P & J have so far spent an hour and a half trying to put up the tent. Meanwhile I've been watching last night's 'The Tudors' on iplayer. (I cried when Thomas More got executed). We missed it because we decided to take the 'scenic' route back from Ely. I don't know if they have something against signposts in the fens but there seemed to be a marked shortage of them, we would come to a T junction & there would be no indication at all of which way to go so we kept getting lost. It took 3 hours to get home as opposed to an hour and a half getting there so we were all tired. I'm still really tired today but I managed to do a load of washing seeing as it's such a nice sunny day.
We had a really good time in Ely. It is a fascinating place. We arrived about 11.30 & had a drink in the cathedral coffee shop then went to friend's house & then all went to really interesting old restaurant in some sort of crypt. I had asparagus & stilton quiche & chips & salad which was really yummy. It was nice to see friend & her grandson again & J behaved very well during lunch. He had cod & chips which was the only thing on the menu he would eat. It would have been a bit embarrassing if there was nothing on the menu he would eat.
Afterwards we went round the shops, there was a really interesting toy shop cum model shop cum bike shop cum craft shop which managed to have something of interest for us all. Then we went to Christian bookshop which had a good selection. Lady in there was very chatty, her sons had been at Faith Camp. I bought three books ( two form bargain section) & J got a game called 'Mission'. P has been playing it with him today, he lost.
Then we went to the museum which J found really interesting. It's in the old gaol & there's some reconstructed cells upstairs. They had a stairlift that you sit on & a wheelchair at the top so somebody doesn't have to carry your wheelchair up. The only thing was the stairs are pretty steep & going down was a bit scary. I suppose I shouldn't have looked down but I was thinking 'Do these things ever come off their rails?' I suppose they can't really.
After that we found there wasn't time for P & J to go up the cathedral towers (what a shame, I was deprived of chance to spend a couple of hours sitting waiting for them). Instead we went to evensong which we all enjoyed, even J! The choir were all girls & they were really good. I could have sat & listened for hours.
Then we went for a walk down to the river, there were some horses in a field which looked quite striking against background of cathedral & some really cute ducklings in park just by river. On the way back we discovered I'd got a flat wheelchair tyre but we were nearly at the car by then.
All in all it was a really good day but we'll have to go back some time so they can go up towers.
I'd better go & find out how tent is doing.

There was something so disgusting on our doorstep this morning: someone had trod on a snail & squashed it & there was one of those great big juicy black slugs eating it! Bet you're really glad I told you that.
Haven't slept properly for two nights so a bit zonked. I think the problem last night was I ate some dark chocolate in the evening & it tends to keep me awake. Why, why, why did I do it?
Becky took J to the 'Maize maze' yesterday afternoon. This is a maze in a field of maze in which is run by owner of craft centre & was designed by P & laid out with J's help. P has been doing this for some years & I've never been round it. But the ground is muddy at the moment & it would have been hard work lugging the wheelchair round. Anyway it's not really the same. I'm going to wait until I can walk round. Or run round. Or skip round. Or dance round. She took a picture of J & Tim at Exit looking just like a pair of nightclub bouncers! When did they stop being cute little boys?
Last night started getting photos together for J's 'holiday book', this is for a competition at school for which they keep a record of their summer holiday. Even if he doesn't win a prize it's a nice thing to keep & we've got some good photos this year. Several seem to be of J eating, for some reason.
Had a nice game of Junior Scrabble with J yesterday & afterwards he played game where we put tiles in pairs to make 'pizza boxes' & saw who could stack them highest.
Tomorrow going to Ely for day out & also to visit someone we know who lives there.
J just said he's going to tidy his room!!
Our neighbour just knocked at door & gave me great big bag of runner beans he's grown!

Camp went well

J tired today but not admitting it. He was playing on his game boy with the air of a starving person suddenly being given a full English breakfast. He had been almost four days without it.

Akela phoned last night and said J got on really well at camp unlike last year when he got a bit homesick and miserable and didn't feel well. He'd also managed to find J's missing fork and teeshirt.

P went to Waitrose after work, cooked dinner and then did a little bit more on bathroom. It's so exciting the thought of having a proper bathroom again.

Have been discussing floors for main part of house. Have got pine down but it has cracked a bit and needs sanding and various treatments. Thinking of putting something called 'marmoleum' on top which looks a bit like lino but a lot more trendy and is made from natural materials. You can arrange it into amazing patterns apparently. We'll see.

