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! 😉

 

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! 🙂

Sleep Paralysis, Sleep Fainting and How Your Brain Can Frighten You!

This will be a bit of a long post, but bear with me… you may have experienced this too! 🙂

…it started when I was 15.

It was late in the night, about 4 or 5am. I found myself lying in my bed on the flat of my back. The room was dark but crepuscular light seeped in through the unlined curtains. The light of the hall outside leaking in under the door… Semi asleep, semi awake… a pressure on my chest, a looming, shapeless, black, figure crawling up my body.

I could feel its pressure on my body, I tried to move and I couldn’t. Emotionally heightened terror filled my solar plexus. My mind was racing, I was completely paralyzed by fear. My eyes were open, I felt wide awake, I had full control of my thoughts. I could see around my room, but somehow… I was still in my dream. The dream was being acted out in my room, shadowy dark figures were floating and moving eerily around my room. my sister snored gently in her bed, while I tried desperately inside myself to scream and call anyone for help…

A strange sound began to fill my ears… Behind low whispering voices, children laughing and strange music I had never heard before.

The looming, heavy dark figure was now up on my chest… I could feel its ghostly hands tighten around my neck. It didn’t make a sound. Breathing became a struggle as I could feel this creatures weight lying on top of me, fear choked me, I tried so hard to scream…

what was that sound??

Like a moan, it was high pitched, it varied in frequency and sounded for all the world how you would imagine a banshee would cry out and whail!!

I soon realized this sound was coming from me… I was trying to scream in my paralyzed state and it emitted from my throat a weak, eerie sound that sounded nothing like a scream, but in my dream I was screaming as forcefully as I could.

It’s hands closed over my mouth, it’s face right in front of mine, but it didn’t have a face… it was just a dark, heavy shadow with holes for eyes… it opened its hollow mouth and engulfed my face… My heart was pounding, I was sweating, I couldn’t breath, the distorted world around me was fading and just as I felt life was leaving me…

“LETTE!”

“LETTE!! Wake up your FREAKING ME THE HELL OUT!”

My eyes snapped open, and I was now properly awake, in my bed, my sister sitting up looking petrified at me with her knees up tight and her quilt pulled up to her chin!.

My weak, strange moan that was a scream in my dream had woken her… I scared the crap out of her and I was terrified beyond belief!

I decided I needed to know what this experience was, I am rational and I do not believe in the supernatural – only as an interest, I am fascinated by it, but thankfully I found a rational explanation.

I had just experienced Sleep paralysis.

Sleep paralysis is a phenomenon in which people, either when falling asleep or wakening, temporarily experience an inability to move. More formally, it is a transition state between wakefulness and rest characterized by complete muscle atonia (muscle weakness). It can occur at sleep onset or upon awakening, and it is often associated with terrifying visions (e.g. an intruder in the room), to which one is unable to react due to paralysis. It is believed a result of disrupted REM sleep, which is normally characterized by complete muscle atonia that prevents individuals from acting out their dreams. Sleep paralysis has been linked to disorders such as narcolepsy, migraines, anxiety disorders, andobstructive sleep apnea; however, it can also occur in isolation.^[1][2] When linked to another disorder, sleep paralysis commonly occurs in association with the neurological sleep disorder narcolepsy.^{[2] – Wikipedia}

I now get this 3 to 4 times a month. Sometimes I wake up with the strange moaning thing, which has frightened my husband so many times! Sometimes I just feel something touching me and the feeling of fear just makes me jump awake and there is nobody there. Sometimes I hear voices or music or strange sounds, its freaky!

There is nothing unexplainable or supernatural about this experience, it is quite literally your brain working overtime, and you happened to wake at the wrong time!

Here is a very basic understanding of how it works from my own experiences and perspective;

When you sleep, your brain releases some chemicals and hormones to literally paralyse your body so that you dont get up and act out your dreams (incase you decide to throw yourself out a window or harm someone while you are dreaming) This is a natural proces to help you recover and repair your brain and body from the day before, by keeping you still and sedated.

If you happen to wake during this process, you experience a transient state where you have muscle atonia (weakness) or paralysis, you cant move, you can open your eyes but the chemicals in your brain are still active… so you can see or hear or even feel your dreams around you in very lucid detail while your eyes are open and you cant move. A feeling of fear is associated with this and a looming shadowy figure is sometimes experienced… this thing is called; ‘The Hag’ appropriately named because of the fear and the pressure on your chest when you see it!

This is a very basic run-through of how this experience feels, Please read in detail HERE how it happens, it really is fascinating and I would love to hear your feedback on your own experiences.

Recently though, I have been experiencing something different… and very frightening from a health and medical point of view. I havent yet spoken to my specialist about this but I feel I may need to going forward.

I think I am fainting in my sleep!

WHAT? but you are already unconscious! how can you fall unconscious when you already are!?

