Відео

Thanks for sharing. Love the bookcase behind you. I’ve enjoyed reading all my life until Lewy Body Dementia took over. I hope you are doing well 👍

I experience gaslighting even with the diagnosis and now they will take the only meds that help away , he barely listen to me. And labels me as addict and assumes i get a kick from the medications. He will put me back into disability. I have an 11 year old son and i need to function. Ist as if he is working against me in every way possible. When i come from him i feel suicidal. I can't build two medication at the same time. I was so happy i was finally able to build down the benzodiazepinen and have back up medication's. Now he's wants to take it both away in a rush. Why he don't give me the time. i feel labeled and not taken seriously at all. He only see drug addict and did is only because they never gave me a decent treatment. If i had a good treatment from the start i would not even need to build down the benzodiazepinen. Morphine is the backup meds. I just want the build down there benzodiazepinen after 7 years wich is hard enough. But i do know without the back up from morphine the benzodiazepinen will go up and i desperately want off them 😢

So true. So true. Your such an inspiration 👍🤩

Guess you don’t post on UA-cam any longer ? Hope all is well. Wonderful book 👍

Long E on Tolle thanks so much for sharing

My neuro is placing me on these for my migraines I have daily and that wake me up in the night I have brain dmange, lesions, tbi and other brian conditions. Yesterday he gave me the first two in the office to get me by while we go through my insurance to get it. Crosisng my finger I can get it and that it works. My migraines are so bad I vomit and stuff too and can’t sleep and they have sent me into epileptic seizures many times. So let’s hope I can get it and it helps. He also is having me in ubrelvy as need for the breakthrough ones I may have with the injection. Idk if u have this. Hopefully it goes through insurance too . The injection did hurt pretty good he did in my arm . Hopefully it gets easier. Thank u for ur video. I know it’s old video. Hope it has helped u

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I have CP but also chronic lumbago. Getting my first Wheelchair in 2008 was the best thing and I was just happy. It meant freedom and pain relief and it still does.

Just got diagnosed with hsd. I felt like the doctor who gave me the diagnosis finaly understanded me. But then again when i did have phone call with my regular doctor she continued the same matra that everything is ok and it's normal to have have hypermobility. It's funny that my physiatrist just told me before that my shoulder has got so many dislocations that there is propably some damage already done.

It really is the little things sometimes. I have the same weekly medication sorter and it just made me crack a smile on a hard day. Thanks ❤

❤Absolutely both physical and mental health impact each other ❤️ Great advice here for boundary setting for security and trust circles

I’m getting my wheelchair delivered today and I’m just looking up all the videos that I can. This was super informative because I am getting my chair delivered with that company.

I hope the chair gives you freedom to explore outdoors and get back out into the world more. Ease of mobility!! Mixed emotions I'm sure but with time I hope you find a lot of value in it.

I sadly recognize the pride part about using the chair😅

Such a nice intro video 🎉

The hardest thing for me to buy and accept was a rolling walker. Then I had to buy a wheelchair I was afraid ppl would stare at me. With my cane. Walker or wheelchair people are unreal to cut me off and walk right in front of me. No respect or manners. Tired of dealing with my insurance so I bought it myself. My Lewy Body Dementia has my balance off very bad so my objective is NOT to fall. Thank you for your story. I was disappointed and mad too but one day at a time. Thanks for the updates.

Excellent book a great read and help for individuals

I have that book. Thank you 👍👍

It’s such an inspiration to listen to you. I have Lewy Body Dementia and most of time in a wheelchair. My hallucinations are awful. Visual and auditory. Thank you for sharing your story

Wonderful color. I love it. Be proud. I know you are 🎉

I’m picking mine up at 8:30 this morning. NuMotion has been very helpful in getting exactly what I need for my EDS Hyper-mobility. I will also have a smart drive, I have a very old very terrible fitting Invacare chair that I’m so happy to get rid of. Quickie Nitrum will be an upgrade for sure.

I've had a rheumatologist shrug his shoulders and roll his eyes at me. I also had to diagnose my EDS - thank god for the internet! I'm now waiting to see an EDS consultants at one of only 2 specialist hospitals in the UK . I'm 46.

Lots of great advice! Unfortunately where I live in Canada, you just can't doctor shop. Here, if you have a GP (family doctor), no matter how bad of a fit they are, you have to keep them. We have such a severe shortage of doctors here that we will never find a new one. And I'm not exaggerating. It's actually extremely depressing.