Don't want to write a lot, been on computer too much, tired.

I told you it was 14.30

Today's Bank Holiday Monday so P was off and I suggested we have a tidying session because I think the house is the untidiest it's ever been since we lived here. When I say 'untidy' I don't mean an obsessionally house-proud perfectionist's version of untidy ie one or two things out of place I mean UNTIDY!!!

 It doesn't help that the kitchen has been doubling as a carpenter's workshop which I know is something of a necessity but it's got to the point I can't ask anyone round. Anyway P did really well and cleared the whole kitchen floor and hoovered up the sawdust. I had a go at sorting out the paperwork. Our paperwork seems to be permanently out of control, I feel this is partly due to P's mail-sorting system: whatever it is it gets left on the nearest surface. 

I'm in the process of instituting a new filing system, well ok it's just the latest in a long line of 'new filing systems' but this one might work!

We gathered up all the waste paper and cardboard to take to the tip on the way to pick up J from camp. I was saying to P to hurry as we had to pick him up at 14.30. He said no it was 15.00. I said I was sure it was 14.30. He said it was definitely 15.00 because Akela had told him so.

There was a great long queue at the tip but P said it was ok we had plenty of time. We got to the camp at 14.40 and P said he'd just pop into the shop at the entrance to buy a drink as we had plenty of time. He went inside and the next thing was I saw J's face passing by in a car driven by Tim's Dad. Apparently P had made a sort of loose arrangement with him that he could bring J back if we didn't turn up. I beeped like mad and J was looking straight at me and I thought they'd stop but they didn't so we had to race after them. We took different routes and obviously theirs was the quickest because we got home just as they were turning round to come back out of our drive. Then Tim asked if J could go back to his house to play so I only saw him for a couple of minutes and then he was gone again. He seemed to have had a good time, he won an award for something but can't remember what.

The only good thing about our wasted journey was that I timed how long it took from a senior school J might possibly go to and it was only 10 minutes although that was with P driving and not at peak traffic time. It's not bad though.

So close to having a bath

Soon, soon, soon I will be having a lovely luxurious bubble bath in our very own bath! P is really cracking on with bathroom. Have delayed bath installation a bit by wanting a shelf alongside it but I need somewhere to put my mug of tea and bar of chocolate.

Raining this morning but brightened up later.

Went to church, visiting preacher, found it a little bit hard to understand his voice but otherwise quite good. Feeling a bit frustrated with worship at church at moment compared to what we experienced at Faith Camp, don't know what I can do about it really.

Relaxing afternoon, half watching Grand Prix. Went to B and Q with P to get plumbing bit for bath and tiles for bath shelf. Bath now installed with taps. No water coming out of them yet but you can't have everything.
 
Got Chinese takeaway for dinner. Very nice but sugar scattered over crispy seaweed which tasted a bit strange.

Should we have bought that tent?

Yesterday I was just totally decadent and stayed in bed all morning. Until 12.00! Actually I needed to in order to recover from all the exertions of Friday. The only problem was normally if I lie in on a Saturday P brings me tea and breakfast and he wasn't there. By the time I got up I hadn't drunk anything for 20 hours or eaten for 18 hours! Feeling weak from hunger I managed to drag a pizza from the fridge to the oven and made a cup of tea.

P arrived home having really enjoyed himself and he said J was fine. We were going to go out to see 'Mamma Mia' at the cinema but on the way we called in to see a second hand tent we'd seen advertised. The people selling it lived miles out in the country and by the time we'd got there, seen the tent, agreed to buy it(!) and it was taken down and packed into the car it was too late to go to the cinema.

Are we doing the right thing buying a tent??

Off to Cub Camp

Friday was the day J went to cub camp. While getting his stuff ready has been infinitely easier now I've got a washing machine it somehow all became a bit frenetic. He was supposed to take a tin of cakes with him and I really didn't feel like making some so I bought some little sponge cakes and decided to ice them. How can it take 2 hours to dollop some icing and sprinkles on 24 cupcakes? I don't know but it did.

By the time I'd finished they looked so wrecked that no-one would ever think they were shop ones. While I was doing it I was in an introspective mood, I suppose it was from being reminded so much of my past the day before. I was just thinking about my life and how I wish I'd done some things differently - (work harder at just about everything for one thing). But then if I'd done it differently, if I hadn't made some of the mistakes would I have ended up somewhere else doing something else? I might not have ended up spending 2 hours icing cupcakes for one thing. But then I might not have the family and friends I've got now and I wouldn't ever want to change them for anything and the thing about life is that cupcakes don't matter and yet they do matter both at the same time and what's more I quite enjoyed icing them.

