Saturday Submissions – Switching Up My Life: How Gaming Helps Me Cope With Disability

Today’s ‘Saturday Submissions‘ guest post comes from the lovely Melissa over on the blog ‘AutisticZebra

You can also find her over on Twitter by the handle @TheAutisticZebra

Here, in the very first of our ‘Saturday Submissions‘, Melissa speaks about how Gaming has helped her to cope with her Chronic illness. If anyone knows me, they’ll know how much I love gaming, especially Nintendo, so I am quite jealous as well as being delighted for her with what she just picked up for herself and this post seems very appropriate to be the first of the Saturday Submissions!

Please enjoy and if you would like to take part in Saturday Submissions, please see below the post for further info.

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Switching Up My Life: How Gaming Helps Me Cope With Disability

“I turn forty next week. And as an early birthday present, I have just bought myself a Nintendo Switch. I will, of course, share it with the kids, but even if I didn’t have any kids, I’d have bought it. I never thought I’d get into gaming in my thirties, but here I am.

The Nintendo Switch box, plus The Legend of Zelda Breath of the Wild game.

I was never that into gaming as a child. We didn’t have a console and had limited access to games. The only game my dad ever bought us was a PC chess game. Somehow we ended up with two other games, Prince of Persia and one I think was called Leisuresuit Larry in the Land of The Lounge Lizards! Oh, and Tetris. And Solitare. So, a deprived childhood.

Original Donkey Kong Game

Original Donkey Kong Game

On the odd occasion that I’d be visiting a house where video games were played, I’d do my best to join in. This was how I got to experience Donkey Kong and a few racing games. And I did terribly. I could not understand the rules or controls or stand not doing that well. And being teased about it. And yet, I loved watching the others play. I admired the graphics and everything else that went into the games. I just thought they weren’t for me.

Nintendo Wii

Nintendo Wii

And then, in 2011, when I was the grand old age of 34, my son won a Nintendo Wii in the school Christmas raffle. He was four, and as he has since proclaimed: “that day changed my life forever”. He’s not the only one. We have since moved on to the Wii U, as well as two 3DS handheld consoles, and a laptop bought just for gaming.

Playing Life in Hard Mode!

Playing Life in Hard Mode!

The arrival of video games into my life happened to coincide with when my health started to go seriously downhill. And I discovered that video games are the perfect accompaniment to days spent unable to get off the sofa. They provide the ultimate distraction. On days that I can’t physically play them, I watch the kids play them and that helps with the pain as well.  They help keep my brain sharp. They are a fantastic way to bond with the kids, to enter their world. Especially as both my kids are completely obsessed about video games and hardly talk about anything else. It’s a real advantage to know what they are talking about.

Original Nintendo Consoles With Games

Original Nintendo Consoles With Games

And so, to put it mildly, I am hooked. I told my kids that my ultimate life goal is to play every game that Nintendo has ever released. They laughed and said it’s an impossible goal. I say nothing is impossible, and at least it gives me something to aim for!

Nintendo Switch Logo

Nintendo Switch Logo

And so, this morning, I picked up the just-released Nintendo Switch. To say I’m excited would be an understatement. I actually feel happy, rejuvenated, really alive. My pain has melted into the background as the excitement and adrenaline is kicking in. And as I wait here for the kids to get home from school so we can have a great Unboxing Ceremony, I can’t help reflecting on how gaming has allowed me to cope so much better with being disabled. And I’m sure I’m not the only one!”

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Thanks so very much to Melissa from The Autistic Zebra for giving us our first post for our Saturday Submissions guest blog post.

How do you distract yourself from your chronic illness? What hobbies and pass-times do you enjoy? Are you a gamer too?
Please leave a comment of advice or help for Melissa and others in your situation. Share your thoughts on how to take your mind off your illness.

Be sure to check out Melissa’s links above and show her some support 🙂

————- Wanna Be Part of Saturday Submissions? ————-

All you have to do is tell us a little about yourself and write a blog post in relation to your chronic illness, all welcome!

You can include photos (preferably your own, if found online be sure to add links to where you found them)

Be sure to add links to your social media accounts so people can link back to you OR You can write it anonymously if you like
🙂

You can send your submissions to: irishpotsies@gmail.com

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EDS Awareness Month – 2016

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Courtesy of Google Images

 

It’s Sunday the 1st of May 2016 and so kicks off Ehlers Danlos Syndrome (EDS) Awareness Month.

This year is pretty special in that there is a, now Sold Out, International EDS Symposium in New York, 3 – 6th May, where a host of working groups of some of the world’s leading Specialist Consultants, Doctors and many others, get together and will reclassify the diagnostic criteria for all Ehlers Danlos types.

