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Great video with great tips, as always! 🥰

I have fallen in love with you madam.💘💘💘💘💘💘💘💘💘💘💘.Respect from Bangalore.

I also went to a concert recently and had such a great time because for a couple of hours I kind of forgot about my chronic illnesses and anxiety and almost felt like how I used to feel. For a little while I didn't feel like a 50 year old woman with secondary progressive multiple sclerosis. But then the concert ended and we had to walk to the car 😂 and that was rough!!!

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I LOVE this video! What beautiful reflections! Thank God/ the universe/ nature/ whoever lol for these walking angels!! ❤

Just an interesting point you were making about people in the ER being seen in order of arrival. Here in Canada is based in order of urgency, so even if you were the last person to arrive if you are showing this much abdominal pain you would definitely be seen before let’s say the kid burn in the arm, even though it was a child. You could be having an appendicitis that could burst any moment, so they see you here pretty quickly for that. Unless there is a bunch of trauma patients coming in by ambulance. Then you are in bad luck.

Loved this video. ❤ so heartfelt

I have gastroparesis and intestinal dysmotility, which can mimic IBS or IBD. Due to my issue being digestive motility, the prokinetic Mestinon (Pyridostigmine) fixed me. It's nice when an older medication can be repurposed to treat additional medical conditions, since older medications cost much less than newer ones.

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Love the sarcasm! These are great responses. You give the best advice. :)

Excellent conversation as always! I agree - there is NOTHING i want more than to be able to hold down a normal full-time job longterm just like everyone else. People are so ignorant, its actually insane.

Booking site link: tr.ee/n3YXIDE3dv

This was such an EXCELLENT video, Caroline! You really explained everything so well. I hope others without chronic illness watch this and develop some understanding and compassion for everyone who is in this situation. Keep spreading the word! 🥰

I’m sorry you are feeling that way. It sounds like depression is making another appearance. Maybe your meds are not working as well as before. Don’t think that just because you are taking them you are protected. You might need to adjust your dosage or maybe even switch meds. You should definitely talk to your doctor. Fatigue and exhaustion is very common with depression.

It’s interesting how where you live there are those kinds of support to find out how much and what kind of work you can do. Here we find out by applying and getting fired. lol!! The biggest issue for me regarding work is that I am unreliable. My symptoms fluctuate too much to be able to commit to a certain day and time. If I had a task and had let’s say a window of a week or ten days to complete it would be more doable. I still haven’t found a job that provides that kind of flexibility. I’m glad you found something that works for you and that you get supplemental income.

I booked Feb 17!

My biggest advice is to help people gain knowledge about their chronic illnesses. Unfortunately doctors (even good ones) haven’t been educated on our illnesses and know close to nothing about them. If they’ve been taught anything, it’s probably not true. They often rely on our knowledge and experiences to learn about our illnesses so that they can help others. This is the case for my doctors, unfortunately they haven’t been taught and want to learn. We shouldn’t have to research and learn everything about our illnesses ourselves, that’s our doctor’s job, but that’s the reality for now. At least we can educate those who want to listen and they can add their knowledge about medications and other possible treatments. It requires teamwork between you and your doctor. Another reason to be educated on your illnesses is when you are gaslighted into being told your illness is fake or not serious. I have severe ME/CFS and many call it “yuppie flu” they think people with ME/CFS just are a little tired and need to try harder to get better. Having knowledge about your illness can counteract their false accusations and facts and prove to them that you know what you’re talking about, whether this is gaslighting from doctors, family members, or people you know.

Beautifully stated! This is something so many people need help with! I know I could have used your help back when I was seeking a diagnosis. I took me years of trial and error. I could have potentially gotten answers faster and with less medical trauma if I had your help back then! Thank-you for doing this for others!

To fight my medical gaslighting, I completely switched medical facilities to a place that didn't have my records. Then I obtained all of my records from my previous doctors, since that's free to do in the USA. Then I went through and weeded out all of the garbage and gave my new doctors the records I wanted them to have. Then I directed my care with the new doctors, bluffing that my previous doctors had planned to check this and that, or try a certain medication, and I finally received the care I needed. There were also bad medications that I never wanted to be on, due to some bad reactions. I had them all added to my drug allergies list, since that list is also for drug reactions. I typed that list up, grouped by drug class (I have five beta blockers on it!) and I give that to all of my doctors now. I also give them an organized list of my current medications and doses and purposes of each one.

