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.

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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

Saturday Submissions – With Ciara Chapman

In Today’s Saturday Submissions, I speak to the lovely Ciara Chapman from ‘My Chronic Pain Diary’,

Ciara is from Cork here in Ireland and is 34 years old.  As yet she is undiagnosed but has been experiencing chronic pain as a result of a nerve problem for 2 years now and she’s been getting through the experience by creating a beautiful illustrated diary.

Taken from the ‘About’ page on her site:

“I started ‘My Chronic Pain Diary’ in January 2016 as a form of Art Therapy to help me cope with the mental and physical toll Chronic Pain has taken on me. It’s a very lonely and isolating experience, even if – like me – you are fortunate enough to be surrounded by and supported by the people you love. I found the medication I was prescribed made it difficult for me to read, the words were fuzzy and I had my fill of television so I turned to my love of drawing. I hope by sharing this diary it will reach people in similar situations, whether you are experiencing physical, mental or emotional pain it is so important to remember we are not alone.” – Ciara Chapman – http://www.mychronicpaindiary.com

Please take a look at these images, I think they are so full of meaning, fun and life, very beautiful and excellently executed. I love them! Enjoy!

 

One step forward, two steps back.

Physiotherapy

Opinion after opinion after opinion…

Endless nights with little sleep

Out to sea

Help Wanted.

Rain, rain go away

Knowing your limitations

Meditation

I feel guilty sometimes

Time Freeze

 

Thanks so much to Ciara for sharing her wonderful illustrations with us, they really are stunning, please be sure to check out her link above and make a connection and please leave a comment or feedback if you relate to any of these images.

——— 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

Saturday Submissions – With Dr. Liam Farrell

It’s a day late, I know, I know, I’m sorry – (It will be worth it, promise!) I haven’t been well in the last few weeks, I completely forgot all about Saturday Submissions last week and then I do it a day late this week, oh dear! I can do better than this, surely!!

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This week I speak to Dr. Liam Farrell, yes, a real doctor, or at least used to be a family GP, now better known as an award winning columnist and broadcaster. You can find Liam over on Twitter as @drlfarrell.

 

Why presentations are best served rare

We are doctors; we do terrible things to people. They come into the surgery like healthy folk and go out as patients. If they’re really unlucky we confine them to an institution where the occupants are routinely left immobile, deprived of sleep, fed a diet that is tasteless and nutritionally marginal, and experience the de-humanizing indignity of being half-naked all the time.

‏The average age of a patient in general practice is 75 years old.. Many have multiple diagnoses, and their care is incredibly complex, and above all requires more of our time. But our time is in increasingly short supply, so much of it wasted on the worried well and on health promotion. If we reckon on 15 mins per consultation, a family doctor with 2500 patients would spend 7.4 hours per day to deliver all recommended preventive care and 10.6 hrs per day to deliver all recommended chronic care.

‏This leaves a generous 6 hours every day for those pesky acutely ill patients, sick certs, insurance and passport and DLA forms, paperwork, eating, sleeping, banging our heads against the wall in sheer frustration, toileting and reproducing. But what is never understood, by patients, the general public, the media, bureaucrats, managers or politicians, is the huge numbers of people family doctors see who aren’t sick, and who have nothing wrong with them; this really can’t be comprehended unless you sit in with a family doctor for a whole surgery. A huge part of our job is telling people what they don’t have. Unfortunately, ‘nothing wrong with you’ is a retrospective diagnosis and can only be made after the consultation.

As the threshold for attending healthcare services grows ever lower, there are more and more worried well, too much screening and over-treatment. It becomes harder and harder to pick out the really sick person from amongst the ranks of the worried well; when you are looking for a needle in a haystack, the last thing you need is more hay. There is consequently not enough time and resources to the really sick; so everyone loses, especially those with hard to recognise rare diseases.

As The Fat Man said in The House of God, when a medical student hears hoof-beats outside a window, he thinks it’s a zebra.

Which might be true, of course, in certain circumstances – if you were in practice in the Serengeti, for example (curiously, I was once in the Serengeti, heard hoof-beats outside my window, peered through the early morning mist and saw only an old cow).
A medical axiom used to be that common things are common and uncommon presentations of common diseases are more common than common presentations of uncommon diseases. But this is now known to be misleading. Taken all together, rare diseases, and rare variants of common diseases, are not uncommon. And diagnosing rare diseases is very difficult; it’s not as if there is a are disease specialist we can refer patients to.

