RECENTLY... THOUGHTS AND HAPPENINGS.

Today I should have gone to Hx Hospital to see a Bowel consultant , (any detail would be too much information !). The appointment was to be at 2:00. Ambulance turns up.... and we find that not sufficient straps are on-board ! Great apologies , but the fact is I missed my appointment. I will have to get psyched up again !! Rats!!

NIV Update: Night one went well. YEA!!! Nights two and three went well with NIV but sleep utterly wrecked by pains in my legs  . The consequences of this were twofold: acute disappointment and extreme exhaustion. In fact after ambulance debacle I slept for 3 hrs in wheelchair.

WHEELCHAIR Update. I mentioned accident in new wheelchair , it happened last Friday. I expected an engineer on Tuesday but got a phone call to say man was on hols.... I cant wait for next week and his return ! I now realise how comfy the new chair is and how useful the riser.

EXHIBITION I went to Chris Nicol's exhibition last Friday. It was great. Lots of sensitive paintings and lots of friends to meet up with. BUT Boy , did I miss my Luca chair. I am so low down in this one and the riser on the Luca would have been wonderful to chat to people.

LEFT HAND  My left hand, weak for ages . now is causing me trouble with typing and indeed holding wine !!  Both disastrous.

So a little round up on what has been happening in my life..........

HUG ME , I'VE GOT MND

MY TRIP TO WHITBY

A few times I have been asked what I would like to do that is special.

 I thought of four things at the time. : To go to New York ( friends did promise to go with me but sadly it never materialized………….. and cant now , I guess); to have pink hair (I did have a rinse but it came out after only three washes); to have an ice cream maker………(Bought ! and a great success too !!); AND ….. to go to Whitby………….

So last Thursday my friends Richard and Anne picked me up in the car I had hired (£116 per day), with a lockdown for my wheelchair. We went north to Whitby!!

YEY!!!

It was sunny, and we took the scenic route (But as everyone in a wheelchair knows when you are in a vehicle every bump matters !!.. )………but that apart.. . We arrived and it seemed even hotter. Seagulls called and you just knew you were by the sea… WONDERFUL!!!

Richard, who, when he gets an idea is rather like a terrier, decided I should have a trip in a boat!

I looked and just knew this would be impossible. I would need to be carried down steps, lifted over the edge of the boat and then sit on a bench… all impossible … eventually he simply had to believe me !

Then, about 3:00 by this time, we went to The Magpie for Fish and chips. Exactly what i desired.. We ate them by the bandstand and then sat in the sun. I had two conversations re wheelchairs with people who admired mine. One was with a girls’ mother. The girl, very white, spends her days on her hospital bed as it’s the only place she is comfy. Her local authority doesn’t provide tilt in space which is what she needs. I thought my chair was basic, but compared to hers it is mega high standard … how sad that a young woman stays in her bed because it is too painful to go out………

As my first physio said, it’s the creaky gate that gets the oil!!

 I said to the mum perhaps it might be an idea to pester her OT and physio………….. I guess that I’ll never know.

After our lunch we went onto the pier, but there are steps towards the end bit and thus no wheelchair access.

We sat in the glorious sun, sea gull cried as they wheeled around ……… utter bliss.

Anne and Richard afterthe Fish and Chips

As I get more ill it’s the simple things that give me most pleasure.

Then a trip to the church and the Abbey. The church was closed which was such a shame. I knew that David Smith, now Canon David Smith , our former vicar in Yarm, had been in charge there.. And I wondered if he still was… I wanted to surprise him. I found out later that he hadn’t retired and was still there but we didn’t meet up, as the church was closed. …….What a shame. ………..On to the Abbey. Well signed for disabled  BUT to get to the Abbey, after the easy entrance lift, you had to jiggityjog around the perimeter and then I couldn’t find an actual entrance for me in wheel chair!!!!!! Anne and I just laughed at the poor access for disabled people.

Me at the Abbey

We left and went to visit Richards’s sister in Guisborough.  When we left we drove past the best ever view of  Roseberry Topping. I have fond memories of Roseberry Topping. Each morning as I came down Gypsy Lane, on the way to school at Swans Corner,  I would see it straight ahead of me.  Also memories of  climbs up there. Two specially memorable.. Taking yr 6 up ( I worked at Nunthorpe Primary) and Simon the other teacher hurt his back. I had 60 children to manage and had to dial 999 for help. Also my first ever trip up on New Years day.. What a mistake ! Climbing without water and with a hangover, boy did I feel rough!!

We continued on to Yarm. I said to turn too soon and ended going up Ormsby Bank not Gypsy Lane so thus didn’t see Nunthorpe Primary at Swans corner. I then didn’t remember the route, but knew the post code of where we were going (to see my former neighbours)  so SAT NAV was engaged !

