An OLD Blog friend

I'm so glad I've found you. Now on my website www.jackyslifeandart.com Lots has happened since I last posted on here. I have found art, I am writing my book with some help and I am living life to the full. I've lost a couple of friends but gained a couple more along the way. I've had a torrid year health wise but seem to be turning a corner. I have a busy year ahead fundraising for St Richard's Hospice who have been excellent. I've had fourteen weeks staying at the In Patient Unit and currently go to day hospice.

Book

Ive made a new friend. An ex colleague from work on FaceBook. We have connected straight away. Anyway he has encouraged me to write the book. Kate also asks about and would like to see it finished. So today I'm doing just that.

Ive downloaded what I have started.  Im going to review the content.

I'm back

It's been over two years but I'm still here living with MND. Lots has happened. The profile of MND has been raised with the ice bucket challenge and the film Theory of Everything.  I went to see the film and I was put firmly in the affective domain.

I finished this blog because it wouldn't load messages for me and I got frustrated.hopefully this will work now.  I have another blog, jackyandellie.wordpress.

I revisited this site because I had a visit from Geoff today and he mentioned this old blog.

Situation normal

The ceiling has been replaced and is drying out. The decorators should come on Monday and that will be a good job jobbed. I have not been blogging mainly because the site keeps on crashing.
There have been no more disasters thankfully.  I have been busy with visitors which has been great.
Ellie had a good couple of nights with Lesley, whilst I was at hospice. I thought Lesley very brave to put up her tree with miss Ellie in residence, her motto is, oh Christmas tree oh Christmas tree, all your ornaments are history.  Every year helping hands send out a poinsettia for Christmas and every year Ellie eats it.  They might not this year with everyone tightening their belts. I've done no Christmas food shopping, so no good coming here for a minced pie just yet. I have ordered a trifle from Marks and Sparks but that's it.
I'm feeling a bit grotty today, tomorrow will be better.

Cheerful earful

Where do I start, everything is going wrong or breaking, microwave, light bulb, extension lead, alarm bell, washing machine, grill door, radiator leak, radiators cold, door wouldn't shut, and so much more.  I have one mother of a mouth ulcer and a runny nose. Other than that I am absolutely fine. My mate sue doesn't have a blood clot in her other leg so that is good news. My mate sue b has been fab trying to make Everything ok again. Mum and dad came today and fixed the extention lead and emptied the drinks cabinet. Slowly but surely with everyone's help I am emptying the lounge ready for the builders. Joy came today my cns, clinical nurse specialist. If a bed is available I can go to hospice whilst the work is done, which in all honesty is a great relief, i can tell you as it will be noisy, dusty amd damp. Ellie is being an absolute delight at the moment. So you see I can be a cheerful earful in the face of adversity!

The day developed into a bad day

Oh dear what a turn of events. Wendy came to visit and said I can hear dripping. We looked around and found a steady drip coming from a bowing ceiling in the living room. . The leak was found to be coming from the airing cupboard. British gas were called and stopped the leak, a loose nut! They served a safety notice on me to get the electrics checked so steve managed to get an electrician to check the wiring. So at the end of the day I have water, heating and lights. Just need a new ceiling and  a carpet clean.
Then my mate, sue needs an operation which will take place on New Year's Eve.
Then I had to tell Mary off.. So all in all a rotten day but I won't let that undo the good that was done at flint house. Tomorrow has to be better.

UTI

Ok so the syringe has permanently gone. Just to muddy the waters I had a UTI but that has now all cleared thankfully. I feel great again and have gained weight at flint house. Sue and I had a terrific week. And I have come home to a fresh clean, newly decorated downstairs. It looks brilliant, all clean and fresh. I have been thoroughly spoilt at flint house, with fresh thick soup and baths most nights. I'm smelling fresher and looking a lot heavier! Cheese supper probably helped, delicious Camembert, Stilton and goats cheese. Everyone commented on how well I looked, which is very encouraging. I can't tell you how much good flint house has done me. I think sue enjoyed herself too. We went to a lovely cafe that did spicy Indian chai served with runny honey and warm milk, delicious. The highlight of the week was Dilf dressing up as a fireman, bless so funny. Glad to be home with Ellie, according to Lesley she was as good as gold with a roll of the eyes!

