SHEFFIELD VISIT

I have already written a short note on Facebook re my visit to see Prof Shaw yesterday. Sorry blog readers, today you are second! Basically I did all the usual pulls,stretches,breathing into tubes,blood taking,weight!, and talked with the prof. She had all the results of the extensive tests from my stay in May. ..and it's sort of positive news.basically the muscle strength in my legs has deteriorated. But I know that, that's why I use the wheelchair more and more ,otherwize I would simply just fall. BUT there has been little weakening of the rest of my muscles, ie from the weakness already in my shoulders and arms. She also said that Riluzole seems to work best(prolongs life) ,when weakness is limited to one main area,in my case legs. She also said that I should think of having had MND, at least from May last year as that was when I started limping. So I guess I am now over one year in! She did say that I must not be deceived, there is no cure, and there will be inevitable further deterioration. A salutary thought. Having finished the tests for me I was able to give blood for DNA research, and complete another info sheet re family history of MND.... None. I am in a lifestyle study having completed the activity study questionnaire. There is so much being done by Prof Shaw and the doctors into researching MND...thus I have decided to have shared care between Sheffield and Halifax. In no way will I put dr Mahmoud down, Halifax, he is wonderful and it is he who suggested prof shaw... So there is no conflict. The v difficult bit of the day, was waiting for transport, which didn't arrive till gone six. I got home at eight.... So have done little today! Can you blame me? Tomorrow is a green day, the day I get my green car! Hope the paperwork is now complete! I'll believe it when I actually drive it! I was told I would get car in a week to ten days, that was mid May... You see why I'm sceptical So HUG ME,IVE GOT MND

OUTSIDE MYSELF

I had a home visit from my psychiatrist today. He completely understood why I can't see him at the medical centre until I get an appropriate wheel chair. (see para after this re wheelchair.)  The design of the splendid new Centre in Todmorden is so daft, and inaccessible for people who have difficulty walking. There is a choice of ramp or steps... But the ramp is quite steep and long as it has to rise to quite a height. It therefore would take two people to push me up to the entrance. It is likely that I might be able to find two friends who would be willing to do this.... However, why should I? It's simply not right that I inconvenience people in this way.
..... Anyway, I have been feeling as though I am looking down on myself and watching all that is happening to me. It such a strange disorientating feeling, and makes me feel so unreal. I'm watching a video of myself.. and yet I'm here.... As I thought , and he confirmed, this feeling happens when people are in extreme stress , it's a coping mechanism. It doesn't make it right, or make it better, but it's good to have an explanation for this horrid, weird feeling.
He suggested that I might need some respite, and I agree. The few days I had in hospital were such a break. I felt safe, and anxieties dropped away for a while. food came without the battle in the kitchen , I could shower safely, support was there... I could easily have become institutionalized!

Anyway I have decided to talk to a GP re a referral to Overgate Hospice. Even if I just spend the odd day there,I will have a meal, enjoy company and be able to have a safe bath... it is so long since I was immersed in water. I wouldn't wish this every day, but it would be such a treat every so often.

The other advantage of the Hospice, is that I think that is where I wish to die.. I need to be secure in wherever the place is. From what I have heard people are so caring, and the atmosphere is positive, even though all people are terminally ill. The other major factor is, that, I understand that families are supported as a whole. It is important to me that my girls and their husbands are supported when I die. This could be the right place for me to spend my last days.

.....................................Wheelchair ,update... (adding to stress). Next Friday will be 6 weeks from when I was given the training for the outdoor/indoor wheelchair. I was told I would get it in 4 to 6 weeks. I thought I would ring today to see what was what. What I did find was that it actually wasn't ordered till 2 1/2 weeks after the assessment! This is to do with budgets!!! So now I have extra time to wait..... more stress..
........................................And yet more stress.. the money being released from the sale of my house, which I will have upfront to get the adaptations done on the bungalow... well the relevant  people (from sheffield,  don't ask!!!)    sent a form to fill in... no problem. BUT I have to send in my house insurance. This is fine , but they expect it to be for 200K, the sale price, yet a rebuild price is only about 150K, so now I have to adjust insurance.... another stress... I need a secretary!!!!!


