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How do you get it in a car when you are on your own? All the parts too too heavy

VEry very good Video!! Thank You!!! Hope you are feeling better

I get so frustrated and upset with my symptoms which I try to explain to people but it feels too hard to convey. I also think sometimes that I should be dealing with it better but I am doing the best that I can. I am having to learn to be kinder to myself. I was a very active person before becoming unwell and I feel like I've lost so much of my former life 🥺

Glad you've found wheels that work for you Stela. Those front wheels on the C2 are really cool.

Dudette you have a problem…

I don't know what country you live in but trust me, in the US we have the absolute worst medical care for those who have not only HMOs but government HMOs. We get dismissed a LOT with our symptoms and it pisses me off. We're either too fat or it's all in our head.

I understand…I was working full time, a gym junkie doing heavy weights, going on holidays, go out with friends on weekends….then I was diagnosed with CFS, fibromyalgia, hypermobility syndrome and a few others…I am now mostly housebound, can’t work and rely on the government pension. I am still adjusting to my new life, trying to be grateful for the little things 🫶🏼🌻☺️😖

Hi Stela, My wife Christine has Sarcoidosis and being on steroids for 20 years she now has brittle bones, last month She fell and broke shoulder, we’ve now decided it’s time for a power chair. Like you we love the modern look of the C2, we have requested a home demo, how do you find putting in/out of car? Thanks for the content too, it’s really useful, ambulatory users like my wife find it a struggle accepting mobility aids. Thanks Chris.

This is super informative and helpful. Thank you for sharing!

Thank you 🫶🏻

Thanks for the video You mentioned using aids to help you be the best version of yourself... Throw away the p a g a n y o g a / exercises with h i d d e n bad s p I r I t s , who tickle the emo-tions, masquerading as a n g e l s of light Give your life to J e s u s 🙂🙏

I’m Thankful To Stumble Across this Channel, First off I want to say you are strong and keep Fighting, I’ve experienced everything mentioned in this video and I have Ankylosing Spondylitis Life is going to continue to life but I pray that you get to know the Most High , He will Always be close to you even in your most darkest days , He loves you unconditionally and he is merciful he understands us when no one understands us it’s hard going through chronic illness but there is a light that will fade all the darkness and that light is the greatest light you can ever receive , All praise to the Most High and I’m sending prayers, love , healing and strength to you . Stay Strong ❤

Same. When you have pots and also struggle with your weight, it’s really difficult for me to justify the extra calories, I’m consuming during a flareup… normally I am very careful with what I eat, but when I have a flareup, I just eat salty & sugary foods like you said to the point I’m stuffed. My body knows I need it but my mind struggles with guilt. Currently stuffed & laying flat on my back cause I’m dizzy.

Gonna try this tomorrow. I’m on a beta blocker because without it my heart is in the 100-130 range all through out the day. 😢

I appreciate you talking about transitioning to an ambulatory wc using can cause "embarrassment." I know I need to get over it. I've had CRPS for 45 years. Constant pain and have used crutches the majority of my life but I got tired of leading with my disability so when I moved and had a fresh start of all new people, I put them down and just didn't leave the house when I needed them. I've been back on the for about 5 years and now need to let myself use a wheelchair. I'm 69. I can't get my 40# folding electric chair in and oit of the car tho. So...well. anyway, why don't you try a scooter or electric chair? I know so expensive. I figure its what credit cards are for. Thanks. Just found you and you ate so real. Subscribed. (Did you know that people with EDS are at a higher risk of CRPS? It so lpoks like you overstretch your joints with that yoga pose but you do good selfcare so nvm. ❤

I am currently In a flare-up 😕im in so much pain

glad I found this. it's very hard to go back into those little spaces, even if you're just telling the story. Thank You.

Huh… 🫤 I might have to talk with my doctor… I’ve just always been told it’s normal to almost faint / get vision blackouts after standing 😓 ya know reading what I’ve just written it doesn’t sound like it would be a normal thing…

I really feel for you my Lyme and two other tick borne disease started about 25 years ago. I had 20 weeks of IV antibiotics it helped but didn’t cure me I started with involuntary jerks it was a mystery told by a top neurologist it would go away by it’s self. Skin on my legs went numb I had so many odd symptoms finally found a doctor to treat all 3 diseases. Started have same kind of seizures oral medication helps I still have to take medication 25 years later. Nerve pain like bee stings hurts my feet mostly I take medication for that too . I found staying in a sauna for as long as I could stand it helped kill off the Lyme it’s sensitive to heat. I no long have these diseases but I am damaged doctors still don’t understand about the seizures last neurologist told me to stop taking seizure medication and get a hobby . You have a wonderful husband I do too when you were coughing he ran down stairs to see if it was me I am so lucky . I am in the USA our health insurance will not cover doctor appointments for Lyme disease and testing is very poor they rather have you die because it’s too expensive to treat you. I wish you well I pray that at least some of your symptoms will be resolved very soon a support group helps a great deal I went to one for years. My story was published and has helped many others .

