PLANS ... TO MAKE OR NOT TO MAKE ?

A real problem this. 

In some ways I have to plan for the future.... ie whilst I'm really at the top of my fitness to do it...

For example. I've planned to do an exhibition next October. The reason I did this was to be able to show the progress of my work as an artist with MND. That's it quite simply....

But planning for Christmas seems rather less important, I cant get my head around it. And yet for others I seem to think I should.

Christmas has always been a difficult time for me... well for the last 31 yrs, as my baby Eleanor Rose died then. My waters broke on Christmas day. I twinged for hours and eventually went into Mill Road hospital, Cambridge  on Boxing day. As with all my deliveries,  I needed a drip eventually  and baby Eleanor was born on on Dec 27th. Eleanor had spina bifida and hydrocephaly. Scans showed that she had such multiple damage that she would have no quality of life. Eleanor was sedated so that eventually she died. Thus  on Jan 6th she did die. 

So you may see how Christmas is difficult for me....

BUT... thus might be my last Christmas, or at least my last Christmas of eating a Christmas dinner with friends/family.

What if I'm asked what presents I might like... the ones I want probably aren't achievable... I would like to go to a sunny place, really I want to go to the island I lived on in the Bahamas,... or even Barcelona... I would like to go to New York.. I would like a car that works and gives me freedom to go out as and when I want.. I would like a massage everyday on my feet and neck, I would like someone to cook breakfast or dinner each day so at least I know I have one good protein meal, I would like to be able to go places without taking a toilet seat, ( disabled toilets aren't high enough to get off,), I would like to be spending time with my girls and for them to be understanding of my condition and thus valuing the time they can spend with me...... all ratherdifficult to achieve.....

So choices... do I let myself be sedated at the end... do I plan a Birthday party.. its all too difficult... I cant plan much.  Since Meggie died ,I'm just existing day to day with MND... Don't know how to respond to my life, but one day at a time is by far the easiest way.. the future is to bleak to plan for... AND YET I know I will fight this, I will continue for as long as I can communicate.. 


HUG ME, I'VE GOT MND

YOU SIMPLY WOULDN'T BELIEVE IT !

Sorry but the car saga continues... 

*Warning I use a few swear words today!*

But first a catch-up on the last 36hrs.. Yesterday (Wed)was Ok in the morning.. Laura here, then Karen (with chips, YEY!!) and walking. These dear people kept me bright... but I was exhausted by even a short walk, and thus went to bed for 3 hrs... Got up and needed to eat, but too tired even to heat up home-made soup... had a few crackers and a tin of olives with garlic... ( and no, I'm not pregnant!!).... 

Watched Tv, went to bed.

Alarm set for 7:55 this morning. Rang doctors for appointment. My call got through at 8:04... no appointments left with Dr Suki... ??? !!!!  WHY????

Got up, ate cereal, showered , put washing in... 10:15  and I'm shattered

(Possibly too much info!!! BUT...Could do with going commando... knickers really hard to pull up.. you think about it, you need two hands, and to be standing, my balance requires three points on... so I say a not fall down now prayer as I pull them on!!!)

10:30, Michaela arrives... we talked for an hour. One of our subjects, My hands not good, so going to try hand splints... may help with support. (Sod it, moving on this B MND!!!)

Did emails... chased up M&S order, RATS, had clicked old address and parcel had been tried to be delivered there... another issue.. Dear Laura will help.. Thankyou.

Heated meal planned for last evening. Watched news, was tempted to watch Doctors... But no... thought I would record and watch after trip to Tod... a treat to look forward to.


Got coat on, not easy...
Got into van. Didn't start. Tried again.. no, still didn't start... lots of beeping...Got out. Closed door... well I tried to, but only the ramp closed. 

Car left beeping happily to itself with the top door open... 

OH! forgot to say I was going to Tod health centre for a blood test. Need liver function doing prior to seeing neurologist on Nov 5th. Had tried to get District nurse to come out, but as I'm still registered with Tod she won't/ can't... tried to register with Hebden Bridge on phone... have to go in for form... Cant get there because of car!!!! RATS !!!!

So called RAC. 

Dear RAC man arrived. He found battery flat.. and not of my doing. I hadn't left anything on, (though with 9 buttons to master it might have just  slipped through the net! )... but definitely not my fault. 

My confidence is soooo low re car I feel everything is my fault.. But no, not me to blame.

APPARENTLY... diesel cars like mine should have a 540 amp battery.. petrol have 250amp... guess which was fitted to mine , (a diesel car...) You got it, the sort for a petrol car!!!

This apart, with so much electronic equipment, ie door opening, etc a high voltage battery is essential, even if it hadn't been necessary on a basic vehicle...

RAC man checked.. theoretically as the battery was OK, just run down, he shouldn't have been able to exchange it... BUT he got permission to do so... another example of how this B car is not fit for purpose...  and of how amazingly wonderful the RAC are.

So tomorrow, I have to take more bravery pills, and drive to Tod... blood test still important and date for it getting rather urgent... so I'll have to do it... 

