stays all throughout the year. I don’t always go to bed early, but I am in bed all day, so the time does not matter to me. Often I even take an evening nap from 19.00 - 20.00 while I have already had a nap from 15.00 - 17.00. Also I often fall asleep multiple times a day. While I want to stay awake so bad. So I know the feeling, of feeling like an old person, or just a toddler / baby, who sleeps so much/early. This is definitely something you can just talk about even though you want to be positive. I am very positive myself, always! But it just sucks. Just like some other aspects of your and my diseases. So don’t feel bad. And yes, you talking about it is a part of the awareness! So don’t feel like you are not being positive. You just spread the message and explain what it is like to have EDS. As I do to people talking about such things of my diseases. I think it is a good think you talked about it. You weren’t complaining, just explaining, there is a huge difference between those two! Sending you love and energy (the little I have left). ❤️😘
I love how you keep it positive but I also love the honesty. Its totally ok in my book to hear the not so great sides of EDS. I am so happy that you can enjoy the tastes of some more things without having to be sick from it
Series suggestions: Anne With An E, Alexa And Katie, Grown-ish, One Day At A Time, Northern Rescue, Atypical, The Good Place, Good Girls, etc. If you're into architecture/engineering I highly recommend The World Most Extraordinary Homes! Sending endless hugs for you darling xx
Read the Handmaid's Tale! I don't know how I feel about the show (and it's definitely more "adult" than the book). The book is still hard to read, but I really liked it. I recommend it if you haven't read it yet!
Deffo have a watch of handmaids tale. Its a little dark and dystopiam but incredibly acted and the story is amazing
I have the same pajama pants! They’re my favorites!
You will find EDS throws things at you that least prepared for. Yes it’s not “the norm “ to be in bed at 8pm but like you said you need to rest majority of Eds people are tired just getting ready to start the day or just to do a simple task and their totally exhausted by end of it. Acceptance is a very very hard thing to do and that’s what your going through. You cannot worry about others thinks they don’t have to cope with a very serious chronic illness that effects every single thing in your life.
It is what it is. You will have a social life but your still in test mode as to how your body reacts it takes time you can’t rush anything. You will find out all the answers as time goes by huge learning curve just keep going and if anything new happens write it down then take it to your next appointment self awareness is vital. Hope your day goes well you have to be real with chronic illness most Eds people vlog good and bad day anyway so don’t try to hide it your bad days as they can happen during vlogs if you get me. Like I said your doing way better than last year. Just carry on with your life to your best ability ☺️🙏🏾👍🏾❤️👊🏽🇬🇧
I feel you on feeling exhausted. I was just telling my husband how there is only so much I can do before I’m spent for the day. It really is rough, you are not alone.
Hi! I love your videos and you're part of the reason I'm going to be tested for gastroparesis soon. I've had a lot of other testing the past few months with no results and I'm eating small amounts and feeling very nauseous and all of the meds they gave me for IBS did nothing. You know a lot about EDS and gastroparesis in the extreme but do you know if you can have them in a less aggressive form? I've had chronic pain and injuries for the past 7 years but I've been able to stay athletic with great difficulty. I feel like I have EDS symptoms but only the mild ones and I can't find much info on EDS online about people with only milder symptoms (but still problematic). I'm hypermobile (not extreme though) and have a lot of back/joint issues that docs have never figured out. If there are any tips you have for dealing with frustrating doctors plz let me know! Thanks and I love watching your videos when I'm too nauseous to sleep :)
I totally know what you mean about getting ready for bed early and feeling like your bedtime and missing out. I start getting my feeding tube meds around 7pm too. I was like, “ I know what she means “
The HandsMaids Tale is very good. Very interesting but it kept my interest.
The 100 is excellent. I just rewatched LOST for the 3rd time. Also rewatched Prison Break because they had a new season come out. That series is SO good. Not a normal prison show. It will touch your heart and keep you in suspense!
I also really loved the vampire diaries and I’m not even really a vampire fan lol
I love Brooklyn 99 and The Good Place! They’re like the only thing that make me laugh when I’m in pain
Hugs kiddo! I’ve been right where you are! Even though they did, why are you better do it now if you want them to bother them all up and have a good one later. My mother said I was born tired and the fatigue we feel is honestly indescribable to anyone who has not experienced it. Cheetos makes puff corn. It’s like the baby treats but tastes even better and drains perfectly! Are you familiar with the histamine tyramine restricted diet used to Mastocytosis? If you’re not familiar with it or need help, let me know. I’d be glad to help!
I was trying to grow my side shave out, but the night sweats got to me😏..I guess I'll try again after summer. Vikings has been my go to show. Maybe I'm bias because it's my heritage🤷♀️
Pain is exhausting- it just takes SO much energy to deal with it that it leaves you fatigued even when you feel like you ‘didn’t do anything ‘ Sorry you have to deal with that - I know first hand how much it stinks.