I do have some hard-earned experience. As an intern, I saw a young lad in casualty. He had fainted at a disco (yes, it was that long ago, Saturday Night Fever was quite fashionable. Old age is creeping up on me, not sure why but fairly sure it’s up to no good) and he had a few unusual skin lesions and a labile BP.

These days, I doubt if I would be able to recognise a phaeochromocytoma ( a rare tumour of the adrenal glands) if one walked up and assaulted me with a blunt speculum (I’ve been flogged into apathy by too many URTIs and sick certs, rare and interesting diseases only present to other doctors), but I was young then, fresh and sharp and so hip, I could hardly see over my pelvis.

I wrote ‘possible neurofibromatosis?’, ‘possible phaeo?’ on the chart and admitted the young man to the ward. I was too green to realise the importance of hoarding unusual cases to myself, for my own advancement, and sure enough, the rumour spread around the hospital as fast as an epidemic of flaming gonorrhoea.

Later, when I went to check up on my patient, I found him buried under a tide of medical students, SHOs and research registrars, all keen for a piece of the glory, all ordering 24-hour urines, all dreaming of a case report for the peer-reviewed journals and another notch on their CVs.

‘Help me, doc,’ he said, desperately, ‘they’re suffocating me.’ I whipped away the students, but the others were far above me in the hierarchy and I could offer little succour.

‘Sorry, pal,’ I said. ‘It’s a common complication of uncommon diseases.’

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Thank you so very much to Liam for providing todays Saturday Submissions!
What did you think of his post?
Do you relate as a medical Zebra?

Please leave a comment and let Liam know what you think, be sure to check out his Twitter Link 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

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

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.

 

 

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!

 

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.

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.

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.

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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Ambulance Time Once Again!

On August tenth we had to call an ambulance yet again!
I had been in bed for weeks at that stage nursing a savage pain on the right side of my abdomen. This wasn’t the first time it has happened, and probably wont be the last! It got to a stage where I was trying to manage the pain myself at home, trying to avoid going into hospital, but I had to face facts and call it as it got too bad to manage on our own this time.

The Ambulance arrived promptly and began to tend to me. They were a crew of two, Male and female, and were excellent. Friendly, Professional, funny easing the mood when needed and seemed to take a genuine interest in what both Keith and I had to say and contribute.

Unlike the last few ambulance calls, this visit from them wasn’t rushed. It was calm, sedate and gave us time to properly prepare to go into A&E. While they took their time trying to locate a vein on my foot, Keith ran upstairs to the computer, got ready and printed off an A4 sheet with simple information on it about me and my condition, highlighting the main issues I present with, medication I am on and what would be needed when first admitted like fluids, Pain control and Catheterisation, etc.

The reason for this sheet was because through previous experience we have found to be constantly repeating ourselves while giving out my information to different people and yet only parts of the overall story get heard by all different people and nobody has the full story! This time we  said we would try getting this sheet in as a common denominator of information in my files so that everyone will be literally be on the same page regarding my care and see what happens. It was worth a try at least.

After getting a vein in my foot and administering some morphine for pain relief, we were eventually ready to go to the hospital and the ambulance crew were brilliant with everything as well as taking on the information sheet, which they said they thought it was a fantastic idea and wished more people were that organised!

We quickly made it to the hospital, after getting more Morphine on the Ambulance, I was brought straight into the A&E main area, Thankfully I wasn’t rushed into Resus at any stage this time, it was calm and sedate and a far better visit this time round.

I was delighted to hear back from the Female paramedic that she passed on the sheet Keith had given her, to the triage nurse and that the nurse also commented on what a good idea it was to have all the main things highlighted on one page where everyone can see it. She said she would put it in my file so that all the doctors would see it too. So far so good for our little A4 sheet!

While waiting around for a short while, waiting on the triage nurse to find a place to put me as it was busy in A&E that day, The Paramedics were chatting to me and told me they knew some student and new paramedics who were doing papers based on me for some exam that was due the next week! Morto! I found it funny that they would pick me based on my rare or under diagnosed EDS condition or as I like to call it, ‘my awkwardness!’ :p

I once again had terrible trouble getting veins in me, doctor after nurse after doctor tried and failed and it started getting really sore. The vein the Ambulance crew had gotten was already failing just a few hours after it was put in, my foot swelled up  and they were worried as they really wanted to administer fluids and iv meds so they wanted a vein soon. Throughout the following week while in the hospital, this continued. a vein would be gotten and it would fail almost immediately until in the end the anaesthetics team had to be called and they had no trouble getting a vein and thankfully now a note has been put in my file to say that only anaesthetics are to place a cannula on me and no one else, so hopefully all the prodding and poking will come to an end now.

