POSER !!!

Today my very good friend, fellow artist.......... and actually brilliant artist .. Janice,,,,,,, , came to visit.

We had a great day.
When I first told Janice that I had MND she cried, then asked if she could  paint me... Of course I said Yes Please.

 Janice has such a delicate and sensitive touch with paint, she captures the soul of those she paints.
I am so proud to be her friend and so, so, happy that she wishes to paint my portrait.

So the day was spent chatting, taking photos, and with her sketching me.

The only interruption to the day was a prearranged visit from Becca.. she came and did my nails... so needed ,and so lovely to see her. I did go to Salon Eden where she works, but feel that I can't ask people to help me out for such a frivolous thing...

Mind you is it frivolous?  It is about me being me. So now I have a lovely set of pink sparkly nails.. Thankyou so much Becca if you are reading this.  Thankyou Claire for letting Becca out.

As soon as I am in a proper wheelchair and with my house and car, I'll be able to get out and visit again... Then I can have your lovely facials too..

So  a very happy day.  Tomorrow paperwork, the Todmorden College Open Art Exhibition ...... and Richard to visit on update re Bungalow.. another positive and exciting day in prospect.


HUG ME , I'VE GOT MND

WEDNESDAY... I THINK!!!!

This morning I had to be up and dressed for Dr Cerys from Sheffield. She is doing research on life activities and the effect on MND. It was  2 hour interview, but as I had remembered meeting her in Sheffield, I realised she was pregnant... so I was anxious that there was no cigarette smoke around. It turns out her baby is due 2 weeks after Christina's ie late Sept.
Anyway prior to the interview I had to fill in a timeline of things that happened work-wise, education, family, health, holidays, pets etc etc... This time line was used ton help with the questions she asked. Though I have never been sporty active , it did come out that I have been an active person... well I hope it happens that this is useful to someone.
After the Dr went ,I had time for a quick cigarette!! Sorry, but a need...
Then Sarah, podiatrist arrived. She made a splint for the toes on my left foot. They are turning under and causing pain. I hope this splint will help.
I decided that I needed a treat lunch ,so baked garlic prawns and had an avocado pear. I was resting, supposedly,    then... but my heart rate kept going up and up. I think it was anxiety about getting out of the house at 3 to get to the hospital for 4 to see my CBT  contact , Christine.
Well I summoned up the energy, one step at a time. Helen and Steve helped me out and I actually got a parking space not far from the psychology dept. I walked very slowly in. Rang the bell... 5 times.. no answer... by this time I was leaning against the wall and about to sink to the floor,,, my legs were so weak. It turns out that all admin staff had to go on a course and the other people in the building should have taken the bell calls... but they didn't .
 Eventually Christine herself appeared and helped me to the office. It was a slow walk. Christine is a climber  and has been to Everest Base camp... this was the same journey for me, ie up the corridor to her office.
We talked about issues for an hour, she then helped me to my car.
Our next appointment will be at my present home. When I get the car and wheelchair I will be able to do these visits myself, but how kind of her to do a home visit.
Actually when things get bad and perhaps I am totally in bed, she has promised to always see me, and to do home visits.

So I got home. But today I have had pain in the front of my right leg. Hope this isn't an indicator of more weakness on the way..... Anyway Steve was looking out and carried stuff from car and then came in to put re-cycling out...
So that is me up to date... going to get dinner now and watch The Apprentice... how dim are some of those youngsters.. I'm sure I could do better at the challenges... but could I work with SIR Alan!!! ???

HUG ME, I'VE GOT MND

6000 +

Yes 6038 , to be accurate, viewings of my Blog. Don't know quite why, but this makes me happy.
Today was the day to get through paperwork... have I done it... well not really!! But I have: arranged storage men to come; photographer from estate agent; re-posted pics to MNDA; contacted OT re ramp for SAM centre; tried to get help to get out of house for tomorrow ( I have hosp appointment but may not be able to go as no two people to get me out as yet); talked with friend Jacquie, with whom I haven't spoken foir many many years; arranged nails to be done at home; confirmed Janices visit (she is painting my portrait); had a cushion assessment; had physio and met my new OT , Bethan; Oh found out I have to pay £72 to continue web-site... think I'll let it go and just show any new images on this Blog;  and as yet know Ginny will call and Ann will visit...

