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!!