I know, right? but please let me explain! It doesn’t work like the Inception thing! :p I dont fall deeper into my dreams…

I have Postural Orthostatic Tachycardia Syndrome because of my EDS, so I faint on a regular basis while awake. I have become acutely aware of the symptoms and feelings inside me when this happens and just before I faint. I have to be, so that I can try and control it as I sometimes stop breathing when I faint and this is not good for the ould head and brain and has caused nerve damage previously from the lack of oxygen! I have gotten better at noticing a faint coming on but sometimes I have no control and just hit the floor (insert ‘Let The Bodies Hit The Floor’ meme here!)

When I sleep, I dream very lucidly. In full colour and sometimes I can control how the dream plays out, not every time but nearly always in my dreams I chose flying as my method of getting around! (dont laugh, I really do and it feels exhilarating!) I have proper and extreme intense emotional feelings, I can touch and physically feel things, tastes, smells, pain, pleasure and extreme tiredness when I have overworked myself in my dreams!

Isn’t that crazy? If I play or do too much in my dreams, I can physically get wrecked tired and feel how it affects my body exactly like when I am awake, even though I am asleep and lying still. It is almost like in my dreams I have slipped into another me in the dream world!

Further to this, in my dreams I have started to experience fainting, just like I do when I am awake and active!

I feel the pressure in my head build, my temples and behind my eyes start to throb, stars spinning around my head, a dark tunnel seeps in from my peripheral vision making everything slowly go dark. My muscles feel heavy, I feel disgusting hot rising nausea crawl up from the depths of my gut and up into my throat, I begin to sweat but always feel cold, feel like I am going to vomit… A loud wooshing noise grows intensely loud in my ears, like I am falling through air.

While I am dreaming this, sometimes, I experience myoclonic jerking, my husband notices this. and I also can bite my tongue and the inside of my mouth to the point where I wake up with my mouth filled with blood.

The darkness closes in, deeper, deeper, I feel myself fall under into a faint, it literally feels like someone is just turning your ‘lights’ off and you have no control over it, then there is just darkness for a split second and I snap open my eyes and feel utterly dreadful!

When I wake I feel just like I feel after I faint in my waking state. I had been sweating, I am viciously nauseous, my body aches, I am physically weak and feel sore, tired, and confused… I have an urgency to both vomit and pee… I will get up, go to the bathroom, then hit the floor flat with a hard thump.

I have experienced this many times and wondered if I am in fact fainting in my sleep, or at least experiencing the precursor to a faint, then in my weakened state when I get up, I faint properly… it is all very odd but I did do a bit of research and found I am not alone, at all! Thankfully… I was beginning to worry about my own sanity! :p

This is called nocturnal syncope and I found a medical journal explaining a trial for testing this condition. It is an amazing read, HERE!

PATIENT HISTORIES

Patient 1 had her first nocturnal syncopal episode at the age of 40 years. After sleeping for some hours, she awoke and felt nauseous with abdominal discomfort and the urge to defecate. She lost consciousness while lying supine. She sweated profusely but did not bite her tongue. Her husband observed transient myoclonic jerking. After this, similar episodes occurred regularly (at least one a month) and only at night. The syncopal episodes never exceeded one minute and were atraumatic. She was incontinent of urine and faeces once. A tilt test provoked a vasovagal reaction followed by seven seconds of asystole and reproduced her nocturnal symptoms. Because of ongoing symptoms she underwent neurological investigations and a typical nocturnal episode was recorded during continuous electroencephalographic (EEG) and cardiographic monitoring (fig 1​1).). The EEG was judged normal by two independent neurologists. The ECG, however, showed a pronounced bradycardia (36 beats/min) during the episode, with an atrioventricular node escape rhythm. – http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1768202/

So this one particular lady experienced a lot of the same things as I did during these episodes. I also found other examples HERE and HERE!

A 2004 research publication suggests patients may awaken from sleep with symptoms of forthcoming neurocardiogenic syncope (Krediet, Jardine, Cortelli, Visman & Wieling, 2004). This suggestion may seem to contradict current teachings on this disorder. However, research shows that transient autonomic mechanisms that predispose to vasovagal syncope may occur during sleep (Shneerson, 2000, p. 1-15). – http://www.dinet.org/NCS/ncs.htm

So it’s nice to know im not going nuts, but these are crazy experiences which make some people think it may be a supernatural occurrence  when it is not. Your brain is just messing with you!

The sleep fainting is new though, and though I have found some medical papers on it, it doesnt seem to be extensively written about, so I would love to hear your experiences of Sleep fainting or Sleep paralysis. Please contribute and thank you for reading 🙂

– Lette

Informative Disability Links in Ireland

Sorry about the delay in updating recently, I have just been lazy to be honest!
I found a comfy place on the sofa and usually hibernate down in the sitting room away from the computer now, choosing to use the phone or the iPad and I hate blogging on anything other than a proper keyboard, thing is I have lost all motivation as a result of this  so I decided to kick my own but into action today, and here we are! 

