LIFE'S TOO SHORT TO EAT SOFT TOMATOES !

So as of today I have had 21,225, hits.... Cant believe it! 
Thankyou to anyone who has read these posts ! 
I sincerely hope you have found solace, help.............. or mere fun in reading !

As for today's title ... Laura was making me a salad for lunch.... I knew I had ordered too many tomatoes by mistake ... I then had a moral dilemma .. eat the soft tomatoes first,... then, by the time I ate the others , they too, would be too soft .. so.... dump the first lot and have the salad I would enjoy...... dilemma ...... thoughts of those who don't have sufficient to eat... 
sorry, didnt do the moral thing.... we chucked the soft tomatoes and I enjoyed the salad. 

BUT... had I not have  MND , I would have used the soft tomatoes in a sauce.. even if it did get frozen for later.. 
but I can't do this now.... so sorry world !..

I promise I will do a better Tesco order in future, and revue the the content of fridge before ordering.

Care costs: 2017 too late for me ... so I battle on, spending my children's inheritance.. as will most MND people I guess.

 And as for saying all people with disability or terminal illness will get their care free , as they do now..... sorry BULLSHIT !!!!

February... next moan... it's  Feb-RU-ary ...not...Feb-U-ary .   NB BBC and ITV !!!

Moans nearly over... : Sharon from Splash didnt arrive this morn.. too much snow ?   

Thank heavens for Laura who helped me get clean and fresh ...

Beth from Equipment loan didn't ring back today... she had woken me on Sat morn  saying I had two Rise and Recline chairs that needed servicing... got short shrift !
 I've been through the two chairs stuff twice before ! .............and the only chair I have is two weeks old... so why does it need a service ???   I suggested she rang back today, but  she didnt ! I await the next call !!!

This Blog  Post should have  been, was planned to have been, about the total busyness of last week, and thus why I didnt Blog for a few days... but it's all lost in the mists now... I'm moving on to this week... ! 

BUT have to add a funny.. Last Wed night got my dinner out of oven and dropped it... covered it up with roasting tin.. thinking friend would visit on Thurs..... she was ill... so I spent two days  driving round the mess on floor.

Dropping stuff continued all day Thurs... but the day did start spectacularly..
.................... I drove my w.chair over my clothes... got jeans and bra totally, TOTALLY.. caught up in wheels !!! 

It could only happen when you are in a wheelchair and your arms aren't too strong.. ie you have MND 

So, sorry , my written diary will hold the secrets of my last  manic week... and we will start again here ...



Tomorrow, Overgate Hospice day... 

Watch this space xxxx

HUG ME, I'VE GOT MND

MON, TUES, WED and THANKYOU VIV !

Bit of a catch up here and about Viv.
Sunday was quiet, good and calm. I spent much of the day writing my version of what I require in terms of Care... then planned to complete on Mon to give to Michelle at he planned visit today... But this got cancelled... there is a lot of snow here in the Pennines.
On Sunday evening Elsa came round , wheeled me in and out of the shower and made a GnT for when I had dried and dressed.
However, Sunday night was not a good night. I woke to turn over . My right leg turned, but my left didn't... I ended up in a frightening situation, where my legs were knotted and I had to lift them apart... I then couldnt get back to sleep... worrying....
Consequently on Monday morning, when I had to leave for Halifax Royal Hospital at 10:30 (early for me), I really , really, didnt want to go. BUT I had cancelled the first appointment , the hosp had cancelled the second ( the machine wasn't working), and thus at the third attempt at the Spirometry clinic appointment, I really felt I must not fail.
So having had a major stress re parking at the hospital (looking for a space), I made it to  Spirometry only 2 mins late .. Viv met me and said that she had been looking at my notes.. and had noted that I had another appointment for Fri for the 48hr ECG machine to be put on. (I sometimes have a racing heart beat). So, clever , kind Viv, had organised that I could have it put on at this visit. AND , not only that, but transport would pick it up to return it on Wed morn . (The only problem being that it could be any-time after 7:30 !! Needless to say I will still be in PJ's !!!)
I was well pleased with this service. My huffing and puffing into the tube ( that's what you do for a Spirometry test), went Ok.... A computer has to match and compare readings , so you don't know how good your breathing is till the results come through. However I could see that my effort was consistent , so I've done the best I can do.
I had planned to go to The Range after this, but the need for the toilet, and hunger, drove me home.
I enjoyed pasta with mushroom and tomato sauce... yum.
Laura had been and the house was welcoming and sooooooo clean .
I then worked on the care plan and printed it out, watched Lewis and went to bed... noticed it was snowing !!!
This morning the snow had deepened, so I thought the ambulance may not arrive to take me to the Hospice. I therefore put on painting trousers so as to hedge my bets..ie,  if transport didn't come I would have a calm day of painting. BUT the transport did come.. so in clean (but dirty !!), jeans and fur coat I set off for Hospice.
There were only a few of us today, my friend Jackie had a hospital appointment so was absent ,and another friend is in bed care... sadly , not well at all.
I had a coffee , a long chat to the nurse and then it was lunchtime. I had my usual of jacket potato:  and today there were prawns and also a lovely salad. For desert I had some fruit . We all sang Happy Birthday to Ann, who will be 40 on Thurs.
 There was chocolate cake, but I was having Reflexology when this was cut ... RATS !!! But the Reflexology so relaxing that actually the trade-off was worth it .
On the way back Michelle rang: no visit re Care Plan because of snow... now fixed for 2 weeks time .... RATS !!!
So here I am watching ( well listening to ) Four In A Bed. I plan to do emails, watch the news and then paint for a few hours...
Snow was deep at 3:00 ,but since it has rained and is being washed away. However it is predicted to get very cold tonight, so if it freezes the roads will be very dangerous...
Good job I am not planning to go out tomorrow though I do have a visitor ... which I shall write about then...... A new challenge, someone is going to shower, dry and dress me.
I cant begin to tell you with how much trepidation I am approaching this....  but it is the next necessary step... I can see that.......... BUT.........