May the Lord give you what you stand in need of!🙏🏼💗 Psych! #1 I know it by memory! All the episodes! Check out Missing 411 here in TH-cam
Im glad u decided to share the hard parts too bc they are a part of everyones life!! We all love you so much!! You got this and we are all here for you no matter what!!!
Also I totally get being so tired from just getting thru the day as well I have c.f. so some days my body totally rebels and it sucks!
💜🌹💜🌹💜🌹💜💜💜💜🌹💜🌹💜🌹💜🌹💜🌹💜🌹
Impractical jokers always lifts my mood. Plus it's on TV all day lol.
I hear your frustrations and definitely don't blame you. Know that you are not alone, even if it might feel like it. Some TV show suggestions. Broadchurch and Lie to Me are some of my favorites. They are both detectives like shows that are very different from each other in feel.
Oooo definitely have to watch Station 19!!! (The spin off of grays anatomy)
If you liked the Captain America/marvel movies you also should check out Agent Carter
ngawww ur dog feels ur pain and trustration
You dont need no makeup. I mean it did do wonders in a matter of seconds in this video lol. But you're gorgeous and your smile is beyond beautiful and very contagious lol. KEEP SMILING. Glad you're able to eat more foods without issues. Have a great day.
Fun brother. That is so cool. Try the vampire Diaries then originals and then the Legacies. These 3 go in order.
You need to do what you need to do. I understand some of your frustration though. I have a form of dystonia and sometimes have muscle spasms all day. It is exhausting. Hang in there. Praying for you.
I know how you feel about the bed thing. I feel like someway because of my chronic illnesses the day life is sometimes just to much to deal with it.
Loving the vlogs
I like rewatching Gilmore Girls over and over and over.
Jane the virgin
Crazy ex girlfriend
Haven
Ncis
Criminal minds
Bones
Riverdale
Once upon a time
The fosters
New girl
Girlfriends guide to divorce
Good witch
Hart of Dixie
Life unexpected
The magicians
Grace and Frankie
Lost girl
Parenthood
Greenhouse academy
I don’t know what type of books you like to read but currently I’m super into the house of night series by PC Cast. Wicked easy reads. Also another book that’s great is the Nine Lives of Chloe king. The maximum ride series by James Patterson. The Kane chronicals and the hero’s of Olympus by Rick riordon are also good series. I love anything by Jennifer e Smith. Especially the statistical probability of love at first sight, hello goodbye and everything in between, this is what happy looks like and the geography of you and me.
Sorry, I enjoy books and tv shows :)
You know what you should get a console and some games!( maybe even vr games) Not for TH-cam but for yourself, I’m not in the same situation as you but when I find myself down or depressed I like to escape in video games and it really works. My favorites are always the ones that tell a good story, almost like a book or a movie. Minecraft seems more your style cause you’re so chill and sweet, but there’s thousands of options!
Letting yourself go to bed because you need to is very grown up. Little kids fight sleep. Also, Jesus understands frustration (ie.: table-flipping in the temple, the disciples lack of faith- Luke 9:41). I like the show "Adam Ruins Everything" on Netflix and "Obsessions: Dark Desires" and "The Good Doctor" on Hulu. Btw. : Girl, your nails are so freakin' cute.
I am 38 and I go to bed at 7 because of chronic pain plus doing university homework 📚 wears me out like spent
I'm so glad you are able to tolerate more foods. Chocolate is my favorite, but I have not been able to tolerate it without benedryl for most of my life due to stupid mast cell problems. I'm so exicited for you.
If this is too personal, you are free not to answer but I am curious. when you bathe or shower, do you have to cover up your stoma so water doesn't flo into it? It just seems that having an open wound would make washing oneself difficult. Thanks.
There's always House M.D.!
I just wanted to drop in and let you know that I have been watching your videos fo a while now. I've been really inspired by your honesty and your informative topics. I mentioned you in my recent video as one of my top two favorite EDS channels. Thanks a million for all that you do for the EDS community
A Series of Unfortunate Events is a good series
Some great tv shows I watch on Netflix are "The 100", "4400" and "Shadowhunters".
Same tho on the sleep, I'm also 18 and absolutely hate how much time I spend in bed. I'm there almost the entire day, between pain and just. So. Damn. Tired. Even so exhausted I only manage to sleep by 2-7 in the morning, then people wake me up by 2 pm at the latest >.>
I guess it feels less weird to be staying up all night, but spending almost all day in bed wishing I could either sleep or do something active is so frustrating some days.