We arrived at Yarm and drove up at my neighbours... Christine and Terry. It was wonderful to see them. They had prepared a tea/ supper of sandwiches and cakes and some fizzy wine. We chatted about Whitby.. (Sometimes people find it difficult to get to the nitty-gritty of the meeting. I hadn’t seen them for many years and was now very ill, but this was obviously difficult for them to tackle.) We eventually really  talked and all was well. We mentioned things that we had shared: Chrissie playing with their boys in the sand pit; my husband helping to lay the patio .. and it still was there; our Laylandii hedge which still existed and still well trimmed as we left it; the removal of my pink rose hedge at the front (planted in memory of Eleanor), how I fed their baby and sent Christine to bed as she felt so ill,……. …………. And many, many other things.

It was wonderful to see these friends with which I had shared so much.. but funny that Richard eventually asked where I had lived…… NEXT DOOR RICHARD !!! 

My home in Yarm was large by comparison to mine now. I lost a lot of money when my husband and I separated. We valued the house and I paid his half and took out a huge mortgage… but by the time I sold to move to Tod house prices had fallen and I lost a lot.

 But that is history.

Me with Christine and Terry

I got home at 11:30 pm !! I was so excited from such a super day out that I couldn’t settle. I had a glass of wine and some cups of tea, …………… then bed.

Having slept well on my back for the two preceding nights thought I would have another good one…………. But this wasn’t to happen.

Sleep and bed are becoming such a stressful time for me.

……… and that will be my next blog,……………… I think……….

HUG ME , I'VE GOT MND 

GLASTO... HERE I COME !!! ?

Glasto here I come...!!! It's taken a lot of planning.

For some people, facing a death, they wish to do extravagant things like going on the QE2. For me, my QE2, is to go to Glasto, one last time.

For the last 12 or so yrs I have gone... and loved every visit.
My first time was with Anne. She had gone the previous year with her husband Richard. He hated every moment and thus I was asked to go with her.
My very first time ... we went after school on the Friday and missed Coldplay we also had to leave on the Sunday afternoon.. I thunk we missed Rod Stewart... but I thought it was brilliant... and well worth the money.

We were both working, Anne was one of my staff... eventually I was retired and Anne got permission to have a day off from Govs. So Anne would arrive on the Fri afternoon, I had already set up camp, ... and she had to leave on the Sunday.

One yr I went alone... this was OK but not as much fun as with my friend.

Thereafter we went together, and as I had medication which required refrigeration, I was allowed to stay on the disabled site.

The disabled site is amazing. There  are two marquees. One for tea and coffee , chat, charging of wheelchairs and activities,   and another for complimentary medicine, such as massage.
There is also a proper shower.
It has always annoyed me that people who support those with the real disability have used this shower... I never have.

The site also has many volunteers who are so , so helpful.

So my plans.... amazingly, I had a dream, about a year ago ,that Michael Eavis knew of my condition and flew me by helicopter to the Pyramid stage to meet the Stones. This was long before anyone knew that the Stones were playing.

When I heard they were to appear I was overjoyed. Anne and I had decided that to get tickets in October was dodgy as I didn't know how my health would be.
Every year I have been the one to get the tickets... using Internet and endless phone calls.... It has always worked... but this year I decided we should use her link with the Eavis family... I'm not going to say how... but it worked and we have tickets.

THE PLANNING. Well this was mega.. First I had to organise transport.I searched the web and found I could get a large vehicle which had lock down for the wheel chair for £624 .It was booked.I needed space to carry a hoist, a commode and me in a wheel chair. I noted that I also need a bed. I have rented one for £225. It will be delivered and collected from the site. I also have to remember night bags and the holder, a spare day bag and all meds....
Keeping dry has been an issue, so I have bought a coverall , it covers my whole body including my feet. I will need to take clothes for warm and cold weather... the list is endless... but, also includes a box of red wine !!

My daughter ,Christina, contacted , Make a Wish, to see if I could meet Mick Jagger... apparently they only deal with children.. she then contacted Michael Eavis, but apparently the Pyramid stage is closed to all headliners... even those with MND.

So Ive spent a fortune. BUT it is a so very special event for me ! Wish me luck! I'm apprehensive now but also very very excited.. I'm following my dream.. paying for it , but hey, It's still a less expensive than the QE2 !!!

The Glasto team for disabled people have been amazing.. we have been given a pass for the transport to access the site and also there will be electricity in our tent.

This is my last big trip... I'm going to really enjoy it..

Please hope there will be no rain.!


