Syncope in the Hydro Pool, Caused a Small Panic!

So there I was, after putting down 2 weeks of being ill and fainting all over the place, I had canceled hydro and physio a number of times due to the flare up, there was just no way I could physically do it.

I was finally feeling better, no faint in about a week and I was sitting on the transfer chair in my swimsuit, waiting to be lowered into the water.

“Hang on”, said the physio.

The assistant stopped turning the crank and the chair stopped dead, my feet hanging off the end, just above the water. I was suspended like a prisoner as she took a look.

“You’re looking pale, how are you feeling now, are you sure you are able for this today?”

I reassured her that I felt well, which I did, at the time… but that I could not guarantee that I wouldn’t faint, as that is the nature of the illness!
She looked at me skeptically and gave in.

“Alright then”, she gestured for me to be lowered in and down I went.

I felt the warm liquid envelop my skin like I was being evenly coated in wet cellophane. Regular pool temperatures reside at about 28ºC while this and all other Hydrotherapy pools stay at about 35ºC  which feels… lovely, actually :D

Warmth and Pots don’t usually go well together, this had never bothered me before now.

The physio kept a skeptical eye on me as she gave me some exercises to do and went over to help another patient in the pool.

Leg raises, looking around, warm pool, sunlight pouring in the windows… No warning…

Darkness… a sound of water in my ears… muffled, panicked voices, bubbles, water in my eyes, ears, mouth, I cant breath… Darkness…

I cant remember anything only those snippets until I woke up suddenly, some time later  with pretty severe pains in my chest and ribs. I woke but my eyes were still closed, I could hear a siren going off. Urgent voices, someone counting… that pain in my chest again…

1, 2, 3, 4, 5, …

1, 2, 3, 4, 5, …

Chest compressions, well that explains that!! I must have made some sort of movement or noise, though I couldn’t talk at that point, the physio scooped up my head and asked me to open my eyes.

BLINDED!!! oh gawd, just white light for a few moments then I could see… everyone!!!!
where there was only the Physio and her assistant before, now there were a tonne of people standing and kneeling around me!!

A few nurses, a couple of surgeons (no seriously, he was the only head doctor on call that day so he and his assistant came down from surgery in full get up!!)
A couple of porters, a load of physios that I had never seen before, and some lady in a suit asking a load of questions and rushing around filling out paperwork!!

I had to be kept on the ground for a while to keep an eye on me and to try and wait for my BP to rise again, apparently I frightened the crap out of them!! When I was out, the physio couldn’t find a pulse so decided to start chest compressions on me after they got me out of the water… I was nursing those ribs for a good 5 days after it but how can I complain? She did her job and did it well with what happened!

Anyhow, making a long story slightly longer… That is the end of Hydrotherapy for me for the moment as they don’t want me back until the syncope is under control. I am peeved to be honest, I found it very good, but I understand why I cant take the risk so Ill be sticking with dry physio for now!!

Not much going on at the moment other than, still waiting on the Motorised chair, no idea when that is coming. I am due a load of different hospital appointments but no sign of them yet, I have to be called for painkilling injections in my sacroiliac joint and hip, again, no idea when they are coming and other than that I am just tipping away trying to keep myself busy.

So, How are you folks doing, any news for me??

Management of Hypermobility Syndrome – one day course – 8th March 2014

Heads up Physio Therapists (or if you would like to let your physio know about this) Dr. Jane Simmons, from Prof Rodney Graham’s team (he is known as ‘The specialist’ in the know on EDS and Dysautonomia, based in London – This is happening the day after the EDS Awareness Ireland Conference, again in Cork, would be very well worth going for your physios if they can make it :

Management of Hypermobility Syndrome – one day course
Date: Saturday 8th March, 2014
Venue: Performance Physiotherapy, 26 South Bank, Crosses Green, Cork
Contact: Sinead Murphy performancephysiocork@gmail.com
Facilitator: Dr Jane Simmonds
Organiser: Sinead Murphy MCSP

UPDATE: This is open to Physio Therapists only, so pass on the info to them :)

EDS Awareness Ireland Conference 2014

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Here is a little poster I threw together for EDS Awareness Ireland, This will be an amazing conference on March 7th. at the Silver Springs Moran Hotel in Cork. Professor Rodney Graham who is chief medical advisor to the HMSA at the University College London will be joined by Dr. Jane Simmons, Clinical Specialist in HMS and EDS at the Hospital of St. John and Elizabeth as the main speakers with guests speakers from Chronic Pain Ireland, Special Needs Parents Association and Genetic & Rare Disorder Organisation.