Then I started getting his stuff together. The list didn't seem much but it was like 'Where is the stuff sack for his sleeping bag? How do I put his name on his torch? How do I label his grey socks? It would be too uncomfortable to have name labels and anyway I can't find the name labels. Should I put the antihistamine cream in even though we were supposed to inform the leader in advance of any medication, but is it really medication and if I don't put it in will he get awful bites and not be able to stop the itching? Oh no I didn't know his wellies were caked in mud! How do I squash a pillow, blanket, towels, raincoat, clothes and washgear into a holdall? Should he take his teddy? What if he does and it's lost? What if he doesn't  and he can't sleep?

In the midst of this there was a ring at the door - one of the Jehovah's witnesses back again! So I broke off and had this discussion about whether the Holy Spirit is a person or a power and what does this Geek word mean and what does that Hebrew word mean and I suggested she comes back in a couple of weeks when J is back at school. 

Then I got J to drag his bag to the porch and we waited for Becky who was picking him up. She arrived late and flustered, burst into the kitchen saying "Have you got a plastic bag for him to put his wet clothes in at camp?"

Then they were off and I went to pick up P from work. Parents are expected to help out a bit at camp and also J didn't settle in very well last year so P had decided to stay there Friday night and come back Saturday evening. For the last few weeks whenever I'd mentioned camp P's expression had been similar to that of someone who's about to go into hospital for a particularly unpleasant procedure. However he phoned me later and he sounded like he was enjoying it. They'd been rifle shooting and he's done really well (P that is) and they had a great camp fire and J's troublesome wobbly tooth had fallen out.

I spent the evening eating too much chocolate and watching 'The Tudors' which P doesn't like because he says it's historically inaccurate but I think the characterisation's really good. Then I watched a programme about Ronnie Corbett, don't know why really. Then I went to bed with the knowledge that for the first time in years nothing and nobody was going to wake me up, I could just wake up in my own good time. It took a while to get to sleep because I kept hearing noises and switching on the light and sitting up in bed with my heart thumping. But at last, with both the landline phone and mobile beside me I settled into a peaceful sleep...

At 3 am I was woken by the alarm on my mobile. This was to inform me that it was J's friend Adam's birthday.

At 6 am P's alarm clock went off.

For goodness sake!!

Memories

I'm still behind with this.

On to Thursday which was a really good day because we went to visit a friend of mine from school and her family. She has two boys aged 9 and 12. They and J get on so well together, it's really good. We didn't tell J where we were going so it would be a surprise ( and also so he wouldn't keep badgering us). I though he would pretty soon work it out when he saw the roadsigns. But he didn't. Even when we got to the town and stopped at a shop he didn't ask where we were. Then P let it slip and he finally cottoned on a few minutes before we got to their house.

We had a really good day, it was sunny enough to sit on the patio which was just as well as the boys totally took over the living room with their video games etc. My friend's husband is Greek and we had a really nice lunch with chicken, Greek salad and feta cheese and roasted vegetables. Even J who is in the running for the 'world's fussiest eater' ate quite a lot. Then we had Greek yoghurt and Greek honey which was very nice.

Later my friend produced a copy of our old school magazine (which was yellowing with age!). There was lots of interest in it such as the school trip to Norway which took two days to get there. There was also a picture of some of the teachers and I thought how young some of them looked. In my memory they were always really old. And when I came to the picture of the 'staff versus pupils netball match' (only at our school would nuns in habits play netball) there in the background was the two of us! Fifteen years old and me with my hair in bunches! Happy days! (Well, they weren't really,not for anything would I want to be fifteen again.)

On the way home we took a quick detour past the house where I used to live as a child. Such a lot of memories. I wonder how my life would have turned out if my parents hadn't moved away.

You can't treat disabled people like this!

Now my mood was not about to get any better. This was because in the post arrived a copy of the letter from the paediatrician to our GP about J. As I've said this doctor did sort of wind me up a bit.

I'll just mention that P can't see anything wrong with it at all. What it said about him was 'J's father is an ex-Secondary School teacher and is a School Governor'.

What annoyed me was: 'The family history is significant here in that J is an only child and his mother is wheelchair bound from CFS/ME...' 