This car meant I would have spontaneity in my life, freedom... 

It sooo hasnt worked out like that. It has caused me so, so much stress. Thankfully Elsa came this evening and cooked a wonderful stir-fry. So I ate. I know I would have been to stressed/weak to have fed myself otherwise. I feel so much better for proper food.

But tomorrow, a letter will be written... having MND is my lot, and is shit, BUT I really don't need this shit re the car. It has costed me , it has caused me immense, I MEAN IMMENSE, stress.... I  simply am not sufficiently eloquent to  put down exactly what it feels like. 

My grief for Meggie, my grief for my life, my sheer anger/frustration re car , my lack of energy, my loss of confidence in driving, my ever more weak hands..... how do I go on ?

At times today I have felt I would like to sleep forever... but then, there have been helpful moments.. Michaela and our talk; Kind moments , Justine bringing me nose jewels; thoughtful moments like Elsa cooking dinner... so that's why I go on... 

Sod the car issue!   ... Im stronger than a horrid bright green Fiat Qubo after all, aren't I? !!!


HUG ME, IV'E GOT MND

CATCH UP ... THEN ON TO PAINT.... OK?

So, it's Tuesday, Overgate Hospice day. 

Since I last wrote, I've been feeling really unwell. Its grief. Real Grief , for my dearest Meggie. real pain... its unimaginable how hard this has hit me. 

One blessing is that she went first and doesn't have to cope with the loss of me.

So today, Overgate Hospice.  Teena very kindly as always, ie when I told her about Meggie. 

Jenny (art volunteer) came along and we talked about brushes.. ( sable, squirrel, synthetic, mixed.. maybe even hedgehog ! ! !  I don't know.. after feeling 20+ brushes,  you sort of loose the will to live! ! ) 

Then we went on to papers.... the same... 

did we paint ?... No...   !!! 

(I don't want to know all the infinitesimal theory... just basic info to have a go at water painting... BUT I don't want to upset Jenny... she is so kindly and well meaning... a challenge for me once again.. 
who comes first ?
.. me and my needs ?
... or politeness ?   (my natural stance) 



A challenge,
 in many situations................ actually.)

******************************************************************************************************

After lunch I saw Rebecca, the palliative care consultant. We talked for well over an hour. She is so kindly. and was an active listener.... I have a booklet to read , think about,           End of Life Care. 

I now understand that I can be sedated at the end.. 

I can say that I don't want to be resuscitated..,  BUT , the law at the moment might mean that I would have to be.. but  as it's now on my record, ie  that I have expressed a wish not be resuscitated, it will have some power... but until I am worse, the the law says I must be ...  though this note will be some protection.

Lots to think about. 


******************************************************************************************************

Sorry but this is probably rather garbled... but my mind is not yet sorted on my wishes yet. 

There are mechanical helps which will sort out choke reflexes... a big fear for people with MND. A Tracheotomy will help if its placed sooner rather than later..........

There is so much more to think about, to discuss with family and friends... 

I have to leave it here...so so much on my mind.


BUT , two  good things that came out of this session: my need for touch ( hence HUG ME   etc...) and also Rebecca assessed my needs as complex and highly necessary ...... and so is arranging help from Social services and from the person who does massage, reflexology etc...


So after this info... Im off to paint now... when I paint I haven't got MND.. I'm in another world... and sooooo glad to be there, even if what I produce isn't of the highest standards.. it still soooooooo helps  me to loose myself in this way

HUG ME, I'VE GOT MND

MR KIPLING CAKES SYNDROME....

One of my family jokes is that, people who don't like strong curry, always order Chicken Korma... this is  known as Chicken Korma syndrome...

So what is Mr Kipling Cake Syndrome... actually far more deadly !

My Mum went down in health whist she lived alone, prior to her move to a residential home. I realised she was eating less and less.. and took home-cooked frozen meals  to her every Sunday when I travelled north to see her. Having looked in the freezer and fridge, I knew she was eating less and less. I realised the easy option had become a cup of tea with a Mr Kipling Cake.

Mums health went down and down... Eventually she told me she wished to move into a residential home. She moved into Waterside, Tod... AND within a week of good balanced meals became the bright active star that he had formerly been..... amazing what a balanced diet can do  !!

So what has this to do with me?

For 5 days whilst Meggie was ill and I was soo soo anxious I ate food that would fill me,  eg toast, and crisps.. and coffee... So last Saturday when I had Pizza and salad with The Palmers I nearly fainted...

I rested...  Realising I needed  a wake-up call !!!!

I realised that diet was so important  and on Sunday and the days since I have concentrated on making sure I have had loads of protein... mainly chicken and fish...

OK , Im still soo soo sad... so so in pain over the loss of my beloved Meggie....

BUT I know now that with a proper diet I will be more able to cope...

No Mr Kipling Cake syndrome for me !!

HUG ME, I'VE GOT MND

LACK OF SLEEP WITH STRESS = ?