After spending no more 24hours in A&E this time around, I was admitted to the surgical ward. While in the A&E I had all the usual tests, xrays, scopes, exams, the usual trouble of about 50 different doctors trying to get a vein after a brief moment of being cocky and saying something like, “Oh I’m good at this, don’t you worry”, or,”Oh really? Bad veins, huh? well, I like a challenge!” and then just end up being unsuccessful anyway! That always provides me with a giggle especially towards the cocky ones who think I wont post a problem, cha! Say that to me after 20 mins of trying hopelessly! :p Being admitted after 24hours was quick though, considering that I have often had to wait over 46hours before.

I always like being admitted to the surgical ward. Not only does everything seem to be more up to date and cleaner, but Compared to the medical wards, The mood on the ward is generally brighter both from the staff and the patients. The Nurses seem to genuinely care, are not as dismissive as others I have encountered on the medical wards. They get upset when you get upset, they don’t like to see you in pain or discomfort and as much as they are able, they won’t keep you in pain for long and will treat you asap when they are asked to, a lot of the time, they don’t even need to be asked, they will notice themselves and will get you what you need to help ease your discomfort. Also, the electric beds are well cool! :p

I saw My Surgical team the next morning bright and early and they took the situation serious when they saw I had lost over 3.5 stone with the nausea, vomiting and general pain and discomfort I have been having with my gut issues.

As well  as my pain team to cover my Occipital and Sacroilliac joint Nerve Blocks which were due once again, They called in a dietician, a tissue viability nurse to talk about any difficulties I may be having with the chair, thankfully theres nothing serious going on there but she wanted to refer me to a Dermatologist for a small bit of irritation caused by the chair that was easily sorted with some long term antibiotics (starting with an 8 week course and if it needs to continue after that it could go up to 16 weeks), will just have to wait and see how it works. Then they wanted to get a serious OT assessment for me as my own local OT never properly assessed me for manual chair or a bed, given my situation, these are the two basic things my surgical team wanted to be covered while I was admitted.

The Dietician was concerned for my weight loss compared to my height and prescribed a high fiber, high calorie diet as well as Fortisip Calorie drinks to take twice a day along with my usual daily food intake to help at least maintain my current weight if not try to increase it. Sshe also prescribed a new tummy med to take with the other ones I am on to try and help with the nausea and vomiting as well as to try and increase appetite. So I have now started these and I was thinking of doing quick video reviews of the different drink flavours on offer, if you are interested that is! Let me know and I will do it if you like 🙂

Throughout there was non stop testing to find out what was causing the pain in the right side. Xrays, Ultrasounds, CAT and MRI scans, Scopes, blood tests, you name it, it was done.

In the Ultrasound Room!

One outcome is that they have ruled out any Gallbladder issues. There definitely seems to be Sphincter of Oddi, Severe Gut Dysmotility and Neurogenic Bladder Dysfunction problems, as well as a large and painful Lymph node on the inside of my right hip which is causing a lot of pain too and is currently under investigation, all these are contributing to the pain as well as the Ehlers Danlos Pain itself, but they have ruled out Gallbladder and Appendix issues, which is good!

I had 2 major cardiac events while I was in, though I had been battling low Bp all week, these events were the opposite, they came out of nowhere in the middle of the night, they were raging high bp and very fast heartrate, the ecg showed some abnormalities but thankfully they didn’t stay long (about 2 or 3 hours) and after they administered some medication to lower my bp and hr, I seemed to return to my regular low bp self, they were scary though as the pain in my chest when it happened was frightening and I was soaked through with a tempreture. The nurses seemed concerned as Long story  events came out of nowhere. Thankfully though after a few hours I returned to normal and could get some sleep.

Long story short, I got to see everyone that was called for me except OT. The final team was the pain team with the good professor who loves to give injections and this time was no different! He administered my usual Occipital and Sacroiliac joint nerve blocks under ultrasound which he did at my ward bed, he had a little portable ultrasound machine or at least that’s what it looked like and he went for it there and then. The pain team in conjunction with the anestetic team said that I may have chronic piritonitis ( information or even tearing of the abdominal lining that holds your organs) this is still being investigated and will continue as an outpatient appointment along with all the other teams I had to meet while I was in.

