A New Beginning for GirlGuiding

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For those not aware of the back ground to this. Guiding held a promise consultation early this year which gave the public and members of all ages, the chance to say what they felt our promise should say.

After first I was disapointed. Promising to serve God was something that was very important to me as a christian but the more and more I thought about it I realised that developing my own beliefs as a christian was something that meant far more to me than attending church, praying and reading a bible. I am a devout christian but I dont attend church and consider some things christians will tell you are acceptable such as sex outside of marriage, women priests or homosexual marriage totally acceptable. These are based on my experience of God as well as reading the bible. They are my own beliefs, not ones someone has told me I should have and I really struggle at times with this and cant be true to them.

I know many people are struggling with the “be true to myself” part and my initial thought on this was that it defended selfishness but then it occured to me that, as a guider and guide, the one thing I have always felt was most important about guiding was that it was the one place I was safe to be me. For so long our promise has taken that away from people and denied them what I hold dear. As a consequence of our not being true to ourselves by forcing people to commit to a God they dont believe in (or in my case a set of values far removed from my experience of God), has denied young people the opportunity to share their faith and explore what they believe further. I also think its intimidating for children who might be scared to open up and from a christian point of view, scares them away from the church.  Can I truly love my God when I dont agree with what a vocal minority of christians say I should?

Interestingly, today I attended assembly at the Catholic school my children attend and it was interesting to see the childrens responses to the question, What is God? The wide range of responses, maturity and understanding was amazing. Those children answered that question freely, based on their own experience of God, and every single piece was heartfelt. They were confident in their beliefs, something which as a christian adult I find incedibly difficult because im often made to feel my beliefs go against God.

Guiding has always tried to provide a safe space for young women and increasingly our role has become about dealing with issues effecting young women. As a unit we have dealt with peer pressure, celebrity, self esteme, bullying and probably loads of other things I cant think of. We have rewarded acts of kindness some times and explained to them why behaviour isnt acceptable at other times. All of these things that we do week in week out are teaching the girls that its ok to be themself providing that they help other people and are considerate of the needs of others in their Brownie community. If the promise is the beating heart of everything we do then being true to ourself is one of the most important values in it.

I think we all need to sit down and compare the new promise with the program and in relation to our own lives. I think it opens up a new chapter in relationships between units and churches which embrases the importance of being part of a community in the lives of those children. We need to teach them that they are loved and the door is open when they are ready to explore faith for themself rather than trying to get them into church when they have no interest in what is being said to them and theyd rather be somewhere else. Loving my God has little to do with going to church, exploring my faith has.

So what would my ideal future be? Id like to see the church community get more involved in the units, run events with the young people in mind rather than relying on them to come to church parade. Welcome those families on their terms. Ill never forget the visiting preacher who summed it up perfectly, Go through the bible and work out what Jesus did – yup, he invited everyone for tea. Walking into a church for the first time is tough, imagine walking into a room of strangers when you dont know the “rules”. Imagine instead walking into a room full of friends who you know love you. See the difference?

I have been involved in Guiding for 25 years on and off and find some of the media coverage disgusting. To say were “dropping God” is total nonsense, to say were turning into Nazis is libellous even. What Guiding gives the girls and the wider community is incredible. The hours upon hours we put in, showing the girls we love them for who they are, for no reward outweighs any negatives millions of times over.

 

 

Making Marks

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I have always loved drawing. As a kid I would sit and draw my ideal homes. They were never great but I enjoyed drawing them. Tonight, for the first time in a long time I sat down to draw. I had great fun the other day going around the shops buying new materials to try and tonight was the first time I’ve had chance to get my hands dirty.

I started out making marks with a variety of materials. These included pastels, graphite pencil, sketching pencils, charcoal and pens. I doodled and played around on smaller sheets of paper. After this I got out some bigger paper and had a play with larger movements, watching which materials worked well together. I then used what I had learnt to draw a tree using a combination of charcoal and a black soft pastel. It could of turned out better but given my starting point I’m actually quite pleased that I have managed to draw something that looks quite good.

Afterwards I started scribbling with some charcoal, these scribbles reminded me of grasses at the seaside so this developed into a sea scene. I paint a lot of seascapes but this is the first time I’ve ever drawn one and i’m thrilled with how it’s turned out. I used gentle strokes of charcoal to make the waves, graphite pencil to draw the sky and cliff and soft pastel to draw some sand in the foreground.

Tomorrow I’m going to have a look at ways other artists have used these media and others to draw different things. For day one though of a course I wasn’t confident in taking I’m really pleased.