Tomorrow I go to Sheffield to see Prof Shaw, to get the results of the tests . 
Watch this space.. 
but maybe no news tomorrow as the trip to Sheffield is exhausting, so I doubt that I will Blog tomorrow night.


HUG ME, I'VE GOT MND

WAITING

Life seems to be, at the moment, a series of waiting for things.. This is so, so hard. I feel as though I have such a short ,probably, time, that I simply don't want to wait for anything.
I know people can't produce things out of a hat, but times should be accurate, Then I could cope.

The time on the bungalow is now down to 7 weeks... but watch this space!

The time for the indoor/outdoor wheel chair is now 5 weeks from ordering ,,, so it should be here  soon, a time of 4 to 6 weeks was given at order.

The wait for the car... WELL.. I was told originally I would have it in 7-10 days. That was so long ago, I can't even remember when it was... But then I was told to come last Monday. It was at Elland, and I saw it, sat in it, took pictures of it.... but couldn't have it!  ............... I was told to come back in a few days.. I said , Ok , I'll come back in a week... to make sure that all would be well. ...........I first had a worry, when having tried to contact the supplier to pay, there was no response. I finally got in touch with them this morning, before my friend Ann arrived to take me to collect it... Apparently the paperwork hadn't been completed as the Motability Road show was on... ?!!!              So a new date was given of Wednesday,,, but I'm in Sheffield hospital that day.              So, finally, Ann can take me on Friday so that is when I should collect the Green Machine.

We'll see.

All these waits are just about Ok, I can cope if people keep to their promises... but they don't.
I guess I shouldn't feel I should have special treatment... BUT my life is passing.... This is so sad... I'm so demotivated,,, haven't dressed again today... just had TV on and played scrabble with strangers.

The psychiatrist is visiting me tomorrow, I will have a lot to unburden myself of...
and this Blog, too is a way of doing this... so thankyou for reading it.

HUG ME , I'VE GOT MND

BLOGGING

Sorry if that should be one G... never was a confident speller!

I know I haven't Blogged for a few days.. It's really strange that the last few days, though eventful in some ways, have been relaxing days... It seems the more you have to do, the more you do. But as you must understand, I must rest as much as possible. I think I slept 11 hours a night for the last few nights... well with the excception of last night.
What a night thast was .. wind.. rain.. floods! So, so noisy.. I don't think I slept till it started to get light, then woke every hour... not good... today I ache all over. BUT I am so thankful that my home wasn't flooded , as so many were in Tod.
I was at the Todmorden Hippodrome watching a perfomance of Two, when the flood warning siren went off. The audience were evaccuated and members arrived in force to start to try to control the flood in the building. Such a shame, the building was hit by floods before and the excess on the insurance policy is now very high.
I wish I had become more involved in this lovely little theatre whilst I was well enough to be very active.. I had always meant to, but didn't get round to it until the last few years... now I cna't get on the stage ( because of steps) even if there was a part for a woman with a zimmer!!
So I guesss the moral here, my friends, is don't put things off..... it might be too late.

My days seem so full at the moment, even though I have little more imput  to do with accesss for bungalow... think this is mostly sorted now... just the work to be done!
My big decision is which sofa do I buy.. The one I want is from Sofa Direct.. a lovely Pink velour... but it's expensive.. the sale ends on Sunday... Ikea do a pink sofa but can't get swatch to compare fabric.. do I order today and just take a chance... don't know. keep thinking, the sofa workshop one is soooo lovely, but will I need the extra £500 more in the future?  Who can tell. I feel so guilty about spending it when it might go towards something sensible .. like a commode!!!!!!  Oh god what a thought. I thought maybe writing about the choice would clarify my mind.. but it hasn't... watch this space.
Last Thursday janice came to do more sketches of me, she is painting my portrait... so as I had make-up on I thought i might try to take some pics of myself....

HUG ME, I'VE GOT MND.

