Hello part 2

Here's my chair and computer. I spend quite a bit of time here. Very important. So grateful for the internet and face book. Have been meeting some amazing, just amazing people on the Parents and Carers group. Hope I can give a little bit of encouragement to them, I would hate anyone to have to go through the process of your kids getting sick let alone have to go through it with so little help and support and zero knowledge. Very grateful for Samia who stuck up for us, and Liz and Jayne who stuck by us. xx My Mum writes to us regularly and my Dad emails. Wish I could get over to see them more often xx

This is my desk. Have had a wonderful time doing a bit of embroidery while I was in remission this spring, summer. It seems to be over, but I made the most of it while it was here. It lasted just long enough till we got new home helps who can walk the dogs every day and their much better timetable means they can do us a hot lunch every day. Still things to iron out but that's life. So so grateful to have funding for 3 hours a day. Wish they got paid better :-(

Ruth and Joanna are so good to be around. We see each other to eat together perhaps once a week - eating and talking are too tiring to do both at once and anyway who wants to have to sit at table with their mum every day !
 
Here's Joanna with one of the dogs, Tommy. He's Bichon Havanais crossed with Breton Spaniel. We got him from the refuge several years ago now.He's hard at work doing his job here. Ruth is nearly 30 and Joanna 25. They manage to potter about the house a little these days, but not outdoors yet - but that's seeing the glass half empty. I'm just so glad they have enough independence to do most personal things for themselves now. We really tried to do the right thing when we allowed them to have the Hepatitis B jabs back in the north. The doctor said their was hepatitis around and we wanted to protect them. Who could guess it would have triggered all this.


This is Ginger Biscuit. Shes Bichon Havanais crossed with something much bigger than she's supposed to be. She's a live wire. She loves knots. Here she is undoing one :-)

They keep us entertained.
 










It was sad to have to say goodbye to our old helpers. They'd been with us 3 years but the agency had been so awful we just had to do it. These are Mireille and Nadia.It's made for a bit of a disrupted autumn but it's been worth it overall.

We've had some help from our Social Workers this year too. They had a case conference in June, and have helped us apply for disability benefits. We have 2 really superb doctors. There isn't a specialist in the area who knows about ME, Fibromyalgia and the links with the jabs but we have the amazing "luck" to live in the same town as a GP who has taken a special interest in these things and who keeps abreast of a lot of the latest research. The nurses have got to know us pretty well and the pharmacy on the corner of our road and they have all been excellent. In view of what some people are going through in England with the controversies about ME and the subsequent negative attitudes and neglect even by medical providers we are very very grateful for the number of supportive professionals we have around us.

I'm really chuffed to have been able to manage the Christmas cards this year - though was thinking of you all last year, but didn't manage cards. We plan to have a quiet Christmas - actually I planned the last month to be quiet too but not had much success there ! We have had really nice Christmas day these last few years. I did decide to finally give up the stockings a few years ago - and that same year Ruth had already been planning it in secret and took over!!

case conference

looks like case conf went well. the helper who went came yesterday afternoon and was bursting with something she wasnt allowed to tell us. finally feel free to take a bit more pain relief even tho it leaves me groggy. even if the case conf comes up with nothing at least all the different parties know that someone is taking an interest so i hope wont be able to get away with doing any old thing in the future. hope.... 

 

social worker coming wednesday to tell us about it. 

 

feeling pretty burnt out now.

starting a/bs

well, will our home help agency survive ? all 3 managers/secretaries are off sick with stress. and doesn't look like any of them will be available to go to our case conference on the 19th either :-(

evening clouds from my bedroom window

we've had rain, but not enough to do any damage. tho it's a nuisance for the orchards as it's harvest for cherries and apricots. had local grown cherries last week - just lovely. and the helper who got them from the shop for us said it's her father in laws farm that grows them. I'm glad that gave us something nice to talk about cos I'm afraid she's a gossip and seems to get some sort of pleasure in saying unpleasant things. don't know why some people have to be like that, it's so unnecessary.

re-start antibiotics today. mosil. really feel this one is doing something. going to be a bit tricky for ruth who will have to change her low blood pressure meds in order to be able to take it. joanna still on cortesone for her breathing for over a month now. i hate seeing them looking pale and wan. we're all enjoying the more fruit and veg season. love summer fruits. struggle to think of what to eat - appetites not too wonderful. at least today's helper is doing lots of pancakes :-)

neighbours kids and balcony

these little poppets are our neighbours downstairs. they came up to see my electric guitar. they put on fancy dress specially for the occasion :-) we had  a lovely time. i feel very privileged that the boy, Ewan talks to me. for a long time he had problems with eye contact - still a bit reticent.  i don't push him, i wait for him to come to me, which he does,  so i feel very privileged to get a smile. while i played my guitar he strummed away on his. i did tune it a bit so it sounds a little bit less horrendous when i hear it through my bedroom floor !
joanna and i sang in canon a bit for them - our party piece, and they were so chuffed to manage frere jaques all together as a round. took me ages to get to sleep after - tired but wired. still, nice to feel rough cos of something nice that we did voluntarily rather than for something grot that happens at us.

these are a few pics of the state of play on the balcony.didnt have a lot of success with the seeds i planted earlier so i finally managed to get in a few more. but one cucumber plant is doing well. :-)  i think seeds probably need more looking after than i can give them rather than just sticking them in and leaving them to do their best.


don't know who's going to be at our case conference on the 19th. neither of our drs can make it. and the home help agency is going through a rough patch. now it's 2 of the home help organisers who are off sick with stress or something similar. changes imposed rigidly, without consultation, pushing anyone good towards the exit door ..... is it just incompetence, or do they really want the association to go to the wall but dont want to take the blame for closing it down ? what one earth is such an important service doing in the hands of a voluntary body anyway ? !!


hope you dont get too irritated reading this. struggling a bit with writing again. glad this has an english spell check, i keep writing in anagrams.   the ideas come out better in writing this diary than attempting to say them or even write them in letters.

and here is my latest little effort - learning knotted cretan stitch no less.

pic of ruth :-)

ruth

sent some documents to our social worker - she's getting ready for our case conference. feel like i'm drowning in papers. AND doing it in a hurry when the sw rang meant i didnt get to have my bath while the helper was here. :-(

but i love this recent pic of ruth. :-)