Syringe driver gone

Well it's been a few hours now and I feel fine! It seems strange as I had got quite attached to my handbag for the driver to go into. Having a shower will be easier though, I was always worried about dropping it or getting it wet.
Ellie has had her inoculations and I had my flu jab, we were both big and brave. Ellie also ate her worming tablet without too much drama.
Mary seems to be enjoying herself and enjoying the fish and chip shop near by even more.
Penny started at her new placement today and I wish her all the best.

Penny's visit

Yesterday Lesley and her mum took me to webbs garden centre. We had a walk around the riverside garden and then went shopping. It was quite busy. I bought Ellie a proper cat bed and she loves it thankfully. It's in my wheelchair where she likes to be. Mary and I forgot about the clocks going back and were awake at seven. Not sure where the extra hour went though!
Penny visited Ellie and I today, it was lovely to see her again. I really miss her. Ellie was spoilt rotten with a big box of ham and a large carton of yoghurt. Penny had made me some pumpkin and it was lovely. She also brought me some masala tea and cardamon sweet treats, spoilt as well. I wish her well in her new placement. Penny brought a DVD for us to watch, just like old times, a good old rom com. So all in all a very good weekend.

Organised

Carpet cleaned, new smart meters fitted, trees felled for winter, garden looking tidy, decorator organised, ellies claws trimmed and I'm packing my clothes today. I woke Mary up at half five this morning. I do hate doing that but sometimes its needs must and this morning was a needs must! I'm breakfasted, medicated and showered all before 9:30. Sue, Mary and I went to Dunelm yesterday where I bought stuff, as always. Mary is going out for an hour whilst my mum and dad are here today. She is meeting the daughter of her previous client. I'm glad she is having a proper break.
My mum and dad came to day hospice on Wednesday. They were made very welcome and I enjoyed showing them what I get up to. Thank you Colleen. I saw dr Becky and alls well for Wednesday for the driver to be removed. I won't miss being stabbed every Monday to change the line.

Took a tumble

Mary fell down the last stair this morning, no harm done thankfully but who's looking after who? It made ellie and i jump as it all went crash bang whollop. Bless her. Sue Ridley up this weekend so we went into town yesterday. I have my new cosy toes, its like a sleeping bag for my legs to keep me warm. I am still feeling so well and looking forward to having the syringe driver taken off me now.  I was a bit apprehensive but I am sure everything will be absolutely fine. I will miss having a laugh with the nurses.

Keep smiling

Mary is lovely and tries so hard. With day to day care we are getting there. I'm well fed, hydrated, clean, medicated and warm. She keeps leaving the peg open but I'm sure she will soon stop doing that because it makes a mess.
The priest came today and gave an ointment and communion to Mary, myself and the district nurse. So we had a church in my bedroom today, very nice.
Fi came today and good to see her, she is so funny telling stories.
The man from the gas is coming to assess the dirty footprints left by the smart meter installer. Hopefully they will send out a man to come and clean it up.
Sue coming this afternoon.

Oh dear

Well Penny did an excellent handover making sure she covered everything. I was very sad to see her go and wish her all the very best.
Mary is very different to Penny. Penny was quick and efficient whereas Mary is very slow and methodical. It is early days and Mary needs to learn the routine. I have had to refuse to drink until she sat down and had her breakfast at eleven o'clock. She has been on the go since 7:30 when I needed a bedpan for an urgent matter. It's been a stressful couple of days. I had a stiff brandy yesterday to steady my nerves. Also I will be coming off the syringe driver once things have settled at home to see how I get on.
Ellie has had mad moments running around the house, looking for Penny no doubt!

Life

'Maybe the extent to which we cling to life is proportional to the loveliness of the life we have, and mine is lovely.  

And if it can be lovely in a world that is full of war and murder and deceit and hatred, how much lovelier in the new creation God promises us. '

A quote sent to me and just resonates with me at the moment.  I have booked a holiday to Aberporth, west Wales for the summer next year. Jill has agreed to come with us as camp cook. If we go great and if not half the fun is in the planning. But the way I'm feeling at the moment there's no reason why we shouldn't be going on our jolly. We can walk into town and there is a cafe there, there is a Tarmac coastal path within walking distance to and sea views from the bungalow.