I haven't slept since Monday night when Meggie started to be very unwell.

My dear (ex) , neighbours , Rebecca, Tom and Iris brought round Pizza for dinner tonight.. I had  tried to make a salad. But the chopping was exhausting me. Ginny arrived whilst I was preparing it and took over.. Thankyou...  and for the flowers...

Sod it!!!!    Even making a salad was shattering. I knew I needed to eat, have had only carbs:... toast, bread and butter, some soup since Mon...  easy stuff, but not good for a diabetic with MND....

So we sat down to eat. I had a few bits of Pizza and started to feel odd.

I knew I had to lie down.

Soooooo sorry Palmers..

I went to bed, they sorted the kitchen whilst I slept till 10 ish . I sent txt to say I was going to get into PJ's and get to bed....

... but as you can see, Im not in bed, Im here... the exhaustion diminished for a while, I find I can't get to bed, feel so desolate... the pain and grief I feel after Meggies Death is unbelievably hard to cope with.

My friends have been so supportive, nearly 30 Facebook messages, many txts, phone calls, and visits... I couldn't manage without your dear kind messages and your support..........

But at at the end, when I do go to bed, I'm alone... there is no Meggie on my bed, there is no Meggie to talk to, there is no Meggie wittering for her tuna, there is not Meggie nudging me when she needs more scratches on her head,............ there is no Meggie.


HUG ME , I'VE GOT MND

COPY OF EMAIL SENT TO HALIFAX RSPCA

About 13yrs ago, I adopted Meggie from you. She had been abandoned with her kittens. The kittens were re-homed very quickly but Meggie was in such a bad state that you had to care for her for quite sometime, until she was fit enough to be re-homed.

It was December 30th when I came along to your branch and saw Meggie . She was my first ever cat. Meggie came to my home on New years eve, returning a week later to be neutered.

Meggie has been a loyal, loving companion and I have loved and cared for her every day... even when she brought in all the mice!!!!

Three days ago Meggie stopped eating. Her always glossy coat, went dull. She walked very slowly. I had made an appointment to see the vet yesterday, but true to the independent cat spirit, she went awol! How she managed to not be found, I have no idea!

I feared then that she might have gone away to die, but hoped I was wrong.

Meggie returned mid evening. She slept on a pillow on the spare bed all night, but managed to get down to use the litter tray... a lady till the end.

This morning,with a heavy heart,we went to the vets. Meggie was found to have a growth, and the vet advised that the kindest thing to do, considering her age, would be to have her put to sleep.

I kissed her head, then stroked her and told her how much I loved her whilst the injection sent her to sleep.She looked into my eyes till the very end.

I can not begin to tell you how much joy Meggie has brought into my life.

I'm now terminally ill with Motor Neurone Disease, so another pet would be out of the question as it would be disruptive and thus I feel unkind to any animal, and would therefore be a selfish act on my part.

But what I need to say to you, via this email is:  

Thankyou  RSPCA, Meggie has brought such joy into my life. she was my little companion and so, so loving. It's hard to imagine tomorrow without her. 

HUG ME, I'VE GOT MND

CAN'T CONCENTRATE

This will be a short Blog tonight... as I simply can't concentrate...

My beloved Meggie is unwell. She hasn't eaten for over 48 hrs now and is looking raggy, walking slowly and obviously not right. Her haunches are diminished and her belly rounded.

I keep hoping perhaps she is just constipated.

I rang the vets this morning ( as I had a lift to there, organised) ,but s/he was just about to operate... so I got an appointment at 3:30... But at 3:00 when Barry came to take us to see vet she was missing. I had been certain that she was by the chair in my studio. No-where could she be found....

Eventually at 7:00  Meggie came in, rather wet. She wanted water, but no food... and had difficulty trying to get near bowl. Eventually she managed.

I have closed the utility room door and put out a litter tray. Barry will arrive at 10:00... hopefully I can get an appointment... I'll wake early to make sure....

HUG ME, I'VE GOT MND

GARAGE SORTING.. AND OTHER BITS

There truly is nothing so good for the soul as de-cluttering! 

This morning Barry and Laura sorted things in my garage, under my direction. I now have a number of items for Smart Move, and hope that this furniture will help some formerly homeless person to settle into a new house or flat. I await a call from Ken, who will collect and then distribute.

Its a visit to Tod day. I have to go into the Bank to change my address, though why you can't do this over the phone or on the web beats me! So after this foray, and to reward my bravery for driving, I shall buy myself some flowers... I have a number of plants in the house, but the flowers have all gone over.

Tonight the Christines are coming for drinks and nibbles.... Both artist friends, so we will have loads to talk over. Looking forward to this.

Last evening Tony came round and we had our usual happy time...I'm so happy to know that even on the windy tops , people still come to visit and share time with me.
 
                ******************************************************************

Oh dear, wrote this earlier. The Christine's aren't here. Milly, Christine's dear doggie, is very very poorly. Understandably Christine won't leave her, probably Milly will go to doggie heaven sooner rather than later.

