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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Happy New Year 2016!

latest-happy-new-year-2016-photos

Hey everyone HAPPY NEW YEAR!

I wanted to take this opportunity to thank everyone who reads and interacts with this page, and also to say that I am sorry I have been distant as of late but as usual I can only blame the illness with the physical restraints it causes when I have bad days (which are very frequent) and the lack of motivation it causes too!

I was admitted to hospital in October and December just gone and since coming home I haven’t been able to sit upright at the desktop for any length of time to update you all and for some reason my WordPress blog app on my phone wont work anymore, I think it needs an update or something! I also have regular hospital appointments starting from tomorrow until May so this year is busy with doctors and consultants already! I will update you on all of this in the next week 🙂

Anyhow, I am going to be making a little routine in my week going forward to allow for more regular updates and scheduled posts that can be planned in advance. That’s the plan at least!

Some of the more detailed researched posts I am thinking of adding in the next few months include:

POTS Tips: Updated Life Tips to make living with Dysautonomia and Pots a little easier.

Vaccines and Pots – Is there any connection? – an in-depth look at the real science, possibilities and organisations involved.

Can Diet Affect/Help With Your Symptoms? – Discussing diets and intolerance’s involved in our health issues.

Does Weather Really Affect Your Symptoms or is it  a load of Woo? – A look at the science behind how weather and air pressure may affect some peoples symptoms, and here’s why!

How Best to Navigate The Health Services System in Ireland – With many, many updated links and resources.

Exercise and Physio for those with EDS or Dysautonomia – A post from an experienced Fitness Instructor who also has EDS and POTS on how best to exercise, stretch and care for your body with these conditions and when is best not to exercise altogether! ( Ok I wont pull the wool over your eyes, it is me, but I actually do hold an Irish fitness Instructors qualification and have more than 10 years experience in the gym and exercise industry in Ireland believe it or not – yes, that was before anyone realised I had EDS! I will explain all in the post!)

If you would like to add or discuss your experiences or opinions in relation to any of the blog posts above, please add a comment or get in touch via any of the ways below and I will be sure to add the information required or contributed to the posts 🙂

Please bear with me, there is only one of me and as always, if anyone would like to help, suggest topics or discussions, contribute or add anything to the blog, please just get in touch anytime and I would be delighted to add your entry to the blog 🙂 The email as always is irishpotsies@gmail.com and the Facebook Page and Twitter are very regularly updated too so lots of ways to get in contact 🙂

Again, thanks to all of you for your support throughout 2015 and the previous years since this humble little blog started in 2011, I greatly appreciate it 🙂

Lette – The Fainting Goat – xxx

Youtube Live Chat (Just an Idea!)

Hi folks,

This is only a seed of a thought at the minute, but I was wondering…

If I were to do maybe a monthly live Youtube chat, where I answer all your questions after researching proper answers and I will provide links and references for further reading etc. Or perhaps have guests on in relation to Dysautonomia and EDS etc. if I can find them, would you watch it?

How it works is,

  • I provide a date and time that suits the masses using a blog post or Facebook Event Page.
  • You post questions into the post for me (Or possible guest) to research to give you the best possible sourced answer I can. (I won’t accept made up or woo-woo answers, my peeps only get the best!)
  • I research all the answers to the questions and on the live chat date I will present them while possibly sharing my desktop screen.
  • You get your sourced answers and I learn also along the way, not to mention you might get to watch my ugly mug on the video too! :p
  • There is a live typed chat that people can take part in during the live feed and I will do my best to involve and interact with everyone.

That’s the idea… Do you think you would watch and take part in something like that? I would like to be sure I would have viewers before I put the effort in! 🙂

Please let me know below, Thank you 🙂

Extensive Dysautonomia Links

I am working on a couple of blogs at the moment including a review of my power wheelchair but that is being reviewed by the Occupational Therapist and the Wheelchair Rep. Next week so I will wait till after that to review it properly as many things on the chair need to be adjusted.

I am also working on a blog about how weather and air pressure affects people with Dysautonomia but I want to do a bit further research before I post it.

So, in the mean time, I thought I would share THIS!