WEDNESDAY

Actually another rather normal day. The facial libations in my arms and hands have diminished somewhat.... Perhaps causes them to be more obvious... Don't know. But the less there are the better as far as I'm concerned as its a sign that the muscles are working less well.
In a weeks time I go back to see Prof Shaw at Sheffield so will be able to talk this through.

A lot of good ,happy,normal things happening in the next few days.... Tomorrow Janice comes to do more sketches, she is a great artist and we'll have a good chat too!on Friday I'm going to the Todmorden hippodrome to see Two... Helen will take me and push me round.(hope I don't need the loo as last time we were there together she had to pull me off the seat.. Simply too low... Oh ! The ignomany ! On Saturday the Coven ,group of four friends, Liz,Maria, Elsa Nd myself "are meeting for lunch then on to The Handmade Parade in Hebden. Liz is pushing me round.

So a pretty good life really.
I'm happy, which can't be bad.
But please , don't ever forget, because all days are not like this.......



HUG ME ,I'VE GOT MND

WOW..... A "NORMAL" DAY

Yes a normal day.... I wrote a lovely paragraph about how normal a day I have had. How lovely it was to manage ironing, have my nails done, and have a visitor,,,, Nigel my ex deputy from Siddal...

How super it was to be in control and just simply, happy, no complications today.

THEN   I viewed my Blog... there were weird blocks of white.. so I tried to clear them... and in so doing I deleted the lot...


So, as I say, a normal day!!! Everything good except my grasp of technology!!!! No change there!!!
.


HUG ME, I'VE GOT MND

AND , YES, IT'S GREEN!

This morning I had a lovely shower... have had problems with drying myself... swinging the towel over your shoulder to dry can be very destabilizing... and I'm inclined to fall.... so I decided on a new tack... use a towelling robe. YEY!!!! It worked well. So no new towels, just a few more robes to replace.

Anne P arrived just after 11 and we set off for BrookesMiller...

David had a number of calls to make, we had a coffee. sad news the cogs of Motability sometimes go slow, I can't have my WAV car for another week..... so sad,

AND THEN I did get to see it... and boy is it GREEN... very very GREEN


Rested for most of the afternoon. Then a visit from Richard... looks like 8 weeks till the move... Ho Hum...
Well with the car at least I will have modicome of freedom. ....

Keep Smiling!

HUG ME, I'VE GOT MND

DAYS OF REST...

Haven't Blogged for a few days as my hectic life finally caught up with me, and I have slept a lot fitting in other bits as necessary.
On Thursday John came round and we started to empty the cellar. Rebecca came to and they both claimed bits for their gardens and gardening. The lawnmower is left as Rebecca does the garden and Tom does the lawn... v v grateful. It is looking lovely. All the rain has meant that the plants have really grown. The Hostas are magnificent and the slug pellets have stopped then being eaten, so they have large lush leaves. The Honeysuckle on the archway is about to bloom too.We're nearly at the solstice , when Glasto happens, and I have happy memories of arriving home about 5am and the wonderful fragrance greeting me. No Glasto thgis year, but the fragrance will linger with those memories of a  tired, dirty, happy Nikki arriving home!  Glasto back on next year, I wonder if I'll make  it. Will need a carer but that person goes free, so well worthwhile!!! Yey!!!!I plan to do it and see where I'm at this time next year.  Fingers crossed.
One of my recent dreams was that The Stones were playing and Michael Eavis supplied a helicopter for me to arrive in to watch them from the wings!! Well, anyone can dream!!!!

The man to value the house came at 12:30 Thurs, should have been here at 10:30... motorway traffic?!!

Tesco man came at 4... I didn't finish unpacking till gone 6, a bag at a time, then rest!!

On Friday I had a long session with Samantha, a social worker and we completed the form for a needs assessment. I think I can manage with my friends here and with my present cleaner but all will change when I go to Old Town. I will then need to pay for more help. I think someone 3 mornings a week for 2hrs each time will be necessary.
At 1:45 Rebecca came and did a pedicure... really lovely and relaxing but in the middle of the session the man arrived to do the energy certificate. He took pics of each light fitting, radiator, window the boiler, the timer,,,,, and heaven only knows what else!!!

