Now She is 8 (by sarah)

Jean's actual birthday is hidden at the end of the summer holidays what with her being born on the August bank holiday - so since she has been at school we tend to do her party in September once she is firmly back at school other wise people forget!

So this year for her actual birthday we went to the Library and had a picnic and went hedgerowing.

We bought the picnic from the Co-Op in order to get more tokens for Mary's Banana toy before the offer ends and then sat and eat it on the grassy bit by the library (think it belongs to the community centre).

Me and Mary sang happy birthday though I have to confess Mary continued with 'clack sheep star!' so not the best rendition ever and she kept saying it was her birthday and 'NO Jean! Mine!' etc...

We went into the library for the putting back of 10 books and the getting out of 14 (just for Jean) and settled in for the creepy crafts that go with the reading challenge they had over the summer known as Creepy House.

Jean finished the reading challenge weeks ago! We have not been able to keep up with her book habit at all - we have tried to encourage more factual books but she's not interested at the moment - she says she wants to be a writer. I pointed out you need to read factual books for that as well which made her pause and she asked me what factual books I was reading and we got talking about tudors and bees and things and she made me do yoda impressions all the way to the library and she mentioned the fact that Yoda and the seer woman in The Dark Crystal sound the same etc... It was a fun outing.

Both of them made bats and got their photos taken for the newspaper - not this photo though that is one of mine.

And she has also decided she wants to do blogging so here is her first book review over on Orange Monster (that being the kids book and illustration blog so it seemed fitting).

Click here to read it 🙂

Oh and she is getting crushes - she babbled at the 16 yr old at the library about languages for ages - confusing him with Lojban 😉

A Day of Pain and Gain (by sarah)

I woke up early yesterday as in 4:30 in the morning, it was tipping it down and I was in pain, arthritis/joint pain and I had to take pain killers, so I got up and did some writing. Dawn was miserable and grey and you could hardly tell it was daylight if I am honest and I was miserable. I had been planing on walking to the library with the girls.

However, the baby slept in and Jeany was happy to play mathletics so I went back to bed with more drugs and awoke a couple of hours later feeling just a bit achy and sore and the rain had stopped. I got dressed and retrieved an awake but happy MAry from her cott and set the girls up with a film whilst I awaited the boiler service men. They came, had tea, chatted with me about bands from the 80's , said the boiler was fine and went. I packed water and nappy changing stuff for Mary etc... and off we went to the library - walking - I managed this last week with Alaric but knew it was the edge of my endurance.

My pelvis was creaking by the time I got there but I managed it and the girls sat there happily reading the books . for about 45 minutes - all told we were there for about an hour. Jeany has finished the summer reading challenge as of last week but Mary has been getting her little passport stamped and it was her turn to get a certificate. I am hoping to take her to the Tuesday rhyme time there but it is quiet a walk for me still - it took me about an hour to walk each way though I do go rather slowly.

We left ladened with books and Jean navigated us home, I then remembered that I had planned for us to blackberry on the way home as I'd noticed some were looking ripe on the way to the library last week but I had completely forgotten and we had no tubs or bags or anything on us 🙁

Then Jeany had an idea and we drank the water from her water bottle and Mary's beaker and filled those up with them 🙂

It worked really well and there were soooooo many berries! I quiet want to make a black berry wine this year so need loads of the things!

Jean has requested crumble and Mary cake so we shall see, especially as several people have been asking about the hedgerow jam again as well and there are enough elderberries and rose hips and things along the way that I think it should be possible.

It was a hard day physically but I feel I achieved alot and I have at the very least I have gained some blackberries. I am sore today, but not too bad.

Creativiti Tea – Summer (by sarah)

This weekend we hosted the second ever Creativiti Tea which was quiet frankly epic - though the actual event was on the Sunday the first person arrived Friday evening all the way from London! Two more arrived on Saturday when the BBQ ended up being cooked under the grill whilst Alaric did various bits of his programming projects and began work once again on the furnace.

We played board games and Jeany got an early birthday present which was Dr Who Monopoly!

I baked cakes (they are never as good as Al's ones and I was a bit out of practice with the icing!) - including mini vegan banana bread with red currents (these are from my parents garden I planted a red current stem when I was 13 and now they have taken over the garden - I am attempting to find more things to do with them than make jelly!).

Then at 10 am Creativi Tea began properly. Mainly we were writing - I personally wrote about 3000 words, we had people working on novels, poetry, short stories and more!

In the kitchen glueing and sticking were a foot.

Along with bead work - ankle bracelets seemed to be the thing.

Then there was sewing - mainly cat nip mice from old cloths - the cat nip was home grown by our friend Charlee.

Tom puss at least loves the cat nip mouse!

And I mean he really loves it!

A teddy bear was cut out and partially sewn together and the beginnings of a ball were started.

Music crept in with the odd bit of laptop composing and the Hammond Organ getting switched on 🙂

I sold £15 worth of books for Shelter (the books will be there until Christmas if anybody else is interested).

And we showed Charlee how to make sushi.

