Meeting Prof. Qasim Aziz in London

Day: Saturday 13th May

Time and Itinerary:

5:30am – Wake up, get ready!
6:30am – Arrive at Shannon airport

6:35am – Check in
6:45am – Get Breakfast

7:00am – Board Plane with the help of Disability Services

7:15am – Flight Take Off

8:15am – Flight Land at Heathrow

8:45am – Get through security and make our way to the Heathrow Express Train

9:15am – Heathrow Express arrives at Paddington
10:30am – Hang around Paddington for a little while, get coffee

11:30am – Taxi to Consultants Appointment at The Physicians Clinic at Devonshire Street
12:15am – In appointment place, fill out forms and go into meet Prof. Qasim Aziz

Prof. Aziz was very welcoming, I found him to be thorough, interested, very educated and deeply experienced with EDS and it’s comorbidities.

I had everything written out over two A4 pages, Which he said he was delighted with and wished more people would come prepared! It had My Diagnosis, Investigations done to date, Medications, All my doctors listed, Current Symptoms etc. So he went through everything with me.

To make a long story short I was there over an hour, he didn’t rush us at all and listened to everything both my husband and I had to say about all the symptoms, pain and weightloss I have been going through with my Gastrointestinal problems.

He did a few basic tests with me while I was there and then sat me down to explain what he believes is going on with me.

He reckons I am high in ‘Histamines‘, meaning that I am all inflamed and raw throughout my body as a result it all contributes to my various symptoms even outside of gastro problems. He said that a ‘Low Histamine Diet‘, would be of huge benefit to my lifestyle for 6 months and then I can introduce other foods back into my diet.

He added things like, taking probiotics 2 to 4 times daily with the diet as well as the supplements that I may be lacking in like, Vit.C, Vit B Complex, Omega 3 and Chelated Magnesium.

He went through all my medications and changed them about as well as adding some to help my tummy. Apparently a few of the meds I am on to help my gut are in fact paralyzing it, so I have to cut back on those and my opiates as they are slowing my gut function down.

As the LowHistamine Diet is sugar free, he has also changed the Fortisip Compact calorie drinks I have been taking as he said they are full of sugar, so he changed them to E028 Cartons instead.

He mentioned that he has had people like me come into him in wheelchairs and after this diet and the other extensive recommendations he gave, they are now walking, relatively cured and back to work, living a normal life once again as the symptoms are now controlled.

He also said that everyone is different and what may work for one person may not necessarily work for me but it is certainly worth a try for 6 months at the very least.

I still have a lot of research to do to get my head around this new diet but he wrote out loads of recommendations so I know what to look for, I found him to be very helpful.

I have already received his full report, he had it emailled to me within 2 days, by the Monday after the appointment on Saturday, I thought that was very smooth and professional.

14:00pm: Finish appointment and get Taxi to the Hotel.
14:35pm: Check in and unpack and relax for a few hours to recover from the morning.
14:55pm: Pass out for around 2 hours
17:00pm: Wake up and go get some food
17:15pm: Make our way to the food plaza across from our hotel and find a sushi place

17:30pm: Too tired to deal with crowds so decide to bring sushi back to the hotel to enjoy in peace. Then just relax watching TV for the rest of the evening as we were both wrecked and I was beginning to feel really poorly after the busy day. I did ok though but we didn’t get much sleep as there was a Hen party in the room next door to us so it was really noisy at times but either way we got through the night and were up bright and early the next morning, Though we were both impossibly tired and I was barely able to move!

We get up, shower and get ready, check out of the hotel and get a Taxi to Paddington again to get the HeathrowExpress train into Heathrow Terminal 2 to catch the plane.
We grab breakfast and all goes as normal through security and onto the flight.

I always laugh at the sheer difference between the security in Heathrow compared to Shannon, Shannon are so lazy about everything and you literally walk straight through without little hassle but in Heathrow they want to examine every inch of you and your bag, which is great that they are so thorough but the difference in the two always makes me giggle.

Either way we got home safe, landed, went to collect our dog from my parents house and hit for home where we both crashed and burned pretty hard! I know right, just one day and were done, useless we are! I felt incredibly sick and my husband caught a flu on our travels so he has been hit pretty hard too since coming back. We both still haven’t recovered properly!

Next up now is to make sure my doctors and consultants here get a copy of the report he has sent me and to start a food plan to get this diet started once and for all. I am still following the Low Fodmap diet until I have everything I need to start this new Low Histamine diet.