The surgical team try everything they can and they are so good to want to learn but they still are not sure exactly what is causing the severe pain and weight loss. I had mentioned to them about a Gastroenterologist specialist in Cork university hospital who is very well up on EDS and speaks regularly as well as trained under Prof Aziz over in London whom I hope to see as soon as i am able to travel. They said go to see him, just to see if he can help and my surgical team said they would be delighted to consult with both him and Aziz going forward as they are of the mind that more on the overall team to help me then the better!

In the meantime my team wanted to bring my case up at an EGM (emergency general meeting) where the head consultants and specialists of a department get together and discus special cases at a count table meeting so that other people’s views and suggestions can be taken on board, then once they have news they  will call me for a new outpatient appointment or send me for further tests if required.

 Unfortunately the OT never turned up and there were questions as to wether she would turn up anyway as she usually only sees Stroke and Neurology patients so my surgical team along with the head nurse on the ward rang her boss as well as had to write a letter in order to argue the case as to why they felt I was a special enough case for her to make an exception and come and see me, alas I was left waiting all over the weekend just to see her and she never turned up so my team decided to send me home at this stage with some new meds and a ton of outpatient appointments and they would follow up with her to get me a much needed appointment as my local OT isn’t really doing what she is supposed to do. 

In the meantime I have made a new appointment to see that Gastro specialist in Cork, his name is Akbar and I have heard great things so I really hope he can help. That appointment is on the 20th of this month (September) and of course I’ll fill you in on how that and any subsequent appointments go.

For now, I’ll just chill and try to recover 🙂

Thank you as always for taking the time to read.

Lette ( the fainting goat!)

Made The Longlist of The Irish Blog Awards 2016!

 

WOO!! So not only did the Blog make the long list finalists for Best Health and Lifestyle Blog in The Irish Blog Awards 2016, but also one of my blog posts, ‘The Good, The Bad and the Emergency‘, made it onto the the long list for Best Blog Post!!

I am delighted and I have you all to thank for adding your entries for the blog! I cannot tell you how much I appreciate it 🙂 From here on, as far as I know, The blogs will now be judged by a panel and then those who make it onto the shortlist may need to get votes for the remainder of the judging so if I ever even make it that far, I may be back to ask for some votes! :p

For now, Thank You all once again and I will keep you posted on how everything goes 🙂 ❤

Lette (Fainting Goat)

The Blog Awards Ireland 2016 – Nominations Now Open

Hi all,

I am delighted to say that Irish Dysautonomia Awareness has been entered into this years “Health & Well Being” – Personal Blog – Category in the blog awards nominations and hopefully will make the long list at least, that’s where it got last year so to make that again would be really nice! 🙂

If YOU would (Please) like to Nominate this blog Please click HERE (Give it a minute to load, it can be slow!) or click the image below and follow the instructions. I would greatly appreciate your input, THANK YOU! You need to register with the site but you can do so quickly and easily  by signing in with your Facebook and you can control what information you give them.

Please enter The Title of the blog: Irish Dysautonomia Awareness,
Also pop in the URL of this Blog which is: https://irishdysautonomia.wordpress.com
also please be sure to enter it into the ‘Health & Well Being’ – Personal Blog – Category.
Thank you ever so much!

Please click here and enter the info to Nominate this blog! – THANK YOU!

This year there is also an entry to nominate your favorite Blog Post from the blog here. In the last number of months the post that has raised most interest seems to be this one:
‘The Good, The Bad & The Emergency – Part 1’

I would also greatly appreciate if you have the time, to maybe nominate that blog post Please and thank you most kindly! as far as I can figure, there’s no harm in trying! 🙂

It is the same process as the first, please click Here:
Hit ‘Nominate a Blog’ – Enter the ‘Blog Post’ Title as: The Good, The Bad & The Emergency – Part 1

The Blog Post link is : https://irishdysautonomia.wordpress.com/2016/04/05/the-good-the-bad-and-the-emergency-part-1/

The Category is ‘Best Blog Post’ – Personal Blog

Please Click Here and Enter ‘Blog Post’ Details (As I have laid out above) for Nomination – Thank You

Thank you so very much for you time in doing this each and every year, I may be back to you for more support if we make it to the ‘public vote’ part but even if it doesn’t get anywhere, a few more people will view the blog as a result of just entering and further our much needed awareness, even just a teeny bit.

Thank you once again,

Lette – Fainting Goat!

The Good, The Bad and The Emergency! – Part 2

Continuing from Part 1…

 

the last thing I remember was falling forward…

 

Time feels like it passes differently when I find myself in these situations. I remember flashes of disjointed memories but in no discernable order. I pieced together the following description from a combination of these memories and from what I heard back from the nurses and doctors following the incident.