We geeked and created and played games and laughed and drank lots of tea 🙂 I am looking forward to organising the Autumn Creativi Tea which will also be my book launch! And also my friend Claire gave me the most beautiful roses 🙂

Oh and Jean's butterfly garden produced a butterfly 🙂

We had lots of fun and Alaric seems to have gotten one of our friends into learning Lojban - which had us all thinking about actual meanings of our names - turns out there is an older meaning for Sarah than princess - essence or core, pure centre... etc. I love finding out new things 🙂

Al’s legs – an update (by sarah)

Ok so though the nasty halo rash thing cleared up with the antibiotics the bits on Alaric's legs are still red and sore lumps that itch. Our drs surgery seems to have stopped giving out appointments at the moment and insists you phone up in the morning and talk to someone - I think they are supposed to be phone appointments except they aren't scheduled either and you have to sit there for a couple of hours awaiting their phone back unable to do much incase you miss the call :/ Then they tell you to come to the surgery and prescribe stuff - or at least that has so far been our experience.

Anyway so Al ended up seeing the Dr with them again apparently they are not currently infected but could become so if they remain the way they are as you can't help but scratch etc.. They are the way they are as Al is still having an allergic reaction to them :/

So he has tablets and cream and we wait ten days to see if they go down basically.

Running to Stand Still (by sarah)

So for the past 4 months I have basically not used my walking stick, I have been walking and lifting small amounts of stuff and generally getting on with things. Today I managed to sit on a rug on the ground for the animal service at the Cranham Feast and even jumped up to take some photos of donkeys and sheep (as you do), but it began to hurt so I didn't stand up for the songs but sat with Mary on the rug (Jean and Al were holding banners and flags and what not).

When I say hurt - it was nothing but a minor ache, I then walked up to the cricket field in the procession and even carried the baby for bits of it but that was beginning to be painful so I was slow but not as slow as last year and I felt proud I was walking much much much better even than last year when I was just happy to have walked it. But everyone was slowly passing me and I felt embarrassed(and sad) that I had to let my toddler cry instead of carrying her. People did offer to carry her but she refused to go to anyone other than me.

I made it to the cricket field and sat - for not very long - then I started setting up the childrens sports and I was happy, happy and exhilerated that I was managing to sort of run the routes and show the kids how to skip and so on. And I thought wow! What an improvement and then I looked at the cricketers and I thought - you know I've worked so hard to be able to do this, to be get the mobility back and to try and keep some level of fitness whilst it and the aneamia were bad. So much effort fighting the chronic fatigue and pain which will always be there and being careful about foods and the like, so much physio and effort. It's like my own mini olympic training... to be not quiet as fit as a normal person.

So though I feel proud and happy about what I have achieved and the improvements, I feel sad that it takes just so much energy and effort and to a certain extent there is always going to be something I am battling even on brilliant days - this is becoming less of an issue as I get older actually as my peers are increasingly coming up against illnesses and the like and I at least I have had a decade to adjust were as for them it is new. I also find myself feeling angry. I think, 'you know all that effort and people look at me and think lazy fat cow' and I am angry about that, I am jealous as well - the darkest moment with that was during Jean's pregnancy when I had been let out of the hospital to go to the pictures with Al, he was pushing my wheel chair and everything hurt. I had followed all the health advice and done everything right and there outside a pub we went past was a woman as pregnant as me in tottering heels, fag in one hand and bottle of something in the other talking about going clubbing. I can't express the hate I felt in that moment.

I've probably said most of this before but it just sort of hit home to me tonight as we watched AVATAR for the first time and the guy having to pull his legs about reminded me of the fact that there had been phases of my life when I've had to do that and bizarly that it is sometimes easier when you are in a wheelchair or on crutches as people can see you need help. When you are getting better (or worse) people see an apparently healthy young person and tutt about them not giving up a train seat etc...

As I tell Jean - you can never truly know how another is feeling, you do not know how hard or easy things are for them, you should not judge them as you can not judge them, you can not know.

Today Al was also worried that I was doing the main lifting and shifting for the sports stuff we did with the kids, I got it all out of the shed and lumped it across from the car etc but I was capable and he was doing the procession holding the banner and I didn't want him pushed to far with the way his legs have been and the antibiotics etc...

He was pleased to see I didn't flag as much as he was expecting - the odd sit down here and there was enough and I only started limping towards the end and it was a hard long day for me.

It feels to me like I am Running to Stand Still and I haven't even really managed to stand still, I have slipped backwards - I write adventure stories with caves and mountains and things in, I remember climbing, I take Jean to the climbing wall and look at the pictures of people climbing - I see moo cow fluffy chalk bags and I get excited and then I feel hollow as I explain to Jean why I am not buying it.

I think I also push myself for events as I can push myself through them and then take time to recover and it makes the more painful times tolerable by having something to look forward too. I have had a decade or so to adapt to my situation.

I got a thing through from college - the rearranged meeting about disabilities and stuff (I missed the first one due to Al's legs) - part of me wants to go 'no I'm fine now honest I don't need help.' This would be a stupid thing to do but it makes me feel so pathetic.

I know though that this is standard for those with long term / chronic conditions and on going health issues - hey I even stole the title of this blog post from a friends audio play about ME /Chronic Fatigue. The money from it's sales is going into research into the condition which can only be good - it wouldn't solve the separated pelvis but it would be something 🙂

Mainly though I am happy today - I walked and ran and tried to show people how to hula though I was not able to do much other than head and hand hula and I took video of Al trying to do foot hula and the kids loved everything and it was a nice day and I was pretty much a normal person - no stick or crutches nor lifts needed.