So... when do I have time to catch up on paperwork???? and manage to be ill... YOU tell me!!!!

HUG ME,I'VE GOT MND

I COULD, BUT I WON'T....

I could moan about being exhausted.. but I won't.....!!!!!!

As anyone who has ever moved house, or prepared to move as in my case, you know it's stressful
Add to this buying an adapted car, but unable to procede as license not returned yet... plans for bathroom not sorted,, planning permission now needed for ramp... not being able to get out of house... and having MND...
You might understand why I am tired and sometimes low.

BUT on the bright side, many friends have rallied  round and helped by getting a whole room full of stuff that will go into store to de-clutter the house. ... and today was very special as Janet and Theresa came, sorted and brought a picnic. We had thought we may go out but I simply had no energy to get up steps. So we enjoyed it in style in my garden. When they left I had a 3hr nap on my bed!!!

Picnic in Garden

IS IT WRONG, TO BE STRONG?

Today very difficult.. on the verge of tears at every point and turn..
Started with Darren re legal obligations for equity release (99% likely) , then OT , Scott.. he has be so helpful and supportive but is moving to Scotland,,,, I wish him well but will miss him. Then a SAM plus husband, came and sorted one attic bedroom. Then Richard re carpets..( Greyish black throughout, but wine in bedrooms.. )  So through all this I was apparently cool... but actually I'm so very stressed.
 The enormity of  moving, and coping with my lack of mobility is so, so hard.....

I am trying to be strong, and, I guess, present myself as such... but is it wrong to be strong?
 Should I tell it how really,  it is    

 Is it pride that keeps me from doing this... perhaps?...
Actually , to tell you all the truth.. life is hard, it's really , really hard..
 I'm facing so many day to day problems ,and......... death ......soon... not in any way good! 


ps. the format of Blogger seems to have changed , so if I can't use same font etc then I'm sorry,,,,,



HUG ME, I'VE GOT MND

MESSAGE TO SELF !!!!

What will be will be.... a damn hard lesson to get into my thick head!


I am trying to de-clutter my house in the next 10days, send the de-cluttered stuff to store,  then my house will look at its best to go on the market.
But I'm getting stressed.. I keep telling myself ..Calm down, what will be will  be..  But I can't! BUT I MUST !!!!  

It's rather like that game  where you move squares around, up, down and .. eventually... get a whole picture!  I see the whole picture, and want it NOW!!!!!! but must relax to get it sorted.


Stop ranting , live, girl, live! You've got treats.. tonight Pizza, wine friends Christine X2, tomorrow Di, Eileen and Choc Brownies.. Help from kind Samaritans... You are lucky, you will get through...


Then pep talk delivered to self., I remember ............ shelves fell off wall in attic... now covered by book shelf.. I need a plasterer.. will polyfilla do? Who can I ask? And I can't even get there to see it!!!! 


And all this whilst the sun shines, that's where I should be not stressing. Perhaps it's time to take a note book into garden and write it all down.


Yep! Lists are wonderful for clearing the head.. That's what I'll do,  with a cup of Earl Grey... that will be splendid!

GREEN, GREEN, GREEN

My Fiat Qubo is to be Green... but what green? I feared it might be a horrid green nearer to gold... and I don't know... I need the car/van but it's ability to make me independent is what is the priority... So as I drove back through the valley this evening, the sun was shining and there were so many greens.. I have now come to terms that the colour of the car/van will be Ok.. well maybe not my first choice of shade, but sometimes you just have to have different priorities. And thus I accept.
 MND is so horrid, and so many kinds of compromises have to be reached. Colour is so important to me, that is a difficult compromise, but it's gladly one I will be make to be independent.  And who knows the green shade may not be too bad!!


I visited Dr Thomas today, the lung/chest expert.. I have exceptional capacity and strength. This is brilliant, as muscle function around the lungs is so important and weakness will signify a begging of the end.


Also good news re home loan. It seems that it is highly probable that I will get equity release through Calderdale... but even if it doesn't work out I will get a bank loan, and the work on the bungalow will be going ahead.


I also met the toilet man. A bidet toilet that dries and will give me some dignity for as long as possible. The price I thought was £4000 but it actually is £2500 and the MNDA  will possibly help towards  the cost. We'll see.


So all in all a good day.


Except for:

HUG ME, IVE GOT MND