I am looking forward to the adventure over the next 6 months or so with this new lifestyle change, and of course I will share it with all of you as I go along!

Thank you once again to everyone who made this trip possible, John Steele and Mick Dolan for organising the Bowie Gig in February which raised €2000 each for both Zondra Meaney and myself and also to everyone who contributed through my Go Fund Me Page. I am deeply appreciative to all  of you for your help and support, thank you.

Lette (Fainting Goat!) xxx

Saturday Submissions – With Denis Murphy – Parkinson’s Disease and Self Expression

Parkinson’s Disease and Self Expression.

Hi, my name is Denis Murphy and I’m from Cork city. I am currently living in a little village in county Sligo.
A major turning point in my life came in 2007 when, at the age of 48,
I was diagnosed with early stages of Parkinson’s Disease.

I would like to share some of my thoughts, feelings and emotions with you as I believe by sharing, we can better understand what we are going through,
which often seems like a lonely struggle.
It can also bring a better understanding to our family, friends and loved ones.

We can get caught up in our own worries and forget that our disease or condition not
only affects our own lives but those around us and they often feel as frustrated and
confused as we do.
I am very lucky to have such an understanding wife.
She has had M.S for over thirty years so she has great patience,
empathy and understanding through her own experiences.

As anyone who suffers from Parkinson’s Disease,or has a family member who does,
will know and understand that it brings about drastic changes, both physically and mentally.
It can be very difficult for people with Parkinson’s to
express their emotions, feelings and
to cope with their loss of power and independence.

One of the many physical conditions is called “The MASK “.
This is when the face muscles become stiff and rigid and expressionless.
The eyes appear to lose their sparkle and the mouth seems to be
permanently in a “sad” position. To the outside world this appears as if the person with Parkinson’s Disease
( or PWPD for short) is uninterested, bored and
apathetic. But behind this stern facade lies a sea of feelings and emotions.

Another symptom of Parkinson’s is a problem with vocal expression.
The voice becomes weak and we lose our strength and with
this we begin to lose confidence in ourselves.
We find it more difficult to express our opinions
and ideas in public as we struggle to be heard.
So between difficulties with facial and vocal expression
we can withdraw into ourselves and stifle our emotions.
All the more need for an outlet to express these
emotions, feelings and fears.

So many PWPD find this through art, be it painting or crafts or writing.
While Parkinson’s Disease severely restricts our physical and mental activities,
there is one advantage.
Whether it is the disease itself or the side effects of the medication
but it seems to stimulate the creative areas of the mind.
So it is only in the last two years I have begun
to compose and express my feelings through my poetry.

The main themes of my poems are about coping with Parkinson’s Disease
or any disability and the fears and hopes and also about our
relationship with Nature and with ourselves.

So enough about me, I hope that you will enjoy the
rantings and ravings of a mad Corkman and that my words may
stimulate your mind and make you think about life,
changes, and above all, appreciate this wonderful
gift we have been given.

–  c/ Denis Murphy 23 April 2017. 

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 Background information on the poem – A Parky in the Pub

This is the first poem I ever wrote about Parkinson’s. So it was an important step for me
in revealing my personal feelings and exposing my emotions publicly.
I used humour to write about a serious subject.
I do not like the term “Parky” but in this case it’s just a play on the word party.

______________________________________________

A Parky in the Pub

I’ll head down to the pub for a drink and the craíc
Sure I’ll be dead long enough on the flat of my back
So I make my way down to my local bar
On the other side of town for a chat and a jar
Some sit alone, some sit together
Talk of the match or of the weather
And after a pint or two
I need to visit the loo
So I shuffle and stagger around tables and chairs
Aware of the glances, the pity and stares
Through the noise and the clatter
The gossip and the chatter
I make my way back to my friends and my table
Slow progress but thank God I’m still able
The lads at the bar exchange advice and opinions
To the world’s problems and all their solutions
While the girls at the table share secrets and giggle
And walk pass the lads with a sway and a wiggle
The winking and nudging, the secret half glances
Some of the lads even fancy their chances
The smutty jokes and clinking glasses
The lad’s loud laughter like braying asses
As they drown out the music like crows in the nest
It’s time to go home for some peace and some rest
So I say my goodbyes in words and mumbles
And make my way home in staggers and stumbles.
The journey home seems twice as long
But I’m on the right road not gone wrong
Two steps forward one step to the side
Steady as she goes watch that stride
Left foot right foot no downward glance
Sure I might yet get to star in River Dance
– c Denis Murphy Aug 2015