********************************************************************************

Pets are amazing. You become so attached. Pets are utterly dependant on their owners for the whole of their lives.

My dear Meggie doesn't seem we'll. she hasn't eaten for 36 hrs... A trip to the vets is near.

For all of us with pets , we  only know how closet you  can become....

Lets hope Milly and Meggie both live a long life... Dear dear loyal pets .


HUG ME , I'VE GOT MND

DEPRESSION

I know I have MND, but sometimes it's forgotten that I have clinical depression too. Not just depression that is caused by MND, but depression for (at least),  the last 30yrs of my life.

This morning was  black/ bleak . 

I know that I should be taking 3 antidepressants per day, but have often recently, taken two or sometimes even one. 

I take an MAOI.. the effective lowest dose is one per two days, my prescribed dosage is three per day... and necessary. The reason I haven't taken the full dosage is that, I have to take each pill with food... and my eating has been erratic.

With a fall in my my mood, I realised that today I must get back on course, re medication.

Actually, medication is a real problem. I take 8 pills each morn and 7 at night. Sometimes I feel too tired to push pills out of their foil packs... maybe I need help... perhaps someone to do a weekly pill-holder.. ?   ( I feel this could be like the elderly infirm... OK I'm not elderly ( in my mind) but actually I have to accept that I do lack  the co-ordination to push pills from packs,ie  without a lot of effort.) 

So I woke this morn, felt v v snugly and safe under duvet. I knew I simply couldn't go to Overgate Hospice, (or anywhere else for that matter), today. I thought....... Whose life is this... mine ?  .. or mine as a person who doesn't want to disrupt /rock boats, (as I have done all my life  ?).

I decided I needed to take charge. I didn't want to go out, I didn't feel safe going out, ......therefore I would stay safe,.....stay at home..... and so I did!

I painted,then showered and talked to my OT, who came at 4:00.

I talked about how I felt... deeply black!...... about where I felt safe... about how cruel MND is....

....my arms/hands are strong, (briefly), but then the fatigue.... I know they are weakening.....


HUG ME , I'VE GOT MND

ENDING WITH ARTICHOKES

I've had a lovely weekend, despite the fact that Liza and family were to have been here........ Illness prevented.

On Saturday I mooched about, and then showered , dressed and put make up on (yes really!!), ready for an evening at the Todmorden Hippodrome to see Calendar Girls. Elsa picked me up and off we set. We were met by friends Maria, Barry and Liz. My sadness was that Liza was missing.

The performance was great. I particularly was touched by the scene when the letters from other people with leukaemia were received. My only criticism would be that the music didn't fade, it simply stopped. For some pieces this was mid-word and jarred on me. But this apart, the production and performances were fantastic. ( I did the sketches which the photographer shows to the women, to show that nudes need not be rude! ). 

I met lots of friends and got lots of hugs. It's strange being down so low though. But Barry did kneel down at one point to talk. I was very touched and gratified for this action. 

Afterwards we all went  to my house,  shared some wine and chatted.

This morn I realised I didn't need to get up and had decided to stay in bed as long as I wanted ! I was a little surprised when I woke at7:15 ... Rats !!! I had a a cuppa then back to bed... but noted the sunrise. Mist covered all but the few houses in front of mine, allowing only a thin distant strip of hills with just Stoodley Pike showing. 

I slept till noon.

I then spent most of the day sorting stuff.. it takes ages.. and despite being in painting clothes, didn't touch the brushes!

What I did do, was sort portrait pics of my grandchildren, to put in frame, and also scanned pics of the girls in my family to add to another frame.

 My mum.. I don't know when this was taken , probably pre 1949... but isn't she beautiful.

 Me in 1967.. a Christmas pic for my parents in my first year at college in Leicester.

Liza with Chrissie, in my parents garden. They had such fun playing in this large garden and orchard.. I took and developed this pic... about 1986.

Looking back was a sad moment in my day , but on balance a good weekend.


So.... ending with Artichokes.
Had a fav , simple meal tonight, pasta with artichokes... ready in 10 mins !


HUG ME, I'VE GOT MND

WHAT A WOMAN WILL DO FOR VANITY !

Today, having taken my Bravery pills, I set off, by myself, in my green van. Destination, Tod and the Eden Spa Beauty Studio... to have my nails done.

I was rather frightened, after all this was my first alone drive. All went very well till just outside the Co-op in Hebden Bridge where a woman ran out of the shop and straight onto the Pedestrian crossing. She stopped, (thank god), I couldn't ... even though I was only doing 20mph. She shook her fist at me, and I mentally swore at her. 

Imagine, if I had hit her ! My confidence would have been lost forever, ie re driving. 

I got to Lidl car park, didst go to disabled area ,as I wanted to be well out of the way when I opened the back of the van. All went well and I crossed the road and straight into Salon Eden. Rebecca opened the door,  made her usual mean cup of tea, and then did my nails with a lovely pink , covered with a glitter layer.