I will let the amazing organisers, The Ehlers Danlos Society, tell you all about it, be sure to check out their website right ‘Here

” The Ehlers-Danlos Society is proud to announce an international symposium on Ehlers-Danlos syndrome in New York City, May 3–6, 2016, generously funded by EDS UK and the Ehlers-Danlos National Foundation. The symposium is being held in alliance with the EDS consortium in Ghent and medical professionals internationally.

The primary goal is to reclassify the diagnostic criteria for all the types of Ehlers-Danlos syndrome. The symposium is also purposed with producing guidelines for medical professionals to use once a diagnosis has been reached as a universal guide for management.

We are excited to be working on a project that will change the lives of those with EDS. Updated diagnostic criteria, published in medical journals across the world, will increase and improve diagnosis, and the management guidelines will finally ensure that there is an internationally agreed-on treatment plan that doctors will be unable to ignore. Finally our community will have the foundations we need to ensure more research, funding and recognition.

Very generous private donations have allowed us to get the symposium underway. We are extremely grateful for the support, but more needs to be raised to make this most important event a complete success. Help us “Make our Invisible Visible” by donating to this project; anything you can give will be very much appreciated. To donate, please visit EDS UK or EDNF. “

This is very exciting stuff but I’d say it will take a long time for any of it to filter into the Irish Health System, but we have a few excellent EDS/HMS, Connective Tissue and Collagen disorder related groups here in Ireland who work tirelessly to spread more awareness and the most up to date information and research. Here are the ones I am most aware of, if there are any I have missed and I’m sure there are, please, really please let me know of any more Irish related Connective Tissue groups.

Please click on the names below to be taken to these pages. Also be aware that most of these links also have Facebook and Twitter pages as well as private, closed support groups for patients and relatives be sure to ask at the links below if you are interested in joining.

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EDSAwarenessIreland 2016 EDS Awareness Month Logo 

EDS Awareness Ireland

Irish EDS & HMS

Marfan Support Group Ireland

Marfan Research Foundation Ireland

Irish EDS&HMS have a lovely page on their site giving an example of different connective tissue disorders that incorporate Hypermobility, as there are a few others besides EDS itself. Is certainly worth the quick read through. Find it , ‘Here

Only 2 weeks ago or less, Irish EDS&HMS also got the amazing opportunity to have a supporting clinician to sit on the International EDS Symposium in NY, they grabbed the opportunity, set up a fundraiser to send a medical professional from Ireland, worked incredibly hard, but unfortunately, though they got in touch with many people, they could not find someone on time to send over.

This just shows to prove how badly the medical support for EDS is here in Ireland. We have a few Consultants and Doctors with an interest, but no experts unfortunately. Hopefully this will change soon after the Symposium and EDS will be better recognised and supported here.

Thankfully though, there is another follow up conference in Baltimore in June where the findings of the NY Symposium will be formally discussed, any funds that have been collected already for the NY Symposium will be repurposed for the Baltimore conference where hopefully they can find someone in the medical community to support us with EDS.

If you would like to support the Irish EDS&HMS fund to send a medical professional to represent Irish EDSers in Baltimore then please, please donate ‘Here‘ or click on the image below.

eds

Please click to support the Irish EDS & HMS Fund to send a medical professional to represent Ireland at the Baltimore EDS Conference.

This is so very important for the future of diagnosis and treatment of EDS here in Ireland. If a medical professional can go it means the information will be translated into the HSE quicker than if Irish EDS&HMS don’t get anyone and have to try and push the information into the HSE as patients or advocates themselves, they may not be taken as seriously or the information will not be treated as urgently as it would if us EDSers have the back up of a medical professional who already works within the HSE.

For the month that’s in it, here on Irish Dysautonomia Awareness, I will do my best to post regularly, share other people’s EDS blog posts share, photos, research and anything that will help spread more Awareness of EDS throughout May.

Thank you as always for taking the time to read and if YOU would like to share anything EDS related with us, a post, story, photo, drawing, meme, video, research, ANYTHING! Please get in touch either via our email: irishpotsies@gmail.com or on the blog here directly, through Facebook, Twitter or even our YouTube channel, and I will be sure to share it on here and through the social networks.

Cheers folks, Happy EDS Awareness Month 2016, let’s make it a good one if we can 🙂

FaintingGoatEDS

Irish Dysautonomia Awareness EDS Logo Version!

Please Add Your Blog To Our Blogroll!

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Are you a blogger?
Is your blog relating to chronic illness or health & lifestyle? Would you like to have your blog added to our blog roll on the right of this page?

YEAH?!!

Then leave a brief description and a link to your bloggy in the comments below and ill get adding 🙂

Hope you are all well? 🙂

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