An amazingly extensive list of Dysautonomia links over on the DINET Site. It includes links about dysautonomia and:

Anaesthesia
Baroreflex
Catecholamines
Chiari malformation/spinal cord involvementChronic fatigue syndrome
Dental Considerations
Diabetes and autonomic neuropathy
Disability
Ehlers-Danlos Syndrome (Joint Hypermobility Syndrome)
Exercise
Fainting
Fibromyalgia
Hormones
Hypovolemia
Lipodystrophy
Magnesium
Medications/Treatments
Mitochondrial disease and dysautonomia
Mitral valve prolapse
Multiple system atrophy/shy-drager syndrome
Norepinephrine transporter
The Nutcracker phenomenon
Outlook
Orthostatic hypotension
Paraneoplastic syndromes
Pheochromocytoma
Porphyria
Postural orthostatic tachycardia syndrome/orthostatic intolerance
Pregnancy
Research Studies
Support
Syringomyelia
Tests
and… Videos!

Be sure to check it out HERE and check out their main pages too, it is an excellent site and resource of information 🙂

Vanos Excel G3 Light Wheelchair Review

Here is the latest video update over on the Irish Dysautonomia Awareness Youtube Channel, I hope you enjoy 🙂

 

Drivers and Passangers With Disabilities Tax Relief Scheme

How awkward does something have to be? when it comes to the social welfare they don’t make it easy, that’s for sure.

We have done just about everything we have needed to do since I have become disabled, in order to settle into the new lifestyle that we have been forced into. However this Drivers and Passengers with Disabilities scheme, is the biggest ‘scheme’ I have ever come across!

For nearly a year now we have been ringing Monaghan (the office where they rule all the roost with regards to this and other disabilities schemes) and we have been told time and again how to get on the scheme, but each time the story has changed ever so slightly and we have been left confused. Now we have been told that our car, which was inherited through the family, is not allowed on the scheme as we are not the ‘original’ owners who purchased the car, even though the car was purchased by us from the rest of the family! Cars of inheritance or gifts are simply not allowed on the scheme. No explanation, just cause!

Long story short we will need to change our car, trade it in against a car of equal worth with a modification in order to be on this scheme. That is just bothersome for the sake of it!

I do have a Primary Medical Certificate which should make this process straight forward, but, as you can see below in the information, it is complicated and unnecessary and it means we have to trade our car, which is something we don’t want to have to do nor have the money for, so unless it is a straight swap for something, we won’t be doing it :/

Another thing is we will have to modify the car in order to be on the scheme, this modification has to be 10% of the cost of the car. This part pisses me off because I know people who have gotten brand new cars in the last 2 years and only got a steering knob put on the car, at the cost of about €20, this 10% thing is only recent meaning those who have already availed of the minimum modification requirement can carry it over on to their new cars without the 10% modification needing to be done to their car, but for us new applicants, we have to pay the full penance! and also the Mobility allowance is now gone, with absolutely no replacement, so there is no help at all for people like us who want to get on the scheme.

It is just not fair.

Here is how the scheme works:

– All information taken from Citizens Information site – 28th June 2014

Tax relief for disabled drivers and disabled passengers:

Information

The Disabled Drivers and Disabled Passengers Scheme provides a range of tax reliefs linked to the purchase and use of vehicles by disabled drivers and disabled passengers in Ireland. The rules of the scheme are set out in the Disabled Drivers and Disabled Passengers (Tax Concessions) Regulations 1994 (SI No. 353/1994) as amended. Under the terms of the scheme, you can claim remission or repayment of vehicle registration tax (VRT), repayment of value-added tax (VAT) on the purchase of a vehicle and repayment of VAT on the cost of adapting a vehicle, up to a maximum of €9,525 for a disabled driver and €15,875 for a disabled passenger.

Relief is limited to a vehicle that has been specially constructed or adapted for use by a disabled person and that has an engine size of less than 2,000cc in the case of the driver and 4,000cc in the case of the passenger.

If you qualify for tax relief under the scheme, you can also claim repayment of excise duty on fuel used in your vehicle for the transport of a disabled person, up to a maximum of 600 gallons per year. In addition, if you qualify under the scheme, your vehicle may be exempt from the payment of annual road tax on application to a Motor Tax Office.

Vehicles adapted for disabled drivers or passengers are entitled to exemption from toll road fees. Toll road operators issue special passes which are recognised by all other toll road operators and which allow such vehicles pass through the tolls without paying. To obtain a special pass apply to your nearest toll road operator (pdf).