There just seemed to be three assumptions implicit in this:

1) That if I was sitting in a wheelchair in his office I was 'wheelchair bound' which I'm not.
2) That if you are an only child and you have problems those problems are likely to be connected to you being an only child.
3) That there is an association between my illness and J's problems.

Now all this could be true but what I would like to know is why is my health of relevance but P wasn't quizzed about his at all?

Why is his employment history important but mine isn't? I mean it could have said 'mother is a trained Biomedical Scientist with a qualification in Health Service Management and father suffers from quite severe hypothyroidism.' It could, couldn't it?

I keep wondering if I should write to him but I don't know if it would do any good.

H also said J was 'an extremely quiet and reserved youngster'. Should have seen him at the coffee morning!

Anyway basically what he said was he doesn't know what's wrong with J ( other than being an only child and a having mother in wheelchair) and can't suggest anything at all to help and 'distinguishing how much is anxiety, how much is ill health and how much is 'don't know' is very difficult.'

You're telling me it's difficult!

But really the strange thing about J is that since we've been to Faith Camp he just seems to have had a lot more energy and been able to do more than he could before. I can't explain it really, he isn't totally not ill any more but he just seems to be better than he was. He says he asked God to heal him at Faith Camp. Perhaps...

It will be interesting to see what happens when school starts again.

Livening up the church coffee morning

What I normally do on a Wednesday morning is go to the church coffee morning. This is normally ok, Becky turns up, we have a chat, there's some other nice people to talk to, there's toasted teacakes and biscuits, it's nice to get out etc.etc

Anyway I give a lift to someone called Mavis who can't walk very well and the coffee morning is a real social event for her which makes it a bit difficult when it's the school hols and I've got J because she still really wants to go and nobody else offers to take her. I have been taking along Adam as well and he and J have been playing quietly on their DS lites, no problem.

This week after sitting doing this for a while they suddenly jumped up and started playing 'tag'. Now this does not work that well in a church hall full of elderly people having a coffee morning, so I told them to go outside. They did, then burst back in, dashed into one of the rooms, banging the door, then dashed out again, then in again, getting louder and louder and rowdier and rowdier. I can't run so couldn't catch them and Becky wasn't there. I didn't even feel I'd got the strength to walk across room to them. I kept calling out to J to behave but he ignored me. They're not normally like this, I don't know what came over them.

I don't want to go into the details of all that happened, let's just say the other adults were not totally understanding about the challenges facing disabled parents and I ended up feeling annoyed with just about everyone. We certainly livened up the coffee morning but I don't know if I dare take them next week.

J tries skateboarding

Oh dear, I'm getting all behind with this again. Quite a lot has happened this week but I keep getting too tired to write.

To go back to Tuesday they had a free skateboard park set up by the council in the Village Hall car park. I took J along and then another little boy came and then left quite soon then J's friend Adam and his little sister came and that's all there was. It was nice for them to have it all to themselves but a shame that more children didn't come, I don't think it was all that well advertised. J had never skateboarded before but picked it up really well and was starting to manage to go up the slope without falling off. He had one quite nasty fall and bit his tongue but recovered well. I got a bit cold sitting watching them and had to wrap myself up in a blanket when I got home.

Then J discovered his friend Tim was back from Ibiza and I took him round there. Becky was up to her neck in piles of washing but they all seemed to have had a good time (well perhaps except for Tim's teenage brother who had spent most of the time in his room missing his girlfriend). Anyway J spent the rest of the day there so I had quite a restful evening.

Not managing to go swimming

I got a bit weary with writing this because I thought nobody was reading it but I've discovered that at least two people are reading it so I've decided to carry on. One of those people said the beginning posts were a bit confusing, really what I was trying to do was recap over the last few months since we moved here but this blog wasn't started until July. Sorry if it was a bit muddled. Anyway from now on it is more or less life as it is happening.

Having said that I'll go back to the beginning of this week. Monday was a strange sort of day, I woke up feeling terrible, really tired and achey. I lay in bed for some time having told J to get his own breakfast.

Eventually I dragged myself out of bed and spooned some yoghurt into a bowl for my breakfast. As I chopped up some apple to go with it I heard voices outside the back door - Jehovah's witnesses! Anyway even though my brain was still behind in bed and my legs were aching from standing I got into this really long discussion with them about the Trinity and was Jesus really God (of course he was, otherwise none of it makes sense)?. Eventually they said they would come back another day and we could continue. I felt really sorry for them because they were so nice and yet so mistaken. I'll have to go on the internet and work out what I'm going to say to them next time. 