My MCAS is so bad the only thing i can eat is oats! I'll react to EVERYTHING, also meds😢

You have an amazinngggg collection! How long did it take you?

Chris and you are such a cute couple! And you are so bubbly in the videos. Love, Ester

I was diagnosed with Asperger’s as a adult. Since being diagnosed with CzFS-ME I can’t make it anymore.

I had 2 hospital nurses laugh at me by the way I crawled onto and into the bed . “ Do you always get into bed that way ? Yessssss. I’m 68 same way still 5…. Laughing at me 🤬

I took Savella for 3 years, it was very effective. I have me/cfs. I learned about it from a lyme patent.

Rice is at the core of my diet. I can't tolerate any other grains. Corn is my absolute WORST, followed by wheat/yeast/mold, soy, I don't tolerate ANY beans/peas/legumes that means coffee/chocolate/peanut 😭 thankfully I'm good with all tree nuts including coconut 🥥🌴 which is a staple. I also have some "partial" allergies (egg whites, white fish, casein) the only severe anaphylaxis I ever had was from a chicken wing with habanero sauce 😵 jalapenos give me a milder reaction if they're spicy enough. To anyone who is unfamiliar with MCAS it sounds like made up nonsense but it's very real to us who can be literally harmed by just eating "normally". 😞

The GUILT is IMMENSE. You try so hard to take care of your body but it's like your body fights and punishes you for it. I don't wish it upon anyone else but sometimes, when you hear people give unsolicited advice without even trying to hear you out or comfort you when you're already feeling so guilty about it, having them experience being in your body for one day would be almost liberating. That's why when I meet someone who also has chronic illness and pain, it's an almost instant connection because they understand to an extent

I would certainly have complained about that hospital doctor...... I put myself in your shoes..and id have been sobbing..... In fact..that doctor shouldnt even be doing the job hes in..... What an utter arrogant s....t he was. Bless you...♥️

I agree, grieving your former self is very painful not only is it grieving your former self but also grieving the future. You thought you would have but now never will

I have cEDS, Autism, POTS, CCI+ Epilepsy. Along with Migraines and they’re all spawned from my EDS, I was likely having seizures as a baby because my family would talk to me and I would just stare into space. I Thank you for sharing your journey with me. The Struggle is real but we’re all in this hot mess together!

Yes, ppl don't get it and i do not bother to explain to them bc they have no ability to understand my pain. True,my adult children coment that one hour ago i was different and could do thing . I do sink into depression with huge flare ups when i can't move hand or leg . Its been 11 years with CRPS debilitating burning pain all over my body . Cognitive mess with speach ,processing info too slow ,very fatigued .Unable to move freely,poor balance falls . Can't cook, hang the washing up . Every small movement is painful .I used to be so independent hard working ,that loss of unable to work was the worst to accept and deal with Feeling useless ,unproductive. Its so hard to lay in bed for weeks ,staring into window and hearing ppl going to places, living. Im quite isolated bc of my pain and extremely limited energy or not at all. Loneliness became my friend . Sometimes I change from bedroom to living room just to have a bit different environment. . Conversation drains me fast,leaving me terribly fatigued for weeks. I have to watch basic engagement with ppl over the phone too. I have carer and in big flare ups painful ,3mnts in row is too hard for me to have anyone here. Yes , I need theirs help but my brain simply can't tolerate movement around. Extreme sensitivities , irritation, pain feels triple and simple basic conversation takes too much from me.All I need is to be left alone. Its not my response,its the brain.Also ,I leave 5 min by car from beautiful beaches . I haven't been able to go there for 2 years. I simply can't bc to get out of the house is exhausting. If i go somewhere half way through i want to go back home to bed bc the pain became unbearable. I know, sounds weird but thats my life. I actually do more than i could but level of pain removes my motivation to absolutely zero. Im fortunate to have physio coming to my place. He always checks on my pain. If im too bad we let it go, if im ok i do very simple exercise. He is very understanding and thought me how to structure my days only with minimum, so i dnt go backwards . What really helps me is my big monthly calendar board on the wall i write appts on it. With looking at the board, Im in picture what is expected from me, if i can do it or not ,where im with my pain atm.. Usually i keep only important appts. Having days off in between to recharge bit. Physio usualy looks at the board t and questions if i can move appts around bc is too much for me. His navigation helping me a lot, as he is only one who truly understands my pain. I sink into depression too. As much i miss my old myself ,my friends i do not dwell on it anymore. I was forced to learn to live hour by hour day by day. No plans,no commitments otherwise i felt guilty and stressed. You doing great job with videos, thank you!. Im glad I found you, I subscribed it too. All the best🤗