I wake to severe pain in my head and neck, cold and shivering hard. There’s a pillow under my head.

It takes a moment for me to realise that I was lying on the floor and had my eyes closed. I groan in pain as soon as I try to move, it was the first sound I remember hearing, then it sounded like someone slowly turned the volume up around me.

A mumbling sound reached my ears and as the volume returns to normal, I recognise a woman’s voice speaking, telling me to stay still and that everything was going to be OK. Is she talking to me? I can’t remember what happened…

The space around me seems to expand some more and I can hear a number of people talking in serious tones all around me.

Wind moves my hair as someone walks with a purpose passed my head and as the breeze hits my forehead, I can feel a layer of sweat sitting on my skin.

I am confused, hurting and feel like shouting out in pain but I find it so difficult to move and actually impossible to talk. I am unable to figure out what happened or even where I was at the time, I wanted to know where my husband was but when I tried to voice my worries I found nothing came out.

Someone started to caress my cheek and spoke softly trying to reassure me. It was only then I realised that someone was sitting up against me, holding me still with her hip and her arm around my body.

People were talking hurriedly, asking for files to be sent, people to be contacted, equipment needed, then I heard heavy footsteps walk in behind me. Someone said the ambulance had arrived. I still didn’t understand.

A pinch in my right arm, it didn’t work, need to try another one… Another pinch at the back of the hand this time…

A softly spoken female with an English accent started explaining the situation to a male with a Dublin accent.

She gave my name, age, went through generally all my medical conditions going into more detail about the EDS as the male said he had never heard of it before. When he asked what happened today I heard her say to him that I had been down here in physio when I fell off the chair I had been on and had a seizure.

The male started asking different people questions as to what they saw, how long had I been sick before this happened, did anyone see if I had hit my head in the fall.

I felt another sharp pinch, this time in my left arm, someone saying they had tried a few times for a vein but had failed, then they asked for some heat packs and towels.

A female doctor introduced herself to me, kneeling down at my left side. She explained that I had a ‘bit of a faint’, and just to be safe they were going to send me to St. James’s hospital to check that I was alright.

Though I had my eyes open, from what I can remember anyway, for the life of me I can’t remember faces, or names or what was going on around me, a lot of these snapshot memories are made up from feelings associated with what happened and from what people were saying to me at the time.

I feel sudden warmth on both my arms as a woman speaks softly into my ear saying:
“that’s only heat packs and towels hun, we are trying to get a vein”

It was only when I had felt the warmth that I could begin to comprehend just how cold I had been lying on the hard floor. People started asking me questions. I wasn’t able to answer them.

The Dublin male was asking should they strap me to a body board to be safe incase I had hit my head, but then he said, with the condition I had, that the board would make me very sore and uncomfortable and he didn’t want to do that to me! He decided to wrap me in blankets so they could lift me up onto the trolly without pulling on my arms and legs. Once on the trolly, they used the blankets to cushion and support my head, neck and around the edges of my body to give as much support as possible without hurting me.

I felt another pinch in my left arm again and It failed yet again. I heard the male with a Dublin accent say it was ok, that they would try to get one in the ambulance.

They finally got me into the ambulance and started heading towards St. James’s hospital. The Dublin guy was asking me some general questions, I can’t even remember what they were now but, I tried to communicate with him through gestures and nodding, though my neck seared with red hot pain any time I moved!

He began to take my blood pressure, temperature and quickly scribbled down some notes in a pad he had in one of his leg pockets.

I began to feel funny again, the world all became silent except for my racing heartbeat and ‘Darth Vader’ breathing!

Oily darkness began to envelop my vision, I tried to fight it, but, the darkness won…

 

 

A bitter, almost metallic taste in my mouth…

Darkness…

Someone trying to reassure me, explaining that I was now in Resus and being looked after, they are holding my hands…

Darkness…

A number of serious and hurried voices, pressure around my face as someone presses an oxygen mask over my nose and mouth, severe head and neck pain and I catch glimpse of a large silver scissors, cold against my skin as they begin to cut off my clothes…

Darkness… This time it feels like it lasts a long time…

I wake with a phone in my hand, I’m still in resus, wearing a blue paper gown and covered in pale blue blankets. I am a tangle of multi coloured monitor wires all keeping an eye on my vitals, an IV Phenytoin fusion is connected to the cannula in my left hand. There are beeps and people talking all around me with an occasional metallic ‘Clanging’ sound like someone putting metal instruments on a metal top table.  My husband is on the phone… I can’t understand what is being said or what is going on… They take the phone off of me and all I remember feeling at the time was scared because I knew who was on the phone but I couldn’t communicate with him because of whatever drugs they had pumped into me, I was completely out of it but still worried that my husband had no idea what had happened.

