#REDS4VEDS Vascular EDS Awareness

 

It’s that time of year again where we all try to raise awareness of Vascular EDS, the scariest of all the EDS’s. It is in conjunction with Annabell’s Challenge and originally organised by @TheZebraMom and EDS Awareness Ireland. This campaign has gone global now (Well done to the creators!) so lets keep it going!

1: Wear Red
2: Snap a Creative Selfie
3: Be sure to use #REDS4VEDS
4: Share on all your social media accounts
5: Tag or Share with 3 others so that they will do it too and we can carry on the love!

Thanks Folks

Happy #REDS4VEDS Day! 🙂

Advertisements

Ambulance Time Once Again!

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

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

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

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

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

13886347_10206340743588654_3510472488398338550_n

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

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

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

I once again had terrible trouble getting veins in me, doctor after nurse after doctor tried and failed and it started getting really sore. The vein the Ambulance crew had gotten was already failing just a few hours after it was put in, my foot swelled up  and they were worried as they really wanted to administer fluids and iv meds so they wanted a vein soon. Throughout the following week while in the hospital, this continued. a vein would be gotten and it would fail almost immediately until in the end the anaesthetics team had to be called and they had no trouble getting a vein and thankfully now a note has been put in my file to say that only anaesthetics are to place a cannula on me and no one else, so hopefully all the prodding and poking will come to an end now.
13892330_10206343306092715_7155029115265373122_n

13873036_10206349673611899_3884711729051176394_n

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

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

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

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

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

14117688_10206454515512881_1228631297097725236_n

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

In the Ultrasound Room!

In the Ultrasound Room!

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

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

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

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

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

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

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

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

Thank you as always for taking the time to read.

Lette ( the fainting goat!)

The Blog Awards Ireland 2016 – Nominations Now Open

Hi all,

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

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

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

9at8VqHyRMi4E9iScv0e_Nominate

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

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

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

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

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

The Category is ‘Best Blog Post’ – Personal Blog

Blog-Post-Button-e1463408928620

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

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

Thank you once again,

Lette – Fainting Goat!

EDS Awareness Month – 2016

448381a8939fc4c75eb9e7263ad9107e

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.

IMG_20160501_214031

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!

Admitted after the ERCP – Possible Bowel Pacemaker!

Things never just go straight forward, do they? Nope! and of course, this time was no exception!

In I went to the UHL on Tuesday the 21st at midday, all prepared for my ERCP procedure to be done and so I could be kicked back home that evening to recover, however, little did we realise just how long it would actually take!

They popped me on a trolly as soon as I arrived as I had been dizzy all morning and they didn’t want a risk of me fainting and deemed it best that I wait in as comfortable a position as possible as I could be waiting around for a few hours.

I said my goodbyes to Keith and the nurses told us to expect to be in until at least after 5pm. Keith went home and I lay on the trolly waiting for things to start happening. There wasn’t even signal in this particular part of the hospital for my phone so I had no internet, texting or anything to distract myself!

All was well until they needed to take some blood from me and wanted to insert an IV line. This is when all the fun started!

3 nurses tried and failed, 2 lads from the Cath Lab tried on not only my hands and arms but also on my feet (Very uncomfortable to say the least!) and failed, One of the theater consultants came out from doing an operation to take a look at my veins, checked them over and said, “Nope! I will hand it over to Dr. Moloney!” (referring to the consultant who would be doing my procedure in theater)

Finally at about 6pm, Dr. Moloney comes out of theater to take a look at my veins and decides, “We don’t need bloods anyway, not to worry about it and I will pop an IV in, in theater before the procedure”
So that ended the long wait around waiting for someone to be able to find a vein, now it was time to actually get this done! The nurse helped me into a very sexy blue paper theater outfit and pushed me into theater where there were 2 nurses, the first tall doctor who had earlier come out to check my veins and said ‘Nope!” and the good doctor himself who actually successfully found IV access after a few attempts, Excellent, time for sedation… am, about that…!

I have a sensitivity to Benzodiazepines, having ended up in ICU last year after being treated with them for seizures I started having in May 2014. It turned out the first seizure was caused by a complete once off event of a lack of oxygen to the brain after a Vasovagal Syncope where I had stopped breathing. The Ambulance staff immediately treated me with Benzos, the standard treatment to stop seizures, not realizing that the more Benzos they treated me with the worse my seizures got. I was treated for these seizures over the course of about 3 months with these drugs until such time as I ended up in the ICU before realising that it was the Benzos causing all the trouble.

Thing is, Benzos are used as sedatives in minor surgeries and procedures too, which was meant for this ERCP, so the Dr. decided to sedate me through the IV with something else they had, that would make me feel a little drunk, but I was still wide awake and feeling everything!

