Sunday Morning

I wake up several times. I feel like I've done a lot of unaccustomed gardening yesterday. I wish. Every muscle - even the odd ones I never think about like in my eyebrows and behind my ears.

I love my walk with the dogs by the river bank two minutes from here (if you're well, five for me). Once a week is enough. Any more than that is sheer self indulgence with too big a price tag, and it's not just me that pays it.

As I walk out of the door I have a healthy feeling of being naughty. I too feel like shouting "Onion Sauce" at the rabbits in the hedgerow but unlike Mole I'm not a young male just abandoning white-washing, so even if I do meet Ratty the water rat I will still turn round and come home again to my charges. There is more to life than boating after all. Mind you I'd love to row again. It's one of the things I dream about.

I feel like I could walk all day. I possibly could if I had nothing at all to do for the rest of the following week. The word walk is perhaps exaggerating. I've found a way I can sort of roll - So long as I don't really use any of my joints I just sort of keep going. I so love being out. Love it. Exhilaration. Freedom. I used to walk or bike everywhere. I feel like I'm going someplace.

On Sunday mornings in the summer there's always someone around. On this crisp frosty day there's no one. I can sing. Memory not too good so I don't sing songs, I just sing ditties made up of what ever's going through my head at the time. Odds on God will be in there somewhere - I prefer cheerful subject matter. Lots of gratefulness. We may have some grotty things in our lives, but still an awful lot to be thankful for.


I get home and jot down some of what I can remember of those lovely thoughts, then get a drink. Now I start to feel like I ran all the way. Nausea. Instead of changing out of my sweat drenched clothes I lie down. It's revolting being this limited. The feeling of stale dampness blinks in and out as I try to concentrate on listening to the radio. Another thought takes over and eventually drives me into an upright position - a desperate hope that if I think hard enough I'll come up with something that the poorly appetites can eat, enjoy and be nourished by. Failing that at least something that will keep them going for a few more hours anyway. But occasionally in among all that comes the flicker of a memory of a bird in a bush - a mere flash of white wing bars as it hops from invisibility to invisibility (I must wear my glasses more often). There's the happy thought too of the vague sense of red fast fading in my wind-stung cheeks. I really did go out. I made it. I'll do lunch later, I'll lie here for a bit.

Actually, before the reality energy accountant finally takes me in hand I don't get a shower but I do manage to summon up enough lingering adrenaline or endorphins from the walk to get changed into fresh clothes before collapsing properly. I don't quite come up roses, but I don't end up as the mulch we'd put at the bottom them. 

Would you leave such a person in charge of 2 even sicker people ? A world in it's right mind wouldn't, but the current arrangements will have to do until we find one of those. 

I will look back and not remember it as an unpleasant day. No major crises. I feel fairly peaceful. I listen to the rest of my book on the MP3 player that my daughter named Petunia. I spend a long time on the computer because I feel too blobby to do anything else. Quietly sort out my sewing pics into a blog so I can remember what I've done. I mud wrestle my brain to do a couple of words on Scrabble and Words with Friends.

When I have my sandwiches I look at the bread and I think of the people not on line because they've been able to meet together for church, or go out or get together for Sunday lunch and am glad.

I spend a few minutes with the girls when I take them their meals. Later on I hear them chatting together. One of the loveliest sounds in the world.

Another Sunday.

Things I saw on my walk yesterday

Hello for Christmas part 1

Hiya. Thank you for coming to have a look. We wish all you and yours a very Happy Christmas and all God's blessings for the coming year.

We've been in France now since 1993. Time flies. Those amazing heady years living in the inner city in the North of France in an 80% Muslim quarter, 5% Buddhist with the Cambodian and Vietnamese refugees, seem a life time away now. We still get homesick for there. We were then in the Ardèche with the youth and activity centre doing international hospitality amongst other things for 4 years and we were invited to help with the church here in Nyons in 1999. We came here to live in 2000. We did try to move back to England several times but were too poorly to face the move. Most of you will know that Colin went back to live there in 2009.


Here's Joanna having a laugh with Ginger.