Then I got a phone call to say the son of some people at church was really ill in hospital with cellulitis and possible meningitis and could I pray for him which instantly stopped me feeling sorry for myself.
Then J's friend Adam phoned up and said could he come round to play and I thought 'Yes! I can get some rest! I took him round and his mum, Louise, asked me in for a cup of tea and we had a long chat. But then, it being too cold for outdoor swimming, the children wanted to go to an indoor swimming pool in a nearby town which is also where Adam might have his birthday party and they wanted to suss it out. Louise didn't feel able to keep an eye on all three at once so I would have to go and I was thinking 'Oh no I don't feel up to this,' but they all really wanted to go and Louise said if she dropped me at the door it's not far to walk into the pool so I agreed. P wanted to go to Waitrose so we agreed I'd drive home so he could have the car and Louise would pick me up.

 So I raced home, shaved my legs and popped a couple of pain-killers. I decided to leave my bag at home and take just my purse. We got to the swimming pool and found that although on the internet it had said it was open for the next 4 hours in fact it would only be open for the next 30 minutes. It would take the children 30 minutes just to get changed and dressed again so we went on to another town but the swimming pool there would close in 5 minutes so the children went to the playground instead and Louise pushed me in the wheelchair to watch. On the way back we passed P in the car and it was at that point that I realised that when I picked up my purse I should have picked up the house keys too so we had to go back to Louise's house and wait for P to pick us up later. But it didn't turn out to be quite as an exhausting day as it could have been.

Grrr

It's been a bit of a while since I wrote anything but life has been hectic of late. Faith Camp was truly awesome but I can't really put into words what it was like, perhaps I'll talk about it more later. We all really enjoyed it especially J who loved the children's group he was in and also enjoyed the bungee trampoline. We're even contemplating going again next year and camping. There seemed to be such a good community spirit among the campers and also of the food on sale J would only eat chicken nuggets and bacon rolls. It might be easier if we were preparing our own food.

Our hotel to be honest was just a bit on the grotty side. We know where not to stay again.




Much as I enjoyed Faith Camp I found it totally exhausting and still haven't got over it. Conversely since we've got back somehow J has got more energy and is rushing around far more than he was before. I'm finding it quite hard to keep up with him. This week he has been doing sport at a local leisure centre with his friend and is coming out and wanting to go swimming. His swimming is really coming on: he is now confidently jumping off the diving board which he wouldn't do last year.

Yesterday we met up with my brother and his children which was really nice. My elder niece and I had a girly shopping trip while the others went to the playground in the park. Then we met up with P and had lunch in an Italian restaurant which was really good.

This morning J had an appointment with the paediatrician. By coincidence he was feeling ill with a sore throat and tummy ache. I was really hoping it would be helpful but I think it was a mistake trying to get J's developmental problems and his illness sorted out at the same time because the doctor decided the illness symptoms were down to anxiety re writing etc. He said J's co-ordination problems were not severe enough for him to diagnose him as dyspraxic and if we wanted to go to a psychologist and get a label put on him it would cost us £300.

 I don't know if I'm being paranoid but I felt the doctor just had a really strange attitude to me. He seemed to be placing more weight on what P said the whole time and he noted that P was a school governor and used to be a teacher.

Then he turned to me and said "What about you?"

"Do you mean what job did I do?"

"No, I want to know why you're in a wheelchair, it's obviously relevant to J's problems."

Anyway he concluded by saying J's perfectly healthy and he just picks up bugs and they're worse cos he's anxious about school and I should just keep him off if he's got a temperature and I said that sometimes he looks really ill even though he hasn't got a temp and he said perhaps we need to move the criteria sometimes and I need to be tougher and P agreed and I said I spent all of Years 2 and 3 dragging J into school and I know about being tough but it's really hard when I'm in the situation of deciding if he's ill or not and it's easy for P at work on the other end of the phone to say 'send him to school'. 

Then I turned to J and said "Are you anxious about school?" 

"No."  

The doctor said we hadn't got time to talk anymore, goodbye. 

Quite in what way any of this was meant to help I'd like to know.

But anyway in spite of everything I'm still trusting God, I know he's going to get us through all this illness stuff and out the other side and now I'm off to town to scoot round the shops a bit before picking up the boys.