O0O0O0H, WHAT A NIGHT ! WHAT A WED.NES.DAY NIGHT !

My carer last night was called Jay. Jay had been with me approximately two months ago.
Since then so much has changed in terms of my needs.

I had thought I would shower but decided to wait until Thurs as Jay did seem very anxious at the thought of using the hoist. I decided a simple regime would be best.

When it was bedtime the fun began !

I had said all my clothes are OK to wear again ,except, my underwear. Underwear goes in the laundry basket which is in the utility room.
So why did she ask about every piece of clothing ? Why couldn't she find the utility room?  After all there is only one room with a washing machine and dishwasher in !!!!

I feared her helping me into bed.
I was right so to do!

I explained that I could move myself a little, but not, if there was anything in my way, like a pillow or blanket. So why did I have to ask three or four times for these items to be put on the floor ??

Anyway ,without going into too much detail, I was in bed with light off at 1:00am. I arranged that she would wake me at 4:15 to turn me.

This is where the fun begins.
I did get turned, indicating, leg by leg and move by move, how I should be turned.. I tried to snuggle down, but knew I was too low in the bed. I also had burning feet. Efforts to move me up the bed  were attempted. (The full version of this lasts about 20mins !!! ).

Jay got a cloth to cool my feet.
I tried to sleep, but found I was too scrunched .
I called to Jay.I now needed to use the bathroom and this would be good because on my return I could be placed "up" the bed, in the correct position.
Now, to get out of bed, the back rest has to go up, ie like if you wished to sit. But my bottom was so far down the bed. It was the middle of my back that was resting in the place where my bottom should be. Jay moved my legs towards the ground . In order to try to help myself to a sitting position ,I held onto the foot of the bed.
And that's when it happened.
As I pulled towards the bed rail, the mattress gave way , dropping me down six to eight inches. I was wedged between the mattress and the end of the bed.

I felt as if I was about to fall through so I pressed against the end of the bed. Now what should happen, dial 999 ? or in fact what did happen... Jay came into her own and pushed me up from the dip as I pushed too.

I sat on the edge of the bed, gasping for breath as a result of the shock.
A toilet stop,and  a few cups of tea laterand  I  relaxed (!!) , in my chair. I was there as the day carers came .
I wrote a report of the event and emailed it to my OT and Physio.

A few hours later three men appeared. They fiddled with the bit of plastic that had popped out. It was a holder for the mattress that actually wasn't needed. But as to the dipping mattress it turns out that the button that lowered the base had been pressed. As feet are light the mattress stayed level , even though it wasn't supported. The result was, that when I went on to the foot area, I fell through onto the base.

I did feel embarrassed that I had caused such a panic, however the whole episode gave me a huge shock
.I was, and still am, very shaky.

And all of this on only three hours sleep.

HUG ME, I'VE GOT MND

THE PRINCESS AND THE PEA.... NOT !!!

Once upon a time there was princess, her name was Princess Nikki Rose.
Sadly this Princess had a terrible disease. It was called motor Neurone Disease. Because of this terrible disease, she didn't naturally move in her bed at night. This caused her terrible pain in her hips.

About a month ago this became , not a trivial issue, but a major issue as she was awakened each night with this terrible pain in her hips. She managed to turn herself, but was then wide awake and in such , such pain !

The princess decided to talk to the amazing helpers OT Bethan and Physio Michaela... ideas were put to the Princess...

Firstly, she could have a lever which would help her rotate. She had one inserted into her bed. This helped with the movement into the bed... She no longer had the indignity of rolling, commando style, to get into the bed.

But then there was a problem the Princess couldnt turn over. SOOOO She had another lever inserted. This helped, as she could just about use it, to help turning over and turning off the bedside light. (The light was difficult though, she couldn't (can't )put it on herself. So visitors were asked to turn it on if they arrived early evening. On the rest of the days she managed with a torch. This was a precious magic torch, formally used for Glastonbury Festivals. She managed/ manages.

But for the last few weeks she had been waking about 4:00 am in terrible pain, needing to turn. Even when she tuned with the levers she was left in pain.

Having talked to the Empresses Michaela and Bethan , she was given a choice. A hospital bed with a mattress powered by electricity... but which would make a humming noise all night. OR a simple topper for her bed.

Whilst the Princess knew that eventually she would have a hospital bed, with its attendant noise, she didn't feel it was necessary at this time and would rather a simple solution.

So Men arrived yesterday bearing a Topper mattress. They lodged it on her bed and it added over 2" to the height. Then the bed looked very high. Just like the former bed of her Princess friend who had had a high a mattress with a pea placed underneath...

But our Princess , Nikki Rose, had no Pea placed underneath.

AND for the very first time for weeks  our Princess was able to sleep for 8 hours ! True she woke at 4:00am to turn, and was slightly uncomfortable, but she experienced no real pain, and was able to turn and then immediately sleep once more.

In all the Princess slept for 8 hours. Eight hours !! She woke refreshed and had such a happy, happy day. 

I wish it could end , And She lived Happily Ever After... but with MND, that simply doesn't happen.... even in Fairy Tales....


HUG ME, I'VE GOT MND.