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 🙂

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?!

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! 🙂

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 

Funny things you notice in a chair…

I am a complete beginner at this whole wheelchair thing, and its been grand really, but I have noticed a few funny things, like the way people treat you and how easily you can hurt yourself in one of these things!!

Recently I went for a walk with my better half and the pup, I call it a roll up the road! So, there we were at the shop and this old guy pulls in with his car on the forecourt, gets out of the car, is hardly able to walk himself and I swear he was doddery as they get, but I had to laugh at what happened next.

I had Boo’s lead and keith was pushing me in the chair, this guy falls out of his car and just about managed to balance on his walking stick. He spots us coming and lamps me in the chair and automatically proceeds to treat me like I am mentally retarded!

“Oh! is that your cat!?” (pointing at boo with that look you give 2 year olds when you tell them you just stole their nose!)

“Thats a lovely little cat, oh, OH?” *big stupid smile at me!

I look back, somewhat sympathetically I might add, but just say,

“yeah… she’s my cat” and I smile

“AH! you’re too clever for me, HAH? HA? OH!” he turns and wobbles into the shop.

I look up at Keith and we just giggle.

Thing is, he did it AGAIN when he came back out! FFS!

Anyhow, that was the first funny thing, then yesterday something else happened. I dunno if I should call her a busy body or if she genuinely wanted to help, but considering she was saying it while she was in the process of storming towards her car, makes me think she is just a busybody!

Keith had brought the wheelchair around to the passenger side of the car so I could skooch over onto it, this ‘ould wan’ comes from the direction of across the road, she was heading to her car which was parked behind us. Lamps the chair, Lamps me and the looks at Keith and said,

“Is she alright, ja want help?”

Keith just said we were good and she continuously walks towards her car and eyes me suspiciously as she goes… it was a little uncomfortable!

While in doing shopping a few times I have noticed people insisting that I go ahead of them in the queue, or getting sideways glances, especially from kids. It’s like they cant help but stare, its funny though, they are just innocent, but you would imagine some adults would know better, but not really.

Thankfully it has been ultimately a positive experience in the chair. It has allowed me to get out more and has helped me get around home easier and even with people, they are mostly positive, inclusive and understanding. It is only a tiny few that stand out and there is a minority in every society! 🙂

On a light note, I am finding out new things about using the chair… and what not to do! :p

Wheelchair lesson No.1 = Get gloves and keep your fingers out of the way of wheel spokes, OUCH!!! Fair few bruises and cuts to the fingers at this stage!

Wheelchair lesson No. 2 (Learned all of about 5 mins ago – heart still racing!) = DO NOT lean forward to reach something on the floor… I may be very flexible but the chair isnt and will tip over… Jeebus me heart!!!!!

Wheelchair lesson No. 3 = Remember your toes will be the first thing to hit the on coming wall/door/kerb/car/everything!!! Mind the tootsies!

Wheelchair lesson No. 4 which was given by my friend Michelle Roger from “Living With Bob” Blog = watch that scarf. Just thought I’d give you a little heads up from my own painful experience!! thanks, Michelle! Hope your neck is ok! 😮

Wheelchair lesson No. 5 = remove the seatbelt as it gets caught in the spokes … I do have a feeling this will come back to haunt me sometime in the future where I see myself somehow launched from the chair and thinking mid flight, “Well that was a crap idea, Lette!”

Wheelchair lesson No 6 = testing to see how fast you can turn the chair in tight circles, will make you nauseous. Yes you will want to vomit

And finally, For F*ck sake, Use the brakes!!!

Wheelchair Arrived and rolled me into hospital!

So the last time I left you, I was saying that the Occupational therapist was coming with a chair for me to help my mobility. Wow… a lot has happened since then!

On Friday the 13th (Poignant date, I might add!) the Occupational Therapist came to the house as planned, brought the lightest wheelchair she could get me through the HSE and assessed our home.

Firstly the chair. It’s not the sexiest in the world, an Invacare chair, but it is light enough, fold able and the wheels can be removed. It is also blue… and has taken some getting used to! That, and it badly needs to be pimped because it looks like ass!

it has helped me move around the house and get out which has been wonderful, but there are still restrictions and its not light enough for my shoulders and elbows not to notice the new load on them by self propelling. So a motorized chair has been mentioned and is being pursued to save my remaining ‘good’ joints going forward. Even though I would like to self propel for as long as I can to keep me somewhat fit, I seriously do have to consider the Motorised one for the sake of my remaining few joints!!

While the OT was in the house she assessed it for size and accessibility. She mentioned lots of options going forward, like maybe a stairlift to help getting up and down from upstairs. Some other options, of which I feel may be excessive but may be needed in the future, like, extending the house or altering the house for further accessibility is something we need to look into and think about.

