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 🙂

My Legs May Not Work But My Brain Does!

So, I was out at a family birthday thing last night, in a well known little pup in Limerick City. I hate going to these things but it has to be done, so we said we would show our faces for a while anyway and see how it goes.

I have started to think differently now that I am in the chair, I worry about accessibility in places and generally worry a little about peoples reactions to the chair and to me being in the chair because some people just do not seem to know how to behave around this piece of equipment!

Thats all it is folks, a piece of metal, fabric and plastic, nothing more witchcraft about it!

Anyway… It wasn’t long before my worries started to become justified!

In the pub all of a couple of seconds ond the extended family who havent seen me in about a year get a little start at seeing me, crowd around and all the questions begin about what happened;

“Oh, Jaysus, love, what happened? Did you break your legs, or somethin?!” – that is quite a popular one thrown at me! :p

This, I dont mind so much, but it is when people lamp the chair, look at me and say something utterly stupid to me in ‘That’ Patronising baby voice, obviously being in a chair because my legs dont work, clearly equates to the obvious fact that I must be mentally retarded also!

This has happened a few times now and last night was no exception.

Before it got busy, the better half checked to see were there accessible toilets, toilets stating ‘Wheelchair accessible’ does not always mean that they actually are accessible, I have been in a fair few now to tell you that some of them should not be called accessible even to able bodied people!

There were accessible toilets so that was one less thing to worry about, however, it didn’t stay quiet for long!

As the people started flooding in, I got stuck in a corner, having to roll back and forth constantly throughout the couple of hours I was there, as people were coming and going from their seats, I had to roll back out of their way to let them in and out.

It got so busy that there wasn’t a hope of me escaping the corner I found myself stuck in.

Then people started leaning on my chair without permission. Patting me on the shoulder as they walked by. Saying things like; “Are you alright there, looooove?” (In that patronising baby voice) then it happened… the; Oh, she is in a chair, Ahhhh ‘telpis’!

The bar tender comes out from behind the bar carrying a pint out to someone, lamps my chair as clear as day, then looks up at my face, breaks into a smile you give when you are cooing to a new baby and said, yes in that voice;

‘Well darlin’, Are you going to sing us a song tonight?, Ha? aaahhhh you will”

Funniest part is when I answered him he seemed taken aback at the fact that I seemed coherent and he quickly went off to deliver his beer.

Some people in wheelchairs say that the chair is an extension of their legs, I cant say that I feel that as of yet, it is too early, I guess, but I did get put out at people just leaning on my chair while they had their chats behind me, or as they were moving in and out of their own seats they would use my chair to balance themselves. At one stage a lady handed a fresh, roasting mug of coffee, over me to her husband, The fact that I still have full feeling in my legs and the thoughts of this spilling on me actually put my heart crossways! I have to say I didn’t like that.

I do not want to become one of these disabled people who have this horrible sense of entitlement, just because they have a disability. I know too many people like that, who would even get angry if someone held a door open for them, that is just an elitist attitude that is mostly not welcome and I refuse to fall into that scenario now that I am in a chair.

…but, respect of your fellow human is not too much to ask, right? Wether in a chair or not!

Please do not lean on my chair while you go about your own business  you wouldn’t lean on a strangers shoulder to have your chat, would you? I feel it’s the same thing here.

Please do not assume it is okay to reach across anybody with a roasting hot cup of coffee, wether they are in a chair or not, that is just careless!

and finally… Just because you see someone in a wheelchair, do not automatically assume that they are somehow mentally retarded, It is patronising and belittling, when the person in the chair may already be acutely self conscious about their situation as it is, this behavior doesn’t help.

Perhaps I am just a little sensitive about my current situation and just geting used to things, but I honestly feel these few things go without saying, why would you treat anyone different just because they may wear glasses, hearing aids, crutches, splints or happen to be in a wheelchair.

Treat others as you would like them to treat you. This is just a respectful way of treating anybody, yet it seems it needs to be spelled out to some people!

EDS Awareness Ireland Survey

Hey peeps! The folks over on EDS Awareness Ireland have started some great research and have set up Irelands first EDS related survey, Ill copy what was said over on their page, here:

“Hi Everyone! As you all know, we’re working really hard behind the scenes to improve the treatments and services for everyone with E.D.S. in Ireland. I would be obliged if you could take part in my ANONYMOUS survey about living with the condition in Ireland. It will take between 5 and 10 minutes depending on how much information you want to give. I am going to use the statistics we gather to help push the government and medical organisations etc into action for all of us. If you are a parent of a child with E.D.S. you can complete the survey on their behalf, and for example if you have 2 children plus yourself affected, if you complete it three times then we will have official statistics for the three of you to help us fight our case. Thank you to everyone that acted as my guinea pig getting it up and running.

This is the FIRST time statistics about E.D.S. has ever been officially gathered in Ireland. Your contribution will help us to fight tooth and nail for you. I hope you all can spare 10 minutes of your day for this. THANK YOU xxx
https://survey.zohopublic.com/zs/syBfHo “

Unnecessary medical cards being sent in the post – Ireland

Oh now, this is just ridiculous! Unnecessary medical cards being sent in the post, not only did we get sent 2 medical cards yesterday that were valid until the exact same expiry date as the cards WE ALREADY HAVE (2 months validity!!!) My mum called last night and said they got 3 at home with the same thing, they already had cards with the same expiry date, what a waste of money! Good going once again HSE, well done!

Has anyone else noticed this?!

Views of this blog by country!

I love checking my stats. I don’t get a lot of hits, to be honest, but I do enjoy seeing what countries my readers are from.

