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. 😢

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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 🙃

That’s awesome

Congratulations!!!

What kind of job do you have?

❤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

POTS postural orthostatic hypotension. Thank you. ♡

Laughed so hard when you said tequila. I knew. Hahahaha bless you

Thank you for sharing. I have cerebral palsy and have had seizures. You’re very easy to understand. Wishing you well

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!!

I need to get one of this so I could go for a walking with my husband.

They really made it a lot harder for people who need this to get it

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.

Came here to learn more about EDS after reading ‘Fourth Wing’. You are awesome! 💪🏽

Thank you

What is your age

Aw you have a lovely home :)

Oh my gosh you are GORGEOUS 😍 I’d love to take you on a date. We can do a night out any time!

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!

This cool wish I had one

Heyyy!!! I have both EDS and Epilepsy!

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.

Thanku madam very very super nice.

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 didn't take it seriously at first and wasn't taking My medication but I learned the hard way

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

I've had it since I was 6 years old and I'm 28 now

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.

what medication are you on

Some people set on their wheelchair cushions to prevent pressure sores we struggle with assistance with our special needs grandson

Love this video

Have you taken fluorquinolone antibiotics?

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.

Great idea and you can get it in any car I use quantum edge eye level

2 wheelchairs is a life saver

Hi, from a retired guy in Melbourne Florida, I like your video I’m guessing by the sound of things you really like Your Smart Drive Power Assist. I just got a fold up wheelchair and a used like new Smart Drive, Power Assist . I’m glad you’ve got the speed control dial. I don’t have that yet. I need to order it. That seems to be the best way to control the smart drive speed. The old smart watch doesn’t seem to work very well for some people.. I have heard that the drive wheel rollers on the back wheel need to be replaced time to time. And I hope the batteries last quite a while they’re very expensive to replace the batteries about $1300.. the replace. If you have any questions, just ask me. I’m educating myself a lot about the smart drive.power assist. I have neuropathy and it’s affecting the strength of my legs. I can still get walk a little bit but I can’t walk very far. Good luck with your smart drive. I hope it works out well for you. Thanks for your video.

Thanks for sharing this information. Two question's is if they take away your allowance. How do you live? And do they take the tax off the petrol ⛽

Those foreign countries always gets me… I would just place my wheelchair next to metal detectors and wait til they gave me a pat down! Works very quick and fast all the time.. since, I set the alarms off until somebody tell me to move… I am half deaf as well!

Wow that's fantastic help for you 👍, absolutely brilliant ideas nowadays. I hope it makes your life alot easier you deserve it, take care young lady and enjoy your life👍.

I signed up to this too with ATG. They accepted a doctor's letter for mine. They also will save the seats for you if you are waiting for a card applicarion to go through. ATG have been really geeat with me. They called me back when they said they would and I ended up in the front row at a gig. With regard to tickets, I got a third off my own ticket and my essential companion came with me free of charge. Another fantastic thing with all ATG theatres is that if you are ambulant disabled they allow you to book any seats in the whole venue with the same benefits of a third off your ticket and a free companion. I was in the front row on one night which I did pay VIP prices for as a package but the second night I was in the fourth row with a total cost of £65 for us both. The ticket has to be over a certain price to get a third off, however. One thing I suggest those without a nimbus card do is to register with venues BEFORE shows are announced so you have everything sorted before the mad panic of the announcement and then sale day. I am currently in the process of getting a nimbus card because, despite the small cost, it enables me the luxuries that able bodied people don't even need to consider. Thanks for the video!

I discovered this with the progesterone only pill!! I'm told I can't take the combined pill because of my migraines, and they even higher risk of blood clots and stroke. Also my migraines with aura were almost constant every day so we took me off it to try and stop them which I think worked because I haven't had one since. But I also ice my head every night. Then, being on the progesterone only pill, my mobility has fallen through the roof I can hardly walk and I have sustained injuries. If I come off the pill my mental health suffers and drastically changes. So what is the viable option for the people like us? 😌

I'm just going through PIP and Motability myself! The second you said driving leaves your body feeling in all sorts of ways, I instantly thought do you have EDS 😂🦓 it's funny hearing other people with the same condition explain things the same way I would explain. Makes me realise we're not alone! Thanks for your video 😊🥰

I'm so glad you're able to go out! Thanks for sharing your routine.

Thanks for sharing. Good luck with your tooth. ❤

Your kittie is always welcomed ❤