Adventures with EDS

Hey Guys!

Sorry it’s been so long since I’ve done a proper blog post! I’ve been so so busy the last couple of months I don’t think I’ve really stopped. And of course, when I’ve finally managed to stop, I’ve not been feeling too well. If you want to catch up on the things I’ve been up to I have been doing a weekly vlog called Adventures With EDS. I promise I will do some proper blog posts soon when I get some time which coincides with enough energy and focus to write. There’s one I’m planning at the moment all about my going back to uni with chronic illnesses wish list, so stay tuned for that. For now here are my most recent Adventures with EDS videos for you πŸ™‚ Hope you enjoy them and I’d love it if you’d subscribe to my youtube channel.

Cruise Holiday Vlog! Adventures with EDS

Part of the Adventures with EDS series, this vlog lets you come on holiday with me on our first cruise. Join me and my boyfriend, Mike, as we set off on our first holiday for 3 years and sail to La Rochelle in France, Bilbao in Spain & St Peter Port in Guernsey on P&O ‘s Ventura. This holiday was a 21st Birthday gift from my Mum & Mike that I’ve been looking forward to since November! See me dealing with my POTS ( Postural Orthostatic Tachycardia Syndrome ) , EDS ( Ehlers Danlos Syndrome ), Migraine & Food intolerance ( Gluten free, Dairy free, Refined Sugar free, Caffeine & Alcohol Free ) plus face the heat as we find out just how good cruising is for someone with a disability and/or chronic illness. We play bingo, lounge around the pool, dress up for the formal nights, watch brilliant entertainment on the ship and eat, a lot! We wheel, sail and walk (hobble) around our various ports of call. You’ll get a tour of our little state room and see what there is to do on a cruise ship. Thanks for watching πŸ™‚

If you liked this video please subscribe to my channel πŸ™‚ It would mean so much to me πŸ™‚

What’s in my bag?! Cruise holiday spoonie suitcase edition

As my boyfriend said when he opened suitcase ‘It looks like a pharmacy in here’. In this video I show you all the things that I’ve packed for my short cruise holiday / vacation. I’m very excited but it’s my first holiday where my illnesses have really caused me problems so it’s also a little daunting. Hopefully you enjoy seeing what I’ve packed and are looking forward to my upcoming holiday vlog.

Heart to Heart: Chronic Illness Update

I had been trying to sit and write blog post for ages but have had such a bad time with pain and poor concentration I was having a hard time managing to write anything at all let alone something coherent. So I did a video instead to try and update you on my battle with chronic illness so far and the fight I’m currently trying to win to in regards to getting my pain down and the challenges I face with pacing, guilt and coping mentally as well as physically. I was pretty fatigued when I was filming this so hopefully the point comes across. Love & Spoons to you all. It gets tough at times but we can do this!

EDS Awareness Bundle Giveaway

Hey Guys!

EDS awareness month may be over but for those living with the condition it is a never ending battle. So I’ve offered to team up with Hannah over at Sunshine & Spoons to help co-host an amazing giveaway she’s offering which includes all these amazing EDS awareness prizes and I’m super excited to be a part of it πŸ™‚

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This amazing prize includes: Zebra Ribbon Decals, an EDS ribbon necklace from Kat Makes Stuff, an EDS awareness tee, 3 EDS lapel ribbons, 10 lemon challenge cards, 10 EDS fact cards, 3 EDS awareness bracelets and an EDS awareness mug.

All you have to do to be in with the chance of winning this awesome prize package is enter here:
a Rafflecopter giveaway

Unfortunately, due to high shipping costs this giveaway is only open to all you lovely people who live in the USA and Canada. Anyone else will have to pay shipping costs. Your email will only be used to notify you if you win. All entries will be verified. The prize opens on 20th June 2017 and closes on 27th June 2017. Good Luck!!