Oh my god, I just stumbled upon your video. I have autism and EDS, and I just went through a day like that yesterday. Spent the night with an atrocious migraine and nausea, my boyfriend wasn’t home so no one could hold my legs up for blood pressure, everything was hurting. It’s quite validating to hear you talk about those issues, I feel like i can’t really communicate my struggles properly to the people around me. I had to give up work and the French state won’t grant me any disability benefits. I was diagnosed very lately, and I’m just starting to realise that this is not normal. Anyway, I just info dumped but it’s my way of thanking you !

So grateful to have found you today! ❤❤❤

So much of this mirrors my own experience. 😢

Thank You for sharing this info!! I started fainting daily at age 8 as a child. I also had an entire list of additional symptoms, as well as being very clumsy… always bruised, had joint dislocations multiple times a year, as well as many fractures from being “clumsy”… I was always doing my party tricks with my flexibility… I was diagnosed with Dysautonomia, POTS, NCS, MVP, and Cardiologist noted Hypermobility at age 11…. My Cardiologist passed away when I was in my 20’s. It’s been hard to find Good Doctors that truly understand all this. Most Doctors now will treat my other Diagnosed illnesses but totally dismiss H-EDS (bc previous doc only made a note of Hypermobility & not EDS) I recently had an appt Genetics doctors that finally diagnosed H-EDS along with my other issues. But, still being dismissed by my regular doctors as just a flexibility thing and not the reason why I have so many dislocations/injuries & pain.

I want to join the community too 😢

I have it also my heart is broken I have one child he 42 I've always known he has allergies they just started and he already allergic to wheat soy milk .he doesn't have to do pen yet I do alot they tubed me last month and was on ventalator it's awful thing to have.

Your hands are meant to be flat on the floor

Your left arm hyperextends when the arm lined up against the brick wall you could see it

I need a power wheelchair or shooter because my right does not bend more than 15% anymore. It is so hard to find a wheelchair where I can put my leg straight in front of me.

May I ask what you use to edit your videos? They are awesome!

Thank you so much for sharing your story! I am going to share mine this week on my channel. Keep pushing forward, you got this!! By the way, the brain fog (for me) can be so embarrassing! And not being able to put on my shoes standing up! Oh, and walking into walls 😅 ! So many things to choose from 😂.

Thank you! Perfect information, and very informative! I know all about this disease and I wish everyone would watch this video. I’m so sick with Lyme! I also have viruses that resurfaced from my compromised immune system. No idea when I got it, but I’m a gardener and was bitten by a tick, because I had a live protozoa in my blood. It’s exactly like malaria! I don’t ever remember any rash.

Thank you, for being so honest and validating what always think. I would do tons of research if I knew a loved one had an illness! Most won’t even watch a short video on what multiple, overlapping things I have. I wish I had a husband, or ANYONE who would help me! 21 years and counting, plus 20 years of childhood illnesses and infections. I believe I also have EDS, and I do have too many chronic diseases to mention. I love everyone who is going there this. I also have medical PTSD and Lyme+. “Chronic” is a great book about Lyme+.

Girl! ❤ you are my new bestie. I was just diagnosed and I have lupus as well. You are SO REAL and I'm telling you--you are describing my journey. AND we have the same humor😂 Thank you for helping everyone!!

I work with chronically I'll people and I'll never forget when a client got severe burns from a hot pad because they didn't know their skin was burning. They just thought it was their chronic pain. Imagine that.

This is very relatable as an autistic person. Im thinking I need to see my dr lol

darent valley are useless im there nxt week for the same thing

thank you so much for your video. it's fantastically helpful! I've been living with chronic illness for 3 years, sympthoms are still developing, everything, what you are talking about is very actual. All the best to you!

Thank you for the video. Please try to live one day at a time