For the last year, here are the following views by country 🙂 Thank you so much to all the readers, you are more than welcome and appreciated 🙂 Thank you! Total blog views, currently: 7,981

You can click on the images to get a bigger view, to help the ould eyes! 😉

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Thank you once again to everyone who has taken the time to pass by and read this humble little blog, here is to another successful year going forward! 🙂

– Lette

The HSE are Gone to the Dogs!

It’s such an Irish-ism but honestly, If my pup gets sick or hurt, I can choose to take her to any number of vets for prompt and reliable care. Think your dog can take their human to any hospital to get reliable treatment and care if they happen to get sick or hurt? Hell no!

I am sick of the HSE (Health Service Executive, for my non Irish readers) I am sick of their wasting of money, wasting of patients time, Their complete lack of communication within its departments and a complete lack of overall proper treatment for the, mostly public patients of Ireland. Private patients have their fair share of stories to tell too, I am sure, but as I am going through the public system, I will speak only from my own experiences.

This morning a letter arrived in the post. I opened it, only to find 2 shiny new medical cards, one for himself, one for me, valid for how long? …2 months!
WE ALREADY HAVE CARDS which are valid until Jan 2014! why are they printing and sending these out to us? I know this may be trivial but that is an utter waste of money, printing the cards, and sending them to people who have no need of new ones because we already have them! Especially when there are people out there who also deserve them and cant get them or those who have them, need them and are having them removed for no apparent reason!

You can read such stories, all published within the last few months, here;

Mum ‘incensed’ as medical card taken off Down Syndrome child

Hospital vigil held in protest at removal of medical cards

Chronically ill girl has medical card taken from her

HSE denies medical card cull

it is maddening!

The day before yesterday, The hubby recieved a letter from the HSE stating that he had been on a Vascular waiting list for so long at this stage that they wanted to know if he still wanted an appointment. He was never and has no need of ever being put on a vascular waiting list, what is this?!

About 2 months ago I recieved the same, stating that I had been on a Urology waiting list, again, I hadnt been, so why are these being sent out when people are waiting for genuine appointments and they are sending letters for phantom appointments that were never made?!

These are only tiny things. From my own experience, and from what I hear from others in the same situation, The HSE has broken down as a whole!

Yes there are success stories within the system, but it’s the minority that rarely get heard and treatment in this country for certain conditions, including most aspects of Dysautonomia, are simply non existant.

For example when I was in hospital, more than once, have I come up against a ‘so called’ specialist or Rheumatologist that said, “You dont have EDS, you have Hypermobility syndrome”

…?

I have said it before and I will say it again, that is like saying, “I am sorry, you dont have cancer, but, I am afraid you have… Cancer!”

IT’S THE SAME THING, MORON, with just a few risky extras, which I just happen to have! do some up to date research and stop living in the past!

In my opinion, and I doubt that I am far wrong, the only reason they argue or say this is simply, that if they admit to a condition, within the public service, which was diagnosed originally by a private specialist, then they, by law, have to provide public service care for that condition under the health system. There is no proper treatment available here for EDS, so you know, go figure…!

There are no specialists in Ireland who are qualified to deal with EDS or Dysautonomia. As patients we are palmed off on the cardiologist/geriatricians for Postural Orthostatic Tachycardia Syndrome because they cover some aspects of the condition, but certainly not all.

You are given over to the Rheumatologist/musculoskeletal specialists for EDS, because again, they know so much but not all about the condition.

By right, we should have a team of different specialists to cover our broad condition which would include: Rheumatologists, Neurologists, Cardiologists, Vascular specialists, Physiotherapists, occupational therapists, Pain management, Gastroenterologists and nutritionists, just to name but a small few, to cover every aspect of the condition intensively so that it can be properly managed.

That just does not happen here in Ireland.

If you require treatment like this, you have to pursue every medical angle separately, either privately yourself or through the HSE publicly, which takes years and there is very little, if any, communication within these departments, so that, files, information, xrays, appointments, you name it, either go missing or are never passed on to where they need to go.

It is frustrating, upsetting and makes our healing process go backwards, because, we get diagnosed, then do not get the immediate follow up treatment we need to progress in the right direction, instead you get ‘looked after’ over a very long period of time making your condition get worse while you wait!

The nearest Autonomic specialist is in London, his name is Dr. Rodney Grahame and he is known world wide for his contributions to research and development in this area. He is currently training a specialist to come over to Ireland to provide proper treatment over here, but it could take up to two years or more for that to be ready.

Getting to london without your own money for an appointment is impossible though unless some sort of fundraising is done. Either that or you can apply to the HSE Travel Abroad Scheme, which the majority of people get refused even though you may be perfectly entitled to it.

One irish patient with EDS, Jamie O’Brien had approval for his Travel Abroad application, went about making all of the necessary arrangements and just 3 days prior to leaving to go to England, the HSE retracted the approval. Meaning he couldn’t get the treatment he needed. You can read Jamies story here.

This has happened so many times, here is Aimee Foley’s Story and Sarah’s story Here. There are many, many more.

This has to stop. The time wasting, the money wasting, the lack of care, compassion or proper treatment. The lack of education of certain conditions within the HSE, the lack of communication or any organisation.

The health system is a disgrace and it’s time to fight.

Thankfully, there are a few very strong people within this little community of ours who are willing to make a difference and to fight for change. The EDS Awareness Ireland group have a few admin and members who have already spoken to those in The Irish Patience Association, Meeting up and pushing the issue with their own local TD’s, Writing letters direct to the current health minister and direct to media. There have been quite a few interviews on Irish TV and stories in the papers. Medical cards and a Rare Disease plan are now being considered for those with EDS, where it wasnt before. Changes are slowly but surely beginning to happen but still a little too slow.

We will keep pushing and fighting, it is all we can do for now! 🙂