HUG ME , I'VE GOT MND

EEEEEEK ! A MOUSE ? IN MY HOUSE ?????

Today Laura came , as she always does on a Wednesday, to do the cleaning and all the other bits of caring that she always does.

Today is, "Put out the re-cycling "  Day. She moved the bags out prior to emptying and prior to mopping floor.

Then she spotted it/them ! Mouse droppings !!!!

Now, I used to catch the mice that Meggie brought in, they were always alive ...... grrrrrrh !!! But I caught them by chasing around with the colander,trapping them (eventually), and taking them up to the field above the house.

Well, I say this is what I did... I did, except for once ,when she managed to bring in two on one rainy night. The first was dispatched into the field but the second, when I had caught it, was thrown through the kitchen window, quite a drop onto the pavement !!! Sorry mouse.... but I wasn't going to get wet again.

What I hadn't realised was that someone was walking up the pavement and the mouse dropped very close to him !! OOOps !!!

So when I say I did this once , I mean, I did only do it the once !!

Anyway back to the kitchen clean today. Laura reckons there were mouse droppings.. Me, I prefer to think it was a stray coffee ground or dried herb.

Much better for me to think this than have to formulate the action plan for catching a mouse with the colander from a wheel-chair !

My Beloved MEGGIE.. the Mouse Catcher

Re name... IT'S RAINING MICE   !!!

HUG ME, I'VE GOT MND 

WHAT A DAY!!

I woke at 5:00 with griping pains in Tum.......... things not right since illness at beginning of Dec. Resolved : phone Overgate Hospice to ensure I see consultant Rachel tomorrow.. (Sorted this afternoon).

I spent the next two hours awake  and used this time to try to get comfortable and plan for my day.

I had planned to go to Hebden Bridge: Visit the chemists to sort prescription.. (needed on Wed.) ......... Take annotated care assessment form to Social worker( some errors) , book appointment with Psychiatrist ( feeling low some days and need to talk things over, like preparing for the end of life), post letters and parcel to Tam, also get to  form from Post Office which will certify documents are accurate.. needed for mortgage ( though why the hell I can't imagine, as they have all been taken by original broker... why can't he just pass on that he has seen this original info ??!!). Then on to Tod to check access to Philosophy class which happens every two weeks, and I'm interested in joining. AND I NEEDED TO SHOWER.

But I thought it out.
Laura could post parcels.
Laura would push me into shower.
Hospice would/ should be able to certify documents.
Ginny would look at access.
Carolyn would take letter to Social worker, same building.

You do need a brain to be this ill! LOL !!!

I decided to sleep........... woke at 10:50.
Laura came at noon.
We had a coffee and sorted list out .
Elsa took prescription in , Phone calls sorted lots of bits......... more than mentioned here............. lists are great!!!

At 3:00 not 4:00, as planned,  Carolyn and Karen arrived. They put other bed support on the far side of my bed. This will help me turn over more easily. A few accidents occurred,  as I have cables running everywhere...... but nowt that cant be fixed! BUT  Most difficult, is TV not working. Its ok as TV now as I've retuned it ,but the HMDI cable isn't working, so I have to get to bed by 10 in order to ensure I can watch Lewis ! No pause or record as usual. However friends coming round tomorrow and I am sure they will be able to sort cables. (Please). I did do my best to fix this , but getting into the corner in a wheel chair is, virtually, impossible.

Sue came to visit and we had brill chat. But when C and K finished bed, it was time for me to walk. This was not easy, and I'm ashamed that I did weep. BUT, with the new year resolution re Mascara ! What a mess my face was. Mustn't cry too often !!!

They all left, and my scanner which was showing errors all day was my next challenge! I had decided that the bank statement wasn't proof of address, (needed to be certified by Hospice tomorrow), so I thought I would copy a gas bill. Easier said than done. The scanner would NOT copy !!!! RATS !!!! So I thought, trick it! I scanned to computer and then printed. It worked !!!! YEY!!

So I've had my 6:00 GnT at 7:00 !.....Have  done Facebook, Blogged ( here it is) and will be soon heating Pasta Carbonara courtesy of Tesco !!

Bed at 10:00.... Lewis  and new clothes to wear to Hospice tomorrow............ Reflexology to look forward to and to seeing my special mates Jackie and David.

And tomorrow evening.... drinks with J & K and my TV fixed.

What a day !!!

