May Is EDS Awareness Month – 2017

Yes, it’s that time of year once again folks, May is EDS Awareness Month and this year, I update my diagnosis story as it just grows in volume and substance every year since all this started in 2011!! So here I go again, it’s 2017 and my story is in need of a clean up and update, so let’s jump right into it!

So firstly, What is EDS?

Put simply, EDS (Ehlers Danlos Syndrome or ‘The Ehlers Danlos Syndromes’, as it is now known since March 2017) is a group of connective tissue disorders. Here is a better explanation according to the EDS Wiki:

” Ehlers–Danlos syndrome (EDS) is a group of genetic connective tissue disorders. Symptoms may include loose joints, stretchy skin, and abnormal scar formation.^[1] These are typically noticed at birth or in early childhood.^[2] Complications may include aortic dissection, joint dislocations, scoliosis, chronic pain, or early osteoarthritis.^[3][1]

EDS is due to a mutation in one of more than a dozen different genes. The specific gene affected determines the type of EDS. Some cases result from a new mutation occurring during early development while others are inherited in an autosomal dominant or recessive manner. This results in defects in the structure or processing of collagen.^[1] The diagnosis may be confirmed with genetic testing or a skin biopsy. People may be misdiagnosed with hypochondriasis, depression, or chronic fatigue syndrome.^[3]

There is no known cure.^[4] Treatment is supportive in nature.^[3]Physical therapy and bracing may help strengthen muscles and support joints.^[3] While some types have a normal life expectancy, those that affect blood vessels generally have a shorter life expectancy.^[4]

EDS affects about 1 in 5,000 people globally.^[1] The prognosis depends on the specific type.^[3] Excess mobility was first described byHippocrates in 400 BC.^[5] The syndrome is named after two physicians, Edvard Ehlers from Denmark and Henri-Alexandre Danlos fromFrance, who described it at the turn of the 20th century.^{[6]” –}

^{Ehlers Danlos Syndrome Wiki}

If you would like to know more about EDS types, symptoms and a host of further information then I highly recommend The Ehlers Danlos Society Website for more info.

My Personal Diagnosis Story.

Though I have had many medical issues throughout my life, my Chronic Illness journey only began properly in 2011.

One Tuesday morning in March, I woke to not feeling very well and as I was exiting the bathroom I called out to my husband who just happened to come and catch me as I passed out in his arms.

I continued to come to and then pass out again every time I straightened my legs. My Heart rate was racing and my Blood Pressure was dropping really low. My husband called the doctor for advice who told him to immediately call an ambulance or take me to A&E. He decided to drive rather than waste more time waiting for an ambulance which would take at least 30 minutes to get to where we lived.

On the way to A&E my husband had to keep shouting at me in the car to try and keep me alert as I kept needing to pass out. We finally arrived at the hospital, I was rushed inside and long story short, many tests and doctors later I was kept in for nearly a month where many further tests were performed, one of which was a Tilt Table Test with which I was diagnosed with Postural Orthostatic Tachycardia Syndrome (Pots) and Vasovagal Syncope (VVS) or Neurocardiogenic Syncope (NCS) – they are both the same thing, basically neurological fainting!

 

So where does EDS come into it?

In the 2 years following the diagnosis of Pots, I was hospitalized many times because of the fainting, low blood pressure and other complications. In the process of trying to figure out what caused the Pots, Hypermobility was mentioned a few times by a couple of doctors and physios, however, whenever I mentioned it to my Pots doctor (he is a geriatrician but he is the specialist who looks after me for my Pots), he didn’t seem to think it was anything to be worried about, even though I did have chronic pain and I did feel it was affecting me at the time.

As time went on, the pain became worse and I felt a formal diagnosis of Hypermobility would benefit me, though there are no EDS or Hypermobility specialists anywhere in Ireland, I still felt a diagnosis would help me.

I had heard about a Rheumatologist in Cork who knew about EDS and Hypermobility so I decided to pay him a visit just to see what he thought. Down I went to see him and within a few minutes of him seeing me he had me diagnosed with a ‘classic case of Hypermobility EDS’, with possible Classical EDS overlaps. I was surprised and kinda happy that I had finally confirmed my inkling that I had it.

However, this diagnosis from the Cork Rheumatologist wouldn’t be worth the paper it was written on… with my pots doctor anyway. He never accepted the diagnosis and just ignored it outright so I just had to live with the fact that my Pots was probably caused by the EDS but there was nothing I could do about it.

To help, my Pots doctor did organize for me to see a Rheumatologist in Croom hospital who confirmed my possible hypermobility and organized for me to do Hydrotherapy and physio at their facilities in Croom Hospital. Even that physiotherapist confirmed I had possible hypermobility but she never believed I had EDS. I found the HSE as a whole were fine to say hypermobility but would never confirm EDS (for fear they would have to treat me for it if they confirmed the diagnosis! I have always been paranoid that was the reason anyway… maybe not!)

You Said You Always Had Some Medical Issues?

Yup! I was even breached for a while before birth but thankfully righted myself before being popped out! When I was born then, I was born with a Fissure and a broken Tail Bone and throughout my life I always had gut issues, travel sickness and dysmotility and I was never without a cast, sling, crutch or some other bandage or plaster thanks to stupid injuries and broken bones which, even though broken bones are not symptoms of EDS I put a lot of my past injuries and ailments down to my EDS as you’re born with it, it’s with you from the start and I seemed to have a lot of various symptoms.

