I’m Ellie and this channel follows me on my journey through life, navigating chronic illness and disability in a world that wasn’t designed for people like me. I was diagnosed with Epilepsy at the age of 18 and Ehlers Danlos syndrome at 15. I am still at the stage where I really don't have this whole disability thing figured out so subscribe and we can learn together!
Thank you for sharing your experience- my wife was just diagnosed with EDS and I’m doing all I can to understand disorder. A lot of what you are describing is consistent with her symptoms.
I don't know about tonic clonic or much about why doctors can't cure my myoclonic epilepsy but I can understand you.i don't think we deserve to even suffer these painful illness
Hello I’m Ruth a journalist with disabilities and an Argon 2 quickie user - and would be interested in your experience on your extended wait in getting your chair.ruthjournalism33@outlook.com
Perfectly understand your experience. When my daughter and I was flying Delta back to the states from Paris Charles Degaulle airport, it was such an hassle to get assistance to get on the plane. We didn't get it so my daughter carried me to onto the plane herself, we were the last to board because of no help!
Thank you so much for sharing your story. Im over in the US. Its amazing how many different types of seizures people can have. 3 months post having my baby 13 years ago, I had 2 tonic clonic seizures within the month due to mal nourishment and chronic fatigue. I wasn't eating enough and breast feeding and definetley not sleeping because i was the one always waking up with my baby. I decided to start eating everything because I was so scared of having a seizure again. I gained weight but no seizures! My mom-n-law was there the first time and thought I was gonna die, my husband was there for the second one. It is so scary for me because I dont have signs of aura. So this was 13 years ago. My daughter was diagnosed with absence seizures when she was 6 years old. Her doc says she can out grow them and I hope she does, but to know I couldve passed this to her is devestating to me. Luckily she has never had a grand mal. Then this last year 2024, I had a seizure with my poor daughter there who is 13 years now. I have no signs I am going to have one. Then a few months later I had another one. Both times I had been stressed yes and maybe not enough sleep but also for both seizures the night before I had margaritas with tequila obviously. The first time I wasnt on medication because I didn't know I had Epilepsy. After that though I went to see a neurologist and was put on Keppra and couldn't drive 3 months which was hard being a stay at home mom. The second one my hubby and I went to the same restaurant same margarita and the next day we left at 4am to go fishing and the lake is an hour away, 15 minutes before arriving to the lake I had a seizure in the truck and it took me 3 hours to realize what had happened. I decided to also make a change. More sleep, less sugar, delegate chores and errands to reduce stress and no alcohol at all. I've been seizure free after making these changes and making sure to take keppra and hope to never have a tonic clonic again. Fingers crossed. I am glad you are seizure free and hope you live a long happy life. Thanks again for sharing. Its nice to have a community that understands what we go through because those around us dont. My daughter has some PTSD because of what she witnessed with me which makes me so sad but I have her in therapy. But she also thought her mommy was gonna die. Thats probably the worst part. I'm in tears now because I dont want to die from this brain disorder. There is nothing more scary than not knowing when a next one can happen. No triggers. Im just being as careful as I can. 😢
Just having a late night scroll through YT & came across your video when looking for assistance dogs in the UK. Was surprised to see we live in the same place though! Small world lol Recognise the city straight away 🙃
❤how old are you? You are so beautiful? And positive. And are you in a relationship? I know this is kinda crazy to ask but you’re so beautiful and I really wanted and needed to ask. Hope this is not your of the way or to forward. If so I apologize. I really enjoy your videos. Thank you for all the advice
Hi Ellie. Thank you so much for this video as I've only just had to give in to my disability completely and have just received my wheelchair and I confess that I'm frightened (as well as upset) because I realise that I am going to have to relearn how to get around, how to rethink how I get about, use public transport, fart around with doors, finding access for disabled such as ramps etc and it feels overwhelming.... it's bad enough suffering pain 24/7 due to numerous spinal damage & degenerative conditions, so I'm grateful to you for this & other videos as they will help me adjust. THANK YOU!!