I didn’t really have any idea what happened, then, the darkness came back again and I slept.

Later I woke in a small room in another part of A&E, finding myself lying very awkwardly on a trolly, my ear and neck crushed sideways into my right shoulder with red hot searing pain down the back of my skull and neck… I am still attached to an IV.

Darkness… DANGNABBIT!!! I was in a lot of pain, I couldn’t move myself and knew I had to do something about it but could never stay awake long enough to find someone to help before I passed out again.

Sometime later I feel wetness under my left side. I open my eyes to find a pool of blood coming from my hand and wrist, trickling down my forearm and soaking the bed sheet from under my elbow. It seemed to be coming from a vein that they must have removed a cannula from, separate to the drip that was currently being used. There was a plaster over it but as it was bleeding so heavily the plaster was now hanging off and blood oozed very slowly but freely from the tiny puncture hole in my skin. A nurse just happened to walk passed at the time I was making some sense of all this so I got her attention and showed her what was going on. She brought some fresh bandages and cleaning stuff, cleaned me up, dried me off and put a fresh bandage over it this time instead of a plaster so that it wouldn’t come off again.

While I had her there I got her to help fix my neck position, I had a voice again but it was hardly there, it took some time to get my point across but we got there in the end! She even found me a pillow and the immediate comfort I felt brought on heavy dark sleep again!

A Sudden shocking pain in my wrist! I open my eyes to see a blond lady dressed in regular clothes, no nurses outfit or doctors coat. she apologises and explains that she is testing my artery for blood gases as the test they did earlier in resus was abnormal. She had to inject straight into the artery on my wrist and it was a level of pain I had never felt before, wow! She apologised once again, took her sample and went off about her business.

Darkness… unusual dreams… pain, vomiting…

The same nurse who fixed my bleeding hand and got me a pillow earlier, woke me later to change my IV from the infusion to a simple saline solution and to tell me there was now a bed for me on a ward upstairs, it was 01:30am and it felt like I could have been at this hospital for days. I had no concept of how much time had already passed. I thought about my husband and if he knew what was going on. It only then dawned on me that I had no phone with me, or any means of contact to anyone! The only clothes I had on when coming in here had been cut off in the Resus room, put into a dark green ,’patients belongings’, bag that now sat in the bedside locker next to the ward bed I now found myself in. I had nothing else other than the blue paper gown they put on me in Resus. I asked if I could call him, knowing he would be awake waiting to hear news, even at this hour.

They refused, saying it was too late and that I needed rest. I was upset at the thought of not being able to contact him but I was too drained and doped to argue.

They gave me a proper material gown, instead of the paper blue one I had on from Resuss so that I could be more comfortable for the night. They gave me my night time meds I was due and I slept restlessly again until woken by the medical team later that morning.

They asked me every question under the sun, what had happened? how had I been feeling before it happened? has it happened before? if yes, when? what happened then? has it been investigated? if so what tests have been done? in what hospitals were you tested? who is your neurologist? which hospital? is it ok if we call them to access your files and your previous history of seizures?…

They told me it was the next day, Wednesday, to me it felt like I was there a week already! They hadn’t yet called my husband to say what had happened and they wanted to me to stay over the weekend until at least next Monday for observation and some further testing.

I explained to them that I had already had lots of tests for this and that they would only be duplicating the tests that already had been done. I said I would take their advice of course, they know best, but I suggested that if it was ok that I would like to get home to Limerick to my own neurologist to continue the testing that had already started down here. They agreed this wouldn’t be a problem but that they would like to go over my files first to make sure that everything is being tested as they would like it to be and they wanted to make sure my own Neurologist would look after me when I return down here.

They said they had given me benzodiazepines to try and treat the seizures, I explained that I was allergic to them, the doctor who was speaking with me said that was highly unlikely and said she would leave me home with 2 doses of Benzos just to make sure I was covered for the journey home! I asked her kindly if she would take a look at my files first and then decide from there. She agreed.

In between heavy sleep a friendly male nurse came over regularly to check on me, administer medication and to check my IV’s. I kept asking to ring my hubby but they kept saying it was too early. I didn’t care about the time, I knew he would be up  waiting to hear what was going on. I had a vague memory of hearing him speak to me on a phone in Resus but I couldn’t tell if I had dreamed it or not!