I am currently severely deaf and wear Bi Lateral Hearing Aids, I have and have had since the age of 7, Bi Lateral Sensory Neural hearing loss and Otitis Media with under developed eustachian tubes and auditory canals. My younger life was plagued by ear infections and severe ear pain.

When I hit puberty and teenage years the fainting, feeling really weak, Nausea, Dysmotility and chronic pain got bad with a vengeance and again all the way through school there are photos of me in slings and on crutches, it was crazy! I did do Karate though from the age of 13 and I was constantly breaking bones from it! Baaaaad idea with EDS but sure I never knew and the A&E at the time only ever treated the individual injuries and never looked at everything as a whole!

My teeth and gums gave me problems too. From the age of 13 to 16, I was with an Orthodontist and had braces for the full 3 years. As well as always having gum disease for as long as I can remember, They could never successfully freeze my gums, they had to do lots of injections and finally had to bring in a heavy chrome looking contraption thing to freeze the gums, either way lots of freezing needed. I also had receding gum and bone and every time the braces were removed my teeth would start quickly moving back to where they had been! I now know all these teeth things are problems of EDS.

Things Improved and I Returned To Work

After a little while things slowly began to improve, life from 2011 had been turbulent but in 2013 I decided the time was right for me to return to work. I had been working as self employed while I was running my Media Production Company from 2010 after I had finished my Masters of Science in College and it went very well while I had the energy for it and obviously while I was sick I became unable to deal with 12 hour days traveling all over the country for day long photo and video shoots so I decided something slower paced would suit me better and I found the perfect job working from home for Apple Computers. I absolutely loved the job and because it was from home it was sedate enough for me to deal with some symptoms and still be able to work but just as things had started to go well, about 4 months in I tripped over my Mums dog we were minding and wrecked my hip. Symptoms seemed to crack up from here!

Things Then Got Worse and I Went Into A Wheelchair and Had To Stop Work

Things got worse and worse from here, my hip pain was daily and excruciating, I had to go into hospital for investigations where I was advised to stop work because of my illness and to start using a wheelchair to help my mobility. Of Course, I didn’t want this at all and resisted it at all costs but had to give in, in the end as I simply just needed it and now I am glad I have decided to use a chair as it has given me much freedom in this restricted state.  Work however has stopped and has not restarted since stopping in 2013. It doesn’t look likely that I will ever go back to work as this is a progressive disease.

The symptoms continued to get worse and worse, I started having seizures, ended up in the ICU at one stage for a couple of days and I decided that going to a specialist in the UK was the right thing to do. I was hospitalized so many times where the doctors didn’t know what to do with me and didn’t accept my EDS diagnosis from the Rheumatologist in Cork and I was left with very little help or treatment.

Even my hydrotherapy and physio had stopped early in 2014 as I had fainted in the pool because of my Pots in the hot water and the physiotherapist didn’t want to see me back at the pool or gym until such time as I stop fainting… which is never! So unfortunately I havent been able to get back to that either since it stopped!

Prof. Rodney Grahame, EDS Extraordinaire in London, was the next port of call.

The Hospital of St. Johns and St. Elizabeth in London

I started a Go Fund Me and started fundraising to go to London. So many people generously helped out, Thank you to all, everyone was amazing, even a quiz night was organized and everything, I was blown away! I finally had enough to go and so I did, You can read all about the trip HERE.

Long story short, we got to London and I got a confirmed clinical diagnosis of EDS Hypermobility Type with secondary GI Issues and possible Classical EDS overlaps, from the Professor himself. He did up a great long letter and treatment plan to send to my doctors that couldn’t be ignored and I have found has helped me hugely since getting it. He referred me to Harold’s Cross which I did in Feb 2016 and you can read all about that time HERE and I find all doctors and nurses take the diagnosis far more seriously than the one from Cork. I have had no more trouble from anyone on believing or disbelieving the diagnosis. He wanted me to return to see Prof. Aziz a Neurogastroenterologist for further tests and treatment and I had hoped to return sooner than I am able to. I will be returning in 10days time (2.5years later) to see him and I am excited!

Why Didn’t You Return To London Before Now?

Simply put, I was too ill to fly. The past 2.5 years have been by far the worst in terms of my symptoms. My Nausea is daily and intractable, my dysmotility causing so much pain and trouble that I have been hospitalized loads of times because of it and what I have been diagnosed with called Sphincter of Oddi dysfunction has been causing severe pain and again I have been hospitalized because of this and other chronic pain. I have also been diagnosed with Neurogenic Bladder Dysfunction and have had complications because of that also.

My Neck has been giving me huge trouble. I am receiving Occipital and SI Joint Nerve Blocks for severe pain. My pain specialist thinks I have instability in my neck but that cant really be checked without an upright MRI, which I may also need to get, but again there is none in Ireland so this will have to be done in London if it is needed. At the moment he is treating me as though I have instability in my neck with the Nerve blocks and opiate pain meds until such time as I can get it checked properly. He has me in for a lie down regular MRI for which I am waiting to be called but he doubts it will show anything.

My Gastro issues are probably my worst problem. They are what I am hospitalized for the most and they never seem to go away. This is why I decided to visit another specialist in Cork, this time a Gastroenterologist who has studied with Prof. Aziz (the Dr. I am seeing in London for my EDS Gut related issues) I went to see him in Cork and he immediately identified all my problems and symptoms, took note of all the medications I am on and booked me in for a number of tests that may be asked for in London anyway.
In Feb this year I had a Barium Swallow test that showed up all clear which is great. Next Monday I have a Gastric Emptying test to do which is happening just before I go to London to see Prof Aziz. I will be flying out the morning of Sat May 13th. The reason I decided to go to this doctor in Cork was that he understood EDS, I heard great things back about him and the fact that he studied under Prof Aziz all meant that he could possibly help me out and so far I feel he has. He was the one who wrote the referral letter to Prof. Aziz for me and he said he would work with whatever Prof. Aziz says in his treatment plan.

