I need you to realise this…

Being chronically ill isn’t glamorous.

My medical conditions DO NOT define me. I am still a human being, as are you. Except, you’re not living life with debilitating conditions.

My wheelchair DOES NOT mean I have to sit on the sidelines and I refuse to be labelled as ‘unable’ because of it. Why? Because my wheelchair has given me a whole new lease of life; my chair allows me to go out and lead the life I choose.

Do you think I WANT to miss out on invitations? Whether that be an invite to a birthday party or just to go into town and grab some lunch. We all need a certain level of human interaction…

I DO NOT enjoy this life. I DO NOT like the endless amount of hospital appointments. I DO NOT like missing out on activities. I WANT to be a normal 20 year old; but it’s not physically possible.

– – – –

Since being told that I have several chronic illnesses, my life has dramatically changed.

I’ve learnt who my true friends are.

I’m constantly dealing with deteriorating health.

I spend the majority of my time at home. Either in pain, unable to move or asleep.

CHRONIC ILLNESS HAS TAKEN OVER MY LIFE

– – – –

Once again, thank you for reading.

I hope you are all well and that you have a great week!

S. x

You are incredible…

Morning,

I’m not going to do an intro today, this post will explain itself as you read on… So, lets get into it!

– – – – –

Tom Mitchell

Tom has been inpatient for (approx.) 6 months now due to Myalgic Encephalomyelitis, a debilitating condition that has left him bed ridden and paralysed in three limbs.

Tom is unable to eat, which means he is fed through a PICC line. (A tube that’s placed in the arm and leads to his heart.)

Despite this, he continues to support those around him and document his life story – giving inspiration to others with chronic illnesses, even those without.

I also suffer from Myalgic Encephalomyelitis (among other conditions) and I know first hand how evil this condition can be…

So, Tom; you are an incredible human being.

Keep fighting!

If you wish to follow Tom’s story, I’ll add the necessary links below:

Facebook | Blog | Instagram (1) | Instagram (2)

Click here to read about M.E!

– – – – –

Amy Lee Fisher

Amy suffers from several chronic illnesses, these being Gastroparesis, Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Mast Cell Activation Disorder, Myalgic Encephalomyelitis and Hypokalemic Periodic Paralysis.

Amy is currently in hospital, awaiting an NJ tube placement as she isn’t able to get the nutrition that her body needs. She hasn’t been able to eat for around 3 weeks and is now incredibly weak and malnourished!

While in hospital Amy’s body has been testing her, for sure! A major MCAD attack alongside an anaphylaxis reaction – which then lead to needing the crash team.

Similar to Tom, Amy continues to support and inspire those around her with chronic illnesses, despite her ongoing health struggles.

Amy, you are so strong and I’m certain that you’ll get the nutrition you so desperately need… Just keep going and things will slowly begin falling into place.

If you wish to follow Amy’s story, I’ll add the necessary links below:

Instagram | Youtube (1) | Youtube (2) | Facebook | Website

Click here to read about HKPP!

Click here to read about EDS!

Click here to read about GP!

Click here to read about MCAD!

Click here to read about PoTS!

– – – – –

Thank you for reading, be sure to follow/subscribe to both Tom and Amy.

S. x

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. 🙂

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.

– – – –

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.

– – – –

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.

– – – –

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 wheelchair user: things that bug me!

What’s going on guys!? I hope you are all doing well.

As some of you may know, I’d planned my blog posts at the beginning of the year so I could have more structure. But I went against my plan and have decided to write a little about things that annoy me as a wheelchair user!

Let’s get into it!

– – – –

I’ll start with something that I feel many of you will relate to, seeming invisible to ‘able bodied’ individuals.

When coming out of the supermarket, a woman who was seemingly unaware of my chair and I, proceeded to head straight towards me with her trolley…

We collided and she swiftly me a look as if to say “move out of the way, you freak!”

Apologies, but I’m not necessarily able to move as fast as you are so maybe next time you could either say EXCUSE ME or just hold back while I move? Is that too much to ask?

Honestly, I’ve never felt so angry! It was a struggle to refrain from commenting, maybe I should have.

– – – –

Secondly, lack of accessibility.

Now, the fact most places are inaccessible may seem a little obvious to most wheelchair users, but considering the fact I’ve not been a user for that long – bare with!

Previous to being in my chair, I used smart crutches, which didn’t really pose an issue when it came to accessibility, as you can imagine.

But I’ve come to realise how relevant this issue is, it’s 2017, how is it acceptable to STILL have inaccessible venues?!

Personally, I find it incredibly degrading when you can’t access or require assistance to get INTO said venue.

Will this issue ever be resolved? The fact that it’s somehow ‘ok’ for newly built buildings to be inaccessible makes me think not.

– – – –

Last but by no means least, what happened to you?

Let me start with this: I am more than comfortable telling people why I’m in a wheelchair.

But, the thing I strongly dislike is those who approach me (whether they know me or not) and feel that it’s acceptable to jump straight into an interrogation as to WHY I’m in a wheelchair.

“Oh, why are you in that? You look fine!”

Mate… if I was ‘fine’, do you really think I’d choose to sit in a wheelchair all day? Being able bodied is something I took for granted and I wish so much to have this back – but I can’t.

Is it really necessary to make me feel as if I NEED to validate my disability? I think not.

It would mean so much more if people were understanding and either asked in a more sensitive way….

“If you don’t mind me asking…..”

OR

Just keep your mouth shut and wait for US to share with YOU.

Is it really that difficult?

– – – –

Remember: not everyone is comfortable sharing why they are in a wheelchair so don’t be offended if they choose not to divulge. Bare this in mind!

– – – –

Anywhooooo, I could go on all day but I’ll spare you the pain!

I hope you enjoyed reading,

Leave a comment/email with something that bugs YOU!

S. x

Quotes

Afternoon, I hope you’ve all had a good Christmas break!
Seeing as it’s now 2017, I thought I’d organise myself and create a plan! (Uploading one blog post per month… and I’ve got them all planned out ready…)

– – – – – –

Below are my top 10 motivational/positive/ inspirational quotes that keep me going, especially through the hard times!
(Why don’t you comment your favourite quote?)

– – – – – –

1. (I wrote this one) “Just as I thought life was over, you reminded me that caterpillars turn into butterflies and that I can too…”

2. “Darling, you are not the opinion of those who do not know you.”

3. “Yes, I’m chronically ill, but I will not let my diagnosis’ define me.”

4. “My disabling chronic illness is more real than your imaginary medical expertise.”

5. “Difficult roads often lead to beautiful destinations.”

6. “Destroy your thoughts, not your body.”

7. “You are loved. You are significant. You matter.”

8. “That which does not kill us, makes us stronger.”

9. “You are not a mess. You are brave for trying.”

10. When it rains, look for rainbows and when it’s dark, look for stars.

– – – – – –

There you are, my *current* favourite quotes!
I read through these whenever I need a pick me up, so hopefully you’ll read one and find that you can relate.

Thank you for reading,
Happy new year!
S. x