My left arm was beginning to hurt so much and I got a small shock when I examined it. My whole forearm was extensively bruised, from what I can only guess was the staff in resus trying to get a vein and checking my blood gasses! It looked like they tried a little too hard!

A spot of bruising!

 

A consultant neurologist came and asked the same questions again, doctors came and went, I fell in and out of restless sleep until a nurse called my name at about 11:30am to say himself had finally gotten through to the hospital and was on the phone out in the hallway. It was only now we all realised that I was a wheelchair user so they got me some wheels, a blanket and carted me out to the phone in the main corridor outside the ward I was in. It was one of those awkward hospital wheelchairs that had tiny wheels and could only be pulled backwards to move it, that was fine until I needed to get back into my bed after the call!

He was delighted to finally get through to me, he had been trying all night. Harolds Cross called him to tell him I had been rushed to St. James’s by ambulance after having a seizure in the physio room. St. James’s never called him and though he had been calling A&E all night, the phone mainly rang off the hook, he only got answered twice, the first answer being useless as the lady on the phone couldn’t locate me in the hospital.

When he did get through to me in Resus, I was so completely out of it, I didn’t take anything he said in! He completely understood and had been super worried. Thankfully we could talk now and I filled him in on everything I could remember from my side. He wanted to come up to me straight away but I suggested he should only be up to collect me as soon as the doctors gave me the go ahead to go. Otherwise he could be waiting around only to be told they would be keeping me in and I strongly didn’t want that.

We came to an agreement that he would ring back in a few hours to see what the news from the doctors was by then. It was lovely to finally talk with (& understand) him! We spoke for a little while more then said our goodbyes until later.

I hung up the phone and pulled the blanket around me, I was still only in a hospital gown. No socks or slippers and it was cold in the corridor. It was only now I realised I wasn’t able to push the teeny wheeled  wheelchair myself! I eventually saw the male nurse from my ward and he saw me pathetically trying to push the chair back in to the ward by somehow not using my hands as they were busy holding the blanket around me! I was flapping my right foot like an idiot in a hard effort to magically ‘waft’ the chair in the general direction!

I clearly wasn’t rid of all the drugs in my system just yet!

The nurse came and rescued me from my useless attempts and when back in bed I was offered some food that I had too much difficulty eating so I just left it. I couldn’t rest properly now either, having to wait for doctors and hoping beyond hope that I’d be allowed home.

A few hours pass and I am getting conscious of the fact that my husband would be calling me back and I still hadn’t heard anything from the doctors. Finally, in what seemed like the very last minute, the female, Benzo pushing doctor from earlier came back to me!

They had gotten a copy of my files and spoke to my neurologist, all was OK for me to return to Limerick and I would be seen by my own doctors in a few weeks time. She explained that they still wanted to give me the Benzos incase I needed them on the way home in the care so it was all in the prescription and discharge letter they had given me, it was up to myself if I wanted to use them or not, though they did say my own Neuro wasn’t too keen on the idea, so then why even give them to me? Eitherway I agreed to use them if absolutely necessary and all I had to do now was wait for my beloved to ring back so I could fill him in and then home come rescue me!

He rang, filled him in, I waited, snoozed fitfully (pardon the pun!) and finally a little before 6pm the husband came in to find me ready to go but I still had no clothes! Everything I had was cut off me except the tracksuit bottoms I had been wearing when I cam in so at least I could throw that on under the hospital gown and they gave me a blanket I could take home with me.

Himself carted the teeny wheeled wheelchair backwards out into the night ant towards the car. It was so cold but when I got to the car it was SO worth going out into the cold to see the sight in the back seat of our car!

There, nestled in a tiny fluffy ball right in the middle of a pile of quits, sleeping bags and pillows was my little Boo (our 6year old Cavalier King Charles Spaniel who we treat like our furry daughter and will probably be the closest thing to a daughter we ever have!) It was a treat to crawl in beside her! They had the car all warmed up, I couldn’t be upright for any great length (which seems to still be happening to this day) so the better half prepared the car with soft warm fluffy things, including our favorite pup for me to cuddle into while Keith battled through traffic all the way back home to Limerick.

Boo! 

The last thing I remember before falling into a contented snooze was Boo cuddling into my chest, all covered up and warm, watching the city lights dance on the roof of the car, feeling truly happy to just be with the people I love and going in the right direction for the first time in a good few days… HOME!

When we arrived back at the house, Keith bundled me into the couch and we just wrapped our arms around each other. It was so good to be back where I felt safe. We slept where we sat and didn’t budge until we woke up hours later.