 

Rules

In order to qualify for tax relief under the scheme, you must have a valid Primary Medical Certificate. A Primary Medical Certificate confirms you are severely and permanently disabled and:

 

  • Are completely or almost completely without the use of both legs or
  • Are completely without the use of one of your legs and almost completely without the use of the other leg to the extent that you are severely restricted as regards movement in your legs or
  • Are without both hands or both arms or
  • Are without one or both legs or
  • Are completely or almost completely without the use of both hands or arms and completely or almost completely without the use of one leg or
  • Have the medical condition of dwarfism and serious difficulties of movement of the legs

Local Health Offices of the Health Service Executive (HSE) process applications for a Primary Medical Certificate. If the HSE refuses your application for a Primary Medical Certificate, you may appeal the refusal to the Disabled Drivers Medical Board of Appeal, National Rehabilitation Hospital, Rochestown Avenue, Dun Laoghaire, Co. Dublin.

 

How to apply

Download and complete Form DD1 (pdf). This application form is also available from the Central Repayments Office.

 

Applying for remission of VRT

You need to send the following documents to the Central Repayments Office

  • Form DD1
  • The original Primary Medical Certificate if you are claiming for the first time. You must apply to your Health Service Executive (HSE) Area for an application form for a Primary Medical Certificate – obtain an application form from your Local Health Office in the HSE. Complete the application form and return it to the Senior Medical Officer of the Local Health Office. The Senior Medical Officer then appoints a HSE doctor to visit your home and carry out an assessment of the level of your disability. If you satisfy the requirements, you are granted a Primary Medical Certificate by the HSE.

If your application for remission of VRT is acceptable, you will be sent a Letter of Authorisation which authorises you to purchase a vehicle. When you have chosen the vehicle, the vehicle identification number (VIN) must be submitted to the Central Repayments Office on the form issued to you with the Letter of Authorisation. You will be issued with an Exemption Notification that allows the vehicle to be registered exempt of VRT at the NCTS centre.

 

When you have bought the vehicle, you must obtain the following documents

 

  • An original invoice from the dealer showing the full purchase particulars of the vehicle and verifying that payment of the amount due has been made in full
  • An original invoice from the person who adapted the vehicle, showing that payment has been made in full. The invoice must show full details of the adaptations to the vehicle and the VAT charged.
  • From 29 April 2012 a new vehicle that is adapted requires an Individual Vehicle Approval (IVA) certificate from the National Standards Authority of Ireland (NSAI)

To register the vehicle at the NCTS centre the dealer must submit these documents, along with the Letter of Authorisation, the Exemption Notification and the completed Form DD1. If the documentation is in order, the NCTS will register the vehicle without charging VRT.

When the vehicle is registered, to obtain a repayment of the VAT the dealer should submit the Letter of Authorisation, the Exemption Notification and the invoices mentioned above to the Central Repayments Office.

 

Applying for repayment of VRT and VAT

If VRT has not been remitted and you want to claim repayment of VRT and VAT, you need to submit the following documents to the Central Repayments Office.

 

  • A fully completed Application Form DD1
  • The original Primary Medical Certificate if you are claiming for the first time.
  • An original invoice from the dealer showing the full purchase particulars of the vehicle and VAT charged and showing that payment of the amount due has been made in full
  • An original invoice from the person who adapted the vehicle, indicating that payment has been made in full. This invoice should set out the full details of the adaptations and the VAT charged.
  • The vehicle’s Vehicle Registration Certificate.

If the vehicle has been registered before, there is no need to go through the usual change of ownership procedure as this will automatically happen when the vehicle is taxed exempt at the Motor Tax Office.

If your claim is accepted you are issued with a Certificate of Approval by the Central Repayments Office which you should submit to your local Motor Tax Office. You will be issued with a new Vehicle Registration Certificate which you should send to the Central Repayments Office where it will be endorsed to the effect that the vehicle was purchased under the Disabled Drivers and Passengers Scheme and cannot be disposed of for two years. This certificate will be returned to you immediately.

If the vehicle has previously qualified for tax relief under the scheme, the maximum amount of tax relief that can be claimed for the vehicle will probably have already been claimed. However, you should still submit form DD1 with all the required documentation as listed above.

 

Applying for refund of excise duty on fuel

Claims for repayment of excise duty on fuel should be made once a year on Form DD3 (pdf) which will be automatically sent to you by the Central Repayments Office.

You need to keep receipts for the fuel purchased for two years, but do not have to submit them with your claim. You have to estimate the percentage of that fuel that is used for your own transport or the transport of a disabled passenger.

 

Applying for exemption from motor tax

If your vehicle is being registered in Ireland for the first time, you need to present your Vehicle Registration Certificate to your local Motor Taxation Office.

