Adventures with EDS : Pimp my Walker, POTS appointment, new physio plus unwelcome stress

[@kbellmurray]

Thank you so much for showing your vulnerability. I relate so hard and your tears were so powerful to me that I actually got chills. I know this was awhile ago, but I just found you and subscribed and I’m gonna go catch up on your other videos now. You’re awesome.

[@ChronicallyJenni]

Hey Stella thanks so much for watching and subscribing. If your catching up there's probably many more tears and tantrums you'll have to sit through but they've all made me stronger and taught me something. There's also lots of amazing fun memories too. Sending lots of spoons & love your way xxx

[@bbtrekkie73]

I also have EDS classic, POTS, Fibromyalgia, Hoshimoto's etc. I just graduated from my rollator to a wheelchair. I will keep you in prayer for your meds. I get so tired of always fighting for basic pain relief and decent treatment

[@ChronicallyJenni]

Thank you lovely. GP has written to Hospital, she totally agreed I should not be changing anything until I see them in person in february. Hopefully one day soon doctors will have enough awareness so we don't have to fight so much anymore but until then we've just got to keep fighting x Sending you lots of spoons & love x

[@reubiecee]

I have EDS POTS Chiari malformation and much more I deal with problems with doctors all the time. I can't handle it anymore. 😢

[@ChronicallyJenni]

I'm so sorry you're having such a rough time. I do have a support group if you'd find it helpful let me know, we all understand and share your frustrations x

[@GeorginasJourney]

Hi lovely, hope this doesn't wake you (I've got insomnia so am up watching videos 😂) ! But at my doctors, you can get sick notes and the opposite one (well notes? 😂) by calling reception and asking for one- I got mind on the same day. I just had to wait about 2 hours for a phone call from a random dr (I don't think it matters who you talk to, they just need to be certified to give you the note) and then he listened to what I needed and it was printed and ready for collection in the same hour. Hopefully you'll be able to go through a similar process and won't have to worry anymore! Even if that's not how things work at your doctor's practice, it's worth ringing reception and telling them what you need and when by so they can try their best to get you it! It'll all work out in the end, you got this! 💪🏽❤️

[@ChronicallyJenni]

Hey Sweet, hope you ended up getting some sleep! The irritating this was this email arriving at ten past 6 on friday so there's nothing I can do about it til Tuesday and I'm working Tuesday! I'm definitely going to ring but when my doc did a letter for me for DSA it took a month and there's less than a month til I'm meant to be going back. Going to call to Drama admin guy too I saw him in May so hopefully he'll be able to help from the uni end. The annoying thing is that obviously my Doctor has written me a letter for DSA which shows he's happy with me going back it just doesn't say anywhere on the letter that that's what it was for! x

[@mjturner6291]

I'm so sorry, seeing you upset like that was heartbreaking. I'm so impressed you're showing such raw moments and gosh do I want to be there and be a helping hand, a fellow spoonie to just say "you're right, I understand" can really help. That specialist was absolute crap and you have every right to be upset and angry.

[@ChronicallyJenni]

Thank you for your support lovely! x I feel it's important to show exactly how it can make people feel when medical professionals don't listen to those with chronic illnesses and don't give a good explanation. x

[@charliesvlogs5723]

Hi sweetie! Where’s the tape from?xx

[@hannahtaybooks]

Sooo sorry that their taking down your meds when you need them soo much.

[@ChronicallyJenni]

Thank you lovely hopefully I'll manage to keep them where they are for the time being at least. Seeing GP on Wednesday. Wish me luck! x

[@mjturner6291]

Also (sorry for so many questions!!) can you tell me more about that conference? Is that something anions can go to? Do you have a link or anything?

[@ChronicallyJenni]

Sorry for the late reply, I've been on holiday x www.eventbrite.co.uk/e/management-and-wellbeing-conference-2017-by-eds-uk-and-hmsa-tickets-35170507936 Its an EDS wellbeing and management conference in Kenilworth (near Warwick run by EDS UK & HMSA anyone can go thats the link there are still a couple of day tickets left for the sunday x

[@mjturner6291]

I also want to ask, I know GI issues are really common in EDS. I'm only just getting close to getting EDS diagnosed, so I know it's going to be ages before my PoTS is diagnosed too so I don't want to mention GI issues to my doctor yet as they'll just shout at me for bringing up too many issues. But I to hear from another EDSer in the UK about your experience in bringing new symptoms on top of your diagnosis? Do they listen and consider looking through and diagnosing other/'extra' issues or resist like they do with bloody everything else (I'm not feeling too fond of the NHS currently in case you hadn't guessed ;) )

[@ChronicallyJenni]

Over the past 2 years I've really had to work through it on an issue by issue basis. Sometimes you get lucky other times you don't. My GI issues are something I took into my own hands and I've found that changing my diet has really helped a lot with those symptoms, for the most part. EDS is such a huge condition it has to be broken down. I had a CSF leak caused by my EDS and had to get my POTS under control before I could have the surgeries so my joint problems have really been pushed to the back. I'm having physio and have upcoming appointments with pain management and UCLH for my EDS but it's been a really long time coming x Sending you lots of Spoons & Love x

[@CandyDelicia]

I get what you mean my doctor also did something bad like that to me he was like you can do jury duty and I am like ADHD and I can't sit for long or stand too long I use a walker. But yes doctors can be asses

[@ChronicallyJenni]

urgh so frustrating! x

[@spoonietimelordy]

I know that you turn this video in august. But I so much want to hug you (I know what it is to not being listen by doctors, I need mobility aids so much and they laugh at me for asking them.) Sent you a lot of spoon ❤️

[@ChronicallyJenni]

It's a constant battle with doctors but you have to keep fighting for the things that will help! x Spoons & Love x

[@tinahall2512]

Why do they not listen to YOU?! If you don’t feel it’s time to reduce the meds they should listen to you. Your body not theres.

[@ChronicallyJenni]

Extremely frustrating. Fortunately, I was able to do it at my own pace in the end x