So, When Are You Off?

All going well with my health (it has been very up and down lately, mostly down) we hope to fly out Sat Morning the 13th May at about 07:30am and landing in London around 09:05am. From here we may grab a bite to eat before heading to the appointment with Prof. Aziz at 12:30pm at The Princess Grace Hospital, where afterward we return to the hotel to rest.

That’s the plan anyway, lets hope that’s how it works out! I tried a dry run of trying to stay up for 11 hours (sounds easy for some but for me I find it difficult to stay up past 4 hours before needing rest) as 11 hours is the time it takes from being up from about 05:00am that morning until about 4pm which is roughly the time we will make it to the hotel at, thats 11 hours up. I tried that the other day and actually failed at 9 hours and needed to crash so bad! so I am worried I may not be able for this trip but I will persevere and hope for the best. My husband will be with me so at least I wont be alone when I go to London and of course I will update you all when I return. I really hope the good professor can help! 🙂

Lette (Fainting Goat!) xxx

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.

_______________________________

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

Updates and Everything Falls In March!

I have been so unwell over the last few months that I have missed and had to reschedule a lot of hospital appointments and now they all seem to have come in March!

I was last admitted to hospital in November last but never got around to writing about it, I was in for a week with another bout of agonizing pain in my right side and gut, all stemming from the Sphincter of Oddi Dysfunction/ Gallbladder pain I had been having all along and that already hospitalised me over 4 times in the one year previously. They took real note of my weight loss this time and started me on new calorie drinks, some new meds, as well as doing some further tests, ultrasounds and abdominal X-Rays all leading up to a second ERCP on the 28th of March, of which I will write about below!

Invacare Action 3 NG – Ocean Blue

Yesterday I had a manual wheelchair assessment with my Occupational Therapist, I have now been measured and fitted for a new manual chair as my current one is loose, rickety and near impossible for himself and myself to push, not to mention that it is far too big for me at a size 18 where I need a size 14 or 15. Yesterday, I was fitted for the new Invacare Action 3NG  (In Ocean Blue!) and have been put on the funding list for it, which means if approved, I will get the chair through the HSE but if not I simply wont get it at all, especially since I was already approved for a new Motorised Wheelchair (Invacare Spectra XTR2 Pictures Below) a few months ago (But is only good for outdoor local use and we do not have a modified car to transport it so I need a manual one to use in the home and transport) There is no guarantee that I will get approval for the manual one, We will just have to wait and see.

Invacare Spectra XTR2

March kicks off with my birthday on the 5th, I have nothing planned only to celebrate with hospital appointments which start on Monday the 6th with a follow up appointment with my doctors who look after my Pots care in UHL. This usually involves looking at the current meds I am on, seeing if they need an update, they ask about my symptoms to date and see if I require another Tilt Table Test or some other tests etc. This will have been my first ‘Pots’ appointment in over a year now so it will be good to catch up and see if any changes are needed.

 

Wednesday of that same week, the 8th, follows with a Urology appointment to check my kidney and bladder function. This Urodynamics Test needs to be done every 6 months or so now that I rely on catheters for painful urinary retention, it can leave you more prone to kidney and bladder infections and kidney dysfunction so that needs to be checked frequently to try and catch infections and Kidney dysfunction as early as possible to prevent any damage.

Image of a Type 1 Arnold-Chiari Malformation. The cerebellum has descended 7mm and there are herniated cerebellar tonsils into the foramen magnum. – Wikipedia

The next day, Thursday the 9th, I have an MRI of my neck and spine, as ordered by my Pain Specialist, to try and rule out Chiari Malformation or other complications because of the severe pain and headaches I am getting coming from around the base of my skull/ top of my neck area, I already get ‘Occipital Nerve Blocks’, for that and ‘Sacroiliac Joint Nerve Blocks’, for the pain I get in my lower back and hips, but I find these nerve blocks are only helpful for a very short period of time (sometimes, if at all!) and are not advised for long term treatment. I have been getting them on and off for over 3 years now altogether as well as continuously taking two types of Opiates (Fast and slow release), meds for neuropathic pain, anti-inflammatories and also muscle relaxants, daily, even with all of these and the injections there has been no proper ‘cure’, especially for the severe neck and head pain, if anything that has gotten worse, so he wanted to investigate that further. We spoke and he explained that he understands that EDSers usually don’t show any evidence of Chiari during a lying down MRI, it is preferred that an upright MRI is performed for a more honest view, however there is no upright MRI in Ireland, one of the closest being in London. I may not need an upright one at all, we will see what the lie down one shows first but he said he would refer me to London if needs be. I will also be returning to London, (privately as none of this is covered by the HSE!) to see another GI specialist that specialises in EDS very soon and I will also see what that specialist suggests I do because the pain and headaches have me bedbound most days now and have worsened my quality of life, where it was very low to begin with! 😦

The following Wednesday the 15th I am back down to Cork University Hospital to see the new private GI specialist I started seeing in November just gone. I won’t mention Names here but, he was recommended to me by a good few people on the Irish EDS related Facebook Pages stating that he is an excellent GI specialist who is very well read up on EDS (Also having studied and worked with the private GI Consultant who specialises in EDS, in London, that I had already heard about (and spoke about in the previous paragraph) and had planned to go and see.) It was recommended that I see him before going straight to London as he can do (in Cork) a lot of the tests they do in London, so I said I would give him a go, and I am so glad I did.

