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 🙂

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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 Spoons 

Sarah from My Stripy Life 

Brittany from A Southern Celiac 

Sara at Zebra Writes

Jenni at 1nvisibl3Girl 

Mary at The Headache Heroine 

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  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 (£13) and Slippers (£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 🙂

Eurovision NEEDS Pizza || Mark 2

So I realised today, as I prepare myself for another night enjoying Graham Norton making fun of Europe…and probably Australia for the first time since Brexit (i.e we will get even less points than usual), that is has been a whole year since I started this blog! That was right back at the start of my gluten free, dairy free, sugar free journey and since then I have learnt a huge amount about the food I eat and vastly improved my recipes! I’ve also got a little lazy, well realistic, as I have not attempted to make mt own pizza base since. So I thought I would do an updated version for you and get out the old Eurovision playlist out so you can sing along and get prepared for my favourite guilty pleasure.

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In terms of a pizza base I used to use Tesco free from Pizza base but I’m not sure they do them anymore. Since then I have found Schar pizza bases which are gluten free and vegan. Like most gluten free products they do crack a little as they cook but they are really tasty.

Here is a much better recipe for a tomato sauce to to the pizza base:

  • 1tsp garam massala
  • 2tsp smoked paprika
  • 1tsp basil or italian herbs
  • 4tbsp tomato puree
  • 1tsp tamari
  • 1 clove of garlic
  • 1tsp lemon juice
  • salt & pepper

It’s so simple just put all that in a bowl and mix it into a smooth paste and spread over your pizza base.

Toppings:

I still sometimes top my pizza with nutritional yeast but most of the time I now use Tesco free from cheese range. I used to love their soya cheese and I got very upset and sent some angry tweets when they introduced their new coconut oil based range but it’s okay…I guess 😛 I then top with my favourite veggies, usually mushroom and sweetcorn… and pineapple. Because pineapple DOES go on pizza 😛

Sides:

When I’m just cooking for myself, like tonight, I tend not to make any sides as it’s too much for me but my boyfriend and I will often treat ourselves to the Tesco free from garlic bread (Tesco really does have the best free from range) or make sweet potato fries which I will put a new recipe up for soon.

Here’s my fun Eurovision playlist with the my favourites UK entries, past winners and some of the more obscure events in Eurovision histories. Enjoy!

24 Hours of EDS || a day in my life

Living with a chronic illness is a 24/7 job where you never get a day off. This video shows you a fairly typical day in my life. Ehlers Danlos Syndrome is different for everyone so I wanted to share with you what EDS is like for me. I want to show you a real day without the frills of nice clothes or make up which usually get put on for the camera, so excuse the puffy eyes. I walk the dog, make lunch, talk to about trip to see a dogs purpose, play with my boyfriends Niece & Nephew, get my blue badge in the post, sleep, attempt to get up and take a trip to the doctor. Plus trying to deal with my EDS, POTS & Migraine symptoms. Hope you like this video and let me know in the comments if you’d like to see more videos in this style.

If you’ve enjoyed any of my videos, I’d love you to please subscribe to my channel 🙂

#edsawarenessmonth #thisismyEDS

Living With Ehlers Danlos Syndrome #EDSAwarenessMonth

Happy May Everyone! You know what that means? It’s EDS Awareness Month! I was diagnosed with Ehlers Danlos Syndrome last February and it’s been a long battle ever since. I started off by fighting the comorbities that come with EDS, for me that’s POTS and a CSF leak. These are now both under control with daily medications and after 4 surgeries, but my EDS is a huge problem as my joints, especially, seem to just be getting worse. Ehlers Danlos Syndrome is such a rarely talked about condition that I knew it was really important to do my bit the #EDSAwarenessMonth !

This video has been a big project which I’ve been working on for a few weeks. I managed to cut 48 mins of video from 8 different people and turn it into a 18 minute video explaining, as honestly as possible, what its like to live with this rare, chronic, invisible illness. We talk about what EDS is to us, how we manage our symptoms, how EDS has changed our lives, why we started our own EDS based blog or vlog and our hopes and dreams for the future. We hope this is shared as much as possible this May as it is #EDSawarenessmonth so people can learn what it is really like to live with EDS but also to support those also living with the disease. I know it is long but please watch it all if you can. There are some amazing people describing some very difficult things in their own words. Despite the pain and fatigue involved in editing it all together this is a project I am very proud of and hope helps as many people as possible. Thank you so much for watching, I hope you learn and enjoy 🙂

For more information on EDS please go to: EDS UK or Ehlers Danlos Society . Or you can take a look at my video: What is Ehlers Danlos Syndrome?.