I realised that as I was on my way home, I would be arriving at Misty Morn at school out time.. so I decided to go on up the Keighley Road, park up, look at the view, and wait till 3:30.. This I did.

Having discussed with the driving instructor the best way to get into my drive, it was decided that I would be best off going to the Bus turning circle, turn, and approach MM driveway , turning right and also starting on the correct side of the road.

So down to the turning circle I went. BUT, Rats, there was a bus parked there!!! So I continued up hill ( calmly  !!!!),  and started to turn on the bend in the road where there is a driveway. 

The gods were against me, as, at that moment, the home owner returned wanting to get up his drive. I tried to do a quick turn. Mistake. Ended up straddled across the road as I hadn't turned sufficiently. So reverse. By now home owner parked waiting, two car up road waiting and one on the down stretch... Oh, and lady with dog, popped in front of me too. Poor woman, what a lucky escape she had!!! 

But telling myself to keep calm, I extricated myself, gave a sunny "thankyou" wave to the world and proceeded to park outside MM. I got up the drive, really well.

I really am proud of myself, (and as for those Bravery Pills........  well they really do work)... it's all in the mind, this keeping positive. YEY!!!!

HUG ME,I'VE GOT MND.

SWALLOWING

On Wednesday I had a meeting with Amanda, a speech therapist. I have been worried for some weeks that the muscles in my neck were getting weak, my head feels heavy and I feel like I have a golf ball in my throat.

Amanda watched me eat and confirmed that I'm chewing well and swallowing well. I also talk in long sentences, a good indicator of no problems.

After much discussion we realised that my uncomfortable, nay frightening, feelings were as a result of stress , (that B car,  again!!), and the fact that I can't sit supported, (the B chair, again!). 

So , good news really, but still a bit frightening. 

The car issue will be solved as I get my confidence back, and the seating /support issue will be sorted when the chair arrives... 

Simple really.

HUG ME, I'VE GOT MND 

SECOND VISIT TO OVERGATE HOSPICE

Up at 7:30... need two hours to eat b.fast and shower. Ready right on the dot of 9:30. 
I saw the transport go past twice.. they couldn't find house! Eventually set off at 9:45.

Bright sunny day. Blinds closed at Hospice. Apparently sun gets in the eyes of people opposite the window and is too warm for those by the window... Oh well! Seems a shame not to enjoy the sun... but that's me!!

Asked re menu.. I could see Cottage Pie.. (I hate mince, especially institutional mince). So opted for Jacket pot, tuna mayo and salad.

I then started my interview with Teena... a "getting to know you time". After a short while Jenny arrived. 
Jenny is a volunteer artist who was happy to share water colour techniques. We started with primary colours...... I slipped in I had an HND in Fine Art... we went on to dilution.... Then at 11:55 the table needed to be laid for lunch. But I hadn't touched the paint ! Resolved to get my watercolours out and have a go to show next week.

Escape for Nicotine.... 

Noon, lunch.  Very good, simple, filling!

More interview... 
2:00  Bus arrives to bring me back to Misty Morn.

A short sit, followed by a frenzied lay of table ( 3hrs!!), ready for book group at 8:00.

A great evening, discussing books recently read,  which we would recommend.

Well,I haven't read since diagnosis... can't concentrate... so I did a Victoria Wood monologue, "Giving Notes"... based on an am-dram Hamlet... It went down well, I feel.

All hands to the pump and the house was cleared!!! 

Bed, Shattered!!!

HUG ME, I'VE GOT MND.

BEING BRAVE IN THE GREEN VAN!!!

I realised that I needed to get in the van and drive. 

I got in. Turned engine on. Switched special switches that allow the brake and hand systems to activate.

Then..... Do I put in gear or take off hand-brake... I pondered for several minutes.... WHEN.... Laura arrived, early. Bless her, saved me from having to decide.!

1:30 walking with K and C.  

Mid afternoon Elsa rang did I need any shopping? Response from me, No thanks, but have you half an hour to just be with me whilst I try to drive up road....

Elsa had better idea, me to drive her to Tescos (Hx),, No., too far. Co-op, No too small a car park to use van exit.. Morrisions? Yes OK. Arranged to meet at 6:00.

6:05 and Elsa rang. Would be with me in 5mins. 

6:12 and E arrived. She walked in asking if I was ill. No merely terrified. 

Well I did it. Parked. Went round supermarket. Discovered that many things I wanted were out of my reach! But people kind and helpful.

Into car park. Operate ramp when no traffic around... Didn't imagine man parked opposite would just back out.

Pressed all buttons imaginable and ramp stopped! 

Had to go into middle of roadway to line up to get up ramp. Realised I was invisible from the side (it was dark)... Need reflectors like cyclists wear.

Home. With trepidation managed driveway.

Felt quite sick with the end of the adrenaline.

HUG ME, I'VE GOT MND

HAPPY/SAD

My friend Christine visited with her husband Richard, today. They were on their way back from Scarborough where Laura Doddington is in the Ayckbourn play. They really enjoyed the plays, especially the new on , "Surprises".