I was sooooo tired, went to go to kitchen, and fell. Decided that a rest in bed would be a good idea. I slept for nearly 3 hrs, when Eliza, Andrea and my grand children arrived.

Since then its been a busy, noisy time! Liza and Andrea moved and packed up lots of boxes.. I played with children as best I could but they were a little reticent, seeing the w.chair for the first time... they quickly got used to it however. The iPad was, as ever a big big hit with Caterina and I have lots of pictures to look at by this dear young artist.

This afternoon they left after we had some lovely bacon sandwiches  . They are on their way now, I hope the traffic is light. I'm Blogging and will have a shower and another rest soon.


HUG ME, I'VE GOT MND.

After all this I was shattered

ALAS POOR KENWOOD......

A happy "Normal" day... Only one medical visit!!
Today was th3e day I was to bake a cake as Rebecca , Tom and Iris were coming for tea and cake to celebrate, belatedly, Rebeccas birthday.

All went well but at the very end of the mix, my trusty Kenwood died!!!
I had bought her second hand in 1978, from a friend , Vanessa, who had multiples of eveything and simply didn't want it. If I remember rightly I also bought a denim shirt dress and all for £10!  probably a lot of money then

Anyway I mark the occasion with this pic...

The cake was lovely..

And here it is.....

And this was the company!! a crocodile and a daddy!!

So as you can see I'm feeling brighter... Monday was a very very difficult day, I was very emotional.. This happens some times and I guess you can see that it is then reflected in my Blog... sorry if I was too maudlin!!!

As well as a normal day in the kitchen I kept the house tidy... even made my bed as I got out of it... well you have toi when your house is ion the market!


HUG ME, I'VE GOT MND

SHOULDN'T THE WORLD STOP....?

I remember 31 years ago when Eleanor Rose ( my middle daughter) died, I went out to shops and did all sorts of "normal" things. But it was such a strange existence, people didn't know what I had been going through, didn't know how deeply I was grieving. I felt then, I think I should wear a badge saying... my baby died on January 6th. She was 10 days old." In other words I felt the world should stop and take notice. But , of course, it didn't . The grief continued and very gradually I came to terms with the terrible  , terrible,  event of the death of dear baby Eleanor.

I guess I'm writing about that now, as I sometimes feel, Should the World Stop.. but actually life goes on.. and I continue to order each day. Visits from medical people to help me, visits from friends to whom I appear normal,( well as normal as anyone would in a wheelchair, who stumbled and walks with a strange gait.)... Is this how I want it to be?
Some days I simply don't know. The world continues to spin, but I feel out of sink.

Today I had a visit from friends from Hertfordshire, we first met on a camp site 26 yrs ago. We have kept in touch each year at Christmas and in the last few years met twice.
As they left I was brave. But part of me thinks , will I see them again? But  I probably will. The progress at the moment of the MND is slowish, but I know it's marching on. I will see them, but how will I be then? I simply don't know.
Each parting, especially when I see my children, leaves me with an emptiness, what will I be like next time?

I do try to be brave, as much to protect others as myself. But it is hard. Should I behave like this, or just let my feelings go.
I want to tell people that I love them, care for them and that I will miss the futures we may have shared in some way...

In a book I am reading, Tuesdays with Morrie, a guy with ALS goes to a friends funeral. He hears all the wonderful happy, loving things said about his friend.. comes home and thinks... what a waste... he didn't hear that.
It's no use saying kind loving words about a person when they're gone.. say them now.
Kind loving words may make me cry, but it will so help.

I think I knew this deep down, when I first entitled my Blog HUG ME...  When you are dying you need the love now. The world for me isn't going to stop, I shall continue to be as me, as possible. I shall go out as much as possible, but exhaustion does limit this. I shall paint, and I will try to be as "normal" as possible... but I carry this awful burden.  Some people take the stance (perhaps to protect themselves?) ,..... oh anything could happen... you could be here for years.
I won't. But I want/need  the years that I am here to be good ones.

