Chronically Jenni
Spreading Awareness & Helping Others with EDS & POTS
Tag: chronically ill
Friday Thoughts: Invisible Disabilities Week
Posted on October 18, 2019 by Jenni Pettican
‘You look so well’ It’s a phrase I absolutely dread hearing. The last time I remember hearing it was at my mum’s 60th birthday. Earlier in the day friends and neighbours may have spotted me leaving the house with my walker to get on…
All That You Can’t See: Living with Ehlers Danlos Syndrome
Posted on August 24, 2019 by Jenni Pettican
If I’d have had to write my final university project two years ago, when I was part of the class of 2017, I couldn’t tell you what I’d have written about, since going back to university I always knew that I wanted my project…
Category: Illness, UncategorizedTags: all that you can't see, awareness, chronic fatigue, chronic illness, chronic pain, chronically ill, docudrama, documentary, eds awareness, ehlers-danlos, ehlers-danlos syndrome, living with eds, living with ehlers danlos syndrome, project, radio, university, zebra
Friday Thoughts: Different Aids for Different Days
Posted on August 23, 2019 by Jenni Pettican
Recently I’ve had a lot of questions from friends, colleagues and spoonie’s alike about my mobility aids. From how I started using them and accepting them as part of my life to why I do, or don’t, need them from one day to the…
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Saturday was my first time being Cinderella but it was even more special because I got to do it for my beautiful little cousin's 3rd birthday 💙
Reading and singing to all 3 of them was just magical 💙
#cinderella #princesscosplay #disneyprincess #princess #cinderellacosplay #keepingthemagicalive
I've just arrived home from a lovely weekend in the fine city of Norwich. I say the city but in actual fact I barely left my old university campus.
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It was so lovely to take a bit of a break from normality and do the things I've loved and I've missed. I went back on the radio @livewire1350, caught up with a lot of my favourite people and had a fabulous evening at @minotaurtheatre 's annual Cabaret.
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This trip was really good for giving me a chance to get back to me. Don't get me wrong I love work Jenni, Princess Jenni & Chronically Jenni but I can't forget about the person all these version live within.
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A friend reminded me that there are the things you do to pay the bills and then there's the things that make you you. If you're lucky, like me, there's a crossover. But sometimes, especially when you have a chronic illness, you run out of time or energy to do the things you truly adore. But I'm going to try and find the energy to remember my dreams every once in a while. .
What dream of yours do you need to remember to pursue? It can be a small as getting the feeling of wearing a kick-as outfit or as big as finding your dream job, let me know in the comments.
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Shirt: @hm
Skirt: @georgeatasda
Stick: @neowalksticks
Photo: @sarahjessdarley
#IveGotADream #norwich #norfolk #uea #heyuea #babewithamobilityaid #disabledandcute #disabledandhot #discoverunder2k #fashion #walkingstick #EDS #HSD #POTS #ehlersdanlos #HMxME
Not the average Monday at my desk job!
Loved getting a sneak peak at these beautiful birds.
Of course I'm grinning like a 5 year old when I get given little Anvi to hold once all the kids have gone 😂
My favourite was definitely Skye the Snowy owl.
Can't wait for the other events we've got coming up this year!
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@thameschase #thameschase #owls #owlsrus #owlsofinstagram #owlsoftheday #snowyowl #barn #essex #essexbarn #thingstodoinessex #halfterm
It's been very strange having the whole weekend off princess duties. It has made for a productive weekend but I'm very excited to get back to it next week! I'm very lucky to have a job which I love so much that I miss when I'm not doing it.
Here's a lovely shot from last week - love this picture and these two lovely ladies 💙🎈
P. S happy 70th anniversary Cinderella
#princess #princessgang #moana #jasmine #cinderella #princesscosplay #disneyprincess #disneyprincesses #disneyprincesscosplay #princessparty
This month marks 4 years since I was diagnosed with Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome & a CSF leak.
You'd think that being diagnosed with 3 crazy conditions, 2 of which have no cure and very little management and the other which would need at least a couple of surgeries to my head and spine to fix, would be completely terrifying. But in that moment I don't remember fear, I remember pure relief. This may seem like a strange response from a 20 year old who's just been told they have a life long health condition. But after 2 years of actively searching for answers to my ever increasing symptoms and repeatedly being told there was nothing wrong with me it was a huge relief to know I wasn't crazy and there were things that could be done to help manage the situation.
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I'd never heard of my conditions before being diagnosed and I have made it my mission to spread awareness in my little corner of the world and I'm glad to see awareness improving but there is still such a long way to go, especially in the medical community. .
You guys know how much I love a zebra print to try and spread some awareness for EDS so I couldn't resist getting my very own zebra necklace from @awarecauses in the black Friday sale. Its super subtle and stylish and a great conversation starter to raise awareness. Aware causes also donate 10% of your purchase to your chosen cause (in my case @ehlers.danlos ) and have a huge range of colours and stripes for any cause you want to raise awareness for.
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What is something you try and do to raise awareness of your or your loved ones health condition?
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#zebra #zebranecklace #zebraprint #zebrafashion #EDS #HSD #ehlersdanlos #ehlersdanlossyndrome #POTS #csfleak #chronicillness #chronicallyill #awareness #edsawareness
On #timetotalkday I thought it was important to post a couple of #selfiesIdidntshare from what has been a rough week on my physical health.
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But today I really wanted to talk about something I don't speak about enough, the mental impact of having a chronic illness. I don't know why I find it so easy to talk about the pain and the fatigue and the other crazy symptoms but I tend not to talk about the frustration, the fear, the stress, the isolation, the guilt and the grief that those symptoms can bring.
Add that to the fear, stress and unpreparedness of still being a relatively new graduate and, underneath the glitter, you've got a bit of a mess.
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My mental health has always been a bit sporadic but last September I finally admitted to myself I needed some help with my mental health. I had a fairly traumatic assessment over the phone and was referred for counselling... And I've not heard a word since - we all know what NHS waiting times are like. Thankfully, I've got great friends and family to support me and since finding work things have improved but these feelings don't just disappear.
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Today is about breaking down the stigma attached to talking about our mental health so I hope that me sharing just a little bit might encourage someone else to reach out whether that be to a friend, loved one or stranger on the Internet.
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Head to the link in my bio for the Time to Talk website to find out more and get some support if you need it.
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Drop a 🌹in the comments if you want to talk & drop a 🌻 if you're happy for someone to message you. .
Spoons & Love 💜🥄
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#itsokaynottobeokay #timetotalk #mentalhealth #mentalhealthawareness #chronicillness #chronicallyill #EDS #HSD #POTS #ehlersdanlos