HUG ME, I'VE GOT MND

FRIENDS WILL BE FRIENDS

So, yesterday, Monday... I was in tears.. no-where could I get comfy.

I had arranged for Barry to ride shotgun, and go to Hx with me to choose carpet and also to go to M&S for ready meals.

BUT when he arrived I was in tears as my w.chair was so uncomfortable...... Barry went home (we had decided that the trip was rather less important than getting comfy),   ie to get the right tools to adjust  chair.

W.chair services had done cushions and chair adjustments,  but you have to sit in chair for some while to see if all is OK.

I had had a miserable weekend re chair. I had to rub Ibuprofen cream into neck and take paracetamol to help with pain and strain. I was so upset, why can't I just have a seat that makes me comfortable.... surely so little to ask!!!

Anyway, Barry stayed and adjusted chair. When He left he said he could pop back at any time to re adjust... a real friend.

Barry also went to get prescription... I run out of Riluzole ( the one that extends my MND life by 5 to 7 mths) on Thurs... but though prescription  was supposed to have been written last Friday it wasn't.
He rang surgery this morn but they wouldn't say if there was a prescription ready, as he didn't know my dob!!!
I had further conversations and eventually prescription was promised to be  ready.... As I was at Hospice, Barry said he would collect.... BUT, yes, pharmacy didn't have all the drugs in stock, ( why am I not surprised) ......... so he will (kindly),  collect tomorrow.......

At the hospice I joined in the Blue Peter style art (!)... making a door wreath......... but I didn't choose typical red and green.. I got purple and pink.... will look good in my lounge!!!

I then had a session with the alternative therapist. YEY!!! I will get reflexology or a shoulder massage each week... YEY !!! sooooooooooooo welcome. I also will see Physio to do stretches.... another YEY!!!!

I came home and another friend, and her partner,  asked if they could pop up. YEY!!!! We had to drink black coffee till Tesco Man came !!!!... but then had a lovely GnT. YEY!!!
One of my friends massaged my feet and made sure I had warm socks on. WONDERFUL..... YEY!!!!

I am so lucky/ indeed blessed , to have such kind people around me.

MND seems to bring out he very best in so many people, I never knew that I was so loved, and I am so grateful, so amazed , at finding this out....... if I hadn't got this disease I would never have known.............. a definitive positive for MND ! (Can't believe I would ever say that, but it is so true!!!).

HUG ME, I'VE GOT MND

MND MARCHES ON.....

A bit serious this post. My arms are getting weaker.. Lifting becomes more and more difficult.

I got a call from Overgate Hospice today, offering me a day care place. More when I feel I can write about this. Its another step on the way for me. Quite an emotional step.



I am friends, (via MNDA and Facebook), with Alistair The Optimist.. he has been a public face for MNDA recently. He is (was), a teacher, father and musician. 

Three months ago he went into hosp to have a PEG fitted. 
The PEG is a tube to feed you, directly into your stomach. 
All of us with MND, will eventually end up with one. Well I guess, unless you refuse, but it does seem to me that a feeding tube is a small price to pay for a little more life... and the NHS even  pay for your "food" !!!!!

Earlier this week Alistair wrote, " A year ago, I was strumming my guitar... Now my arms don't move.."

This made me realise the road I'm on, and to feel so sad for us all. 

MND has an inexorable march forwards,, there is no stopping it, there is no way you can tell how quickly  it will move.....  It is hard to live with all this.

Alistair's music can be seen on You Tube. I thought it appropriate to share a track with you all.

Enjoy,.............. but think of all of us with MND...............we are really trying our very best to keep strong and positive.

HUG ME, I'VE GOT MND