On Saturday I went, yet again, to look for carpet. It broke my heart to know that a wheelchair on a wool carpet will wear through and thus I must have a polypropeline one. I love wool. It's warm, it's comforting, and I feel  it says something about me as it's natural and so special. What a silly thing to get upset about you may think. But I have had to make so many compromises.. my house now on the market, unable to get out without help, unable to get to the door quickly, not standing facing the shower, wearing a device to keep my foot from flopping, half filling the kettle so that I can lift it, ready meals   etc  ... and this is only the start. I am adapting to my life and my spirit is strong, but I need to tell you all ... this is hard... it's so so hard.


HUG ME, I'VE GOT MND

SUNDAY..DAY OF REST

So as you can imagine I have done little.Chrissie et al left about mid day. I sat in the sun for a while, had a go with my camcorder. It's really hard to hold steady with one hand. You'll see the proof after I've had a few more goes. I'm not going to spend ages on this tonight.. Partly because I'm tired but mainly because I'm doing it on my iPad for the first time. Not too sure it will work! HUG ME, I'VE GOT MND

STARTING TO SORT...

After the exhausting previous two days , I didn't Blog yesterday as Friday was to have been a day of rest!!!
BUT...... Along came the Physio to do my muscle stretches. This really really helps but the pain relief is short lived. I'm getting pain in my muscles not from MND, but because I have no suitable seating to support my lumbar region and my head/neck. For many many days there has been a promise of a Rise and Recline chair which will support properly... but so far no joy! This is causing me considerable stress, I have to move from chair to chair trying to get comfy... and actually there are only 3 chairs I get up from, one of which is my wheelchair.
Elsa popped in and we had a coffee. She had had to go to the Tod medical Centre, her visit.. and was shocked at the lack of numbers in the building. It really is very empty and I gather loosing money hand over foot. My problem with the building at the moment is access. It would take two people to push me up the ramp. Do I think it's 1 in 12 as building regs say? Don't know but it sure is steep.When I have the motorised wheelchair all will be well but until then , It's impossible for me to get in. I have contacted various people and so far, have been accommodated. The CBT consultant, my psychiatrist and the district nurse for a blood sample are all doing home visits. Which is great... but how silly. An outdoor lift , like the one at Burnley Market would solve the problem. OK issues re vandalism , but if it's OK in the centre of Burnley why not here!!!
At 2:30, my new OT ,Bethan came. I think I did most of the talking as I wanted her to know about me aND my circumstances. She did add one idea though that a remote button to turn on lights might be worth thinking about. I must  mention this to Richard. As we were talking about these helpful ideas it did occur to me that the key hole for the door mustn't be too high as I will be accessing it from a wheel chair.
After that a vv short rest and then Tesco Man arrived. By 6 I was having a sit down ready to wait for Chrissie, Andy and Caroline to arrive. They came at 8 ish. We had  pizza and some wine and chatted and planned until 10:30 . VV late for Chrissie who is now 27weeks pregnant, and as every woman knows, who has had a baby, boy is it a tiring job!!
This morning great coffee made by Andy and huge!!! croissants. The off we set for Halifax. Our first stop was at The Pellon Lane Carpet centre. A really nice man on duty, but he didn't seem to know much about his stock. Eventually I chose an Aubergine poly-propaline carpet... but was not very happy as it had the man-made shine on it... When we got back in the car I cried.. it seems I have to give up so much of my life, my standards to accommodate this damn MND. I have always liked and valued wool carpet. Warm, cosy and brilliant colours... But apparently a wheelchair will wear through it very quickly... DAMN!!!
Soi then we went to Argos where I got a Shiatsu massage cushion. Anything to help my back.
Not really happy with the carpet we popped into Classic carpets where I found a polyprop carpet I am really pleased with.. a palish grey but with stain guard... 7 yr guarantee, I guess it will definitely outlive me!!
On to Dickies tiles... an easy job here  white matt large tiles with a border. Chose brilliant border only to find that it would cost about £300!! Chose a glass trim instead... in grey ( again I know) .
That done home we came. Egg Mayo sandwiches.
This afternoon we STARTED TO SORT, Today the stuff under the eves.. and boy what treasures we found... more of those tomorrow................................  Now fun sorting............

HUG ME, I'VE GOT MND

THE 48HR MAKEOVER....!