Sphincter of Oddi Placement

I have to say first that My Limerick GI Team in UHL are fantastic in that they have tried almost every test they could to see what is causing all my gut trouble. Since starting all the GI investigations in December 2014, up to now, they found out that I have ‘Gut Dysmotility‘ and ‘Sphincter of Oddi Dysfunction‘,  but beyond medicating and treating me for those, they do not know what is causing my Nausea, Vomiting, Trouble Swallowing and Severe Gut Pain that has hospalised me more than 4 times in the last year, nor do they know why I have lost over 3.5 stone and continue to lose weight even though I am keeping my calorific intake as high as possible on as many days of the week that I physically can. The team have read up on EDS where they have needed to and continue to educate themselves as we continue to investigate (The tests in Limerick are ongoing, even with another ERCP Operation with Bile Duct Sphincterotomy (where they cut the muscle) at the end of this month) but I feel we are still coming to a dead end, Especially when the symptoms have eased only a little and ultimately continue to cause daily trouble and the head GI specialist of the Limerick Team came to me already and said that it would probably be better if I went to London to see what ‘The EDS Experts’ have to say. So on hearing about the GI doctor in CUH who knew his EDS, I made an appointment and went down to see him and get his advice before I decided to go straight to London.

 

The first Cork appointment came in November and I was pleasantly surprised when I met him. He was very well read with regards to EDS, listened to my full medical history, symptoms, complaints, procedures, tests and operations that I already had. Went through the medications I was on and went through some with me that I had never heard of before but he wanted to do a few tests and X-Rays before changing my medications. When he heard I was interested in going to the GI specialist who he trained under over in London, he was delighted to refer me over and suggested that it was a great idea to get his opinion as he would have the most expertise when it came to treating GI trouble in EDS patients and he thinks this London specialist should be able to help me.

He immediately wrote up a referral letter as I was there as well as booking me in for some new tests in Cork hospital that are not available in Limerick. He said these test appointments would be sent to me in the coming weeks after the appointment and sure enough, they did, they came through very fast, a lot faster than I have experienced in Limerick. I had a Barium Swallow X-Ray done in January and still waiting on the results of that which will probably be given during the clinic appointment I have on Wednesday the 15th of March and I am currently waiting on a Gastric Emptying Test appointment which should arrive, I am told, in the next few weeks. Either way I am very impressed with this Cork based GI Specialist who knows his EDS, I will certainly stick with him, as well as the Limerick team, for now while I wait for my London appointment to come through.

Not finished yet! I have a Gynae appointment in the Maternity Hospital on Monday the 20th. Then that Friday the 24th I have an EEG back at the UHL and finally, The Big One! I have another ERCP operation thingy with a Bile Duct Sphincterotomy the following and last Tuesday of the Month, the 28th.

Sphincterotomy – Cutting The Muscle 

 

The ERCP and Sphincterotomy is to treat the severe pain, nausea and vomiting I am having because of what the GI doctors in Limerick think is Sphincter of Oddi Dysfunction. I have written and You can read about SOD and the ERCP procedures HERE.

I have already had the first ERCP procedure where they injected Botox into the SOD and you can read all about how (Kinda bad, though it inevitably worked!) that went HERE.

and that’s it!! That covers all appointments for March only! Every month there is usually something and it feels like, I only get out for doctors appointments these days! but what can you do?! 🙂

Lette xxx

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 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.

_______________________________________

…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

 

The Good, The Bad and The Emergency! – Part 1

*Please Find Part 2 of this post ‘HERE’

WOW!

It has been a long while, so sorry about that, so much has happened and I needed time to recover and get myself straight again before I decided to update.

Harolds Cross happened, and it was great!… while it lasted! Of course, we all know, nothing goes straight forward for me so yeah, there’s a bit of a story to go with it!
The day before I went up, I got my hair cut… It was A DISASTER! No, seriously, Look…

Me pulling the pissiest face ever! Never go to a cheap hairdressers! Jeebus! Lesson learned!

Then on March 15th I also got another new diagnosis (Neurogenic Bladder Dysfunction!)…yeay!
Lets just get straight into it shall we?

Harolds Cross – Rheumatic and Musculoskeletal Disease Unit (RMDU)

I’ll start with Harold’s Cross.

I got called up there for 2 weeks at the start of February, not really knowing what to expect, I had asked for other peoples experiences of the place in some of the Facebook support groups and I got very mixed reactions. Some people loved the place and couldn’t praise it high enough, yet at the same time, there were just as many negative replies from people who didn’t find it any good for them, at all.

I made up my mind that everyone is different and I wouldn’t know how I feel about the place until I gave it a good go myself!

Up early and ready to rock!

Up I went on the Monday morning. It was freezing hard and we had to be on the road leaving Limerick very early in order to arrive up in Dublin for 9am. We met no less than three car accidents on the way out of Limerick because of the state of the roads but thankfully it eased off passed Tipperary and then we were well on our way.

Icy roads at sunrise

Of course, I got us lost on the way through Dublin and that was with a SatNav, I know, it takes talent to get lost using one of those but there ya go!! We did finally arrive and in I went.

Harolds Cross is very large, with lots of different areas to cater for different medical needs, everything from inpatient palliative end of life care to week stays and day cases for varying degrees of physical disability and the individual treatments involved.

I was immediately struck by how clean and bright the place was and how very friendly the staff were. As soon as anyone saw the chair I was asked if I needed help with anything.

