Invisible Disability Awareness Week

This week (15-21st October) is Invisible Disabilities Awareness Week, a week dedicated to raising awareness to all chronic conditions which you cannot see. In fact 96% of people who live with a chronic illness live with an illness which you cannot see. So with this in mind you may not know that someone you know is in fact living with a chronic condition and is in fact struggling because it is not visible and looking at them they look the same as everyone else on the outside. People living with these conditions may not be in a wheelchair but they experience other symptoms which have a significant impact on their quality of life such as fatigue and brain fog. So the next time you meet someone with a chronic illness the number one thing to remember is NEVER ever say “but you don’t look sick” or “I hope you get better soon.”  Instead support them but asking them how they’re going or how they’re feeling that day,allow them to vent to you if they need and take the time to listen without being judgmental and making comments when you don’t know what it’s like to live with the condition.                                                                       Don’t try to think you know what it’s like to live with their condition if you don;t have it but show your support by saying things like “that must be really hard to live with”, I wish I could do something to help you”, ” I wish I could understand what it’s like to live with your condition but I don’t have it so I can’t but I will try to as much as I can and offer to help them out by asking if there is anything you can do to make thing easier for them. I know over the past few weeks I have had comment on blog posts saying that you are keeping me in your thoughts and prayers and although you may not be able to help me it’s the thought that counts, just knowing someone cares and is thinking about me.  I have shared a picture on 10 things to say to someone with an invisible illness from kalaidoscopefightinglupus .org.

Dysautonomia is just one of the many invisible illnesses. To read more about Dysautonomia and how you can support those living with this condition check out my previous posts, links are below.

https://coolncreative.wordpress.com/2018/09/30/five-facts-about-dysautonomia/

https://coolncreative.wordpress.com/2017/10/24/how-you-can-support-people-living-with-dysautonomia-and-help-raise-awareness/

You might ask, what disabilities are invisible and what exactly is an invisible disability? Basically an invisible illness is a disability that is not immediately apparent. Well there is a whole list besides Dysautonomia I wouldn’t be able to fit them all on here but just some of the many invisible disabilities include:

  • Postural Orthostatic Tachycardia Syndrome (POTS and Neurally Mediated Hypotension) which are forms of Dysautonomia.
  • Migraines
  • Chronic Fatigue Syndrome
  • Fibromylagia and chronic pain
  • Lyme Disease
  • Ehlers Danlos Syndrome (EDS)
  • Many autoimmune conditions including Lupus, which it is also awareness month for, Multiple Sclerosis (MS), Undifferentiated or Mixed Connective Tissue Disease, Rheumatoid Arthritis, Scleroderma, Sjogren’s Syndrome, Coeliac Disease and Crohn’s Disease.
  • Endometriosis
  • Depression and Anxiety
  • Autism
  • Irritable Bowel Syndrome (IBS),  just to name a few. If you know of any others feel free to add them to the list.

National Poetry Day

4th of October is National Poetry Day! I’m not much of a poet myself but I know many of my fellow bloggers out there write beautiful poems too so I’d like to shout out to Rose Elaine (roseelaine’s blog), Simplywendi from simplychronicallyill and Vivian from God’s whisperer’s of truth so I thought I’d make a mention. Today also happens to be  Maya Angelou’s birthday which is coincidental with craftschronicillnessand crafting also sharing one of her quotes on their blog so I thought I’d share another one of my favourite quotes which Alyssa from Fightmsdaily has previously shared to celebrate.                           Happy National Poetry Day!

trytobea-min

 

 

Choosing a host to go with

As some of you may already be aware I am in the process of hopefully creating a new website.Now the thing that is stressing me out is what host to go with and what domain name to choose. So many options. I am currently with WordPress and don’t really want to leave as I have met so many wonderful bloggers this year and I want you all to continue to follow me but I am unsure of whether to stay under the same name or create a new website all together. If I keep the same name everyone who already follows me will still be able to see my new posts and continue following me but I will lose all of my likes 😦 and may also lose all my comments (hopefully not). If I make the decision to be self hosted I have been recommended Blue host but I’m not sure how I bring a domain name with me since I live in Australia and therefore the website will be either .org.au or .com.au  The new website will be art based. So do I keep my old name or go with a new one? Stay with WordPress and upgrade thsi website to a paid plan or switch over to Bluehost. Any advice would be much appreciated.

Five fast facts about Dysautonomia

Turqouise ribbon

October is Dysautonomia Awareness month. I wanted to do a post to raise awareness so I thought I’d share with you all five fast facts about Dysautonomia.

