Friends, what would we do without
them? I have been very lucky my whole
life and have the best friends ever. Starting
as a little girl I had my younger sister Catherine who I could boss around and
bend at will to do, and be, whatever I wanted – usually nothing more exciting
than another doll at my tea party or a doll to dress, except this one was alive
and I must have wondered why the other dolls just sat still and said
nothing! I would not try and dress
Catherine now, not that she would let me!
Growing up I had great friends, some of whom are still friends today – like Ken, and Maria Mc – and some others that I have gathered along the way like Ben, etc. All of them have been really, really good to us both now. It’s been a blessing to have so many - too many to mention all of you by name but I know you all know who you are and how much you mean to me, and how much all of you have done to help. It means so much to me and Neil, so a HUGE BIG HUG to you all!
Plus of course my friends, by proxy initially, who I’ve come to love too in the world of Hot Rod racing. I never would have thought that my photo would be on the back of a Legend race car – that may be a good deterrent to stop anyone rear-ending Tim!
As you will have seen from my Facebook group, the extension is moving on, albeit a bit slowly until this week. But man! I could never have imagined the amount of dust through the house; it really is never ending… Hopefully we will be all installed in the new room soon.
I’m all sorted for the Ebola Virus over here. I will have my ‘Nippy’ oxygen machine at the ready provided my brother Ronan – who was eyeing it jealously the other weekend – has not stolen it. So much of my life plugs-in now, I’d say in the new extension we have the bedroom with the most electric sockets ever! In just the one room we’ve had 24 fitted – mad – oh well. The electricity bill is giving us bigger numbers every month – at the rate we’re going it will soon look like the national debt of a small country.
The new football season is upon us and my team – Crystal Palace – started with no manager. Everyone has us written off but so far we’ve shown we’re not a walkover. Arsenal may have beaten us but it was not easy for them and even though we lost I was very proud of them. My own Fantasy Football team hasn’t had the best of starts either, but wait and see, it’s a long season!
I’d like to say a big thank you to Ray D’Arcy and his team at his TodayFM morning radio show. Ray didn’t just let my story lie after the interview we did on the programme back in January, he and the team are in regular contact with us and we regularly update him with our progress – or lack of – in my “Fight for Life” campaign. Regular readers of my blog know that when the time comes that my lungs succumb to MND I am determined to stay alive by means of invasive ventilation – a small operation that will allow a very similar oxygen machine to that which I currently use at night, to mechanically help me breathe all the time as used by fellow Motor Neuron sufferers Professor Stephen Hawking and the film director and author Simon Fitzmaurice.
Anyway, Ray has been trying since meeting us, to try and get someone in a position of some authority at the HSE to speak to us – something that the HSE themselves have promised numerous times in letters forwarded to us by politicians, and by TD Alex White in parliament, but have all proved to be just empty words. We have, thanks to Ray, been visited by the Patient Ombudsman who listened carefully to my story and future wishes as told to him face to face by Neil and me, and we’re now waiting further contact from him once he has fully investigated the situation as it relates to me.
Thanks also to Ray D’Arcy for taking a bucket of ice water for me… That’s about as close to the Rose of Tralee as I will ever get!
I have really missed the beach this summer, but wheels on sand are a no-go. But now that the extension is in its final completion stages, I’ve taken delivery of my new Storm 4 electric chair. There’ll be no stopping me very shortly…
Finally then, just a quick update on where I am now: the disease has been relentless as usual and I’ve no use of virtually anything now that I took for granted before, except my right hand – with which I am hand-writing all of this in bed so that Neil’s got something to type up for a couple of hours! My left arm and hand went over the last six weeks, my right arm followed rapidly but the hand and fingers are still doing what I ask them to – albeit quite weakly. My neck is now also very weak and my head seems to weigh an awful lot as I find it increasingly difficult to support or move it. Speech, and swallowing, is now pretty much impossible but I’m getting to grips with the Eye-Gaze technology and as soon as we can get installed in the new extension things like that will become much easier to use - given the new space and room for proper equipment facilities.
But believe me when I tell you that, despite the above, it’s definitely not doom and gloom here in Co. Wexford. Neil and I, and my family and friends, always make sure there’s time for a laugh and a smile! Let’s hope that my next blog will be written from the comfort and ease of the new room. I’ll try to not leave such a long gap before the next update but in the meantime don’t forget my Facebook group where you’ll find more updates between blogs.
