Saturday Submissions – With Caroline from Living With PoTS!

Hi everyone! I’m Caroline, I’m a 21-year-old student, blogging about life with a chronic illness. You can find me on Twitter , The Mighty , and at my blog Living With PoTS


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Whilst not yet diagnosed, I’ve been suffering from PoTS symptoms for around 7 years, which have dramatically worsened over the last few years. My main symptoms are severe dizziness and fatigue when standing, as well as joint pain (which is probably related to some other undiagnosed condition). Recently, I made the decision to use a wheelchair for the first time, which was a pretty big decision and something I want to talk about.

I want to start off this post by saying that choosing how and when to use a wheelchair is an incredibly personal decision, and this is only my own experience.

 

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Why a wheelchair?

Ever since I realised that there was a genuine health reason for me being in so much pain, and not felt like I was being lazy, I’ve been trying to work around it. Whilst I can manage my day-to-day life relatively well, trips away are a massive struggle. Last month, I had what should have been an amazing trip to London planned for my best friend’s 21st birthday, two whole days of sightseeing, shopping and shows. Obviously, with it being such an important birthday, I wanted to make sure she had an amazing time, and that me being tired and in pain didn’t get in the way.

Worries

It’s safe to say, I had a lot of worries about starting to use a wheelchair. The practicalities: how do you borrow one? How do you steer it? Where are the brakes? The stigma: what will people think when I ask for one? And when I’m able to stand up out of the chair? And personally, admitting to myself that it was something that I needed, on occasions, and that it wasn’t a big deal, that using a wheelchair for a special occasion like this wasn’t making a commitment for the rest of my life.

How did it go?

After chatting to a few friends, and browsing museums to find one that hired wheelchairs, I decided to go for it, and on arrival at the Natural History Museum I went to the cloakroom, signed a disclaimer, and 30 seconds later was equipped with a wheelchair. After a bit of figuring out how to fit me, my coat and way too many shopping bags in it, we were go.

I started off being pushed, but the lack of control really bothered me, so I decided I was going to push myself which worked much better (after a few incidents getting around corners anyway!). Whilst my arms were so sore the next day, I think that’s something I’d get used to.

Practically, it was better than I expected. People were on the whole really polite, happy to move out of the way, and no-one I noticed gave me any weird looks or anything. In terms of the museum it was hard going; I couldn’t see quite a lot of the displays, and trying to find lifts was mission impossible.

Overall though, it’s a big thumbs up for the wheelchair. Whilst it is not something I would want (or need) to use every day at this point, for occasions like this, where I’m trying to pack a lot of activities into a few days, it makes things so much easier. It means I can do so much more, without the repercussions of the next few days, and more importantly (for me at least), it means I’m not impacting on others as much.

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Thank you so very much to Caroline for providing todays Saturday Submissions!
Do you relate to how she felt?
If you use a wheelchair, did you find the initial transfer to using the device difficult?

Please leave a comment and let Caroline know what you think, be sure to check out her social media links above and make a new connection! 🙂

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

All you have to do is tell us a little about yourself and write a blog post (Any Wordcount) in relation to your chronic illness, or how a relation/friend/patient with an illness affects or interacts with you, etc. 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 just be sure to put your details in the email so I can respond to you personally 🙂

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

Looking for Guest Bloggers Please!

guest-blogging

 

Hi folks,

I am still on the lookout for guest posters for this little bloggie, I would appreciate hearing back from anyone with or in contact with a chronic illness. Patients, Partners, Family, Friends, Carers, Therapists, Doctors, anyone who would like to take part. If you know of anyone who might like to, please share this with them, thank you!

It can be completely anonymous or open, whichever you prefer, please just follow the steps below to take part and I really look forward to hearing from you 🙂

Also, a very BIG Thank You to those who have submitted something already, I hugely appreciate the efforts, thank you 🙂

——— Wanna Be Part of Guest Blog Submissions?———-

All you have to do is tell us a little about yourself and write a blog post (Any Wordcount) in relation to your chronic illness, or how a relation/friend/patient with an illness affects or interacts with you, etc. 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 just be sure to put your details in the email so I can respond to you personally 🙂

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

 

 

Lette 🙂

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

——————————————-

A to Z of Ehlers Danlos Syndrome: A is for Autism

The A to Z of Ehlers Danlos Syndrome!
A great idea to highlight and spread awareness of EDS during May, EDS Awareness Month.