  1. Dysauto what? Dis-oughta’-know-me-uh. For those of you who have never heard of it, Dysautonomia is the medical term for  a dysfunction of the autonomic nervous system (ANS)or autonomic dysfunction.
  2. Dysautonomia can impact many different organs, resulting in many different symptoms and can impact the whole body.  Think about all of the things your ANS is responsible for. Breathing, regulating heart rate,  regulating body temperature, going to the toilet. the list goes on.Dysautonomia can impact the whole body
  3. Symptoms may include tachycardia, bradycardia, hypotension or hypertension, dizzy spells, orthostatic intolerance (symptoms which occur when standing up), inability to regulate body temperature , nausea, vomiting, incontinence, a dry mouth, dry eyes and even brain fog.
  4. There are many different types of Dysautonomia including ; Neaurally Mediated Hypotension(NMH), Neurocardiogenic Syncope (NCS), Postural Orthostatic Tachycardia Syndrome (POTS), Orthostatic Intolerance (OI), MSA (Mu;tiple System Atrophy), Familial Dysautonomia (FD), Autoimmune Autonomic Ganglionopathy (AAG) and Pandysautonomia (Pandys).
  5. The international awareness colour for Dysautonomia is turquoise.

If you haven’t read my previous post from last year on how you can show your support people living with Dysautonomia and help  raise awareness  you can read it here.

https://coolncreative.wordpress.com/2017/10/24/how-you-can-support-people-living-with-dysautonomia-and-help-raise-awareness/

I would love it if every one of you who reads this post takes a step towards raising awareness by wearing a turquoise coloured ribbon and sharing these posts on social media.

 

 

 

International Coffee Day

Yesterday was World heart Day and today is International Coffee Day. There seems to be a day for pretty much anything in the world but for all you coffee lovers out there, today is International Coffee Day. Started only three years ago in 2015, it is a day to promote and celebrate coffee.

I thought I’d share a photo of a coffee I had the other day which had a heart in it. I always marvel at coffee art and how baristas manage to get pictures in their coffees. I’ve seen some pretty amazing designs over the years on the internet and on TV but I have never actually purchased one with coffee art so when the coffee came to the table with a heart in it I got a bit excited.  While I can’t drink a lot of coffee I think that coffee brings people together as people often catch up and go out for a coffee.

I’d love to know, what is your favourite coffee? Mine is mocha, although technically that’s not exactly a full coffee and chai latte and how do you like your coffee, black, no sugar, latte?

Heart in coffee.jpg

So to all you coffee lovers out there, go and enjoy a warm cup of coffee and Happy International Coffee Day!

Today is World Heart Day

Today (29th September) is World Heart Day. I know this is not exactly creative but I would like to share some simple things you can do not just on world heart day but everyday to look after your heart.

For those of you who don’t know, World Heart Day is an international day where everyone is invited and encouraged to make a promise to live a healthier lifestyle to prevent heart disease.

1.Eat healthy. Try to eat fruit and vegetables every day, cut down on excessive salt, that means not adding extra salt to your food and eat less sugary foods and remember to drink water rather than sweet, sugary drinks. Why not try cooking your own healthy meal. That will tick of number 1 and number 4 from this list.

2. Be active. Just 30 minutes of physical activity day has been shown to reduce your risk of heart disease. it doesn’t have to be intense, vigorous activity like running or climbing stairs (I know I can’t do either of those things), but walking is actually the best way to look after your heart.

3. QUIT smoking. This one is only for if you are a smoker. Smoking just one cigarette per day doubles your risk of heart disease.

and most importantly

4. Remember to look after your whole body. Yes, that means not just your physical health but your mental health as well. Make sure you take time out of your day to participate in at least one leisure activity whether it be reading a book before bed, going for a walk, doing some colouring in or listening to music.

What do you do to look after your heart?

For more information and ways you can look after your heart visit https://www.world-heart-federation.org/world-heart-day/look-after-your-heart/

Happy World Heart Day everyone!

New Mad Mattr dough

It’s like a combination of Kinetic sand and play dough except it doesn’t make as much of a mess as play dough as it’s not as sticky and it isn’t as soft as Kinetic sand so you can actually mould things from it. Available in six different colours; red, pink, purple, blue, green and teal you can squeeze it, stick your finger through it and watch it fall apart (crumble), pull it,  stretch it, mould it into shapes, use it to build things, mix colours together or even flatten it out and cut out shapes from it like play dough.  It’s very therapeutic and one of those children’s products that is heaps of fun even for adults.