They sprayed the back of my throat with something nasty tasting to numb it and popped a round yellow thing in my mouth, between my teeth to keep my mouth open so that the endoscope could easily pass through. My eyes watered as the scope went down my throat, into the stomach and pushed through the duodenum.

I kicked out and squirmed in intense pain as soon as this happened. I gave the doctors and nurses a good fright too as they were under the impression that I was sedated!

The Dr. looks down at me,
“You’re still with me, yeah?”

I look directly at him while gripping my right side in pain and I nod quickly!

He looks at the nurses and said
“Ok, no cutting today, lets just do the Botox Injection to numb the site, make it quick!”

He tells the other doctor to give me extra pain relief and sedative as he quickly tries to inject the site. I feel the sharp pinches of the needle, they are completely bearable compared to the pressure and pain I feel because I presume of wherever the scope is after leaning.

The procedure is done quickly, I am given more pain relief and feel the earlier sedative continue to tingle the back of my skull but the pain is still there as I am wheeled into the recovery area to be monitored.

The Doctor comes out to check on me and says that if the pain continues I will have to be admitted. I am watched for a couple of hours where I begin to spike a temperature, a reg doctor is called for me, I am put on IV fluids and painkillers and am admitted to a ward by 8:30pm.

16998_10204187770205665_8163888618397687094_n

In the confusion of trying to get me settled into the ward, make sure that I am properly assessed and medicated, the transfer of my regular meds list (Daily meds for Pots and EDS pain, some of which I cant just suddenly stop) to the nurses on the ward went a little askew and would come back to haunt me in the next few days, but ill get to that in a minute!

After many uncomfortable, sweaty, loud and painful hours they finally found a concoction of meds and opiates that got on top of my pain enough for me to want to rest for the night without feeling the need to moan loudly and annoy others in the room. I didn’t sleep, even with a sleeping tablet and much morphine but I really needed the rest.

I ended up staying in hospital over the course of a full week, in lots of pain and having major trouble with my Gastroparesis because of the opiates I was on. They wanted to keep an eye on my bloods and me to make sure nothing dangerous happened during the ERCP, incase I may have an infection or something as I was spiking temperatures on some days but thankfully this was not the case, I was just in a lot of pain.

On one day, I requested pain meds in plenty of time as I felt pain coming on only for the nurses to have been busy and left me without for a couple of hours. I ended up fainting after returning to my bed from the bathroom and I frightened the other ladies on the ward!

It turned out that when they initially admitted me to the ward my regular meds list got taken down wrong and they hadn’t been giving me my full regimen of meds that I normally take so my bp was all over the place and on the day I was due to be released my HR went up to 163bpm but settled again later with rest.

Prior to letting me go my Gastro surgeon came to talk with me and went through my meds and everything I would need going forward to help with pain and the Gastroparesis difficulties.

It looks as though things are getting worse in that department. I am losing weight, having difficulty eating anything without severe pain, bloating, nausea and vomiting and he mentioned the possible need for a Pacemaker in the bowel in the not too distant future to help with the ‘slow’ and sometimes ‘non existent’ transit in my gut, of which he wants to discuss further on my next appointment with him which is the 15th of Sept.

I was let go home a week after being admitted on raised pain meds and antiemetics with orders to take it slow and steady until they see me next month. I have been very sore and very sick. Pretty much bed bound nearly every day since being released and have even had a small seizure for the first time in over a year but I am able to keep the bright side out. Even lying in bed there are things to watch and I am eternally grateful for my wonderful husband who provides all of my supports.

So for now I am recovering slowly, I will see the specialist again next month and until then, I will keep you all updated with things as much as I am physically able 🙂 Ideally I need to get back over to London where they are specialised in those with EDS, to meet a neurogastroenterologist however, I need to get better before being able to travel once again, can you believe it has been a whole year this month since I first went to London for treatment? that story can be read here 🙂

Please remember, I am most easily able to keep the Facebook and Twitter pages up to date most frequently so be sure to check us out over there too for almost daily updates and thank you for following this humble bloggy! 🙂

Oh Dear! Spare a Few Likes!

Screen shot 2015-03-21 at 22.34.08

Hehehe! As you can see we are stuck on a funny number of likes over on the Facebook Page! If you have a moment, please click in and give us a like, Thank you! 🙂

While you are at it, check us out at these following links, I would love to hear from you 🙂

Facebook
Twitter
Youtube
Spreadshirt
Email

Dysautonomia Diagnosis Update – 2014

As May is EDS Awareness month and I was asked to do an update on my Diagnosis story to share with you all to try to raise a little awareness of the condition, here I am once again, another year later, 2014 already and lots has indeed happened in the last year that I can add onto the overall diagnosis story.