Today is penny's last day with me as Mary starts at two tomorrow. There is a two day handover period, so penny leaves on Thursday. I'm a little anxious and I guess Mary is too. Mary is Catholic, likes cats, eats anything and appears easy going.

My friends Bob and Jenny are safely back from six weeks in Israel. They had a fantastic time in the Holy land.

The blog site seems to be having a few technical problems at the moment and I can't always update the blog.

It's good news

I like Mary and she will start next week. She will have a two day hand over with Penny. So I have a new carer. I will be sad to see Penny leave and it will be all change. Mary walks with a bit of a limp and talks with a strong Zambia accent. I guessing it will take a little while to get tuned into her accent. She is bubbly and laughs a lot.

Blog fixed

There's been no blog for a while as it had crashed and burned. Today however it seems to have righted itself. Lots has been happening. I have a new carer coming for a visit tomorrow. Her name is Mary and she is a more mature lady of 58 years. She is very experienced and looks a nice motherly type so she has potential. I will let you know after tomorrow's visit. If we like each other she could start on the 9th October, next week!
Penny took me for a walk on Saturday to see margaret, my mother in law. It was lovely to be out in the sun for an hour. I have a new arm rest with a lip to keep my arm on the arm rest and it works perfectly. Top job wheelchair services.
I had to have the syringe driver resited today, gosh it is a bit sharp when the needle goes in but I still wouldn't swap it.
I had three bunnykins, a policeman, a judge and a lawyer, so I have been on eBay with my partner in crime, sue and bought a few more to add to the collection. They are breeding like rabbits as I have sixteen more now. My mum dusts for me on a Friday and she wasn't phased by all the bunnykins on display.

Update

Penny has agreed to stay on until a suitable carer has been found. This is a big relief and I'm very grateful to her for this kind gesture. It takes the pressure off. Penny's leaving do went down very well, steve, julie, jill, Lesley, Josie, penny, sue and I all cosy in the summer house.
I have a new arm rest on my wheelchair which will help with longer wheelchair trips out, now where to go....
I am enjoying a special purchase I made off eBay, four new bunny kin models, arrived today. They go nicely with the ones I already own.

No nora

I heard today that Nora has decided not to come here now after all. She is on a placement and has settled there and wants to stay in Middlesex. So I'm on the hunt for a new carer in quick time. This is not at all ideal. I'm being told not to worry but....I'm sure everything will be fine. I have been given a name of a potential carer but no profile so I know nothing about her. The managers are all in meetings today so no progress. Maybe tomorrow we will have a reply to the email and phone call. I'm not at all hopeful this will be resolved by Sunday when the handover should have taken place.
Penny is in the kitchen making things. I'm chief taster. The lentil soup was delicious and the semolina pudding is very tasty.

Spetchley gardens

Definitely worth a visit. The gravel is hard going in places so I went on the grass. No one seemed to mind to be fair. It was a beautiful sunny day which helped of course. There was an aviary with peacocks, a church and beautiful lake and gardens. I thoroughly enjoyed my day out. The cafe was pretty good as well selling home made fayre. Sue had tomato and basil soup with granary bread, very nice. The coffee was ok. We had a photo competition which sue won with the stag through the wild flowers.  That was Thursday. Friday I had my Christmas present early from mum and dad, an air, wireless printer, which is excellent. I'm guessing you may get a letter with your Christmas card this year now I can print easily. Edith is back from her holiday in Newquay. She had good weather for it.

Scrabble competition

Hospice was fun, Well the results for the big scrabble competition were, a gold to me, silver to nigel and bronze to sue. I want my post box painted gold now! A rerun will occur next month. Colleen found me a handbag for my syringe driver to save throwing it on the floor again. It's very jazzy and neat. I met a new guy who also has MND.
Wendy came with Skye and we had a lovely time watching the Olympic parade on the tv. Joyce and chris came showing photos of their latest trips to France and Spain. So I have been blessed with visitors. Sue from Bedford came at the weekend and we made the most of the sunshine going to vines park for a picnic and ice cream on Saturday and in the shed for r and r on Sunday. Penny went home for the day so sue was in charge. Penny is slowly moving out ready for the handover on the 25th to Nora.