If your vehicle was previously registered in Ireland before you entered the scheme, you will be given a Certificate of Approval by the Central Repayments Office, which you should present at your Motor Taxation Office.

 

Where To Apply

You can find further information on the tax relief scheme (pdf) on the Revenue Commissioners’ website

 

Central Repayments Office

Office of the Revenue Commissioners
M: TEK II Building

Armagh Road
Monaghan
Ireland

Tel:+353 (0)47 62100
Locall:1890 606061
Homepage: http://www.revenue.ie
Email: cromon@revenue.ie

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Symptoms Worse Before Your Period?

I will first apologise to the guys for this one, I usually don’t do gender specific posts, but this one is for those of you who have a, ‘Time of The Month’! 🙂

Recently I have noticed in the ‘WordPress dashboard’, the stats of this blog, that, one of the search terms that lead people to this blog is: ‘Pots worse before period’. So I thought it would be a good idea to do a post for people who have been looking for it.

YES!! in my own experience my symptoms nearly always get worse before my period/menstrual cycle. Any of the symptoms I usually have like, Low Blood Pressure, dizziness, nausea, fatigue and pain seem amplified the week prior and even worse during my period.

It kind of works out that I will have 2 relatively good weeks in the month and 2 where I am extra sickly. It is frustrating as hell but I have kind of gotten used to it now and just go with it. I do what I can when I can, but I have become extra unsocial as a result, I can’t commit to appointments with people these days because my health sometimes will go of a morning, “hey f*ck you, we aint doing anything today, today you stay in bed and be miserable, yeaaaah!” …screw you Autonomic Nervous System! :p

Seriously though, us potsie ladies are not alone. Most women with any sort of Dysautonomia report their symptoms getting worse during their period. I have done a quick run around the interwebs and it seems that the changes in your hormones around this time is what kicks your messed up Autonomic Nervous System reactions into high gear.

I have found an excellent description of what happens your body during your menstrual  cycle and with Dysautonomia, over on Santa Maria Medicine.

menstrual+cycle+Pots+Dysautonomia+Symptoms

What Happens During the Menstrual Cycle in POTS Patients?

 

The menstrual cycle takes a toll on patients with Postural Orthostatic Tachycardia. It’s during the actual 5-7 day bleeding phase that patients will feel the acute loss of blood volume which, of course, will make them feel drained and exacerbate all of their usual symptoms—including, in particular, fatigue.

The menstrual cycle revolves around changes in hormones which are aimed at preparing an egg for maturation and release. It’s also a time to prepare the uterine lining to accept the fertilized egg and allow it to develop. When your bleeding stops, your estrogen levels will quickly start rising, as well as your FSH (Follicle Stimulating Hormone)—which is done in order to encourage one of the eggs to grow. This part of the process peaks at about day 14 of your cycle and is called ovulation. It’s at this time in your cycle that progesterone levels will begin to quickly raise, and the egg has approximately 48 hours to become fertilized.

It is AFTER the phase of ovulation has passed that blood levels of estrogen and progesterone are rapidly rising and this is what seems to contribute to better postural blood pressure control—lessened tachycardia and overall energy.

Say the egg is not fertilized during this period—and instead the two main hormones (estrogen and progesterone) rapidly and suddenly drop straight down to almost nothing. The uterus sheds its lining (otherwise known as menses or a “period”) and this is when POTs patients may feel their worst.

 

Be sure to head on over to the Santa Maria Medicine blog for the full post and for tips to what helps relieve your symptoms.

In May 2009 a study was done which looked at the link between women’s monthly cycle and POTs called:

Menstrual Cycle Affects Renal-Adrenal and Hemodynamic Responses During Prolonged Standing in the Postural Orthostatic Tachycardia Syndrome
By: by Fu, VanGundy, Shibata, Auchus, Williams and Levine

The study looks at the difference in the Mid-Luteal Phase vs the Follicular phase of our menstural cycle and how it may affect us.

You can get a lovely break down of what the study means over on the Pots and OI recovery Blog, be sure to check it out 🙂

For me, Lifestyle choices are everything to how I feel during the month. If I eat any sort of Gluten, thats it I am bloated and out of sorts for at least two days so now I have gone completely Gluten free and have noticed a vast improvement, including with my period symptoms.

A hot water bottle is always a dear friend during this time, though as with all Potsies, be careful not to get too hot or it will make you feel worse, but putting heat on your tummy or sore back during this time is always a comfort.

That… and Chocolate! 😉