Once I was all signed in, I was escorted upstairs to my ward for the week, The ‘Sacred Heart’ ward and I was assigned to bed 13 under the consultant Prof. V.

13 seems to be my lucky number! I have gotten this bed number, 4 or 5 times already during hospital stays!

 

As soon as I was in the ward I was delighted to see it was spacious and open with two separate units, the first had three beds with men in them, then through an opening in the centre of the ward you come through to a bigger area of six beds, all women and this is where I was. The ladies all introduced themselves and everyone was so friendly, I was made feel very welcome and even more delighted to know there were another two EDS patients in the unit with me! One on my ward and another in the ward upstairs.

I was assigned a wonderfully kind young nurse with an English accent and she sat down for ages with me taking all my details and full medical history, telling me everything that I will experience going forward, what will happen, what is available and where to find everything. Everything sounded great so far.

I was to meet with the consultant first, he would come to see me on the wednesday of each week. Then the Doctor and nurses would look after my needs in between. the pharmacist would review my meds, and make sure everything was up to date and OK to see if anything needed to be added or taken away etc. I would be assigned an EDS aware physiotherapist to work with my individual needs on a daily basis and an occupational therapist to cover everything else like home needs, medical aids and equipment, pain management etc. other services included Podiatry, a specialist foot care clinic that could fit you for orthotics, a social worker who gave advice on social welfare, back to work or college needs as well as a stand in as a bit of a psychologist if you needed to vent! There were relaxation classes and specialist talks on various weeks covering things like pain management and the like.

I was utterly delighted to find out that they had Therapy Dogs that come and visit the centre regularly and I was lucky enough to get to meet ‘Rian’ one day on the first week, a beautiful, great big, gentle, golden retriever that I spent time giving rubs and loves to! 🙂
On the ward then, as well as handing out and sorting your medication, food (which was mostly fresh or freshly made that morning as well as doing what they could to cater for special diets and allergies!) and some other needs, you could also request hot or cold packs if you needed to sooth sore, achy joints and muscles. I thought that was a lovely touch to be honest and I wish it was available in all hospitals. Hot packs, for me anyway, bring another level of comfort that cant be touched by conventional medicine.

The food, staff and facilities were really great and they did what they could to cater to special dietary needs!

They have a hydrotherapy pool also so this should have been part of my treatment while I was up there, however, they were in the middle of renovations and unfortunately a couple of weeks prior to my going up, one of the building machines ended up bursting a water pipe and put the pool out of use for the time I was there. This was a huge pity as I feel the water would have helped hugely in the exercise and also in helping the muscles to relax and recover while there, but it was not to be this time anyway!

The first day was all about settling in and finding my feet around the place, after the traveling up and all the new sights to take in, I was tired and ready to rest. The very next morning I met the consultant.

Sleepy time in Bed 13!

He was friendly, had clearly read through my file and extensive medical history and went through all that with me. He was clued in about EDS, but just generally I found. Anything he said to me, wasn’t new, it didn’t blow me out of the water by any means but he knew what needed to be done to help, he was reasonable and didn’t pretend to know more than what he did, which I appreciate in any doctor.

With his advice my treatment was about to begin properly, the doctor and pharmacist went through my medications and it was determined that, because of the issues in my gut and the fast weight loss I experienced, I was more than likely not eating enough calories most days, and on the days I was eating enough, I seemed to be not retaining the nutrients and calories and as such, continue to lose weight and energy. They tried me on a few different types of nutrient drinks to help me along and wow… they all tasted rancid! I cant have lactose or wheat so I could only chose from a handful of watery, metallic tasting ickiness!!

Forti-yuck!

However, I was there for treatment, and I was going to give it a good go so I drank them but as I was particularly nauseous that week, a lot of what I ate and drink didn’t stay down.

The next big chunk of treatment, probably the biggest was physiotherapy. My assigned lady, lets call her, ‘A’, she was a gem! She really took her time during our first assessment together where she examined my body, all the problem areas and even finding problem areas that I didn’t even know were problem areas!!

I found her to be very good, very clued in about EDS and was extremely careful not to push the areas that caused most trouble. She understood that ‘feeling’ the muscles and joints being used was ok, but there should be no pain.  She was all about increasing mobility out of the wheelchair but she never dismissed the chair and it was always there for when I needed it as of course I would need it continuously going forward. She understood that EDS isn’t curable but that exercise would help better define the weak muscles and as such they would help keep the joints tighter and better hold them in place, preventing further subluxes and dislocations. Other than that, bringing up my general fitness was another priority that would only benefit me going forward.

Once the assessment was all done, she had a printed, individualised exercise program ready for me to follow on a daily basis which included a simple warm up on a bike, starting at 2 to 3 mins with no resistance, if I could even reach that, hopefully as I continue the week, ill be able to increase that time by tiny amounts. From there I had floor exercises to follow that concentrated on my lower body problem joint and muscle areas. After these I had some standing exercises to concentrate on problem upper areas of my body, followed finally by some work on the parallel bars to help practice walking short distances, resistance band exercises and finished with a cool down, simple stretches to some areas and lastly relaxation on a physio bed with heat packs.

My constant companion in the physio room!

 

Though I had been very ill the first week with vomiting, it had still gone amazingly well.  I arrived on the tuesday and found everything to be excellently run at the center. The staff, the food, the facilities everything had been really good and before I knew it it was friday evening and time to be coming home again for the weekend rest before going back up the following Monday morning. This was both a welcome and a tormenting touch to the whole stay.