The OT left us with plenty of food for thought and I guess the better half and I thought once the chair was in the house I would somehow magically return to living a normal life.

Of course that didnt happen and it was beyond hard. The weekend of the 14th & 15th of September was very tough for us. A lot to take in. A lot of changes to make and to think about. The chair was a big help in my mobility, but emotionally, we had some things to get used to, weather we liked it or not.

Thankfully, we are not ones to wallow, though it was difficult not to at the start. We picked ourselves up and started to look at what our options were going forward and how things could be so much worse.

While in the process of filling out forms and getting this new lifestyle organised, I had to sort out doctors appointments and think about getting treatment underway. I was determined to recover my walk at least but as I am being covered pubically, I knew it would be slow progress.

That Monday I decided to ring the rheumatologist secretary in the hospital to see if that ‘urgent’ letter that the doctor wrote, had any impact on getting me an appointment. The secretary said that ‘He’ had seen it and sent it onto Croom Hospital, So I rang there.

Once I got through and explained my situation, the secretary looked into it for me and said that I had been moved back onto the ‘routine’ list and as a result my appointment would take a long time to come through.

Needless to say, I flipped!

I effectively broke down on the phone and started to cry at this poor unfortunate stranger at the other end, who had no control over this but I wasnt going to let the opportunity pass to get my voice heard.

“What…? *sob, How…? How can I be routine? I am in a wheelchair and my husband is minding me 24/7, and the urgent letter, *Sob, how can I be routine?!!!”

…I apologized profusely for my outburst and explained that I understood she had no control over the situation but how could I be routine?

I sobbed some more and she sounded more than flustered at the other end and promised to talk to the specialist, to look into it for me further and that she would call me back.

The next day, Tuesday, she did call me back and said that I going to be seen by the Musculoskeletal team and that an appointment would be sent promptly.

The following Wednesday, we decided to go and update the doctor and see about some sort of pain management as my hips were progressively getting more painful.

While there, he expressed anger at how I had been referred to the routine list once again, even though he wrote an urgent letter. He also advised me to go into hospital to see why the hips were getting so painful and to see if anything could be done while we were waiting for treatment.

Long story short. The next day, I had an appointment at the medical assessment unit and ended up being admitted after a lovely doctor, who showed genuine interest in my condition, felt that if I were admitted, my treatment would be faster than outpatient treatment. So I agreed to give it a go and somehow was given a private room, nice.

Even longer story short, I ended up staying 11 days in there, progressively getting worse!

The first morning after admission, I was met by my usual pots team of doctors, all promising to consolidate all the diagnostics and all the separate doctors and finally have a treatment plan going forward. Blood tests and xrays were done and everything looked as though it would progress fast and efficiently.

That didnt last very long.

Over the course of my 11 day stay, I was moved from the private room, I think I had it all of 2 days, to a public ward, doctors and specialist visits became fewer and even more brief and my pain management increased as my pain did from lying mostly motionless on that hospital bed.

During the time I was in hospital, I was seen by my usual Pots team, A physio therapist, A specialist from the pain management team as my pain kept increasing. A rheumatologist who saw me in a matter of about 3 minutes in total, to me, said he did not disagree with my diagnosis of EDS by the specialist in Cork but to the other teams he said he thought I didnt have EDS Type 3 but thought instead that I had: ‘Benign Hypermobility Syndrome’ and not EDS. Which in turn caused a flurry of confusion on all counts!

If you dont know the significance of this statement, let me enlighten you with a lay explanation…

That is like saying, I dont think you have cancer, I think you have… cancer! EDS and BHMS are the exact same thing and the difference in understanding is in the medical terminology that has advanced over the last few years where Benign hypermobility Syndrome is considered EDS or a type of EDS.

Either way, I voiced my concerns and I got seen further by the Physio team and on the last day, someone from the Neurology team.

On discharge and on the discharge letter, they agreed that I had EDS and POTS and would require detailed physio, Occupational therapy and pain management going forward.

So where I stand, They advised me to go back to the specialist in Cork to get a detailed outline of the treatment he recommends for me and to refer me to get a genetics test to rule out overlaps of other, more troublesome types of EDS. I was also advised to stop working as it is not feasible for the moment in my current condition. This hurt a lot to take on board as I had just started the job in June and it was Ideal for my situation, at the time, I hadnt accounted for a change of this size!

Next Monday I return to the rheumatologist specialist in Cork and the following Monday I start my Physio. That’s where I am at this moment in time, ill keep you posted on progress going forward.

I also came home from hospital, to an appointment to croom hospital to be seen by the Musculoskeletal team in November, so that came through after all only 3 years to wait in all!

In the meantime, my sorry ass has to get used to this chair and ill do a blog post next on the few funny things I have noticed while starting to use the chair, It has been most interesting to see how others start to treat you! 😉