Some of the many things Mad Mattr can be used for include:

  • Mad Mattr can be used as a fun way to strengthen hand muscles, fingers and wrists.
  • Promotes development of fine motor skills.
  • Provides sensory exploration.
  • Can be used for relaxtion.
  • Encourages creativity and imagination.
  • Promotes cognition when used to build and create things.

Check out this video at Relevant Play! http://www.relevantplay.com/MadMattr/

Image and videos from Relevant play (2018). [Website], Retrieved from http://www.relevantplay.com/MadMattr/

Roald Dahl Day

So Thursday 13th September also happens to be Roald Dahl Day as Heather and Dizzy from dinosaursdonkeysandMS reminded me. You may have read Charlie and the Chocolate Factory, Charlie and the Great Glass Elevator, George’s Marvellous Medicine, Fantastic Mr Fox, James and The Giant Peach, Matilda or the BFG just to name a few of the many Roald Dahl Books.

So what better way to celebrate than to share one of my favourite Roald Dahl quotes and start a new blogger competition…the wierd word competition. Sorry no prizes, only recognition on my blog. The rules are simple, post your weird word below in the comments or start a new post on your blog. Mention my wierd word competition, thank whoever it is for nominating you to participate, then nominate one other blogger.I’m going to nominate Alyssa from fightmsdaily and Heather from dinosaursdonkeysandms because she and Dizzy reminded me about this day. I’d also like to know which Roald Dahl Book is your favourite? As you would know if you’ve ever read a book by Roald Dahl her comes up with some pretty strange words like snozzbangers and wangdoodles. Speaking of weird words. I’d love to have a competition as to who can make up the weirdest word with the best definition. To start off I’ll start by sharing my weird word… vovered. Vovered is when you’re covered in a tinkerbell mess. aka. A shower of Glitter. I actually discovered it by accident when I made a typo instead of the word covered I wrote vovered.

Roald Dahl Quote.jpg

Happy Roald Dahl Day! And may you all be vovered.

Today is R U OK? Day

Today is R U OK? Day. Everyone has bad days but for those of us who live with chronic illness we all know some days are tougher than others.

Firstly, before you check in with others, check in with yourself. Are you OK? Then remember to check in with your loved ones and those around you!

It only takes four simple steps. Be sure to listen and not to judge and if someone is going through a difficult time and isn’t OK then show your support and let them know you are there if they would like to talk.

RUOK questionsruokday

You can ask these same questions with children but rather than asking them if they’re OK by instead asking them how their day was at school or what they did today.

I was lucky enough to walk into the workplace today to find this feast on the table for R U OK  Day.  I am a a foodie.

But just because today is Are you OK day, that doesn’t mean you shouldn’t ask the question every day. Everyday can be R U OK Day if you choose. It is important to check in with our loved ones throughout the year to see how they’re going and let them know we’re thinking of them.To all of the chronic illness bloggers out there and to anyone else who may be going through a difficult time you are in my thoughts and I am sending love and support. I hope you are all well.  🙂 And remember if you are in need of support, don’t be afraid to reach out. You are not weak, taking the next step and seeking support is BRAVE and COURAGEOUS.

 

Midweek Motivation

Last week (3-9th) September was National Stroke Awareness Week  and I was fortunate enough to attend a forum where I learnt many interesting things and met so many brave Stroke survivors and carers. I only wish there was one out there in my country for my conditions where I could meet people like me. One of the presenters who really stood out to me was a mother whose daughter suffered a stroke when in utero and whose presentation brought me to tears, included this quote in their presentation by Erin Hanson. Today is an extremely difficult day for me  and I will need all the support, love, positivity and encouragement I can get and so I just wanted to share this quote with you all. I think this quote speaks for itself.

What if I fall Oh but darling what if I fly

We all have  bad days where we feel like giving up and falling feels like the only option but what if we could all fly? Often we just go straight to the negative and rather than thinking about all the good what ifs like what if today is going to actually be a good day?  What if we in fact don’t fail but have fun? What if something good is actually going to happen?  We think of all of the things that could possibly go wrong. No matter how small our achievements are, take the time to celebrate every small step. And remember even if we do fall, we are only human and we can pick up the pieces, get back up again and try again. We can’t leap before we take a step and we can’t fly before we leap. Think I CAN do this.

Please keep me in your thoughts. Xx