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Thanks so much to Denis for todays Saturday Submissions post. Be sure to check out Denis’ own blog and make a connection. I love the poem and the play on words here to show the symptoms of Parkinson’s akin to those of being drunk. How do you feel about his poetry, does it resonate with you? Be sure to leave some feedback for Denis and share the love! 🙂

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

All you have to do is tell us a little about yourself and write a blog post (Any word count) 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

Doing a dry run test for London!

So yesterday and today I have been doing a dry run for London, meaning I have to try and stay up for at least 11 hours straight, without bad symptoms kicking in, to be able for my flights and trip to London on May 13th. Sounds easy right?… yeah! I am having trouble and I still have 3 hours to go today!! I usually last about 4 to 5 hours up before bad symptoms and desperate fatigue get in the way and I need to rest in bed again so I need to be able to do this to go on the trip.

The itinerary starts for the trip on May the 13th at getting up at 5am to check in on time and fly out for the 7:30am flight to London, then I have to make it to London and to the specialists appointment at 12:30pm and wont be at the hotel until at least 4pm, so that is 11 hours from getting up at 5am! Then and only then will I be able to rest for the first time on the trip. To anybody else this would be simple but not for me.

I got up at 9 yesterday and made it to 8pm last night, then watched The Expanse and then passed out cold in bed for a couple of hours, I really needed the sleep and symptoms had kicked in pretty bad throughout the day. I simply do not have the stamina and health like I did the first time I went to London so I decided to do another dry run of it today. I got out of bed at 10am this morning and I have to make it to 9pm tonight and I have to say I am finding it tough!

I have the tickets bought for the trip and I really don’t want to have to change or cancel them so I have to be safely able to do this without bad sickness and symptoms getting in the way.

If I do this successfully, Ill let you know, but, I am finding it hard and may have to change the itinerary around a little to be better able to compensate my physical needs, but hopefully that wont need to happen.

Here’s to the next 3 hours, let’s do this!!! (I hope!!)

Lette xxx – (Fainting Goat!)

Saturday Submissions – With Stephanie Baxter

I know, I know! I am late with this again, I am so sorry, I just couldn’t get to the computer the last few days because of the health once again. I will have to do them during the week and have them publish automatically on the Saturday morning. I will do better, I promise!

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In this weeks Saturday Submissions, we speak to a good friend of mine that I know through Facebook as ‘Tuffy’, She has a host of chronic illnesses and this is the first ever telling of her own story. So lets hear it for Tuffy and give her a warm welcome to the world of Blogging! 🙂

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Saturday Submissions With Stephanie Baxter

I’ve never told my story before because it’s weird and I’ve ended up with a bunch of rare things. People tend to get either bored or uncomfortable with the full version. I’m having to come up with some creative reasons why I’m in my wheelchair.
I’ve summed up with a Sword fight. I don’t get such a fun reaction. I’m thinking of changing it!

Anyway, I’m an old lady (48) But I’ve had issues with my heart palpation since I was 17 or so. When I was 20 I was pregnant with my first kid. The doctors wouldn’t listen to me. The palpations were so bad anywhere I would go I would have to stop everything for about a minute. Only because my heart was beating so fast and hard. Talk about a massive head rush! But I was also told they were side effects of pregnancy.

So, after a few years and another kid (I really was terrified of dying during birth) everyone around me told me I was fine & if the doctor wasn’t worried, why should I be? Ok First Lesson people!! If it’s your body and Your scared, Start Screaming for Anyone to listen!!

I put up with this for 10 Years before I Finally was diagnosed. I had to get a blood clot first, But hey, your body has to do what it Needs to do. So, I’m 27 years old and finally I’m seeing a Cardiologist. I told him that my heart goes super fast. He asked me if he could check it out. I thought, heck why not. It’s probably nothing.. Wrong Answer!! I’ve got stickers all over my chest and this readout starts printing and the Doctor gets All excited!!!

OK, Lesson number 2, When a Doctor gets Excited, be Scared.. it’s Not good News! I have an inherited disease called (WPW ) Wolff Parkinson White. My electrical pathways were kinda not working right. So it was (is) making my heart palpate.

