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Showing posts with label bed. Show all posts
Showing posts with label bed. Show all posts

Sunday, 24 March 2013

TODAY I FEEL SAD.

Today I feel sad.
MND certainly is a  progressive ,and for me, progressing disease.
This morning I couldn't stand , as I usually do, when getting out of bed and doing the transfer to my chair. My night carer had to help me.
Then, after she left, I needed the toilet. 
I couldn't get off. I tried on and off for about 20 mins, during which time I cried. 
Eventually I rang my neighbours, who fortuitously had popped in yesterday with their phone number!
So they got me off the loo! and \Ive spent the day trying to be positive, but not really succeeding.
I feel that if I were to go into the studio and paint, it might help. But my creative mind is blank at this moment.

Sorry to be forever moaning, but this is a diary of living with my MND.... for the public to read,if interested, for my family now and in the future. And you can't always be positive about things when you have MND. Because the reality is that it is horrid, horrid, horrid!  And mostly we do look on the bright positive side, but today, for me, that's a big ask.

Lets hope tomorrow brings some sunshine and joy.

HUG ME, I'VE GOT MND 

Friday, 8 March 2013

SOLUTION ?

This will probably be my shortest ever Blog page !

Busy day... would to ages to write detail, , SO major events are :

  • Night support after Sun, will happen. 
  • Dr visited. Happy things moving in lungs. I'm still v unwell but no need for hospital ;unless I wished.... I don't !                                                                                                                          AND.........Thanks to M, (my Physio),C (support worker) , and friends ,L and R...
  • Hospital bed dismantled ,YEY!!! 
  • Pressure mattress put on double bed.(Necessary) 
  • Bed moved into proper bedroom.YEY!!!
  • Having had 7 1/2 hrs sleep in last 48hrs... sleep will help cure , Im sure.
  • Haven't tried getting into bed yet.. carer here to help.                                                                                                                         

AND , SOLUTION??? Very small appliance added, which will allow me to be raised up... sooooooooooo simple....... 

I am glad/grateful ,  that help was rushed through. The perceived wisdom was, a need for Hospital bed.... BUT.... maybe this very small technology would have worked... would have saved much angst during the last week.(Pic below)

Well, we will see... have yet to try out... maybe on the chair again tonight ....... hope not !




HUG ME, I'VE GOT MND 

Thursday, 7 March 2013

LAST NIGHT I FLEW TO CAIRO

Last Night I Flew to Cairo ......well , in my imagination ! You see ,the hospital bed is so difficult to turn in, so difficult to sit up in ( even with the leg break), that I decided to sleep in the Rise and Recline chair.
And..... when you are seated like that you generally are  on an airplane . I knew I would be in it (Chair) for 7 hrs, and I recall Egypt is about that distance away...well.. ish...   AND..... as Cairo is my favourite city it seemed the obvious place to go.
Unfortunately, I didn't have time to walk round the Pyramids or to go to the Museum .. as at 5:15,  ( after 2 X2 hr sleep slots),  I woke with a serving of tea from my flight attendant... no sorry, carer!
 By 5:30 the inevitable trip to the bathroom was necessary. I decided I would try the proper bed for a few hours , until Marianne , the breakfast carer arrived.
I got onto the bed and with help was positioned in, in  an upright position. But then the panic came as I couldnt breathe, and couldn't move sufficiently to give my chest the expansion it need to access the air.
The carer calmed me and quickly helped me into my wheelchair.
 It was by then  5:50.. and there I have been since .. You see it's so difficult to get on the Rise and Recline chair without support...  and getting into the chair was never a priority when people came... bathroom always was , as getting off the loo is somtimes impossible.... hope when Im better I will once again self manage...

Anyway , today's visits :
Marianne came, and made breakfast.
Man came to write care plan .
Laura was supposed to come but got caught up on business ( and silly me, I missed her txt).
Julia popped in and so did Ginny... I had a coughing fit so they had a chat..
Tea time carer came, leaned on the fridge door, and now it barely closes.

With so many people coming into the kitchen I am going to have to put advice notices up as the potential damage through   lack of sensitivity as to how things may or may not work (Ie people expect things to work as they think.....and don't make the allowance ,that things may not conform !!!).. The kitchen will end up like a Youth Hostel Kitchen... This all sounds trivial, but it is driving mad having to over-see so many people and there apparent lack of attention. They do mean well, but their priorities are not necessarily mine. Anyway,,,,,,, I did have some calories in the form of cool soup with coldish tomatoes on toast !

Karen was to have visited, but there was an accident in Tod and the roads were closed, hence the carer cooking... Im sure she will visit soon.

And very soon carer for the night .. another new person will arrive.

Its stressful having these numbers of different carers through the door.. and I appreciate that this plan has been put together quickly.... and when I think about it the stress of settling in so many people is less than the stress of not having them.

HUG ME , I'VE GOT MND 


Tuesday, 31 July 2012

FOUR AND A HALF HOURS

Today I spent one and a half hour working with my physio and OT, trying different methods of getting off the floor. The was exhausting.


So exhausting, that I then spent another three hours in bed getting over the exhaustion!


That's another 4 1/2 hrs of my life gone.... what a waste!
 But a necessary skill as I have ended up on the floor several times recently and had to call for help.


HUG ME, I'VE GOT MND