Mobility scheme is a big scam, they won't let me buy my car after lease ends. spend £3,500 a year and 3years is 10.5k and end of the day you have nothing and car value is dropped down to £10,600. they make you stay on scheme to get other new car. they sell your mobility car at auction and make big money out of it. I HATE MOBILTY SCHEMES!!! don't recommend.
This is a very fair opinion! It works out well for me as a first time driver because the cost includes insurance which would be very high! In the future once I’ve driven for a few years and my insurance is lower, it may well be worth me buying a car privately! People should deffo do the math before deciding to use the scheme
What's fourth wing? I'm still learning about EDS while I'm awaiting my test results for EDS. Today kind of sucks because (I think?) my shoulder dislocated last night and I'm just kind of done, hearing other people's experiences helps with the "I'm crazy" feelings. Sorry if this wasn't coherent, I'm so out of it today lol.
@@SapphicSammy7 I’m sorry to hear that and I hope you feel better soon! 🌸”Fourth Wing” is a book by Rebecca Yarros. The main character has EDS (not explicitly stated but a similar condition). The author and her children have EDS. I think she did a good job of including this representation in her book. You should check it out!
It's really interesting to hear people's different experiences with EDS! For me, I don't get dislocations (maybe sometimes some subluxations), but it's like my muscles do too good of a job keeping everything together because I have really bad muscle tension that causes me many problems and pain and I have early onset bilateral knee osteoarthritis (diagnosed at 22) from the excessive wear and tear this puts on my knees. I definitely like the small exercises and for me I get really dizzy so I take salt supplements. Thanks for sharing your tips!
The drastic changes are the hardest part of EDS for me. Some days I'm so good I'm up on my roof cleaning rafters (very carefully of course lol) and other days I can't leave my bed. An old neighbor actually accused me of making up my EDS and tumor and everything because she said it's not possible for a person to be that completely polar opposite day to day or even within the same day or hour. I could be doing great but than my autonomic dysfunction kicks in and I'm throwing up violently for hours or something dislocates and I'm down all day. I was once dxed with bipolar because I assumed I had to be with such drastic swings but nope, all EDS lmao.
I have no real support,I haven't worked in the amount of time I started to have seizures and I'm left having to be asking for food/help and I feel like I'm begging and less than a man because I know that is not me.
I don't party or smoke weed now I never was a drinker and I only smoked weed and I've stopped for about 3years now,I don't know what caused me to have seizures because before the age of 42 I never knew what was a seizure.i used to work on a garbage truck and it first happened on my way to work and I woke up 3 days later.
What I hate about about having seizures is not remembering anything at all that I did and constantly having pain in My gut where I am left bent over and also pain in my chest area, can't move certain parts of my body and a real headache I've also bitten my bottom lip and the edge of both sides of My tongue and I sleep for long periods.i have also been diagnosed as having epilepsy last year by my neurologist and this is year 8 and I'm 49 now soon to be 50
Thank you for continuing to post videos! You have made me feel less alone!! I was just diagnosed with EDS about 3 weeks ago. I'm thinking about restarting my channel. ✨
I'm thinking about posting more videos on my channel. I only have 1 or 2 about Gastroparesis from a few years ago. But since then, I was diagnosed with a few other things including EDS about a month ago. Thank you so much for posting videos.
Amazing!! Just gpt mine today through Northamptonshire wheelchair services.. I was fighting since December last year so not as long as yourself but went in today thinking for another measure up 🙄 and there was one of these bad boys sitting there! As soon as they said oh this got sent back last week from someone else and just by pure luck! It has your measurements so you can take this home today. Not gomna lie I was so happy & so glad to give them back thier crappy standad one but played it down 😂. Mine turned out to be pure back aswell & girl you aint vain you just know what you like and i agree, matches with every outfit! Lol.
I'm an oddity with ATG. I was an exception to the nimbus as I'm registered sight impaired so they'll just take my CVI (certificate of visual impairment). The prices tend to be good too and they've offered me different types of access seats due to my different requirements. I did do nimbus for a different theatre though and that was a little annoying and thankfully that went through fairly fast.
