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

Guest Writer: Lana!

Morning lovely people, I hope you are all well! I’ve got a slightly different post for you this month. Enjoy! x

—–

When Shannon asked me to “guest spot” on her blog, I ofcourse jumped at the chance because its an honour to be asked to do something as big as that.First off I should probably introduce myself! I’m Lana – or the inconsiderate cripple in the blogging world! (although shannon calls me Shelly, dont you eggs!)

(Click here to view Lana’s blog)

I have several different chronic illnesses including Ehlers Danlos Syndrome, POTS, Fibromyalgia (and others, but i dont want to just list them because thats probably really boring for you lovely lot!)

I’ve had a bit of a Journey with my illnesses, and the journey continues, and every day I face new challenges, and continue to face the old ones too.

I had a L-O-N-G think about what I wanted to write for this, I knew straight away I didnt want to do anything too long – or too heavy. After many different drafts of different posts on different topics, I decided on something that I wish other people knew about my life with chronic illness.

So here we go, These are things that I wish people knew or listened to about life with chronic illness.

—–

5 things I wish people knew about life with chronic illness.

1) I will not “Get well soon”. I don’t have a curable illness. this is not a common cold, this is my life now, so although im sure you mean well, you need to know I will not be getting better anytime soon, this is my normal now. This illness isn’t going anywhere any time soon.

2) I don’t want sympathy. If I tell you about my illness, I’m telling you because I want to either raise awareness, answer your questions or im asking for your understanding. Please do not look at me with pitty. I know I’m very young to have all these things “wrong with me” however telling me “youre too young to be ill”, “Im so sorry you’ve got this” or ” I wish I could take it all away and make it better for you” every time you see me doesnt change the fact I have my illnesses and my age shouldnt come in to it.

3) Its not ok to judge someone you know nothing about in the street. My illnesses are mainly “invisible” at first glance. I have had so many different comments made about me in public by both strangers, and even people I know come to think of it. its not ok to say “There s nothing wrong with you youre just fat”, “oh youre just a hypochondriac”, “why are you walking with a stick youre just faking it”, “youre too young for a walking stick”, “who did you steal that mobility scooter from”, “you’re too fat for that wheelchair” and my personal favourite “You’re just an inconsiderate cripple arent you” (there is context to this one). It is not ok to bully ANYONE. It is not ok to judge people on things you know nothing about. You never know what wars people are battling inside.

4) My walking aid is not a toy or fashion accessory. No, you cannot “have a go” in my mobility scooter or wheelchair. Yes, you are offending me by asking in the first place. I DONT HAVE ONE OF THESE FOR THE FUN OF IT. ITS NOT A TOY. It’s a way of me being able to get out of the house and do things i need to do! it gives me some level of independance back.

5) I’m still me. I’m still a person, I cant promise my illnessses hasn’t changed who I am, but i can promise it doesnt DEFINE who I am. I am so much more than my illness.

Huge thanks to Shannon for having me! Its been an honour!

L x