HUG ME, I'VE GOT MND

THE WHEEL-CHAIR/CAR SAGA,, A DIFFICULT AFTERNOON

Today was a busy day.. Rebecca came to move push zimmer into car, as she arrived  early she managed to empty dishwasher , load dishwasher and fold and put away washing. So a great start. Thankyou Rebecca and Iris. 
Without a cleaner ( she's on holiday) this week, it has been difficult.. and also managing without a fridge/freezer.. sadly, I've got behind in tidiness, as to tidy takes so much energy. Help from good friends is  invaluable.


Last evening I went out, and was so grateful for lifts, but when you cant move yourself  in a push wheel-chair, you  can feel quite disadvantaged and quite  vulnerable, you cant move yourself to be sociable.


 I seem to get the feeling that others don't know how to approach us, ie the us with MND. But my view on this is, that we,who have MND, and are trying to cope ,....................... please people do give us your support. We are just normal people who have a shit illness!


Anyway all my difficulties  were due to end today.. I was supposed to get wheel chair, then take it on to Brookes Miller at Elland to be measured, to have lock-down fitted. This would have meant that I would be independent and free in so many ways and would collect car on Friday... 


Yes, I would need help to charge chair, and to get me from back to front of home. But I did realise I could get neighbours to give me a lift .......or even ring a taxi to do the move. £3 would be a small price to pay for the freedom I would have...


So after a visit to Misty Morn, to check on paint colours, I drove to Wheelchair services in Halifax. 


We did tests and found that when I reversed the wheels caught the foot rests and scraped my ankles. Realising that if the chair was tilted then this problem was solved. Then on to kerb climbing! Wow how terrifying is this. You have to approach kerb with speed and keep going. if you don't keep up speed then you get stuck! To get off curb you have to approach backwards . Haven't got the vocab to describe this hanging and bumping  in mid air!! Believe me I shall avoid kerbs wherever possible. Heaven help any person who parks in front of a dropped curb from now on ... they will so get the edge of my tongue!! 


Unless you have these challenges to face you simply don't know how hard they are. 
Olympic games , we all deserve gold medals!!


So, with new shiny wheel chair in back of green van, I set off for Elland. Getting used to controls now... feeling good.. freedom is nigh!!


Get to garage dept. Having looked at car and chair, there was much shaking of heads. The lock down will need to be special as the height of the chair is slim, any low lock down will scrape getting into van and also will scrape on any rough surface.. even including door bars between rooms.... so no use... The appropriate lock-down will cost £1000. 
I had been given to understand that whatever lock down I needed would be free from Motability. I believe I have been mislead.


SO... not only do I not have planned freedom this Friday.. a weekend of fun with Lisa, the ability to go Chrissies Baby shower ( which she has planned with a place on mind with ramps and disabled toilets). but also I still can't even  get into doctors, cant go round shops without a pusher...etc etc  .... and at the end this it  could all cost £1000. 


£1000 in other terms would be 60-70 hours of a carer.


Waiting another month could be 1/24 th of my life..  It has been 3 months, .........1/8 th of my life waiting for wheel chair, and  since DLA award  in Jan, (when I could have had a car, but have waited to get the right one), it's been a possible 1/4 of my life...
( these fractions worked out on MNDA expectation of life of 2 years..even if its 3 yrs or longer. it is doubtful that I will manage to drive round, and not need considerable help after 2 years.)


Dramatic these effects....
Most importantly it's the mental effect not being free,the mental effect of having had to wait , patiently, for the wheel chair, and yet to find that I still can't use it...


This is so, so , terrible... much more than frustrating.....you cant imagine. 


I want to use, live my life for as long as I have. 


If I were rich, so many of these problems wouldn't exist... but I'm not.... where is the morality in this.... I've been an honest, diligent worker all my life.  
I don't mean to be greedy, and I do realise that there are many others in need, but get a grip government, this is simply not good enough...


HUG ME, I'VE GOT MND

IN A WHEELCHAIR

Saturday was a busy and somewhat challenging day. I planned to drive my green van to my friends home. When it came time to leave Thorn Place, I realised that I had no-one to see me down the steps! Whilst I can get myself down the steps by myself ,it would take tremendous courage, but I would be prepared to do it... BUT I can't lock the door myself. The angle and height of the lock mean that it is totally impossible for me to do this. I rang neighbours , but no-one was answering. I then thought of shouting to the  children playing in the street, when I saw a friend going down the road... I shouted to her. She,Esther, came an helped and thus I could get away only a bit later than expected.
So I drove to Pecket Well, collected Elsa and we went off to PCX to collect my new computer... I'm writing on it now!! We drove via the bungalow to see if anything was happening... no changes viewable from the outside.(BUT I gather plenty going on inside). On through Midgley, down narrow roads, I was preying that I didn't meet up with any other cars and have to reverse! None met!!
After PCX we had to turn round so chose to go through Dean Clough, where we saw the new Totally Locally cafe/shop. We ventured in. Actually it didn't officially open till yesterday ,but we had a great cup of coffee and a good chat with the people working there. I looks like a wonderful place to have a snack. There is a disabled toilet but the chairs have no arms, so you might need to stay in your wheelchair if you visit... OR get two lovely men to lift you up, as happened to me!!!! YEY!!!!
Anyway that wasn't the reference that I wished to make to the wheelchair title.. It was  this....
We went on to a gathering at The Works in Sowerby Bridge, I was wheeled in. And that's it, I was wheeled in! I couldn't choose where I sat, therefore couldn't choose with whom I talked. The problem  arose, not because of any lack of kindness, but space also. It just shows how vulnerable you are/ can feel when you are not under your own power.
I simply can't wait to have my own powered chair. I will then be independent , and providing there is sufficient space will be able to move around, interact and be "normal", just like you all might do.