Tickets can be found Here.

Below is the first ever EDSAI conference held in Cork in 2012 where Dr. Brian Mulcahy was the main speaker and my better half and I recorded it while there :) This years one looks like the biggest yet, It is going to be awesome and well done to everyone at EDS Awareness Ireland for getting it together :)

Your Turn is ASS!

Your Turn is ASS!

At the phlebotomy clinic on Monday, My turn was ASS! :D

Pain in the butt!

Sorry I haven’t posted in a little while, remember the last time I mentioned I had lost motivation to do stuff? … yeah, that hasn’t changed much!

Well, actually it kinda has, I am delighted to say I have started a little personal project, I wont mention what just yet in case it doesn’t go according to plan, but it gives me something to concentrate on in the evenings when I am idle and I enjoy it :) Besides that, I have just been in pain!

Hydro/physio has become a problem in that, I will be able to do the exercises asked of me in the session, but then I am wasted and in terrible pain for a week after, literally being barely able to move no faster than a sloths pace!

I like sloths and all, but in fairness, I need to be able to function. The last two sessions of hydro/physio has left me in bits to the point where I am fit for nothing else other than sitting very still and groaning occasionally from the corner of the couch, which I have begun to call my nest, I spend so much time there now when I am not doing my exercises!

However, the pain I have felt in the last couple of weeks has set me backwards in the progress I have made. I need assistance with everything when the pain is at its worst, when I can usually do the basics by myself, but not when I get like this.

I had to take a visit to my GP it got so bad and he increased my amount of pain meds to take, now it seems every time I attempt a simple transfer from the chair to the couch or whatever, I am left yelping and its pissing me right off!

When I was discharged from my last hospital admission, on the discharge letter it said that I would be seen by the pain management team as an outpatient and that an appointment would be sent.

No appointment has yet arrived so I decided to chase it up to see if there was one happening. I ring the hospital and get transferred to the pain management clinic secretary, explain the situation to her and she looks up the computer to say that no communication from the ward that I was on to them had happened and as such no appointment had yet been made… 3 months later! I had to ring the ward, explain the situation and get them to hurry up and make an appointment that should have been made back in September! I am getting so sick of the HSE and the way they treat their public patients.

Anyhow, that is only now being chased up, so hopefully I will soon finally get that appointment from the pain team and will get the treatment I need from them, which will hopefully help to keep this pain under more control and in turn I may be in less pain after physio!

Other than that, no other news or scandal, I have stuck stickers to my wheelchair… I know right, I am 4 years old at times but hey, it looked dull and now it… has stickers on it! :p

I wish someplace would do parts for wheelchairs so that you could change your wheels, change your foot and arm rests, Loads of Hardware and colour options, fabric covers for your cushions, colourdy castors etc. Things to spruce up and customise your wheels, as of yet there is no one place/site that offers any of this at a reasonable price or otherwise. I think there could be a market for it, do you?

Hydro V’s Physio!

Well, it shouldnt be versus at all, but that is how it has panned out for me!

Physio has started for the last few weeks now and though it is good to get my joints and muscles doing some work, it is causing a huge amount of pain. My physiotherapist has gotten me a custom made gutter frame so that I can stand for short periods, this helps bone and muscle health, digestion, muscle wasting and a host of other things, however, as I am taking most of my weight on my upper body, shoulders and arms, as the pain in my pelvis and hips is too much, I am now left with an unruly right shoulder!