Wednesday...
Halfords arrived at 9:15 and sorted all the stuff for store, leaving the lounge empty.
Rebecca arrived having thought that the lounge would need a clean and sert about hoovering and moving furniture.. ( what a star)
Sarah podiatrist, phoned, she had forgotten she had a meeting with Registrar as she is to be married next week..!!!!!
John arrived, carried things upstairs for me, the loaded wheelchair into car, saw me down steps  the off we went to Halifax.
First stop Howdens kitchens... chose pale grey cupborrd doors with burgundy back splash.. Sink and cooker both like a desk so wheelchair can go under.. brill
Second stop.. Classic carpets...sort of chose a spearmint green... but not sure.. really want grey but think I shouldn't have so much grey in someone-elses home.. this is difficult...
Third stop, B&Q to choose tiles.. think their display being changed as very few tiles on display.. think I want matt white, quite large..
Got home at 5:45
Ginny arrived at 6
She helped me move stuff from the kitchen. We then had a curry.
Ginny left at 9  ish and another friend who had a few p-robs she needed to talk over rang at 9:30.
Got to bed at 10:15 in time to watch The Fugitive.. missed the beginning, but had seen that the week before... but missed the end ,as fell asleep.


Thursday...
David from Reeds Rains arrived to take pics for house brochure, so did Rebecca and Liz arrive as my stylists.
Signed papers and realised I hadn't contacted a solicitor..
Had multiple phone calls re Closamat toilet, grants, the car and the need to send driving license... found out later that I can scan and email copies.. also psych will do home visit..
Off to Halifax.
Neurologist. He noted my voice and breathing strong but legs week and also left hand. .....Well I realised this any way... See him again in Sept as I'm off to Sheffield and Prof Shaw in a few weeks time.. If any new thing is found then he will see me earlier.
Need liver function test as Riluzole may upset liver so have to have these every 3/4mths.. will contact GP to get nurse to come in for test.
Then off to Marks... Bra buying, t shirt buying... and at 4 a sandwich and scone..(was starving!!).
Back at Lizs home to get Leah, doggie and then home.  Arrived at 6 ish and have sat in chair ever since..

As I have said many times before.. YOU SO NEED TO BE FIT AND STRONG TO BE THIS ILL!!!


HUG ME, I'VE GOT MND.

WEIRD FEW, JUBILEE DAYS

Hi Readers... so sorry I haven't Blogged for a number of days... but the last few days have been slightly weird for me.. mentally especially... but now I have a clearer path can once more write.
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

STARTED BAD.. ENDED GOOD !

Started the morning with TERRIBLE back ache. Michaela came and did massage and then with 2 paracetamol was able to face the day.
I actually didn't shower and dress till 5... but in the meantime...
I did loads of paper work. In truth most of it was paper recycling. But I did fill in all the forms for the car, now I have my license back.
Richard came at 2:30... and WOW what developments. It looks as though it will be 8 weeks before I get in bungalow, BUT... The doors are chosen, I have to choose tiles for bathroom , can go to Classic carpets and  choose carpet, ND need to choose kitchen too!! YEY!!! He has planned to have kitchen done with lower worktops, ie access ible for me in wheel chair.   SOOOOOOO Pleased about this.
Then I got a call from SAMS... it is very likely that a ramp will be provided to allow me to continyue volunteering in a wheel chair...

OK all this will take a few weeks but THE END IS IN SIGHT!!!!

Tonight, ( after I showered and dressed!!!) Steven and Ester Cooper took me to the opening of the Tod art show... ie the HND , Access, and BTEC people.  I was very impressed by the work done with the BTEC students. The room was so alive... congratulations.  Steve pushed me round and was able to bang me on the back at the right spot when my swallow went wrong.. Thankyou Steve. Dodgy moment there! Sadly I have had a few of such moments, is it the swallow muscles getting weaker... I think it may be . It's frightening for me, but not too many times so far. ( Praise be).

Tony was brilliant and has said he will come round soon to give me a tutorial... We agreed I'm Nikki artist, not Nikki MND...YEY!!!


HUG ME, I'VE GOT MND