It was so lovely to see her. 
We were at college in the same Drama group and Ed group, and both ended up in Cambridge , Mill Road, having babies at the same time. 

They brought a lovely selection of foods for lunch with some Prosecco... so no practise drive today!!!

Lovely Tom popped in with the remainder of the Thorn Place contents... the spare room is now, once again, full.
Laura comes tomorrow, so I know what we will be doing!!!!

So why the title ? 
Well, I was so happy to see Chris, I've known her, after all, for 45yrs..   OK,  on and off contact, but always  at important moments of our lives. So when she said she would visit again, I was so happy, she's 4 hrs away, a long drive,... but sad that I cant visit her... and it struck me that one day there will be the time when we will hug and say goodbye for the very last time....

... and this will inevitably happen with all my dear friends...........

Should I publish this? 

Well I think so, it is a diary of how I am feeling, how I am coping. 

Sorry:   But though I rant re cars etc, and witter on about unpacking... sometimes, just sometimes... it really gets you what having MND means. 

HUG ME, I'VE GOT MND

LOOKING FORWARDS TO TOMORROW, SUNDAY

Christine and Richard are visiting tomorrow.. Bringing lunch, hugs and lots of chat!

Also, Glasto tickets on sale. For once I'm not going on-line.. but providing suitable accommodation can be sourced, I will be going.. 

So that's Sunday planned. If I'm not too tired tomorrow I'll tell you all about it.

HUG ME, I'VE GOT MND

CAR DAY.. STAR DAY ????

Good, bad,good,good...etc......

Good , Dennis  (instructor)  arrived and I tried to get in van.. 37 days since I last got in, and it was sooo tricky!! Back and forward, getting stuck on the side, stuck on the seat belt locator... eventually did it!! Yey!! Drove off. The new brake system works !!!.. a matter of practice.

Got back, tried to relocate ramp.. zapper didn't work!!! Dennis had to do it from the inside.

I called RAC. Wonderfully kind.. they thought I may be trapped inside. !! Man (Paul) arrived within an hour. The battery had gone on the zapper.. he fixed it. I asked if he would put water in wash wipe. ( I had asked garage to do this on three occasions , but they never did!). As well as water, he put in special wash liquid. He the said he would check the oil. It was very very low. He topped it up.

Im certain, this car had never been prepared for a client and I shall be sending a few emails tomorrow... THEY  (the garage, Brookes Miller, Elland) ARE UNBELIEVABLE  COMPLETELY INEPT, THOUGHTLESS, UNPROFESSIONAL, SHOULD BE ASHAMED....  etc..... !!!!!

After RAC left I did some clearing in kitchen. Managed to drop Meggies water then some grapes.. then ran over the lot in w. chair, trying to get to hand picker to pick the things up!!! What a mess!!!

So next  , a positive.... I tried to get into van . Fine, except van now parked up drive so I'm approaching ramp up hill... my front wheels left this earth.. I was balanced on the two back wheels!!!!  But I did get it to lock down. Going backwrds out I skewed to the side, removing the battery cover from the chair.

In order to get it on I had to put chair in front of rise and recline chair to reach approproate place.. walking required, rather than just standing.... but I managed!!!

HUG ME, I'VE GOT MND

THE DAY AFTER...

Friday, thank goodness, didn't start till lunchtime.

The Green van was returned and I was asked if I would like to drive the driver back to Elland... I declined!!! (driving lesson booked for Sat. )... I was given a run down of the adjustments.. and they seem to make sense... watch this space...

At 3:00 Sue and Kendrick arrived and we put up some of my paintings... Sue sorted a few bits and bobs and also brought a lovely chicken dinner. Thankyou.

4:30 and Michaela, physio came and gave my muscles a really good stretch. She has been busy with lots of meetings so I haven't been stretched for nearly 2 weeks. It so helps relieving tension. 

At 6:15 Helen and Steve came..Bringing a lovely bunch of Roses, WOW!!!   ...... we got through  over a bottle of wine!! Steve set up my new uplighter, (pink) yey!! what a super light. He also put stuff in the garage... its getting v v crowded!! 

Bed.. anxious re car tomorrow.. 


HUG ME, I'VE GOT MND

SWISH... FOR MND

On Thursday last I went to Warwick with my friend Jane. Eliza was organising a SWISH... a sort of up market jumble sale/ clothes swap. 
This was the first ever event that Liza had arranged, she did so well raising a total of £781 for MND. Eliza was really helped by a friend met at playgroup, Fiona. Having met Fiona I can confirm that she is a real star!!!

Jane collected me at 12:30 , we loaded transfer chair, raffle prises and toilet seat... and off we set. 

There is a Tesco's near Lizas so we went there to buy some flowers and for me to use the disabled toilet, plus my seat!!!

Off to Lizas home. I had to go in through the back door as two steps at front. This was difficult , but thanks to Chris, neighbour, I got to door. Then had to stand and settle back into chair from doorway. Not easy. We got in and I was so so so happy to see my grandchildren , Sweetie Pie and Matteo... AND to meet Stomp the dog. Stomp seemed to be anxious about the chair and never did settle whilst I was there. Such a shame as I love dogs and he is soo soo pretty ! I just wanted to cud le him.