I saw Professor Frasiers team out in Croom hospital last week, they said to avoid any painful exercises and less impact and weight bearing the better. The doctor there was very good and knowledgeable about the condition and was honest with me, which I appreciate. He said that there is no solid guarantee that I would get out of the chair now that I am in it, but that we can do everything in our power to work towards that end goal and to prevent further damage in the meantime. So Hydrotherapy has started!

I am 2 sessions in at this stage, with another 2 booked in for next week. It is held out in Croom hospital and I have found it very good.
Unlike physio on dry land, hydro is in a warm pool, up to your shoulders and the buoyancy of the pool takes so much weight off that I can stand in the water unassisted for short periods without the excruciating pain of doing the same thing out of the water. The sense of freedom is incredible.

I am lasting only about 25minutes at the moment, and we are going to work on increasing the time and the amount of exercises over the course of the sessions. Although I do feel pain after a short time of doing anything even in the pool, it is nothing like dry physio and my muscles and joints are getting greater work done. It feels good, although leaving me wrecked tired after it, but a good feeling of wrecked!

So between physio, hydro, Occupational therapist and doctors appointments, I am keeping busy, however, when I am not busy, and now that I dont work, I can feel bored. I am trying to keep myself sharp by reading and keeping up to date with things, but I am longing for a personal creative project to keep me from going crazy! Nothing has come to light just yet but hopefully something creative will bloom soon, just so I can do something in my spare time to keep my mind active.

That wheelchair is still looking dull to me, maybe I will design attack it or something! :p

Be Careful Who You Listen To When Advice is Given!

You do, you really sometimes have to just roll with it and turn a blind eye to certain things. Mainly other people and their pie in the sky, inexperienced views!

Since being in the wheelchair and hitting, somewhat ‘hard times’, some people can be great to start giving you advice.
…The wrong advice!

It is not the case for everyone, obviously this is just a handful of people I speak about, and I have just come to the idea that some people are just a little dim and mean no real harm in what they are saying!

I consider myself very, ‘with it’. I can tell the wood from the trees and know when to laugh off certain things, but for other people who may be in a vulnerable mental state having ended up in a wheelchair, out of work, and completely dependent on their better half for the majority of everyday things, this advice could be taken up wrong or could push a more vulnerable person over the edge.

You have to know when and what to take with a pinch of salt.

For example, a few close people to us have tried to give practical living advice to us, given our new situation and the phrase most often thrown out there is; “All you have to do is keep positive”, Keep positive and magical positive things will start to happen, right?!

No! I can get down, I can feel angry, I can feel like wanting to be pissed off and give out about my situation, but I am rational and practical too and I understand that these things happen to good people and you just have to learn to adapt to a new, given situation because it is completely out of your control and that is just that. I am a very positive person, nearly all the time, quite childish in my approach to life actually to the point that I get over excited and find joy over the most trivial things! but sometimes a bit of negativity bursts out of me through emotion and you know what? THAT’S PERFECTLY OK! it is perfectly NORMAL, and that is good to get out of your system too! It is like telling someone who is going through depression to “Stay positive”, that is so condescending, because if they could just stay positive, they would do it and not be depressed, would they? See where I am coming from?!

What pisses me off most though are these people who keep saying this “Keep positive” and “try this” and “Try that” advice, have no idea or experience of what it is to actually go through something like this. They are speaking from an outside looking in perspective which is just so far removed from the real life situation that is actually going on, so, how can they really give any advice?

It is not advice they should be giving.

Love, Kindness, A listening Ear and Understanding is what is needed most of all. Not advice. Not, “Just keep positive and all will be ok”, because that is not how things work.

When something like this happens to a loved one, a friend, an acquaintance. All we want is someone to listen and understand. A hug, A pat on the shoulder, hold our hand and cry with us if that is what it takes, anything, But don’t give advice unless you have been in the same situation, otherwise it is just perceived as insincere and condescending.

Just be there for that someone and help them get through what they are going through. That is more welcome than anything you could offer in the advice department :)