This is me, bursting with motivation…

yeah, right! :p

I wanted to update you on what is going on during this, what I can only call; Process of transition! as there may be people out there that may find themselves in the same situation as me, having to now use a wheelchair or living with any disability and not knowing how to adjust or how to go about getting the information that they have rights to and deserve. So, if I am living the experience, let me share it and help those who may not know what to do or where to go for these things.

This thing came out of nowhere for me, took a little while to get my head around and once my husband and I got our heads around the new situation we find ourselves in and the fact that I have a research based background, I went about doing exactly that, researching the poop out of everything got to do with our new situation and how we could adjust.

Here I highlight some links I found full of information regarding a new disability, just click on the blue words to be taken directly to the sites I am talking about. 

Firstly, DONT PANIC! You will get through this, there are supports, family, friends, doctors, there are ways and means of finding out information, just dont be afraid to google information (all site links I have given here are legally legit! be careful what you find and read online, be sure they are from legitimate sources.) /Or if you are not interweb savvy then RING or JUST ASK! Do not be afraid to ring your doctor for help, my doctor has been great to share any infrmation he knows or finds.  Call places like Enable Ireland, other disability centers or even Citizens advice or social welfare regarding financial help and legal entitlements, if needed. These places are here to provide you with information, use them.

I have a friend who has been in a chair all her life and she was a wealth of information to me, she also wrote a book about her experience too, so be sure to check it out, It is called Dont Tell Me I Cant, by Leigh Gath  🙂 Cheers muchly, Leigh 🙂 

I started out my personal research by reading about actually having a new disability, methods of coping or managing in this new situation. I openly spoke about how I felt on forums and took advise from other peoples experiences living within Ireland,  knowing you are not alone can help hugely and I found EDS Awareness Ireland a huge help, Thanks folks, please be sure to check out their page HERE 🙂 

The first main obstacle I came up against was getting myself a wheelchair or a device to help transport myself. This is not automatically given to you via your Doctor or hospital, so the first thing I did was ring the Irish Patients’ Association who are fantastic on giving advice to anyone who is a patient, either publicly or privately in Ireland. They are also fantastic to discuss problems with treatment within the health system, so if you feel something is not going correctly with treatment or if you have or are being treated inappropriately  talk to them.

From here I was led to Assist Ireland.ie and The Irish Wheelchair Association which provide lots of information about the types of mobility devices, aids and entitlements you can get and how to go about getting them both publicly through the HSE and privately if desired. Also information on Disabled parking permit and other entitlements and services.

Ring your local health nurse, which will usually lead onto a referral to an Occupational Therapist and or Physio and perhaps to a local Social Welfare officer to help financially or to apply for any benefits. This is a great start to get the ball rolling locally within your home, community and your immediate change of circumstance. 

Remember, there are supports and help, just dont be afraid to look and ask for these things 🙂 I hope some of these links can help you too 🙂 

The news with myself recently is just trying to adjust to this new lifestyle. We are having regular visits from the Occupational Therapist and sometime in the next couple of weeks a motorised wheelchair will arrive, allowing me to get out and about more, locally, without self propelling or the Hubby having to push me, it would be nice not to have to talk to someone behind me all the time while out for a roll!! 🙂 

How cool would this be? Click on the image to read the story behind the photo

As of yet, I dont know what kind it is, or if it is going to be any way portable, so for now all we know is that I will be working between the 2 chairs as they are deemed appropriate. 

I have begun my Physio in my local health center, which is great, but slow! I have a specialist letter to state that regular physio is not advised for me as it may aggravate the joints, muscles and pain even more and so pool therapy is recommended about 3 or 4 times a week for me. He is looking into where he can get me in for pool therapy as they do not facilitate it directly at the local health center so it may take weeks or months to start properly.

He has ordered a walker with arm rests for me to practice just standing straight up out of the chair as he thinks my legs are not ready for the pool yet and that getting me to stand even for just a few minutes a day will help maintain some bone strength, muscle tone and even help digestion. So until my own walker, measured to my size, arrives, he has lent me one to practice in the meantime. I am doing that when I am able, cant say I am seeing any progress yet but it is early days yet!

Other than that, I have my Rhumy appointment at the end of this month, expecting the zoomy chair in the next week, hopefully and noticing that my arms, chest and latisimus muscles have become very solid!!! Even in this short time. I definitely feel stronger in my upper body and I have even stopped napping during the day like I used to, all the time! It feels good, I do feel it will be super easy to put on weight in the chair though, so I have to watch that. 

…with a sweety and ice-cream obsession, thats gonna take time! :p