The next posts will be in the form of lists of what happened..
I really need to get back to writing from my heart , rather than from memories and lists from my diary..
I See no other way to do this.. each day is so Busy !!!
HUG ME , I'VE GOT MND
I guess this is a diary of my thoughts, findings and feelings since being dianosed with MND in December 2011.
Showing posts with label busy. Show all posts
Showing posts with label busy. Show all posts
Tuesday, 18 September 2012
Wednesday, 2 May 2012
WHAT A DAY !
I said to a number of people:... You have to be intelligent and strong
... to be this ill!!!
I have written, printed and mounted the rest of the labels for the a-MAY-zing exhibition...
Had my nails done ( a black with sparkle, is this a mistake?)
Entertained a friend.....
BUT most of my time was spent on emails and phone calls. So just to give you a taste of how manic it can be to try to get your home and car sorted, as suitable for someone with MND, here is a run down of my day as apart from the things above.....
So , as you can see I am not idle. But neither do I have any confirmed results on house or car....
OK. Tomorrow is another day... and , believe it or not, today was typical.
and.....All I want to do is to enjoy the time I have.......
HUG ME, I'VE GOT MND.
... to be this ill!!!
I have written, printed and mounted the rest of the labels for the a-MAY-zing exhibition...
Had my nails done ( a black with sparkle, is this a mistake?)
Entertained a friend.....
BUT most of my time was spent on emails and phone calls. So just to give you a taste of how manic it can be to try to get your home and car sorted, as suitable for someone with MND, here is a run down of my day as apart from the things above.....
- Called Allied Mobility, found I could have a Peugeot Impulse, £10,395 Blue. BUT would Innvacare Dragon chair fit in?
- Contact OT re referral for accessible home.. Out of office , left message.
- 10:15 Indoor wheelchair arrives. Man on his own. Wish I could have helped him down steps, sadly impossible.
- Ring Gateway to care to ask for PA. Have been asured by psychiatrist that I can self refer for this service. Not known. Will confer and call back.
- Ring wheelchair people. Is the Dragon the one I will have ( this is what they have said, but need to confirm for fitting in car) Result. They need an assessment, probably next week. ( I'm in hospital then) But they will lend chair to garage to fit in car... if it is possible..
- Still waiting to see if dragon fits in....
- Stannah stair lift man arrives. Intermittent fault on switch? He thinks not , but my hands! (I get stuck halfway up the stairs!!). Sod my hands!!!
- Speak to Motability. refused grant again. But helped to find other car providers. .. Actually was transferred 4 times on this call. Ended up that Thersa will ring back. She did and thats when I got info on car possibility.
- Contact Ebay.. bags to print for exhibition not yet arrived... email only method of contact ( are they hiding).
- Ring GM Coachwork recar.... Dave will call back.
- Send txt to two missed out friends re exhibition...
- Ring Sirus automotive. Possible Fiat that I could drive from whell chaior. £8.995 but £1.495 to put locking for chair in... though later on they felt they could do a deal on this. Car/van is black.
- Richard rings re wattage of fire for bungalow.
- Gm Coachwork ring back, it's not Dave it's Mark. They have two suitable cars £13k and £16 K. I said thankyou, but no way.
- OT rings back to confirm she has hand delivered the referral.
- Email sent to Accessible homes to ask if equity release possible and if so at what percentage.
- Gateway to care ring back and offer me, not a PA, but some boxes to pack up belongings in!!
- Gateway rang to say they didn't provide a PA but I should contact SCOPE.
- Dentists rang , could I call in to do paperwork or should they send it. SEND IT PLEASE!!!
- Get email from Calderdale to say that my email( asking for details re necessary adaptations, and giving a time for this to be received by me,)..... is being logged as a complaint. I have been moved on to another manager.
- I respond that I wasn't making a complaint merely seeking a resolution quickly and an acknowledgement that time is of the essence. ( Bearing in mind the first referral was made on Feb 17th!!)
So , as you can see I am not idle. But neither do I have any confirmed results on house or car....
OK. Tomorrow is another day... and , believe it or not, today was typical.
and.....All I want to do is to enjoy the time I have.......
HUG ME, I'VE GOT MND.
Labels:
a-MAY-zing.,
Accessibility,
busy,
MND,
phone calls,
WAV cars
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