The doctor told me I was in the 10% of the population, oh and I needed an ablation right away or I can go into a heart attack and die. Yeah, my inner voice yelled at me for listening to all those Stupid people!! Who in the end, didn’t really give a crap.

As I said, listen to yourself… so, I went in for my first ablation. Well, it ended up 2 of them because the first one didn’t quite take. After about 2 or 3 years I started taking Hawthorne supplement. Because my palpations started to come back.

Then after a few more years and a Great deal of stress I was Finally diagnosed with Pots and the WPW came Roaring back.

Now just so we all know, my paternal grandfather had wpw, they didn’t have a name for it in the 2nd war, he would be driving his supply truck in Germany and a bomb went off, he just ended up in the ditch with “heart attacks”. Which is what they were. But there was nothing they could do for him.

Personally it really sucks! Plus the pain is right Nasty. Chest pain and all. Back to me, I got to play with beta blockers & calcium Channel blockers to keep my heart under control, it just ended up confusing my heart, it was up to 300 then it would drop to 30 in just a few seconds. Thus me checking on the floor making sure it wasn’t lonely. I Never did get to pass out, but ya know.. I’m a blonde asthmatic dyslexic.. why add on to that??

The doctors got mightily concerned and decided I needed a pacemaker. My first. Wow, I got to name him. Something fancy, so I came up with Engleburt Humperdink! (You young ones look him up) it fit great!! I went in & as the doctors who have been putting in pacemakers for Decades, they put in the first lead.. that went smoothly it was the upper lead they had major issues, my heart took off and I’ve Never seen 2 Cardiologist freak out before. They couldn’t slow down my heart for anything. They never had this happen before. I suppose they finally found the relaxant. Yeah, it’s a fun story. They stapled me together and within 6 months I had to go in for another ablation.

They made me stay awake. All together in 10 years I’ve had 9 ablations. Yes, they made me stay awake during all of them (the first 2 were exception) as I’ve said I’m Really rare and different. I felt every ablation, just as I can feel my heart go into tachycardia. The last ablation they tried to make me completely dependent on my pacemaker. They were only 95% my heart still goes off but now only for a limited time. Few seconds here and there. Nothing like it did. Now I’m dealing with the pots.

But I found out more family info. My mother had the same thing, so does my niece’s (2) so now I’m finding out its genetic. When it’s genetic the symptoms are severe. Where I Live, I was told that all they can do is just treat the symptoms. I’m getting new symptoms and they are not pretty. So, we moved to a new state for better medical care. My timing couldn’t be worse, Spring is kicking me around like I’m it’s new punching bag. Being bed bound is hard enough, but now we’ve got to find another place to live and paperwork to do plus finding doctors that might just care.

If your wondering, I found Irish Dysautonomia back when I was around 30ish. A Long Time ago!! I found you guys on YouTube. It was the first time I was introduced to what the Crap I really do have. I’m thankful for the support and information that I’ve found. It’s very personal and individual in its attacks.

I’m also bipolar 2. So I’m on a few meds right now. Fludicourt for my blood pressure is the main thing, but then I’m finding out that anxiety is a symptom as well. Which having bi-polar 2 & ptsd Really makes me realize how severe this crap is. I’m very open about my mental health as well as my physical health. I’m one person, why separate? If my stress (anxiety) is affecting my heart why treat my mind and my heart seperate?

So, I’m really big on coping strategies. They Really do help. Anyway, I’m around sometimes on Facebook my name is Tuffy Baxter, I would like to be on Facebook a lot more, but it’s difficult.

Thank you for reading this blog. It is my first at telling this story. I hope if anything helped give a smile or 2. I suppose I shall see you all soon in the funnys!! 😍😍😍

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Thanks hugely to Tuffy for that Blog post, please be sure to check her out on Facebook and make a link and please leave a comment below if you relate to Tuffy’s post 🙂

——— 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 – With Evie from The Zebra Mom

I’m Evie and I come from Cork, Ireland. I’m a 29-year-old mother of two baby zebras. Alex is 7 and Olivia is almost 2. I am diagnosed with Hypermobile Ehlers Danlos Syndrome (hEDS), Orthostatic Intolerance and Vasovagal Syncope. I first heard of EDS after interviewing a young woman with EDS for the paper I used to work for. Something about this woman’s story stirred something inside me and I became passionate about raising awareness of the condition. A year later I was diagnosed with EDS. When I’m not blogging, looking after my two children or lying in bed ill, I help my husband run our wedding videography business and co-host a radio show on Saturday evenings from 7pm (Irish time) on www.clonlineradio.com.