Co-hosts:

Hannah from Sunshine and SpoonsΒ 

Sarah from My Stripy LifeΒ 

Brittany from A Southern CeliacΒ 

Sara at Zebra Writes

Jenni at 1nvisibl3GirlΒ 

Mary at The Headache HeroineΒ 

Avon Haul

Bit of a different video for me. I recently became an Avon rep and wanted to share some of their awesome products with you. Let me know what you think! For all my zebras, I’m still selling Zebra PJs & Slippers and am donating 5% to EDS UK, Get your orders in! If you like anything you can order with me online at avon.uk.com/store/shop-with-jenni

TMI Tag!

The Lovely Georgina over at Georgina’s Journey tagged me to do the TMI tag so I could tell you all a little more about myself outside of my Chronic Illnesses. So here’s me answering 50 questions so you can found out some facts about me!

If you like this video please subscribe to my channel.

Thanks for the Tag Georgina : https://www.youtube.com/channel/UC2wf…

I Tag:

Zay The Zebra: https://www.youtube.com/channel/UCXL1…

Kraigisonfire: https://www.youtube.com/channel/UChv8…

Chronically Micaela: https://www.youtube.com/user/Chronica…

Chronically Cassidy: https://www.youtube.com/channel/UC78p…

Here is the link to my gluten free & vegan Lentil Bolognese recipe:https://1nvisibl3girl.wordpress.com/2…

Here is the Link to my online avon store please follow it and search Zebra to find the Zebra pyjamas and slippers. If you make a purchase 5% will be donated to Ehlers Danlos Support UK: https://www.avon.uk.com/store/Shop-Wi…

Zebra PJs!

As you will know, if you are a regular to my blog ( or any of my social media really) you will know that May was Ehlers Danlos Syndrome Awareness Month. Now May, and awareness month, might be over (Where is this year going, right?!) but for those living with EDS it is a daily struggle that lasts a lifetime. So in order to continue spreading awareness I am trying to raise a little money for Ehlers Danlos Support UK, a UK charity which; raises awareness among the public and, more importantly, the medical community; supports sufferers, like myself; and hopes to, maybe, one day, help find a cure for this disabling genetic condition.

People with Ehlers- Danlos Syndrome call themselves Zebras, as Β doctors are taught ‘when you hear hoof-beats, think horses, not Zebras’ meaning they think of the most obvious and fixable answer to the problem not a complicated or rare condition, but it often means symptoms are not added or managed effectively which delays diagnosis.

So this month you can buy these amazing Zebra Pyjamas (Β£13) and Slippers (Β£8) by searching Zebra on avon.uk.com/store/Shop-With-Jenni and I’ll be donating 5% of your purchase to EDS UK. Whether your a Zebra or want to support a Zebra, I’d love you to buy, wear and share these pjs with the #ZebraStrong and get people asking ‘Why the Zebra?’.

Thank you!

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#eds #zebrastrong #zebra #avon

A Trip To Norwich

The thought of heading back to uni in September has been extremely daunting for me. I struggle every day with my EDS & POTS whilst not doing very much and with so much help from my amazing mum! How will I cope on my own? And how will I manage when the friends, who know me and understand my journey, have graduated and moved on to bigger and better things (some pretty incredible things)? The answer is: I have absolutely no idea! I don’t know how I’ll cook and clean and do laundry and all the normal things, let alone do my actual degree, but if this is as good as I’m getting in terms of my health, I’m going to give it best shot. I wanted to head up to my beloved Norwich, firstly to celebrate many of my friends finishing uni and the 21st birthday of two of my good friends, but also to start helping myself by being introduced to those who will be my coursemates and start getting some support from my tutors and the disability services within the university so I can feel supported and make the most of the rest of my university experience.

This vlog shares with you my little trip up to Norwich and the wonderful
University of East Anglia (UEA). I had a busy weekend packing, travelling, seeing friends, going to a party, visiting the Norwich Vegan Festival and the Norwich and Norfolk Festival, shopping, going to a friends rehearsals and meeting a fellow Spoonie & Zebra friend. All this whilst managing my Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic tachycardia Syndrome (POTS). It was a lovely weekend and a really positive expeience which has made me so excited (and a little less daunted) to go back in September! Hope you enjoy watching what I get up to!

If you liked this video please subscribe to my channel πŸ™‚