Add your link to our blogroll!

Hi folks,

I am currently updating the Links on this here blog, would you like to add your Page, Blog, Insta, Twiter, Channel, Whatever? If it is Chronic Illness or Medically related I would love to add your link and share to the readers, followers and lurkers and gain more exposure.

It’s not the biggest blog in the world but being part of this community is nice, lets help each other out and share so that we can better be seen!:)

Comment below or email me at irishpotsies@gmail.com, alternatively you can also find us at Facebook, Twitter and even Youtube (thought that hasn’t been updated in aaaages!)

I would also appreciate a link back to https://irishdysautonomia.wordpress.com but it’s not absolutely necessary!:):)

Thanks for reading folks, hope you are all well:)

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

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

Sharing from the wonderful ‘Autistic Zebra:)

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

autisticzebra

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

A is for AUTISM:

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

View original post 122 more words

Stronger Together – The International Future of EDS

Ehlers-Danlos Society Youtube Video Published on Feb 1, 2016

Lara Bloom Eds introduces the new The Ehlers-Danlos Society previously (EDNF.org) and talks about the upcoming New York EDS Symposium, the first meeting of medical and patient experts in this area for over 20 years! Hopefully it will bring international change for the better for those of us with EDS. Thanks for all your hard work Lara and the Ehlers Danlos Society.

 

EDS Awareness Month – 2016

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Courtesy of Google Images

 

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

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

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

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

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

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

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

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

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

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EDSAwarenessIreland 2016 EDS Awareness Month Logo 

EDS Awareness Ireland

Irish EDS & HMS

Marfan Support Group Ireland

Marfan Research Foundation Ireland

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

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

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

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

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

eds

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

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

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

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

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

FaintingGoatEDS

Irish Dysautonomia Awareness EDS Logo Version!

Rescheduling Life! – I don’t want to, I have to!

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*Sigh…

Lots going on as usual but the past couple of weeks, health wise, have been terrible. I have had to reschedule so much and it’s a constant thing now. I try (more like hope) to plan for something, get excited the couple of days before if I am at a base level of sick that I can live with but then at the 11th hour I have to cancel because my health has decided to go batpoop out of the blue!

Just this morning I had to let someone down having agreed to take part in something (voluntarily, social network wise) that would have given me, and you as the readers that interact, an incredible opportunity to raise awareness of Dysautonomia, EDS, all the related conditions and rare diseases in general. It was supposed to start Monday, However, given the closeness of nearly calling an ambulance on and off over the past couple of days, it would have been really crappy of me to take something on that I may not be able to fulfill so I had to step down for now. It broke my heart to do it too, but hopefully I may get another chance.

This past week, last Sunday, I had decided to go and support a couple of friends at ‘The People’s Park’ where they had a wonderful Art Performance called ‘Nice Screams‘ as part of EVA International Biennale of Contemporary Art in Limerick in Ireland. They are called ‘Softday‘ and they are mega, be sure to check them out.

But yeah, had to let them down the last minute also because I was so ill that every time I attempted to move in the bed I vomited and this with the savage nausea ended up making me very tachycardic. The 2 days before this I had been ok, sick but manageable, had even been speaking to one of my friends in the wee hours of the morning saying that I had been good and was looking forward to going to see their piece. A few hours after going to bed though, that all changed. I held on hoping something would change but I couldn’t realistically go anywhere the state I was in, then Keith couldn’t go either because he can’t leave me alone incase I syncope or seize without breathing.

It’s a shyte state of affairs to be honest, but I also know I am not the worst case either. There are far worse than me out there. At the same time though, it’s still not easy having to be constantly supervised and those doing the supervising cant move an inch either. I think that is very unfair especially on my Husband as it is fulltime for him.

Tuesday the 26th I had an important consultation with Dr. Akbar in Cork University Hospital. He is a Gastroenterologist and from what I hear, he is very good and very well up on EDS. He is also well acquainted with Prof. Aziz in London.

When I was over in London meeting Prof. Grahame who diagnosed my EDS Hypermobility type, with possible overlaps of other EDS types, he heard about my stomach and gut issues and strongly urged I go and see their Neurogastroenterologist called, Prof Aziz. I haven’t been able to get over since (Tried a number of times to get over and had to cancel because of mostly hospital admissions and their recovery) and now, I currently have been told not to travel for health reasons and as such until I can go see Prof. Aziz in London, for now at least, Cork is closer to get to. Except on Tuesday, we again were in the territory of calling an ambulance. I had to reschedule and thankfully I got another appointment for the 17th of May. Hopefully I can make that one. I am so pissed I had to miss it, especially when it would have been good for him to see me in that state, but I couldn’t even get to the car without passing out.

Wednesday: nothing on but my neck and base of my skull started giving major trouble. Thursday: again nothing on but the pain was significantly worse, this time with serious inter-cranial pressure bringing me close to syncope every time I sat or tried to stand up.

Friday: Woke to moaning, my own moaning! I couldn’t move my neck at all. The migraine and pain was so bad I was not able to so much as open my eyes without wanting to scream. Every breath in, swallow, slight movement made my neck, base of my skull and what felt like my entire brain from searing! Extreme dizziness, fatigue, nausea and mostly pain. The thing was, If I could stay upright, I probably would have lived through the pain to go anywhere but if I tried to go more than a 45º angle off the bed I was starting to black out.

I had a pain specialist appointment that day in The University Hospital Limerick and I was in too much pain to go!

How does that even make sense?😦

It was an important appointment too in that I would have been getting some neck X-ray results back from a couple of weeks ago to see if it needs to be escalated to an MRI, if not an upright MRI, and booked in for more steroid injections into my SI joint and the Occipital nerves of the base of the skull. Also, just like Tuesdays appointment with Dr. Akbar in CUH, it would have been great for him to see me in that state to understand the extent of what happens.

It’s not the pain, or nausea or anything, I can live with all of those,  (well sometimes I can’t but there is a constant baseline of sick that I live with daily that is manageable) but it’s the constant NCS/Vasovagal Syncope (They are the same thing) especially when it happens and my breathing stops, that’s what stops me in my tracks.

Then here we are today, Sat the 30th and I had to cancel that thing I was meant to be doing starting Monday (What I spoke about at the start of this rant!)

*Sigh…

I’ll just have to continue rescheduling life until I am physically able for these things. I feel guilty about this, feeling like I have let people down yet I know I can’t help it either!:/

Do you folks (Mainly with chronic illness’ but I would love for anyone to reply!) have to constantly reschedule? Do you feel bad for doing so while also knowing that IT IS IN NO WAY YOUR FAULT! or… am I just a strange thing?!

Share your thoughts and thank you so much for reading.:)

I had a HIDA Scan a couple of weeks ago too, I will do a blog post for that alone, it was an interesting if not somewhat boring test, but ill fill you in on that next time😉

 

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!

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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.

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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.

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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:)

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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