evie blog

I write about Ehlers Danlos Syndrome an awful lot and with where I am guest posting today, I decided to focus on Dysautonomia. I recently wrote A Simple Guide to EDS on my own blog so now I’m going to write A Simple Guide to Dysautonomia. I hope that this blog will help people to understand the complexity of Dysautonomia; if they are newly diagnosed or want to help their loved ones understand. I have omitted a lot of medical jargon and used easy to understand language so this can also be accessible to young people.

POTS-for-dummies

What is Dysautonomia (DIS AUTO NOMIA)?

The Autonomic System is the system in the body responsible for every automatic thing your body does. It is responsible for the way you breathe, the way your heart beats, the way your blood pumps around your body, the way you digest your food and even the way your contractions work in child birth. The Autonomic System is very important.

So, when your Autonomic System doesn’t work correctly this is known as Dysautonomia. Dys simply means “bad”, “ill” or “abnormal”. Dysautonomia is a general term for any condition that disrupts any aspect of the autonomic system.

What causes Dysautonomia?

This is a complicated question. There are many, many reasons why Dysautonomia occurs. It can be the result of other conditions, for example it is believed that Ehlers Danlos Syndrome (AY-LERZ-DAN-LOSS-SIN-DROME) is responsible for Dysautonomia in some patients but that hasn’t been officially confirmed. It can be induced in pregnancy, can be inherited or can occur when the autonomic system has been damaged. Even being deficient in certain vitamins can trigger Dysautonomia.

How does Dysautonomia affect people?

Depending on the type of Dysautonomia you have, the symptoms vary. One of the most common types of Dysautonomia is Postural Orthostatic Tachycardia Syndrome. That’s a mouthful, right? Most people just call it POTS for short.

POTS basically means that when you are in an upright position your heart beats faster than it should (at least 30 beats faster than when a person is lying down or sitting). This can make people feel very ill. POTS can cause people to faint when they’re upright or exercising, they can also get very bad headaches, have chronic fatigue (being tired all the time) or find it difficult to sleep. A big sign of POTS is red or blue coloured skin in the legs and feet when they’re standing or sitting. This shows that their blood is having trouble pumping around their body and is gathering in the legs and feet. This is often the reason why people get dizzy and faint.

Another common type of Dysautonomia is Orthostatic Intolerance (OI).  OI means in the simplest term that your body does not like being upright. Almost like you’re allergic to standing up. Some people with POTS also have OI. The symptoms of OI include palpitations (your heart pounding very hard), light-headedness, chest pain, trouble breathing, nausea, brain fog (trouble thinking or speaking coherently) and fainting.

Exercise, heat, alcohol or even eating a large meal can bring on symptoms of these conditions.

Other types of Dysautonomia include Vasovagal Syncope and Neurocardiogenic Sycope (NCS). These conditions also display similar symptoms.

How is Dysautonomia diagnosed?

If you’re experiencing symptoms of Dysautonomia, the first port of call is to discuss your symptoms with your doctor. Unfortunately, medical professionals fob off quite a lot of people. Patients are told they just need to get more sleep or exercise more.

If you do think you may have Dysautonomia, do suggest the possibility to your doctor. Like any other human, they won’t be able to remember everything they learned in college. You may just see a light bulb going off, and find that your doctor is suddenly able to help. Once a doctor focuses on the possibility, they should take a detailed medical history and perform a careful physical exam.

If your doctor is unwilling to take the possibility of Dysautonomia seriously, consider seeing another doctor. Patients lucky enough to be taken seriously by their family doctors are likely to be referred to a specialist.

The type of specialist you will be referred to usually depend on the predominant symptom they are experiencing. The specialist will then decide on what tests you need and then come up with a plan to help you treat and manage your symptoms.

Can you tell someone has Dysautonomia just by looking at them?

No. Dysautonomia is considered to be an invisible condition. Even though you can’t see it, it still exists. It is a disability and should be treated like any other visible disability. To a trained eye, Dysautonomic signs can be spotted like the pooling in the legs and feet like we discussed earlier.

Can Dysautonomia kill people?