I totally understand. Hugs
I have also struggled hugely for several years with the extreme exhaustion by 6/7pm sometimes even earlier just by living daily life. I’m a mom of two (likely zebras) so I have to wait to get to bed until they’re fed, schoolwork is done and they’re in bed so I’m basically miserable until 8:30pm. Thankfully they’re getting older (8 & 10) and are much more helpful and understanding a lot of the time.
I'm right there with you. I have chronic illnesses as well. Not the same as yours but I understand how it feels to be kinda jipped out of normal stuff.
Love seeing you and your brother do the face mask that was cute. Sorry you are so frustrated. Maybe don't think of it as you have to go to bed early because of you EDS, maybe think of it as you need to rest for your job. Bare with me a minute to explain. Some people get up at 3 or 4 am to go to a job and work 8 hour, go home do house work then go to bed by 6 or 7 PM, just to get up and do it again. Think of your illness as a job. Your body works hard so you can take your medication, clean your room, socialize some with friends and family then its time to rest. You do more in a day then you think you do. Take care.
God only gives the hardest challenges to the people he knows can endure it. You're far from a failure. Through you and your strength you have touched so many lives for the better. You're gods angel on earth. I'm sure they have talked about it or whatever but do they give you extra vitamin b12?? Seems like it may help a bit with energy.
Hey, i watched alot of your vids cuz i have eds to and you really helped me understand more i thank you for that ❤
try the good doctor it takes place in the hospital but it's mostly about the main character and jow smart he is and how he deals with autism I really liked it so far but like I only wached 10 episodes so I can't fully judge it I love you strong girl 💕💕
The umbrella academy on hulu is weird but super good
I totally get the exhausted thing. Its mind numbing.
Are you still training a service dog?
Supernatural is on Netflix and it's one of my favorite shows. It's really long (just ended it's 14th season) but its a really good show!
Watch impractical jokers (so funny), Adam ruins everything, stranger things, the good doctor, Alexa and Katie, and switched at birth. Your dog is so cute btw
I like chrisley knows best lol, law and order svu, street outlaws, moonshiners, locked up abroad, river monsters.
Tip for hiccups, eat a spoonful of peanut butter!!! It works I swear by it
Just hold your breath.
I understand how you feel
I'm so early!!! I have a question does you insurance pay for your drainage bags? We have been having a problem with getting insurance paying for drainage bags and Grip-loc and they are so expensive!!!!
Yes, my insurance pays for them. My GI doctor had to write a special prescription and then they agreed. They fought us at first. Keep fighting to get what you need!
@@LifewithStripes thank you so much. I will continue to fight with them. They seem to like to make me fight for everything. I am having to fight for a knee surgery tight now. They say it's not needed. Like I would agree to a surgery that wasn't really needed...
What a good fun brother!!!!!
a lot of times, if you stay completely away from a food for a good period of time, you will lose your allergy to it. That's not to say it can't come back, but go slow.
Friends is a really good show
One thing to say. Gotta love mirrors :D LOL!!!!
Wow Mickey You came Far from 10k subs to 60k you go girl .Thanks for showing awareness for us
R.I.P To all the fellow Zebras We lost
#EdsAwarenessMonth
Law and order svu is really good. Nurse Jackie is my favorite but it takes place in a hospital.
21 and I feel the same way
Hey Mickey I am new to your channel and I am just wondering why you don’t eat any food by mouth. What is gastroproisis? Not sure if I spelled it right
Crystal Carroll it’s a condition where the stomach is paralyzed and doesn’t empty when you eat. It caused nausea, vomiting, pain, reflux, distention, and more. People with severe gastroparesis receive nutrition via feeding tubes or central lines
I am 19 with CP and I go to bed super super early most nights to end it always makes me feel super embarrassed and nobody understand why but it’s not something I can explain my body is just too exhausted to do anything else but yet I feel weird because other people are still up
I feel you! We may have different conditions but I can definitely relate to that part!!!!!
Your puppy is so adorable!!! I love your channel!!
😂 the hElLo got me
Omg greys is a one I rewatch a ton!!
Riverdale. Glee. one tree hill
Handmaids tale is so good have you watched the fosters or vampire diaries or splitting up together or call the midwife or Nashville or young and hungry
Two tv shows I would recommend are Bones and NCIS: Los Angeles
Alex Hunt the OG NCIS is better thoughhhhh. And criminal minds is amazing too
Prayer for you May God Bless you today and Everyday
You are so precious and beautiful love your hair love your personality and I'm not saying this just because of your situation. Sending Tons of love from a Kentucky grandma in my granddaughter Addison.💜💜💜💜XO
Nurse Jackie on Netflix is a mature show but really good!
M*A*S*H, Shark Tank, Archer, The Blacklist, NCIS, Criminal Minds, Chicago Fire, Chicago PD, Chicago Med, Bull, House and The Good Doctor