Ehlers Danlos Syndrome

May is Ehlers Danlos Syndrome awareness month! 

As some of you know, I am diagnosed with hEDS. (Hypermobile Ehlers Danlos Syndrome)

Many people, professionals included, aren’t aware of EDS and the life threatening complications it can cause. 

To help spread awareness of this often debilitating condition, I have attached 31 random EDS facts. 

Please feel free to share this post!

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Disclaimer: I did NOT create these. I’m using them for awareness purposes only.

I’m faking my disability!?

Hello! I’m back again. ūüôā

Wow, I can’t quite believe that it’s already April. The past 4 months have been a whirlwind for me and if I’m brutally honest, blogging hasn’t really been my main priority. But sometimes I can’t pull myself away from it! (Am I addicted? Who knows.)

Okay, so let me start with a little update… I’ve lost ALL use of my legs, from the waist down due to an¬†undiagnosed¬†neurological condition. (Seeing the neuro team soon!) Therefore I am now totally wheelchair dependent – it’s certainly been a life changing experience.

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Chronic illness has been a part of my life for many years now and that’s something I’m learning to accept. Life with several chronic, invisible and incurable illnesses is certainly different.

When reading fellow chronic illness based blogs I noticed that a lot of people choose to write about their experiences with *idiots* who come out with things such as¬†‘aren’t you too young to be in a chair?’¬†or¬†‘are you really THAT disabled?’¬†or even being accused of FAKING THEIR ILLNESS?

(I am aware that there are individuals out there who do fake illnesses, for many reasons. This is in no way a dig at them.)

Seeing as I wasn’t permanently in my chair, I previously felt it would be wrong if I expressed my opinion on this issue. But now, I feel that my reliance on a chair gives me permission to share my thoughts.

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HOW INSENSITIVE AND SHELTERED CAN PEOPLE BE? Is it really necessary to ask such a personal, idiotic question? Is there a law on how old you need to be to use a wheelchair? Do you expect me to have a noticeable physical disability?

Yes, I’m 20 and live life in a wheelchair, so what? I’m still human. Aren’t I?

No, I don’t have a noticeable physical disability. The cause of my paralysis is neurological/invisible. I can’t walk. Don’t take me at face value.

Yes, I like to go out. In my chair. With friends. Oh, my god, disabled people can have friends?! 

No, I AM NOT FAKING IT. Do you really think a 20-year-old, who was incredibly active despite her illnesses, would enjoy or want to be in a wheelchair permanently? I think not.

Yes, it’s incredibly rude to ask such questions.¬†Maybe, approach the subject more carefully, or not at all?¬†The chances are, I’ve just wheeled past you in town and yet you somehow feel that is appropriate to ask such a question?¬†

“If you don’t have anything nice to say, say nothing at all…”

Moral of the story: There isn’t an age limit on wheelchair users. Disabled individuals can have a life. Your comments are rude and usually hurtful. No, we aren’t faking it, although we may accept that our future involves a wheelchair but that doesn’t mean we don’t wish it could be different.

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Holy cow, did I go off on one? Sorry!

Anyway, why don’t you comment below YOUR opinions? (Or email me!)

Thank you for reading,

S. x

A Spoonie Christmas – Ho, Ho, Ho!

Good afternoon!

I’m not usually one to follow in the footsteps of others, but I quite like the idea of this! Lets just get straight into it…

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What illnesses do you suffer with?¬†Ehlers Danlos Syndrome (type three), IBS, Chronic fatigue syndrome (ME), PoTS… *other conditions have yet to be confirmed*

Whats the craziest cure someone has offered you?¬†Although a lot of people know about my illnesses, they¬†don’t really offer me any ‘cures’ so if I had to state the craziest… Aloe Vera Juice. (Not that¬†bizarre, is it?)

International day of persons with disabilities – what you want people to know?¬†I could write an endless list but I’ll limit myself to just one! My disability is variable, somedays I may use my wheelchair, somedays crutches… But this¬†doesn’t mean that there is nothing wrong with me…

Favourite guilty pleasure?¬†Ooh, being asked what my favourite guilty pleasure is always takes a lot of thought… Probably binge watching rubbish TV programmes…¬†

Favourite hydration?¬†*Prepare to realise how much of a bore I am…* Water!

Favorite inspirational quote?¬†“You should not let the opinions of others define who you are”

Flare essentials?¬†Hot water bottle/wheat bag, blankets, maternity pillow, pain relief and movies! (Just to name a few…)

Medication?¬†Ugh, medication… I’m sure there are a fair few of you guys out there who will be able to relate to this. I’d rather NOT take medication. Most meds set off my IBS etc. and cause (extra) extreme pain. (I’m in pain already, so I¬†don’t want MORE pain…) Yes, I take tablets that are essential but other than that, I avoid.¬†

What do you need ‘just a spoonful of’?¬†Certainly not sympathy! I¬†can’t stand people feeling sorry for me! But I’d quite like a spoonful of spoons… I’m running low.¬†

If you could get rid of one symptom, what would it be?¬†Nausea. Of all things, nausea. I’ve come to terms with all my other symptoms, they are a part of me. But nausea really stops me in my tracks.¬†

Pets or service dog? Double no. 

Hospital selfie?¬†Um, I¬†won’t torture you with the sight of me, in hospital, looking rather worse for wear!

Support system? *Skipped* 

Warrior wednesday – how has your illness made you a warrior?¬†I¬†wouldn’t say I’m a warrior, I’ve just learnt to accept my illnesses. Take each day as it comes. Kick ass.¬†

Throwback of healthier days? My god, the distance I could walk. Walking was a huge part of my life, I loved it. 

Most helpful advice? “You know best. You know your body better than any other professional. So if you feel that you do/don’t want to do something, go with that feeling…”¬†

Shoutout to your doctor?¬†Which one?! My GP – the one person who actually listens to me and tries to get to the bottom of things no matter how big or small. Honestly, I¬†wouldn’t be¬†the person I am today without him.

Favourite ‘safe’ food?¬†Lettuce? No, seriously; gluten free spaghetti bolognaise! All the way.¬†

Illness awareness collage? *Skipped*

Christmas decorations? *Skipped* 

Pj’s and slippers?¬†This is not a time to humiliate myself but posting a photo for the internet to see! But, imagine this: Chipmunk pjs, a zebra hoodie and reindeer slippers… Attractive, right?¬†

Favourite warm drink? EASY, hot chocolate! Mmmm. 

Christmas lights? *Skipped* 

Favourite christmas movie? How am I meant to choose? I LOVE CHRISTMAS MOVIES! Tonight I plan to watch Santa Claus 3, so that can be the favourite movie (of the day)


**I know that I’m meant to fill in one question per day but I never get round to completing them hence why I’ve done them all now**

(I may get round to filling in the Skipped ones, eventually)

Thank you for reading, have a great christmas! x