Hey, I'm Jenni, I'm a 25 year old from Essex in the UK and who is living with Ehlers Danlos Syndrome (EDS) & Postural Orthostatic Tachycardia Syndrome (POTS). These cause chronic pain, fatigue & migraine as well as food intolerances and a CSF leak. I'm also a fundraising officer for an environmental charity and a princess performer for children's parties. I love animals and have a pet hedgehog called Honey. I vlog about life with a chronic illness and hope to raise more awareness for my condition whilst sharing my story to help others zebras & spoonies. Please check out my blog chronicallyjenni.com . I'd love to hear from you so please leave comments or drop me an email. Spoons & Love to you all x
thank you so so much for this. i am young and in constant pain due to scoliosis, and had to wear a scoliosis brace for 500 day creating no back movement for 23 hours each day
Thank you so much for this video, I may take your idea about how to dry my hair. May I please ask few things things- How do you exercise walking running and resistance training ? Is bloating part of EDS, because I can’t ware tight clothes working to cause bloating. How were you diagnosed, was it by a special PT office visit, genetic testing- what helped you get diagnosed. I’m struggling and seeing many symptoms that are under the umbrella of EDS including not liking heat and suffering from it especially when lifting as up- I said that to every Dr I meat and no one took that symptom seriously- and in your video here I head you saying what I feel- they told me pots is when you feel you about to faint or faint from prolong standing..
I'm 25 and also a small youtuber, i recently have been diagnosed with Pots and im hypermobile im just waiting for rheumatology to tell me if its HSD or EDS snd im being looked into for my mast cells under immunology I wish we were friends 🥺🤍
I get tired of explaining to the people around me why I feel the way I do, and taking painkillers just to make it through a day's work to support my family really sucks!!!!
My worst symptom of Heds is the care and ridiculous gaslighting from doctors. "You're just depressed" well I am now yeah I'm in debilitating pain everyday and you're just telling me my x-ray and bloods are fine so it's all in my head. 13years of constant doctor appointments and finally got diagnosed at 26
Ar my childhood pool there was a chair that lowered but way less high tech than this one! It's cool to see that the technology for pool lifts is getting upgraded!
I can definitely recommend sit skiing (Winter Games) with an instructor. It was like being set free and carving turns was pretty easy if you’re used to shifting your weight in your wheelchair. The Snow Centre in Hemel Hempstead has dedicated instructors for disabled skiers xxxx
Fucking thank you! And fuck the old ppl who stare at me for using a mobility scooter in the grocery store. YES, SUSAN I CAN BE PRETTY, DISABLED AND YOUNG AT THE SAME TIME. MIND YPUR WRINKLY BUSINESS
This is AMAZING! I'm just at the very beginning of my EDS/POTS journey (my doc didn't want to diagnose it for the longest time) and had no idea about the thumb/joint details! I'm going to look for possible aids covered by my state insurance since I'm unemployed and seeking disability, but I may have to save up for one of those canes 👀 Thank you for this! Especially the sleep hacks, sleep is hard!
Also charity shops, I often see walking sticks and walkers/rollators - obviously (as with anything second hand, you don't always know the history/condition of items, so it's worth checking over)
I got my first walking stick from a charity shop! I found it really useful because I was quite unsure if a mobility aid would be right for me at that time and the stick was like £2 so it was very good. I used it for the next year until I got some other aids so I’d say it’s a really good option for people like me
Buying 2nd hand, you have to be careful about who owns it; the NHS owned the first 2nd hand chair I tried to buy. you have to look for an NHS tags or any other group before you pay. All with Access to work, and Motability you have to work out who owns it as well, I have had not 5 NHS chairs where I am how long it takes is defind by 2 main time, the time it takes to make, (for invacare this is 6 to 12 weeks) and the other part is when you case get to the top of the list in the monthly meeting. I have had 1 chair order the same day the OT saw me; I have other chairs that have taken a few months to get to the top of the list. How many chairs get ordered in a month depends on the time of year; if you get seen in May, you are more likely to get it quickly than if the OT see you in March. You also depend on where your chair is made. In most of the EU, not much gets made in July and August, as they are all on holiday. In China, I think it's February.
A similar but around 6K cheaper version of the Omeo is the Genny Mobility Genny Zero which was at Motability's Big Event at the NEC in 2024. I've had a Pride Revo 2.0 boot scooter since 2018. I gave up on Motability as neither the car dealership, Citroen nor Motability would remove the bulkhead from the latest Berlingo so that I could fit my scooter in the boot. Instead, I got a bank loan & bought a used 2018 Berlingo got Jeff Gosling to fit a hoist and now I can travel independently again. It's not been cheap but I'm using my PIP to pay off the loan which is what it is intended for. To put it into context, the Berlingo + hoist + scooter is less than an Omeo. The revo 2.0 doesn't do off-road very well and I guess that's my next upgrade. Excellent videos Jenni, I've subscribed. Can't wait for Naidex 2025. I didn't know about it till going the Big Event.
Jenni, have you done a video on your zebra outfits? I have been super wanting one for a long time and Id love to gorge on reccomendations! That suit fit you’re wearing toward the end is fabulous 🎉
My rheumatology team refuse to assess me for HEDS because I have a diagnoses of Neuro-Behcet's (vasculitis). Their reasoning was "it won't make any difference to your life or treatment" it made a heck of a difference when I needed a hysterectomy following pregnancy and traumatic childbirth. My obs/gynae consultant said my need for a hysterectomy was directly as a result of my hypermobility. There is a LOT of hypermobility in my family and extended family. I am now in my 40s and every time I bring up EDS it is either dismissed outright or as above, I'm told "why does it matter" etc. I do best I can to look after my joints and skin but I feel badly let down. There are definitely issues I experience which are not as a result of my Behcets and are not related to my being Autistic either. There are definitely some overlapping features though!
I've had a manual chair from wheelchair services. When I desperately needed a power chair (when I lost a lot more arm and hand strength) when i was 6 months pregnant, wheelchair services told me it would be over 12 months. I HAD to have a power chair to get me through the rest of my pregnancy and whilst taking care of a newborn/baby/then toddler! I was really fortunate that I applied to a community grant fund and they actually funded the entire cost of the chair and super quickly! (2 weeks!!) When I needed to replace that chair 2 years ago, I bought a 2nd hand one off eBay, from a mobility company. It wasn't ideal and wasn't entirely as advertised, but it's still going. It plugged a gap and now I'm grant fund seeking again for my 3rd power chair!
Really great breakdown of the options available Jenni! If people have questions on fundraising etc happy to answer on that too, maybe in a follow up video we could do
I don't know about the UK but make sure you get the longest warranty you can on any powered mobility device. My $50k aud power chair only 2 months out of warranty with about 300 hours had a major drive failure and warranty denied other than leaving me stuck . Is going to cost a fortune to get it repaired. Insurance doesn't cover it only covers for accidents and recovery. The joy of been a tad broken and getting stuck between a rock and hard place