HUG ME,I'VE 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

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!

BAKING!

Today has been slow for me... Didn't sleep at all well last night. BUT I had to bake today, Freeze cakes ready to ice next Sat... for MND Fundraiser on Sun.


My legs are sooo weak today. I tried being in wheel chair... too low. I tried using perching chair, inflexible and too high, I tried resting against the Zimmer.... and found...... the most efficient, yet tiring was leaning and lurching against work surfaces! 
So 5 sponge cakes made. 4 for Sun. The fifth is in the bin. I baked it and it really looked weird... it was then that I found the other two eggs that should have been used !!! OK 80% I can live with.... but it does grieve me that I have had to chuck out good ingredients...


So a song to end... the link being "So High I can't Get Over It"   ie the work surface from a wheelchair!! Never mind Just Rock My Soul  !

HUG ME, I'VE GOT MND

WELL YOU WOULDN'T EXPECT ME TO, WOULD YOU?

You didn't really expect me to Blog yesterday, did you?

I had a day soooooo full! Chrissie and Andy were here. They shifted furniture with Rach, to allow me room to use my new wheel chair. (I've been practising my hand brake turns, getting good!!!). We visited the bungalow, and they gave it their seal of approval. Liz joined us so most of the important people in my life have now visited, and given approval!

BUT (after super lunch at The Olive Branch, Hebden Bridge)... it was time to go to Gallery and set up bar, nibbles etc for launch party of a-MAY-zing.

 And what a night! It truly was amazing. So many people came. Thankyou all for your support. I sold a number of paintings and loads of bags... have just done a re-order a for the MND Fundraiser which takes place next Sunday, May 13th.

There is so much I could write about yesterday, I felt such pride in my achievement, but having drunk very good wine till the early hours, quite frankly, I'm exhausted.

So don't forget:.................

HUG ME, I'VE GOT MND

RUSSIA ROCKS!

Looking at the stats for today I see that people in Russia are looking at my Blog in equal numbers to UK. I wonder why?... do get in touch, leave a message if you are from Russia... or anywhere... I do wonder if there is a prevalence of MND in Russia?  Do tell me.

I have had a busy day. Sorting cars (yet again!) and getting nowhere, (yet again!)..Christine and Ros came to visit. We had a cuppa , lots of chat, and they did a few jobs which so helped. Thankyou. Scott came and did a risk assessment re arrival of "rise and recline" chair (!), and men came to do handrail from garden... but left as it was raining!! So chair and  handrail should come next week... watch this space!
Christine, with whom I'm going to London next week, sorted out two bits of important help.
Firstly I had thought I had to catch train from Hebden Bridge as there are steps to platform to go to Leeds from Todmorden... apparently this is recognised and they will provide a free taxi to the train , Hebden Bridge, from Tod. WOW! How helpful, and very useful information. She also has arranged with Age UK to borrow a wheelchair for the day. This will help as my legs are so weak and I might not even be able to get from platform to Taxi in London. Christine is happy to push me. Not an easy decision for me, but necessary , however. It is hard to give in to these changes but I realise that I must, have to.
The reason for the visit to London is to go to The National Portrait Gallery, to see the Lucian Freud Exhibition. Now much more confident and soooooooooo looking forward to this day, May 26th.

But , the best news today was that Chrissie had her 20 wk scan, and all is well the baby. YEY!! YEY!! YEY!!!

HUG ME, I'VE GOT MND

ACCOLADE!

Today I went to have my "Driving Test", in an indoor wheelchair. Apparently I'm a natural... What an accolade!!!  But it's the best I've got today. So Thankyou Peter ( who talks about rock music) and Rose,(who took the photo) and helped me with my driving!!

Baby You Can Drive My Car!

HUG ME, I'VE GOT MND