If you would like to read 2013’s update and the full background of my diagnosis, you may find that here.

So I will give you a brief background to get going, then the updates from the last year or so.

In April 2011, after nearly a month in hospital and numerous medical tests,  a Tilt Table Test confirmed a diagnosed of Postural Orthostatic Tachycardia Syndrome and Neurocardiogenic Syncope also called Vasovagal Response.

In October 2012 I was diagnosed by a Reumatologist in Cork that I had Ehlers Danlos Syndrome Type 3 Hypermobility Type, which in turn would be the organic cause of the Pots.

My symptoms and signs at the time, and still do consist of Syncope (Fainting) sometimes with no breathing and with seizure like activity, It has happened countless times now, and some of the serious fainting without breathing has caused short term paralysis in my legs and lasting neuropathy. I have Very Low Blood Pressure, Dizziness, Severe Nausea and tummy/gut trouble and vomiting, Excessive fatigue, Costochondritis, Easy Bruising, Blue Sclera, Severe pains in my Joints mainly in the lower limbs, back and right shoulder.

I take 18 tablets a day, 8 different kinds spread out over 3 times a day.

Last year saw a big improvement in my health that I was just feeling well and fit enough at the start of the summer to think about applying for jobs once again, then in April 2013 I had an interview, they called me for a second interview and I landed the job. It was perfect. I worked from home, on a set schedule where I had to sign in online at a certain time and be available to give tech support to customers calling in. All tech was provided, I won’t name the company but needless to say, I adored the job. I worked hard, I was actually doing really well and made lots of friends.

Everything was going amazing until my Pots started acting up, sometimes I had to put people on hold as I hacked into a bucket! The pain in my pelvis, hips and lower limbs became so much that crutches no longer supported me well enough.

In August I was in a wheelchair, In September I was admitted to hospital for 11 days for investigations and pain management. The specialist advised that I didn’t return to work.

I was in a little shock I think, the job was just working out, then out of nowhere…
We had to take time to let it all sink in, it did, we had our ‘Why Me?‘ moment, yes, I just did that! 😀 and then I realised I had to sort everything out, like work, social welfare, adaptations, treatment like Physio & Hydro Therapy, Occupational Therapist, Pain Management, Learning to live needing a wheelchair, for now at least (I live in hope, but I’m not delusional!!) 😉 :p

There was just one morning after I got home from the hospital and had let it sink in where, I just said, screw this, it’s not going to do it’s self! Keith and I got to making lots of phonecalls and got an Occupational Therapist and Physiotherapist on the go, I rang to end work and get all that sorted and only started going about the process of applying for certain social welfare and home needs which to my surprise had been cut substantially from what had been expected. Only in recent weeks have I been told that I will not hear anything back from the Housing Adaptation Grants (if at all) until ‘at least’ 2015!

My Occupational Therapist is amazing, so utterly helpful and always tries to do what she can, My physio is also very helpful but unfortunately I only get to see him roughly once or twice a month. I had started Hydrotherapy, found it very helpful but then had a syncope in the pool and that was the end of that! So for now, I am not getting much in the way of physical progression with my legs, though I do hope to try and get referred to Harolds Cross in Dublin, where they do intensive, in house, Occupational, Physio and Hydro therapy, while you are accommodated at the hospital for careful monitoring, but we will wait and see!

What a lot of people don’t realise is that, there are NO Dysautonomia specialists anywhere  in Ireland, some have a bit of knowledge around Pots but not EDS and NONE have been trained specifically to treat these conditions, so treatment is more of a mix of everything they think you need, a stab in the dark, and then there is no communication between the different doctors that are treating you. The closest specialist Autonomic center and Qualified Specialists in the field of Dysautonomia are in London and the HSE simply doesn’t want to know about sending you over to get the treatment you need. They are also refusing the Travel Abroad Scheme to the majority of people who apply for it. To go over privately is simply not an option for the majority of us as we simply cant afford it.

Since being diagnosed with Pots originally in April 2011 and EDS in October 2012, I still faint, I also have syncopies where I can have seizure like activity and I can stop breathing with all faints, Some of which have left me with paralysis and long term muscle neuropathy. I constantly have pain and often severe gut and tummy trouble with the EDS and it’s complications. I am now in a wheelchair a year come August and I have had many ambulance rides, rushing me into emergency and I still regularly have many hospital stays, visits and appointments.

but you know what? I count myself lucky! Things could always be far worse and I am very lucky and endlessly thankful for certain people in my life, Namely, my husband, I would be truly lost without him ❤

My family and friends deserve saint and knighthoods for their patience with me as I can never commit to anything, but such things are out of everyones control.

For now I keep myself busy and roll with whatever is thrown at me!

Thank you for reading my story 🙂