‘Til next time
Ciao!
Eimear X
Growing up I had great friends, some of whom are still friends today – like Ken, and Maria Mc – and some others that I have gathered along the way like Ben, etc. All of them have been really, really good to us both now. It’s been a blessing to have so many - too many to mention all of you by name but I know you all know who you are and how much you mean to me, and how much all of you have done to help. It means so much to me and Neil, so a HUGE BIG HUG to you all!
Plus of course my friends, by proxy initially, who I’ve come to love too in the world of Hot Rod racing. I never would have thought that my photo would be on the back of a Legend race car – that may be a good deterrent to stop anyone rear-ending Tim!
As you will have seen from my Facebook group, the extension is moving on, albeit a bit slowly until this week. But man! I could never have imagined the amount of dust through the house; it really is never ending… Hopefully we will be all installed in the new room soon.
I’m all sorted for the Ebola Virus over here. I will have my ‘Nippy’ oxygen machine at the ready provided my brother Ronan – who was eyeing it jealously the other weekend – has not stolen it. So much of my life plugs-in now, I’d say in the new extension we have the bedroom with the most electric sockets ever! In just the one room we’ve had 24 fitted – mad – oh well. The electricity bill is giving us bigger numbers every month – at the rate we’re going it will soon look like the national debt of a small country.
The new football season is upon us and my team – Crystal Palace – started with no manager. Everyone has us written off but so far we’ve shown we’re not a walkover. Arsenal may have beaten us but it was not easy for them and even though we lost I was very proud of them. My own Fantasy Football team hasn’t had the best of starts either, but wait and see, it’s a long season!
I’d like to say a big thank you to Ray D’Arcy and his team at his TodayFM morning radio show. Ray didn’t just let my story lie after the interview we did on the programme back in January, he and the team are in regular contact with us and we regularly update him with our progress – or lack of – in my “Fight for Life” campaign. Regular readers of my blog know that when the time comes that my lungs succumb to MND I am determined to stay alive by means of invasive ventilation – a small operation that will allow a very similar oxygen machine to that which I currently use at night, to mechanically help me breathe all the time as used by fellow Motor Neuron sufferers Professor Stephen Hawking and the film director and author Simon Fitzmaurice.
Anyway, Ray has been trying since meeting us, to try and get someone in a position of some authority at the HSE to speak to us – something that the HSE themselves have promised numerous times in letters forwarded to us by politicians, and by TD Alex White in parliament, but have all proved to be just empty words. We have, thanks to Ray, been visited by the Patient Ombudsman who listened carefully to my story and future wishes as told to him face to face by Neil and me, and we’re now waiting further contact from him once he has fully investigated the situation as it relates to me.
Thanks also to Ray D’Arcy for taking a bucket of ice water for me… That’s about as close to the Rose of Tralee as I will ever get!
I have really missed the beach this summer, but wheels on sand are a no-go. But now that the extension is in its final completion stages, I’ve taken delivery of my new Storm 4 electric chair. There’ll be no stopping me very shortly…
Finally then, just a quick update on where I am now: the disease has been relentless as usual and I’ve no use of virtually anything now that I took for granted before, except my right hand – with which I am hand-writing all of this in bed so that Neil’s got something to type up for a couple of hours! My left arm and hand went over the last six weeks, my right arm followed rapidly but the hand and fingers are still doing what I ask them to – albeit quite weakly. My neck is now also very weak and my head seems to weigh an awful lot as I find it increasingly difficult to support or move it. Speech, and swallowing, is now pretty much impossible but I’m getting to grips with the Eye-Gaze technology and as soon as we can get installed in the new extension things like that will become much easier to use - given the new space and room for proper equipment facilities.
But believe me when I tell you that, despite the above, it’s definitely not doom and gloom here in Co. Wexford. Neil and I, and my family and friends, always make sure there’s time for a laugh and a smile! Let’s hope that my next blog will be written from the comfort and ease of the new room. I’ll try to not leave such a long gap before the next update but in the meantime don’t forget my Facebook group where you’ll find more updates between blogs.
‘Til next time
Ciao!
Eimear X