Getting up and down from Dublin to Limerick was not easy, there were early starts, long journeys in the car which are tough with chronic illness at the best of times and no sooner you get settled back home for the weekend, you are getting ready to drag everything back up to Dublin again. Going by train wasn’t really an option, even with free travel, traveling with chronic illness is unfriendly to other passengers when I need to vomit after 20mins of vibration! Getting from the train station to Harolds cross with bag and baggage wasn’t really feasible either, needing to travel with a wheelchair and carrying crutches, other medical aids and a ton of medication wouldn’t have been easy, so driving straight there and back in our own car, at our own leisure was a more comfortable option for us.

I also found seeing my hubby so briefly for the weekend was a lovely treat in the middle of my treatment but saying goodbye again can be horribly tough. I understand not everyone who is sick has a partner or ‘better half’, but I think this goes for any family members you may come home to including parents, siblings, close friends, carers etc. Seeing anyone you care about for such a short time and then saying goodbye to them again is never easy, no matter who you are!

I know Dublin is only ‘Up the road’ by some peoples standards but it’s still a good 3 hours travel time to and from the place and that takes a massive chunk out of your day. It doesn’t make the 2 hours visiting hours seem worth it when traveling up takes so long around it!
It also costs a lot on petrol so we decided to drive up and back but to leave visiting during the week as it wouldn’t be worth coming all the way up when the visiting hours are so short. Thankfully Skype made this a whole lot easier and I spent a lot of time on video chat home to himself and the pup!

As I had been very sick during the first week in Harolds Cross, vomiting almost daily down on top of the increased activity it turned out I had lost over 2 kilos after just 4 days. By the time I got home during the weekend I was in excellent spirits and couldn’t wait to get back up but I was very low on energy and spent most of the weekend sleeping to catch up on my energy reserves for the next week. This had my husband slightly worried and he wondered if I should return back up at all. I decided to give it a go anyway. I wasn’t going to be given this chance lightly again so I really wanted to give it my best shot.

Back up bright and early on Monday, I was launched into everything again straight away, Physio, OT appointments, I was to meet with the pharmacist this week too as well as the foot care clinic to get fitted for Orthotics for my very flat feet, a busy week planned, I was excited for it, but I was so very tired…

I got through Monday, but the pain and nausea started to get very bad by bed time. I had been vomiting on and off throughout the day, found it very hard to eat, even to stomach taking a drink of water. The back of my lower head and upper neck were beginning to sear with pain, I had very little sleep, was extremely uncomfortable and by Tuesday morning I started getting visual auras.

The staff were excellent. I informed them of the symptoms and they kept a close eye on me throughout my stay while I was unwell but especially this day. They kept track of my hydration and food levels, taking note of what volume I had gotten sick etc. My head was terribly heavy and my stomach was very sick. All I could do for a lot of the morning and afternoon was try and sleep.

By 2pm, I felt one of the nurses touch my shoulder and gently wake me to say,

“Lette you’re due down in physio, ‘A’ wants to know if you are going to go down or leave it today? It’s entirely up to you, take a few minutes to wake up and see what you want to do.”

I had been asleep for over an hour at this stage and had been resting all morning. I woke feeling tired but not as sick as I had been so I decided I would go down and try to do a small bit at least.

When I arrived at the physio room, ‘A’ greeted me and I told her I had been feeling very unwell. She understood and told me to take my own time, not to push myself too much and if I needed to stop at any stage to just do so.

I started my warm up on the bike and though I had managed to increase my warm up the previous week to nearly 6 mins, today I could only manage 3 minutes and it felt like the longest 3 mins of my life. Once this was done I had my floor exercises to do so grabbed my crutches and slowly hobbled my way over to the matted area with my printed program in my hand. Got down onto the mat to start my leg exercises and started to feel very strange. I slowly finished what needed to be done and I sat up to try and gather my head. ‘A’ came over and I told her I started to feel very odd. She got a chair for me and brought it over next to me. I tried to get up onto the chair and did so with massive difficulty. I felt like I was moving through treacle and my vision was begining to go black. I told her I couldnt see properly and she helped me into the chair, told me to take a quick breather and that she would be right back.

At this stage I actually couldn’t see properly at all, everything was going in and out of oily blackness alternating with swimming milky white blobs. I felt pressure build in the back of my head and push forward through my sinuses and out my ears.

I leaned forward resting my elbows on my knees, feeling a trickle of sweat tickle as it ran down my forehead, over the bridge of my nose and felt it drip off the end. Everything happened in slow motion.

The sound stopped all around me, everything now pitch black, the pressure in my head was immense, burning nausea rising in my throat which felt like it was now closing up, breathing hard, heartbeat flying…

 

heartbeat…

breath…

 

 

 

the last thing I remember was falling forward…

 

 

 

 

 

 

*Part 2 – NOW HERE!

Jan 2016 Updates and Harolds Cross Rehab News!

The last time we spoke, I had said I would write back to update you on the last couple of hospital stays, latest medical related news and now I have heard back from Harold’s Cross RMDU and they want to book me in on the 8th of February so now that is also something to prepare for!

When admitted last in October, I was in for severe pain in the base of my skull and neck. With this pain I was having severe headaches that seem to come on worse just before a seizure kicked in, of which I was having many episodes prior to being admitted to hospital.