Being born with Ehlers Danlos syndrome, and with doctors being so unfamiliar with it, I was gaslit until I was finally diagnosed properly at age 38. The doctors thought my pain, POTS, hypermobile joints, fatigue, gastrointestinal problems, etc. were all separate health issues, when they were all signs of Ehlers Danlos syndrome the entire time.

Oh wow. This is what I expected when I got sick. But I've been terribly ill since 2018 and, in the USA, it takes ten years on average to get a diagnosis. A nurse laughed at me when I once, in the ER, asked "But can't you admit me and take tests and then find out what's wrong? Isn't that was hospitals are for?" Then, talking me as as if I had no sense at all said, "No, they are for getting procedures done. And you are not eligible for admission because you're not dying." I was dying though. I didn't die. But I don't get any care. And I have insurance. The USA is nothing of what the propaganda has been lying about for the last.... forever. The horrors here... I'm almost jealous that I can relate to your trauma but, in my experience, there was no help or testing. They just said I was lying and it was normal and leave them alone. Once, "the hospital is bursting at the sames you may as well just gone home" was the response I appreciated most. It helped me spend the least time in a horribly painful waiting room. The chairs are so painful, you can't lay down, and everyone is crammed together like sardines.

Sounds like you found the perfect job for you!!

Thankyou for this video, Caroline. This was the BEST advice and so beautifully stated. I'm so happy for you that you found something unexpected that you absolutely love! Thats so awesome and it helps give others hope!

Definitely agree with you that people who have actually been hurt or who are ill rarely complain or seek attention, if anything they hide it. I will say that being a Christian and being chronically ill I think you could say I’m a victim of illness. In a worldly sense I’m a victim but when it comes down to the sovereignty of God and His plans nothing is an accident and something like my illness that He ordained to put into my life isn’t necessarily a bad thing. I’m not a victim of God is what I’m trying to say. Definitely an interesting topic and thing to think about. A very creative and interesting video, keep it up!❤

Love from india ❤

I love your perspective on this and I agree! Setting intentions in place of goals feels so freeing. :) Good luck with your intentions this year! I feel you with getting out into nature more this year. Always a great intention! Happy 2024!

I am so grateful to you for helping other ill people especially during this season. And thank you for not holding your genuine feelings back. You really are such a compassionate person. I hope that your kindness for others will come back around to help you in the future. Thank you!

Nice

Are you taking Clonidine to treat both ADHD and POTS? It's a great one to treat both, but it can cause dry mouth. Its sister drug, Guanfacine, can treat ADHD and POTS with fewer side effects.

The medication I take for intestinal/bowel issues and POTS (Mestinon/Pyridostigmine) has a side effect of causing excess saliva production. In my case with dry mouth, this side effect is a benefit.

I haven't really celebrated Christmas since 2004, and that was only because I was dating someone who did. Thanks for sharing this, since I feel less alone with not celebrating.

My birthday was earlier this week, and all I did was get the free stuff that restaurants give for birthdays. I don't like to be reminded of another year going by without being able to have a "normal" life.

I look at my unfinished projects from years gone by and objects related to things I can no longer do, and think to myself, "These are the belongings of someone who is dead." I keep those objects as mementos of an old friend who is no longer with me.

Intestinal inflammation often causes acne breakouts. I read that in some studies, and it makes sense from personal experience.

Colonoscopies are horrible. The prep always got rid of my cramps and bloating from intestinal dysmotility, though. Thankfully after my last colonoscopy, they started me on Mestinon (Pyridostigmine) as a prokinetic to get rid of the intestinal dysmotility and the rest of my digestive issues. It also treats POTS.

Whatever the chronic illness, "but you don"t look ill" is a good indicator of low IQ and/or problematic lack of empathy

I have found some fantastic alcohol free wines in my local grocery store. I don’t drink very often anymore because I am slightly allergic to it but I have to say I really miss it. If I drink it I know I will pay the price and so it already takes the desire away most of the time.

Your breakfast sounds so good! I love slow and simple mornings. :) i definitely don't miss the go-go-go rush-out-the-door mornings I used to have before I got sick. Never going back to that. Even now that I work early some mornings, I always give myself time to wake up and get ready slowly so I'm not stressed.

Your first sentence, I completely feel the same way!