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!

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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 ๐Ÿ˜› I then top with my favourite veggies, usually mushroom and sweetcorn… and pineapple. Because pineapple DOES go on pizza ๐Ÿ˜›

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.

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#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.ย 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 ๐Ÿ™‚

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

If you liked this video please subscribe to my channel ๐Ÿ™‚ 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 couldnโ€™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 .ย 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 Menโ€™s support group coordinator at Ehlers Danlos Support UK. You can find him on Twitter.