If you liked this video please subscribe to my channel 🙂 You can also find me on Facebook, Instagram & Twitter.

I want to say a huge thank you to everyone who got involved with this video, Lucy, Laura, Lexy, Kari, Shelby, Claire and Robin this video couldn’t have happened without you and it has meant a lot to me and each one of you is truly inspirational!

Here is all the information you need about everyone who was involved, in order of appearance. Be sure to follow their blogs and social media:

Lucy, 20, Oxford. Diagnosed hEDS in 2015. Follow her on Instagram.

Laura, 22, Lincoln/Sheffield. Diagnosed hEDS in 2016. She also lives with POTS. Follow her on Instagram.You can read her recent blog post about the benefits of exercise here: http://www.potsuk.org/stories/54. Laura is a 3rd year Biomedical science student, aspiring to work in genetics or astrophysiology. She is a former ballet dancer and last year completed an ultramarathon for EDS UK.

Kari, 24, Washington State. Diagnosed hEDS in 2016. Follow her on Instagram @chronicallyillbadass. She also lives with fibromyalgia, migraines, spinal stenosis and bipolar.

Shelby, 19, New York. Diagnosed hEDS in 2016. She also lives with POTS. Follow her on Instagram, Tumblr, Redbubble, and Youtube . Her gofundme campaign for her future service dog is coming soon.

Lexy, 25, Essex, Diagnosed hEDS 2015. You can find her blogs at: SuperGirlChronicallyIllSpoonie CentralHeaven Scent Bath and Beauty . She also suffers with Hyperadreanic POTS, Chiari Malformation, Scoliosis, Degenerative Disc Disease, Cervical Cranial Instability and GERD.

Claire,47, Middlesex. Diagnosed hEDS 2012. She also lives with POTS and nerve root damage, IBD and migraines. She was medically retired as a hospice sister in 2010. She has 3 children aged 14,18 & 21. You can find her blog at here. Follow her on Facebook and Instagram

Robin, 35, London. Diagnosed hEDS 2015. He is interested in music, tennis, rugby, football, cooking, pop culture, languages and science. He is the Men’s support group coordinator at Ehlers Danlos Support UK. You can find him on Twitter.

Lentil & Vegetable Bolognese

It’s been a very long time since I did a good old recipe post! Yesterday evening I had an awful headache and a lot of pain in my hip and wasn’t up to cooking the my lentil & vegetable bolognese I had planned because of the pain but my wonderful boyfriend offered to cook and managed pretty well but needed quite a bit of instruction so I thought I would share this recipe with you all as a quick and easy, yummy, vegan dinner that even my boyfriend, who is a novice cook, at best, can make.


Lentil & Vegetable Bolognese

Takes: 20mins

Makes: 4 portions

Cost per serve: £1.05

Ingredients:

  • 400g Brown Rice Pasta (100g per person)
  • 1 red onion
  • 3 garlic cloves
  • 2 carrots
  • half a red pepper
  • half a courgette
  • 6-8 button mushrooms
  • 1 tin of green lentils
  • 6 sun-dried tomatoes
  • 1tsp turmeric
  • 1tsp tamari
  • 3tsp smoked paprika
  • 1tsp mixed herbs
  • 1 tbsp tomato puree
  • 400g passata
  • 2tbsp nutritional yeast (Optional but yummy)
  • salt and pepper to taste

 

  1. Prepare the veg. Chop the onion, mince the garlic, grate the carrots, chop the mushrooms, courgette, pepper and sun-dried tomatoes into bite-sized chunks.
  2. Begin to cook the pasta, as per the instructions on the packet.
  3. Heat a little oil in a large saucepan and add the onion and garlic.
  4. Once the onion has become translucent add the carrots and courgette followed by the mushrooms and pepper. Cook 2 minutes.
  5. Then add the turmeric, paprika, herbs and sun-dried tomatoes and stir in.
  6. Add the passata and tamari coating all the vegetables and let simmer for a few minutes.
  7. Stir in the lentils before adding the tomato puree and nutritional yeast. Let it simmer, stirring throughout until all warmed through.
  8. Drain your pasta and place it in your serving bowl.
  9. Top with your bolognese mixture, serve, top with some more nutritional yeast or vegan cheese and enjoy! 🙂