I have the same chair from NuMotion, but with a Smart Drive/. Mine is metallic blue!

I was diagnosed with Ehlers Danlos last year. I am fifty two now, and I had no clue I had this problem. I also have dealt with medical gas lighting.

Are they fiction or nonfiction?

It is a AMAZING how physicians can admit “oh yeah, that makes sense… but not for you”

Excellent resources to help!!

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I've no idea why this has not had the views or likes. Love this. Hope you're OK. It's a constant struggle. The irony is I did not believe depression was real. I'm now suffering with depression and fully understand living with a chronic illness. My love and prayers I send to all those having to exist in a state of pain, fatique and human ignorance. Love and blessings. Xx

Thank you!! Currently dealing with this issue. I have lost a great deal of hand mobility waiting for a specialist. I'm in Canada, so shopping around for a doc isn't possible here really.

This is a really good idea about presenting concerns and asking the provider to write down the concerns and what hasn’t been addressed. I’m fortunate to have affordable health insurance but unfortunate to have crummy health insurance. I asked the hospital to switch my provider because i was feeling i was being medically gaslit but was matched with an equally uncaring provider. Lol.

Is that chair a TiLite Aero Z? I wish I knew it came in that color, I ordered mine in gray frame with green forks. I love mine but I love green. Nice chair.

My Chair is from Meyra with the e motion m25 duodrive from Alber

aint no way boi LOLLLL

I got my EDS diagnosis at age 64. All the years before I heard things like „such sorts of pain as you are describing do not exist“, „housewife-syndrome“, „In my first years at Medical School I also thaught I had all these diseases I was learning about“. Or they questioned me about my relations with my parents. And so on… As everyone else I had challenges and issues in my life and sometimes I wondered whether I was the only person who could not see the connection between my psychological strain and all my pop-up symptoms. Even after my diagnosis had been confirmed by several experts, a pain therapist at university hospital blamed me for seeking somatic explanations for my pain and accused me of depreciating her when I explicitly disagreed. Thank you very much for sharing your experience here and for suggesting a way to cope with medical gaslighting.

I’m recently diagnosed and have been watching a plethora of videos to learn about it. You’re the best I’ve seen. PLEASE COME BACK!!

I’m proud of you. Thanks for sharing. I had such a difficult time with mine, especially when they gave me the pre filled syringes instead of the pen. That was difficult in more ways than physical.

Can’t wait for my own so 11 weeks, other chair is not ergonomic and is not you… know what I mean

IS THERE anything to do in rush?

3:22 lol, I do that with my ankles, too. No calf strap?

Hi, do you know what height the backrest is on this chair?

This made me ball. I don't know if it's gaslighting myself or just the idea of actually being disabled. I keep trying to find ways to keep working even though I've been disabled for 9 yrs. It's so frustrating having the mental capacity to do things but being physically destroyed once you try.

Look good i wait for my New too but my Chair is from meyra

Thank you for eliquinting explaining this. Both myself and my son have experienced this before with my sons father as well as some medical professionals. We of course never went back to the medical professionals who treated us that way but unfortunately his father is not someone we can just brush off. Im not sure how to deal with his father's behavior.

Lmao he has the exact voice of the counselor from South Park

I am newly in a wheelchair- first pushed then bought an electric wheelchair to gain more independence. I have metastatic breast cancer in the bones causing pain, limited walking or standing for even short periods (5-6 minutes). My disability is pain and limited lung capacity secondary to damage from many radiation treatments ( 187 to date) most to the chest. Due to my age (70) I don’t get much push back, in fact most people are helpful. Manual wheelchairs can have little battery powered engines added- this might help many. My wheelchair can be turned off and pushed too.

the internet is a crazy place. i just put in eds and dissociation into google, because i thought i couldn't be the only one. thank you for this video. the last few days, i was wondering whether i was experiencing pain and movement impairment from eds or from dissociative mobility issues. sometimes i cannot tell them apart. wondering if my pain sometimes is psychosomatic. the dizziness from pots makes me dissociate sometimes. for me, getting physically treated by male doctors for eds makes me dissociate a lot of the time. eds and mental illness feed off one another. it's difficult.

Thank you so much for sharing this.

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