Sharing from the wonderful ‘Autistic Zebra‘ 🙂

Please be sure and click through to any other sites I may reblog, throw them some friendly support 😊💜

autisticzebra

May is Ehlers Danlos Syndrome Awareness Month. For this month, I’m goingto write an A-Z, discussing a different topic linked to EDS each day. I’m going to write about topics that effect me personally, having the Hypermobility type of EDS, so won’t be covering topics more common to the other types, such as Vascular or Classical EDS, though there may be topics which overlap these types. So, to kick things off, I present:

A is for AUTISM:

Autism is a neurological difference that is linked to EDS. Research on the links is ongoing, with not much published on it yet. Anecdotally, however, the link does seem to be there. A lot of parents with EDS have autistic children. Lots of autistic people I know have also been diagnosed with EDS or Hypermobility Syndrome. And lots more are beginning to assess their various symptoms and are starting towards the route to…

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Show Your Stripes for Rare Disease Day! – Guest Post

11016369_10205031264693934_216013319_nIn 2012, Yvonne Evans interviewed a woman from Kinsale about her disease, Ehlers Danlos Syndrome (EDS). Little did she know that the answers she has been searching for about her own illness had landed right on her lap.

There is an old saying within the medical profession: ‘When you hear hoof beats, think of horses, not zebras’. Dr Woodward, an American professor at the University of Maryland would instruct his medical interns to practice as the phrase suggests. You see, horses are common in Maryland, while zebras would have been relatively rare during the 1940s. So, one would assume that, upon hearing the sound of trotting hooves, that a horse would be the most likely explanation. I however, am a zebra.

11039423_10205031264493929_1594412320_nMy symptoms started as a child but and really got bad by the time I was 14. Gradually, my knees began to hurt, especially when it was cold. By 16, it was unbearable. A few years later, the pain spread to my hips and ankles. The joints began to make popping and clicking noises. Frustratingly, blood tests for arthritis and x-rays all came up clear. Then I began to have problems with my stomach and experiencing fatigue. In college, I was vomiting almost everyday for a year and napped frequently. The fatigue hasn’t stopped to this day.

A colonoscopy and endoscopy came up clear but my GP said it was irritable bowel syndrome. Some days, my abdomen swells so much that I look pregnant. After my son was born, five years ago, I had no choice but to fight the fatigue. I am not anaemic, but as the months have turned into years, the tiredness has become overwhelming. The smallest of chores around the house are exhausting for me. Some days, I don’t even have the energy to get dressed and face the world.

People commented on this and called me lazy. Without a diagnosis, I couldn’t give them a credible answer as to why I was sitting in my pajamas in the middle of the afternoon. Of course, I did have my good days, especially during the summer when the weather was warm and my joints didn’t hurt as much. But, while my joints were feeling ok, I was feeling dizzy and faint, more fatigued and irritable. Cold hurt me, heat made me faint, there was no relief.

For the past two years, the joint pain has spread to affect my hands and wrists, my back and neck too. If I move a certain way, a joint may slide out and back in again.

But things changed for me in 2012 when I interviewed a young woman who had connective tissue disorder called Ehlers Danlos Syndrome (EDS). When she explained her symptoms, I wondered did I have something similar? I thought no more of it, and we kept in touch. In the meantime I was put on a public waiting list to see a rheumatologist. But then, one day in 2013, I was speaking on the phone and then everything started to go black; I felt hot, my heart was racing, I felt weak. I ran to the bathroom to lie down on the cool floor. This gave me such a fright that I decided I wasn’t prepared to wait two years to see a public consultant. I had to know what was wrong with me. I was going to get answers.

I organised a private appointment with a physiotherapist who confirmed that I was hypermobile. The pieces of the puzzle were coming together. Then I arranged an appointment with a rheumatologist in Cork, with an interest in EDS and Hypermobility Syndrome. Two weeks later, the doctor confirmed that I had Hypermobility Ehlers Danlos Syndrome. I was also diagnosed with Dysautonomia but unfortunately; I am still awaiting a proper diagnosis and treatment for that.

There is a good chance I will need to travel to London for autonomic testing. I cried with relief that finally, I could put a name to what I had. After a decade of tests and scans I had taken the reins myself and finally got my diagnosis with just two appointments.

The majority of doctors in Ireland are unfamiliar with EDS and there are no specialists available here in Ireland. If there were more awareness and training, I may have been diagnosed much earlier in my life. I was on a high the day I got my diagnosis, but the next I had to face the harsh reality that I have a rare, lifelong and progressive disease. Luckily, my EDS is quite mild in comparison to many of my peers and hopefully more awareness will mean better treatment for me, and my fellow zebras in years to come.

The biggest help for me through all of this has been the ‘EDS Awareness Ireland Support Group‘ and ‘Irish Dysautonomia Awareness’ on Facebook and speaking to other people with EDS and the secondary conditions that go with it. Both groups are enormously supportive and concerned. Many of them have EDS and Dysautonomia that affects them so much they are in and out of hospital. Yet, everybody is equal in the group and no matter how trivial I thought my problems were in comparison, the support has been immense.

Hopefully, together, we can raise awareness about this debilitating disease and bring about an improvement in the services available. For more information about Ehlers Danlos Syndrome, go to ‘EDS Awareness Ireland,’ on Facebook. Please also give ‘Irish Dysautonomia Awareness’ your support and like them on Facebook too. 😉