_______________________________________

I needed a few days to recover from the knock out of St. James’s before I could even lift the phone to Harolds Cross to thank the staff on the wards and in the physio room for all that they did. They really were remarkable and I would love to get a chance to go back up when I am a little stronger but I don’t know what the outcome of this is even to this day. I was told a report of the stay would be sent to my doctor and we could go from there but I haven’t heard anything back yet.

Even now, 2 months later, April 13th, I haven’t yet recovered. I have been mostly bed bound on a daily basis. Extreme nausea, vomiting, pain, Headaches I can hardly handle and so much pain and instability in my neck and the back of my skull. Severe orthostatic intolerance where if I make any attempt to sit up in bed most days my BP drops with violent dizziness and then drives me into a full syncope which sometimes leads to a seizure.

I am constantly in and out of hospital appointments here locally since returning home and there are lots of tests being done for lots of different things. I will follow up in my post on those and another diagnosis I got in early March, Neurogenic Bladder Dysfunction – sexy, right?!

but first…

So, Fainting Goat,  what did you really think of Harolds Cross?

Well, as you can tell from the rant and a half above, I did love the place, the professionalism, organisation and expertise of all the staff could not be faulted, really! The place is fully kitted out with everything they need, it is spotless and runs like clockwork.The place just ‘works’!

The atmosphere in the place has a spark, its comfortable and theres always a small chat or a laugh or a joke to full on discussions on random stuff going on, Oh! and, Dogs! :p I also made some really lovely friends that I still talk to now, connected through Fizzbook! so that’s really nice 🙂

_______________________________________

However, in saying that, there are a couple of things, I would like to mention, but all in all, it doesn’t take away from the experience I had of the place at all, These are just a few thoughts.

There are only 2 consultants in the RMDU unit to cover all inpatients. Both specialise mostly in arthritis and just generally know EDS. You only ever meet whichever one you are assigned to just once a week for no more than 5 – 15mins at most. Though I found my guy very straight and helpful, he didn’t put me wrong at any stage, they get feedback daily from the hands on team, but, personally, I don’t know if this is enough to truly get to know the needs of the patient. A 2 week stay there in the grand scheme of life with a chronic illness, is not a huge amount of time to work with people. Though, they do follow up stays as needed, which I do think is brilliant.

The staff are excellent, happy, friendly, punctual and procedural. But they are not prepared for an emergency. and I don’t think this is a bad thing. The unit is as it states, a rehab unit. As such, it does it’s job excellently, I can’t fault it for that. I did feel they couldn’t watch everyone all the time and some people were sick for a few days before attention was drawn to, for example: pain, outside illness or dehydration. and No, I am not necessarily talking about myself here.

Other than that, I cant say a bad word against the place. The only thing that gets me is, I feel there should be no reason in the world why more specialist units like these cannot be more nationally available. I have stayed at many hospitals and been to a lot of different physio centers throughout Ireland with fully kitted out physio rooms with just a couple of patients and at most 2 physios working it at any one time (perhaps that is just bad timing on my part, these are just thoughts more than anything, I haven’t done any research for proper statistics or anything!)  but I almost feel like the facilities are underutilised, understaffed and I would hazard a guess as to say under funded.  I feel with just a little training on how to handle the illness, more places would be open to even basically helping more people with EDS or similar illnesses.

THANK YOU HAROLDS CROSS

I will stand by saying that this facility is the epitome of successful in its field, Harolds Cross, was in my experience, just excellent at what it does and offers, even for us EDS’ers.

I want to take this opportunity to thank everyone who worked with me while I was there. Everyone was professional, friendly, helpful and seemed happy in their job. You all made me feel very welcome and I felt benefit from what I learned and did while I stayed. I greatly appreciate what each and everyone of you did with your time with me!

Unfortunately I was not able to keep up with the change in pace this time but I certainly hope there will be a next time.

Thanks again.

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…and Thank YOU to all who read these mad rants about my hospital experiences!! I do greatly appreciate your time. I don’t always talk about myself (believe it or not!)  I also talk about lots of different things relating to new medical research, stories from around the world as well as around Ireland, Memes and thoughts on Dysautonomia and it’s related illnesses. I also take contributions, if you would like to share anything related on the blog, please feel free to get in touch via email and if you would like to see more please follow Irish Dysautonomia on Facebook, Twitter and you can find more links around the blog here 🙂

I will update on new stuff again in the next week, have a few appointments coming up so I’ll fill you in on those, Chao for now!

Cheers, Lette