We ate.. then....Getting out was really difficult... enough said....... Set off for the Church hall. Steps !!! .... But a ramp.... But the steps were at right angles so a difficult entry, but Jane and Liza helped and managed.  Yey!! (You need to be strong to be a daughter or a friend of someone with MND).

Whilst the stalls were being set up, I was in one place till Sweetie Pie, managed to push me round. How lovely was this... but sad, a nearly five year old pushing me.... but that's the way it is.. Bless you Caterina. I do hope this will be a memory of us together and how lovely and helpful you are... AND in your new school uniform... you really are a Sweetie Pie and I do love you. ....This memory could make me cry...

Shortly after all this , Chrissie Andy and new baby Oli arrived. YEY!!!  Oli was 27 days old.  I had last seen him on his  day 2. Wow ,what a snuggled little one he was. Bless him he stayed asleep throughout all the hustle and bustle... He got so many admiring views... I think we should have charge £5 a peek... would have made thousands!!!

What was so great about all this was that all my family were together.. a first, with my new grandson...YEY!!!!

Jane my carer for the day is an actor in Emmerdale . It was agreed that she was coming as my friend, and not as the celebrity she is. When the MND local rep came to take a pic, Jane decided, that if it would help ,she would be in pics. I was happy with her decision either way. (I see Jane as a friend , not for the celebrity she brings with her) .... anyway, the local rep must be one of the very few people on the planet who hasn't ever watched Emmerdale.!! So we had a bizarre conversation.. then, she assumed I lived in Warwick...I don't ,  but all people of Warwick , I do hope you read this. Your rep is kindly and very much has your interests at heart. 

At 8:30 we left. I was shattered.

We got home at midnight. I had a catch up on nicotine and a quiet G&T and then bed..... I slept!!

Then......

The next morning Eliza and I talked ,and she told me that after I left, the raffle was drawn . She had saved my raffle prize of a painting, as the final prize. She had given a little speech about MND and had said that she hoped the picture would go to a good home.  Apparently, at the very end of the event, the lady who won it said to Liza , Tell your Mum it's gone to a good home... I cried when Liza told me this... I think it was difficult for Liza too..

What a 24 hrs it was.. I'm proud , happy, sad and emotional ... 
Knowing you have MND is really hard . You have to live your life to the full, every minute counts. 
But sometimes, just sometimes, the raw emotion of what illness you have, really hits you. Its then that I really, really , need you my friends and my precious family.. you keep me going... 

you will never ever know how much you all mean to me. Thank you..

HUG ME , I'VE GOT MND

TASTE !!

Weird day, re food.              Thus  title...


I woke with alarm, starving !! and needing something sweet. So had croissants with Nutella for breakfast. 

Stuart came to collect car for it's adaptations. (YEY?) . I once again asked what difference the braking system would make. Once again his response was, that he didn't know, had never fitted this adaptation. I did find out that Motability are being charged £570 for this work!!! I'm not holding my breathe. Confidence that I will have a drivable car, when it's returned on Fri, is very low. 
But ever positive, I'll keep hoping!!!

Laura came to clean. She did a tremendous job, everything sparkles... YEY!! Just what I need and do so like. 

A dear friend, who makes me smile so much, she is so positive and funny,....... brought me some chips at noon. They were perfect ! She did think she might have time to bring them up, so I was somewhat expectant... BUT ... WOW ,,,,what a treat ! Cooked in oil and covered in vinegar!!! A big portion too, and I ate every single one!!!   
So , so YUM!!!!

At 1:30 the nurses came to walk me. I did a full circuit, but was very tired. 
Using my arms all morning had already left me in a quite exhausted state... But I did cope. YEY!!! 
Need to keep this movement going, it will bode well for all the times when I have to stand, eg going to the toilet... ( sorry, but use of toilets are big in my life... well the difficulty in getting off them!!!)

A quite time from 3:00 .... I worked on the Calendar Girls  sketch that needed adjustment.. I wondered why I was finding it so difficult to do, when after an hour, I realised I needed something sweet ........and my glasses!!!!! ( 3 X Cadburys Roses!!) 

Richard ( landlord) came to fix loft ladder, but couldn't. It needs new catch. He was very apologetic, but these things happen.. no prob for me, (unless it falls on my head  !!) .. I've been assured it wont.

But then was hungry. Now not for sweet,  but savoury. I ate a whole 210gm tin of Olives stuffed with anchovies... and if I had had another tin, that would have gone too!! (Now on Tesco list for next week!)

How weird, sweet, savoury,sweet, savoury... and the extremes of each!!!

So now as I write I am awaiting my dinner to be cooked.
Chicken and mushrooms, in a white sauce,  with onions and THREE garlic cloves...
can't wait!!!!
And  for dessert .. a sweet (!) song .