An ambulance was called because I had a strong seizure that lasted more than 10mins and over 30mins by the time the ambulance crew arrived. Though Keith told them I was allergic to Benzos, they said: “its the only way to stop her seizure now so we will give her some and watch her closely until the hospital anyway”

In the A&E I was immediately taken into Resus where they got me under control, monitored me for a while then placed me in a corridor again in the main A&E area. I wasn’t there for long as I very briefly remember Keith arriving to talk to me then apparently I went into another big seizure where I was rushed back into Resus again but this time I was kept in there for longer.

They put me on a phenytoin infusion to stop the Status Epilepticus  (a seizure that lasts too long) but of course I am allergic to these medicines so I had a bad reaction to the infusion at the IV site and my arm swelled up a huge amount, my BP dropped dramatically and I started presenting with Cardiac arrhythmia’s and it had to be stopped!

Once things settled I was admitted to a ward and eventually seen by a new doctor, A Cardiologist who said he would take over my care once I explained in detail that too many consultants are part of my medical set up that there is no communication between any of them. He was completely unaware of my situation himself at that time but once he realised I had in fact 3 very large old medical files (He was working off a new one that was put together only in the last 6 months and has none of my long history in it)  he ordered the old files to his office so he would read over them in detail and he said he wanted to be my head consultant, if I would have him, so that he could be the ‘go between’ amongst all the consultants! I said that would be great, but I have yet to meet him outside of this admission, I have an outpatients appointment with him on the 22nd of Feb so I will be eager to see how he wants to handle my care from then on. When inside I was seen by my usual Prof. Pain Specialist and he gave me Occipital Nerve blocks to help with the pain in the base of my skull and the severe headaches that go with it. These nerve blocks were a huge help numbing the pain and as a result there are less seizures with the less pain too.

Then over the first week of December I was admitted to hospital again. This time for something completely different… I couldn’t pee, I know, I know, not pleasant to talk about but look, this is the sexy life I lead!!

So once I explained to my doctor what was happening over the phone, Low body temperature and feeling very unwell the week prior, then all of a sudden, total urine retention,  he said get straight into A&E, apparently not being able to pee is serious, I hadn’t even realised so in I went and actually got seen straight away! A catheter went in, lots of questions asked to see if we could get an answer for it and all that could be found initially was it could possibly be the combination of medication I am on or the Gallbladder related severe pain and slow gut motility may have something all to do with this, we wouldn’t know until I was admitted and lots of tests had been done.

After a week of many scans, tests and some invasive procedures, I was put on what is known as Intermittent self catheterisation  for Urine retention because of Bladder and Kidney dysfunction. I was given a lil goody bag full of things to use for it (See below, I’m all girly about the bag, innit pretty?!!)  and I have to do this daily at home until I get called back by Urology to do more bladder and kidney function tests to see if I will continue this method or possibly be given a procedure to place a permanent catheter (I would really rather not have that, I don’t mind this method at all now that I am used to it!)

My pain specialist prof. came to see me because of the Gallbladder pain I was in too and though I had been given ‘anti spasmodic’ pain killers as is recommended to help treat the Gallbladder pain, they also put me on Morphine to take very regularly at home on top of the anti spasmodic pain meds, daily, to cover all the different pain I am under on a very regular basis. I don’t like being on Morphine at all, it completely messes with you sometimes but it no doubt helps the pain, it doesn’t even take it away but helps more than anything else I have been given.

Im currently still waiting on that Urology outpatients appointment.

While admitted in December, the Urology doctors also wanted my Gallbladder to be looked at again while I was in but my G.I. surgeon was on annual leave and I couldn’t meet him until the 5th of Jan. When I did, he was great as always, very thorough and not wanting to jump the gun with my treatment. He said to me,

“The easiest thing for the both of us would be for me to whip the bloody thing out, it would only take me about 40 minutes and you would probably be sorted. You do have sludge in the Gallbladder, but theres no guarantee that will ever turn into stones, it is dysfunctional but I don’t know with your EDS, could it cause more harm than good? given the possible healing issues and the fact that you have very slow gut motility and also losing weight, You may need that reservoir for fats going forward, even if it is faulty, so I don’t want to make too hasty a decision, even if it is causing you this pain.”

What he decided to do was take my mobile number, ordered my full documentation and files to his office so he could fully study my history before making his final decision on the matter and if he doesn’t decide to take it out, he said he would at least try to do something for the Gallbladder pain as it is arresting my life at the moment and I have lost a lot of weight since this all started in December 2014. He said he would ring me before that weekend and was true to his word and called me back on Friday the 8th but only to say they couldn’t find my old files! I suggested they may be with the new Cardio who wanted to take over my care while I was in, in October, as he wanted my files too, so I passed on the details and will wait a little further to hear back on that.

In the meantime, I have also heard back from Harold’s Cross RMDU. It had initially been suggested by Prof. Rodney Grahame in London that I get referred there as it could be great to try and get me out of the wheelchair full time but even though I was told in December 2014 that I had been referred up, I had heard nothing back all year. I only found out last week that they had my referral all along and that they wanted to admit me in May 2015 (Last year!) but due to a mixup I never got the appointment.

Mistakes can happen and it is sorted now, they want to admit me on the 8th of February for my first weeks trial where I will get intensive, Physiotherapy, Hydrotherapy, Occupational therapy and daily pain management techniques to help me live long term with my illness and hopefully get me more mobile, all the while being under constant nurses and a consultant rheumatologists supervision incase health things go south and they can refer me to a local hospital if that happens.

