So what has been happening in my life that has so made it difficult and weird?
Friday.. June 1st... Michaela arrived to stretch my muscles... so welcome... but I greeted her with tears. I felt all things were so beyond me... even emptying the dishwasher was soooo difficult. She offered to do jobs or to do muscle work. Deciding that help with back pain would benefit me most she did stretches, but also got rid of the dead flowers in vase which were driving me so mad, just looking at it and feeling I simply had no energy to deal with.. Thankyou Michaela.
At 3:30 I was invited to go to the Samaritan Centre to assess possibilities of a ramp to allow me access to the building to do my Sam duties. I felt, still feel, that a walk in ramp will suit me best. But the professional person feels that access with a wheel chair will be fine.. so a ramp for wheel chair is on it's way. BUT I won't have wheel chair for about 6 weeks... and then can only use it if it can be charged in car.. so and that's if I'm allowed to have 2 wheel chairs at once ie indoor and indoor/outdoor... against the rules ... watch this space...
I had a positive meeting with Richard re bungalow.. BUT he asked me to make so many choices re what will be best for me .. re Kitchens and bathrooms...... BUT how do I know? This my first time as a disabled person. I simply don't know what I will need.. I can imagine.... but am I accurate????.. the kitchen payment is down to him.. do I choose my wish list?... will this be too much?... what about colours?.. should I choose neutral for the next person?.. should I go with bright strong colours that are my thing?... what about hew next tenant?... ie... AFTER I HAVE DIED??? this is so strong a challenge to me, and is in my face all the time!!!!... can't get away from the fact that this is where I am....
At 6 Steve and Ester came to take me to the Todmorden Open Art Exhibition. I exited the house by going down the steps at the back. I would only need one person in attendance if this worked... very frightening as the steps are steep... but less energy required. so a good exit strategy.. Steve kindly, wheeled me round. This was good as I met so many friends. BUT most of them didn't understand why I was in a wheel chair... so over and over again I had to explain that I have MND... not easy... !!!
That night I had a TERRIBLE NIGHT MARE... a child flashed into my bedroom and asked Meggie to open the door next door.. so that he could rob the place. I rang 999... then ( in my dream) went down to secure the doors. Each moment on the stair lift was slow and frightening. I got in my wheel chair, drove to the door to lock, and left it at the bottom of the stair lift. In the morning I found the wheel chair moved. SO, perhaps I did do the trip down the stairs ??? but thankfully no robbery and no police answering 999 call!!!!
On Saturday, after a terrible nights sleep, I got up and stayed in PJ's till mid afternoon. I timed my shower to be finished in time for Tesco Man... for the first time, they came in the the time slot, but NOT in the hour as sent by the txt... so I was in the bathroom. I heard knocking, phones and could do sod all about it... if you rush in bathroom ,you could slip.. and after a shower my energy is sooooo depleted I couldn't rush if I wished to. The next thing I hear is Steven... he has kindly let Tesco Man in and has accepted the only substitution.... a RED hair colour instead of the Brown ordered.... So If I look weird Steven, it's your fault!
That evening Deb and her partner Steve brought in a curry... that's when I really started to feel weird... I was outside myself looking on the situation, meal lovely but simply didn't feel there to engage properly, hope I wasn't impolite.
This outside myself , looking down thing , first happened when my daughter , Eleanor, was about to die... it continued for months. I'm like that now... looking down, not engaging with myself... I feel that there so many decisions to make both practical and emotional, that I have , in effect, a mind that can't take any more.. So to survive I have to look down on myself.. it's a weird feeling and one which I need to talk to my psych about .. AND I do have an appointment soon... But without two people to push me up ramp, can't get into medical centre!!!! This will be fine when I have electric chair but not at the moment.... What kind of centre is this.. a ramp provided, but not good if you are even medium weight and need someone to push you. I did contact centre for help, but was told they can lend patients a chair but give no help.... not within their job descriptions, !!!!!!!
Then , I found that paint drying was rather preferable to watching the flotilla down the Thames!!
Sorry if this isn't in the correct order... have so much spleen to vent in might not be!!!!
On Sunday the Coven (Elsa, Liz, Maria) were due to come for curry. Maria had difficulties and the others arrived and did a few jobs.. the curry arrived, really good, from Spice Of India.. But all the while I had this feeling of being outside myself...
Monday , Sandra came and did cleaning. Very anxious re having a clean ordered home for people to view. Sandra can do some extra days but not many... will have to try not too spill too much.... difficult when your hands aren't so strong... At 4:30 we had our planned T party on my patio.. ie myself with neighbours... a jolly time, well it should have been.. except I simply couldn't engage... I'm just not the me I know. I hurts so so much. I want to be me.. I know I have MND but apart from that I yearn to still be me... and I'm just here looking down on myself.
I watched the jubilee concert, and several times wept. It was the older performers who did this. They were not note perfect... so it was good to realise that we all grow old and are not perfect.. not even Macca. BUT when he sang Live and Let Die , it brought back such a happy memory. I saw him at Glasto and he opened with Live and Let Die, with same exciting flames and lights... how happy was that moment for me... one of my best, very best memories. Then he sang Let it be.... WOW!!!
The Beatles (Lennon/McCartney)
From the album Let It Be 
When I find myself in times of trouble Mother Mary comes to me Speaking words of wisdom, let it be. And in my hour of darkness She is standing right in front of me Speaking words of wisdom, let it be. Let it be, let it be. Whisper words of wisdom, let it be. And when the broken hearted people Living in the world agree, There will be an answer, let it be. For though they may be parted there is Still a chance that they will see There will be an answer, let it be. Let it be, let it be. Yeah There will be an answer, let it be. And when the night is cloudy, There is still a light that shines on me, Shine on until tomorrow, let it be. I wake up to the sound of music Mother Mary comes to me Speaking words of wisdom, let it be. Let it be, let it be. There will be an answer, let it be. Let it be, let it be, Whisper words of wisdom, let it be
So Let It Be....
HUG ME, I'VE GOT MND
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