HUG ME, I'VE GOT MND

0oops!!!

I have just sat down to write today's Blog and saw that whilst I had written yesterdays contribution, I hadn't pressed publish!!! Sorry!!!
My only excuse is, that I was very anxious yesterday. My throat felt very tight and I worried all day that my neck muscles were going... But all is well, fine today, it must have been anxiety re Hospice visit.

So, Hospice visit.  

I had decided to go to the day-care at Overgate Hospice, as the received wisdom is that a hospice is the best, (most supportive for family), place to die.

I had to get up at 7:30 in order to shower, dress and have breakfast by 9:30. (Showering and dressing takes at least an hour!!)

Just in time, the ambulance arrived. The driver ,a guy called Tracy, ( is that how you spell a male Tracy??) and the support person Anne. Very pleasant people. It turned out that I had taught Anne's daughter at Siddal.. She  (the daughter), doing well. How lovely it is when your pupils do well.  I allow myself a pat on the back to feel that I have contributed, in some small way, towards that success.
The lift to the ambulance was easy and Tracy and Anne, very caring.

We got to Elland about 10:20. I seemed to be last to arrive. Much to my surprise, I entered a large room with 9 people, all sitting quietly ,round in chairs. I was offered a transfer to an easy chair, but declined, as I would have had to have a hoist to get me out of it... and also I enjoy my freedom to move!

I was very surprised as 3 people couldn't walk, but the ones that could , didn't . After a coffee, I made a move on the group and circulated, chatting to everyone!

The staff circulated too, and were extremely pleasant , helpful, kindly and attentive.

I did make a faux pas, when raffle tickets were being sold. I bought 1, the norm seems to be 2!!! Note to self, remember next week.


Lunch orders were taken, and they dealt very well with my dietary needs, ie no cheese, no yeast extract etc. So, I couldn't have the soup, but the gravy on the Chicken Hot Pot was fine. YEY!!!

After lunch I escaped to the garden for a cigarette.(!) People round me (even when they are quite) exhaust me. So the peace and fresh air ,( tainted with nicotine ! ! !),  for 10mins, was very welcome.

I then had a chat with Teena, (yes, she does spell it that way),  manager. She took me to the "hospital" part. I was quite horrified.
From what I had heard things would be bright and jolly. The paint colour didn't help... a sort of pale mustard colour... reminded me of pub walls when people used to smoke in them,. and it was dark, limited lights on... I didn't understand... But the very difficult thing is : that there are two four bedded wards and 3 single rooms.
When I asked ,if when you were about to die,  did you get a single room, the response was: No not necessarily...
I don't know about you , but, ......I would expect privacy at this time, ie end of life. Maybe if not for me, but for my family....

I need to think about this and investigate further.

HUG ME, I'VE GOT MND

WHITE RABBITS !

Yes it's Oct 1st ! 
Mum always said that the first thing you had to say on the first of every month is, "White Rabbits"... it brings you luck apparently. BUT as I never  remember, I'm not rating this!
In fact,  My first words were, " Morning Meggie, bathroom for me, then tuna for you"!!

Oct 1,  and the day to begin painting. One year exactly to my next big exhibition.. and the opening of my sister Blog, "A Year in My Studio".

10:30 and Paul from Calderdale Transport came to check access and look at my wheelchair, to check they would be able to take me to Overgate Hospice tomorrow. All passed fine. Apparently, for my chair you need strong bands to lock down, ambulances don't carry these..... Why????

11:00 and an interview for research purposes with Melanie , she works on a project at Sheffield , looking into possible links between chemical exposure and MND. This lasted an hour, and is the third piece of research I have contributed to.

12:30 and I called Stuart at Brookes Millor, Elland. BOTH parts are now in for the new braking system for my car. He asked me deliver the car. Didn't seem to get it that I cant drive the car, as it is not safe!!! He said well , you've been driving it haven't you,  and seemed amazed when I said I hadn't  But  why did he think I needed the new brake system, if not for the very reason that  the car is unsafe to drive!! Beats me!!! When I asked how did the brake system work, he responded that he didn't know and had never actually fitted one!!! 
OH Dear!! Im not holding my breath that I will motoring from Friday!!!

1:30 and Karen and Chris arrived. They had stopped for chips on the way and have promised to bring me some on Wednesday. Yey!!!! Brill , thanks!  But their real purpose is to walk me... I did the long circuit with the zimmer..

Chicken stock bubbled away and eventually I made and ate soup at 9:15 !

6:30 and Justine arrived with some mushrooms (requested for my soup) and a lovely bunch of flowers. Very timely, as my lilies had died.  I do love flowers. We looked through the many, many sketches I had done for Calendar Girls. She seemed pleased.


9:00 and Ester visited. She ironed my jeans for tomorrow and did a few other jobs. She brought me a plated meal too. Yum!!!

11:00 and Ester went. I sat quietly, and the next thing I knew it was 1:00 am.. and so to bed....

Hospice visit tomorrow.. anxious.

HUG ME, I'VE GOT MND