They will admit me for a week, Monday to friday and I will be sent home the weekend and brought back in again the following week if it is deemed necessary to continue the treatment. I have heard lots of reviews, many mixed but mostly positive, so I am interested to see how it will go for me, of course, I will report fully on how it goes and if I found it beneficial and suitable 🙂

Until then my next 2 appointments are on next Monday the 18th of Jan for a Pots Clinic check up and then on the 28th with the Prof. Pain Specialist who will give me some Greater Occipital Nerve Blocks (into the base of my skull/top of my neck) and Sacroiliac joint and hip Steroid injections.

It’s all go until Harold’s Cross kicks off and I hope to have a couple of blogposts up before I go up, so keep your eyes peeled and as always, THANK YOU so much for taking the time to read 🙂

Lette (Fainting Goat)

A Year Today!

Can you believe it is a year today since I took my first trip over to London to meet with Prof. Rodney Grahame at the Hospital of St. John and St. Elizabeth?

While I was there, I had some tests and I received a confirmed diagnosis of EDS (Ehlers Danlos Syndrome) Hypermobility type with Gastro issues. You can read the full blog post I did about that experience Here.

The diagnosis and treatment plan I got there proved invaluable to me here in Ireland to help my Doctors treat me and even still, I am still waiting for my Harolds Cross appointment to help me get back walking!

I was due to go back over to London for further tests and much needed treatment but I have been too unwell and practically housbound when I am not in hospital over the past year to plan anything. I have been admitted to hospital 5 times since my visit over and I also have been diagnosed with Gastroparesis in that time.

However, things are getting worse especially in the Gastroparesis area of things and I still need to get back for the treatment as soon as I am well enough to travel and make plans.

The Medical fund is always open if anyone would still like to contribute or even just to share the link, I would greatly appreciate it, because without it, it would be impossible for me to pursue the correct course of treatment as there are no EDS specialists anywhere in Ireland and traveling abroad is not fully supported at all under the HSE travel abroad scheme.

I would just like to take this opportunity to say Thank you to everyone who has helped so far, to my family and friends and especially my amazing husband Keith. You have all been so supportive and helpful and I couldn’t have done it without you 🙂

Thank you,
Fainting Goat (Lette)

The Sphincter of Oddi and Other Stories!

Say that in the voice of the narrator from He-Man and you have a pretty formidable title there!

The last time I was admitted to hospital at the end of March, early April the surgical team came to the conclusion that I could possibly have something called Sphincter of Oddi Dysfunction (SOD) that was being masked by what they thought was Gallbladder pain.

In the last blog post I outlined what this was and that there is a test to check for it called an ERCP, endoscopic retrograde cholangio-pancreatography, a procedure that uses an endoscope and looks directly deep inside the duct system while taking pictures and measuring pressure. You have to be sedated or under general anesthetic as it is way deeper into your system that they have to look than a regular esophageal, stomach endoscope or similar.

While they do this, they inject some Botox into the tiny sphincter itself which relaxes it and allows it to open again. If after about 2 weeks your pain is gone, this is a sign you have the dysfunction. Sometimes if the pressure in the bile ducts is measured as too high or if the surgeon deems it necessary at the time they will cut the sphincter muscle first time.

Cutting the sphincter of Oddi muscle surgically during an ERCP is called a sphincterotomy. It’s generally effective and relieves symptoms of SOD about 70% of the time.

The long term cure for it? a series of ERCP’s where again I will be put to sleep and they have to cut the sphincter to weaken it to the point where it can’t clamp up any more. This should take a few turns because if they do it all at once and cut straight through it, there is serious risk of heavy bleeding and Pancreatitis with this so they do it in small stages over time to make it safer.

A video of the procedure can be seen here, if you have the stomach for it! 😉

Since coming out of hospital in early April, I have had a number of follow up appointments. I’v been seen by a gastroenterologist in Nenagh General Hospital. He reviewed my case and changed my pain meds saying that the morphine I was on was a spasmodic drug and wasn’t helping the pain in my side so told me to ween off them and start other anti-spasmodic drugs which he prescribed. He also gave me new antiemetic meds for my stomach and gut as I am constantly having trouble with it. He said getting back over to London to a GI specialist over there when I am well enough is greatly advised, but to wait until I am well enough.
He also prescribed me with a spray for under your tongue, usually used for people with angina but said as it’s job is to open the blood vessels and relax muscles that it may help the pain in my side, and it really does, although drops my blood pressure and gives me a cracking headache but I would rather have that than the pain in my side!

I have been to the Pain specialist in Croom hospital for more injections into my Sacroiliac joint and hips which usually takes about 3 days to a week to kick in, but of course I got cocky and tried to hobble out of the bathroom the day after getting them, without any chair, crutches or support, thinking I could do it and SMACK! I slapped off the ground hurting my hip, but thankfully not seriously so it has healed again and the injections have slowly begun to work to ease the pain in my lower back and hips. Unfortunately though they only ever last about a month so I am coming to the end of that relief already.

I was back into the University Hospital Limerick for a follow up from when I was admitted last and to see when my ERCP will be. I was told I should be called sometime this month so I am currently still waiting on the appointment and hopefully I will be called soon as it is getting very sore and uncomfortable.

and finally… My powered wheelchair finally arrived! I had to chase it up through the local OT manager because I was getting nowhere emailling my OT about it. The manager got things moving immediately once she knew I had been waiting nearly 2 years and the replies to my emails were just one excuse after another, it finally arrived a couple of weeks ago, Miles too big for me, refurbished and not new but mine, great fun and gives me great freedom! The powered chair deserves a blog post of it’s own so I will do that as the next post. It’s name is Marvin and I’ll explain where that came from too! 🙂

For now, that’s all my current news! 🙂

Vanos Excel G3 Light Wheelchair Review

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