And Ruth with Tommy. Joanna runs a friendly forum called TeahouseMB. She can't go on all the time, but she's got it set up so she has helpers who keep an eye on it when she can't now. She's taught herself to crochet and makes other craft things when she can. Colours and cheerful things are so important to help keep the chin up.

 Ruth is interested in plastics and polymers. She's taken up repairing Bratz and Barbie dolls. This is a familiar gruesome sight - they've got white stuff on the stains then are left in the sun till they fade. She also re-roots the hair and sells them again for pocket money prices on the internet so she can buy more wrecks to makeover. Just have to be grateful it's not cars really. Takes up less space :-)


We all got ME in 1996 - the triggers for the girls was definitely the vaccinations. For us it may have been stress amongst other things - but what is stupid is that we were happy there and really enjoying our work supporting families in unstable situations.

 Who would have believed that after all those years of living in run down and inner city places that we would end up living somewhere so pretty ! Our flat is top left. No lift - that's why the rent isn't over the top. When we first here the family in the flat next door were here because they'd had to hide from problems in Marseilles, and the family below had a son on drugs who'd come home in a state in the early hours - real home from home for us. But it's all calmed down. Most of the flats are owner occupied now as house prices have shot through the roof. We got here just at the right time. 
We have a good landlord who has kept the rent down in return for not having done any modernising on the flat but he did come and put in a new water heater this week.

The sky really is this blue sometimes - these pics are taken in the winter when the mistral wind has blown away any sign of clouds.

We have the river bank nearby - (below) which is beautiful. It all gets very burnt and dusty looking in the summer. It's not baking every summer, this isn't Spain - whew ! I'm still a northerner at heart. The trees in the pic are a bit odd - the trunks are too short. I found out that when they wanted to build on the flat land by the river but had to reinforce the banks to stop flooding they didn't know what to do with the lovely avenue of trees beside it - so they included them in the new raised banks by just building up round them.

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!!

This time of year

Autumn trees on the digue

A dog feeding trick we learned and the dogs love - put their biscuits in a bottle. They eat more slowly and enjoy kicking it about to get the food out.

Ruth named this plant Mr Cabbage :-)

Rain on the pansies

The new fridge. No more ice floes in the milk.

The petrol prices :-(

Weather arriving from the north.

When it rains the hills vanish

Grey day, pretty anyway

Tommy : "No comment"

Grey day and burning bush. Proof that we do get dull weather as well as the pretty stuff. I love the autumn colours. Hectic week - when I'd set it up to be calm cos of the new pain relief doses. New fridge - at last. Ruth took off the doors and turned them the right way round - with a little help from me holding and fetching things. New helper this week too - another lovely lady, just yet more explanations. Joanna had low level asthma and so forgot to take some pain and night meds - in a pickle this morning. However much stuff we avoid eating we're still putting on weight - but exercise makes the pain worse. Not sure where we're going on this one :-(

White leaf

Tree melting into a golden puddle.

Plenty of water in the river. After the big rain we could hear it from the flat :-)

Yellow leaf

Bones and Views

Daft dog ! Daft owners :-)

Constantly new areas of problem solving. Working through Joanna's bone pain. Think it's from a combination of being off her feet, light sensitive so avoiding sun, use of Pregablin for nerve pain, then the final straw was taking oral cortisone this spring for the asthma. She was already on vit D supplements, now taking calcium which helps within the day. Amazing how our bodies work normally as fast as our bones are worn away they're being rebuilt !

Today's helper loves taking things to pieces to clean them. I hurtle to get the instruction books out and we manage to get them back together again. Today she has attacked, with unbridled enthusiasm, the washing machine and the dish washer. She ran her finger behind the door seal of the latter and produced something ghastly with the pleasure of a child fishing in it's nose to see what it can find !

Had a lovely time sat with Joanna on the balcony yesterday eating Marmite toast in the late evening sun.

Then Ruth called us through and we watched a wonderful aerobatic display by the starlings from her bedroom window. Being well off the ground we get particularly good and uninterrupted views of things like that, and the town annual firework display at Easter on the bridge over the river. 
 

 Back and front we've got lovely full spread display of autumn colours by the river bank and on the hill sides.

There's water in the river now we've had rain