Generally? No. There is a type of Dysautonomia called Multiple System Atrophy (MSA) that is fatal. It has symptoms vey similar to Parkinson’s disease, but has quicker progression. People with MSA are rare and the condition usually occurs in adults over the age of 40. The cause of MSA is unknown, and no cure or treatment slows the disease.

But generally, unless you fainted and hit your head or fell from a height, you won’t die from your symptoms. However, many people have a very poor quality of life due to the severity of their condition.

What treatments are available for people with Dysautonomia?

Luckily, most people can manage their symptoms with prescription medications given by their doctor.  A common medicine known as a vasoconstrictor can stop the heart beating too fast and the blood pressure dropping too low. While these medications can help relieve the symptoms of the heart problems, it does not solve the underlying issue causing Dysautonomia. Sometimes medications can make things worse or cause new symptoms.

Dysautonomia is generally considered a progressive disease, which means it gets worse over time. When the Autonomic Nervous System becomes unregulated it can begin causing damage to the organs. For example, some people suffer from a condition called Gastroparesis (GAS-TRO-PAR-EE-SISS). This causes the stomach and intestines to become paralysed. This means food often sits in the stomach and digestive system for too long. This means that people with the condition can be very ill. Some of them even need to be fed with a tube. This is why early diagnosis is important.

Treating Dysautonomic symptoms can be very tricky because there can be a huge range of symptoms. Some people will have to take different types of medications to treat all the different symptoms.

Luckily, there are some new treatments becoming available but they can be difficult to access, especially in Ireland where there are no Dysautonomia specific specialists or clinics.

I know someone with Dysautonomia who uses a wheelchair. Do all people with Dysautonomia need wheelchairs?

No. Not everyone who suffers from Dysautonomia needs to use a wheelchair. Some people have symptoms so bad that they need to use the wheelchair for their own safety just in case they faint and hurt themselves. Other people use wheelchairs sometimes when they are having a bad day with their symptoms. Some people with Dysautonomia have other conditions like EDS which means they have even more trouble with their body like chronic pain (pain all the time) or they are susceptible to dislocations (their joints pop out of their sockets). They may need the wheelchair to get around.

Some people don’t use wheelchairs at all; they may use a stick or not use anything at all. It varies from person to person.

Can you catch Dysautonomia?

No.  Dysautonomia is not contagious. If you know somebody with Dysautonomia, don’t be afraid, you’re not going to catch anything from him or her. So, if you’re avoiding someone with a type of Dysautonomia, go make friends with him or her.

How can I help someone with Dysautonomia?

Be there to listen if they want to talk about it. Some people are afraid to tell you how they feel because they think friends and family don’t want to hear them complain. Ask them how they are and if you can do anything to help them. Doing shopping or household chores can be a huge help and it would be most appreciated. If you’re friend or family member has Dysautonomia and can’t access appropriate treatment like here in Ireland, write to your local representatives to tell them about Dysautonomia and the lack of care that is available. Help raise awareness in the public by sharing articles or pictures about Dysautonomia. Dysautonomic conditions are incredibly under diagnosed and many of the tests needed to diagnose some of the conditions are not available here in Ireland.

If someone with a type of Dysautonomia that makes them faint collapses in front of you:

– position them on their back. If the person is breathing restore blood flow to the brain by raising their legs above the heart level. Loosen anything they are wearing that might be tight or restrictive. Usually someone with a fainting disorder will come to without any further problems. Give them a glass of water and when they’re ready, help them up slowly. If they are not ready to get up, sit or lie down with them.

young man who loses consciousness

It can be embarrassing to faint sometimes so it’s nice to have someone lie down and chat with you to make you feel better. Fainting can be very disorientating and the person may also be sore so let them rest. If you’re worried that they may have broken something or banged their head hard, take them to the hospital or out of hours doctor to get checked out.  If the person does not come to, starts seizing or stops breathing call 999 or 112.-

Well, I hope that I’ve explained Dysautonomia in an accessible way and that it is worthy of a share.
 
You can find more of my blogs on my own website, The Zebra Mom  You can also follow me on Facebook, Twitter, Instagram, Pinterest and Snapchat (evienevin87).

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Thanks so very much to Evie from The Zebra Mom for doing a Saturday Submissions blog for us and a very appropriate post it is too. Do you have any further questions in relation to Dysautonomia for Evie or myself? Please leave a comment below and tell us what you think!

——— 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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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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