Now to bed

Paralympics, the good, the bad and the ugly

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Today I took my kids to the paralympics. For me who has severe CFS this was a massive undertaking and the journey has taken a week as I can’t manage the journey in one go.

Recently I had my DLA cut from higher rate mobility and middle rate care to absolutely nothing as apparently, according to the guidelines “moderate” CFS doesn’t count as needing care. Bugger anything that says DLA is about  the individual. Every day i’m in agony, every day i’m tired and every day I have to manage what I do otherwise I hit the wall and can’t care for myself which as a parent who’s husband works full time and has a disability himself is a really scary prospect.

This summer I have spent 3 weeks in bed just so that I can have one holiday with my children. Due to my lack of blue badge and road tax exemption the money i’ve had available to make up for this has been cut drastically. My 6 year old daughter is my carer, making sure i take my meds and reaching for the snack foods and strategically placed water bottles when I am too tired to get them food for myself.

One comment which stuck with me during the opening ceremony was about the wheelchairs available to competitors. They pointed out that people in the uk had much better access to good quality wheelchairs but I don’t buy it. The voucher for mine was for around £200 – the average sports wheelchair over £1k. There is no way i’d ever be able to afford that chair – even if I still had DLA.

Yes the games were inspirational and yes I managed the day on my feet (thanks to tramadol and gabapentine) but the pain i’m now in makes me angry. I’m dreading tomorrow when i wake and can’t get out of bed and rely on my 6 year old to bring me my tablets.

The 100 yard rule needs scrapping. what flaming use is being able to walk 100 yards? woo hoo you can get into the supermarket, can’t shop there but you can get through the door! We are shafting a whole generation of paralympians who maybe think they either aren’t disabled enough or simply can’t get the funding to train or get equipment.

This week if i’d of still had my DLA i’d of brought a careworker. someone to help me with my meds and with the cooking, someone who could push my wheelchair and someone who could of helped me on the trains. Yes I managed but the pain in the morning is going to be something else.

My DLA paid for my painkillers, now it’s a struggle. It shouldn’t be like this……

DLA – Pick up your bed and walk!

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In March of this year my DLA was reduced from middle rate care, higher rate mobility to just lower rate care. I asked for reconsiderations and the award stayed the same. Having gone to my MP I got another reconsideration and my award was reduced to nothing – all because according to their medical services “moderate” CFS doesn’t cause someone to need care. So much for DLA being about how someone’s disability effected them individually.

What gets me about this statement is that i’ve had “moderate to severe” CFS for the past 5 years and have never had a problem until now. I’ve checked the CFS scale and at my best i’m in the worst 70% and and fluctuate between that and the worst 80%. This of course is without taking my fibromyalgia and back problems into account.

Most of this of course is based on a deeply flawed ATOS medical which focused on joint weakness and pain which at 3pm ain’t that much of an issue. There was no mention of the CFS during the medical and in the section about fluctuation it says “none stated” yeah because I wasn’t asked. I was even penalised for being able to get into my MPV to pick my daughter up from school. The fact alone that I had to get into the car to pick my daughter up from school less than a mile away and that I used a wheelchair to go a couple of hundred yards from the carpark was irrelevant. I have a strong pincer grip and could get off a low sofa briskly erm see me in a few hours mate when Adam has to get me off the dam thing because i’m too tired to move.

There is no mention of the sudden sharp pains in my back, hips and legs or dizzy spells which come out of nowhere and cause me to fall. No mention of the crippling fatigue which makes everything I do a challenge and force me to spend time in bed whilst the girls are plonked in front of the telly, no mention of the panic attacks when i’m tired and things are getting on top of me, no mention of the depression caused when I’m unwell for weeks at a time and don’t see a soul.

Needless to say I am complaining about the report because it’s fundamentally flawed. Way too many “none stated” bits where i’ve not been asked the question.

I just feel like i’m being treated like a criminal. All I want is to be able to live comfortably and when I’m well be able to work. I’m limited because I can only concentrate for short periods of time so work as a temporary nursery assistant for an agency which means I can pick and choose hours around how i’m feeling. I work a couple of hours a day when I can and sleep at least 2 hours a day on a good day and up to 6 hours a day on a bad one. Even if I don’t sleep I spend 5/7 days a week lying in bed unable to move for several hours. I rely heavily on my daughter to fetch and carry and on my husband to cook, clean, push my wheelchair, help with my medication and to help me in and out of the bath. Apparently according to ATOS guy a bath stool would mean I could do this independently! Again I wasn’t asked about this, I pointed out that the lack of grab rails in the bathroom meant I couldn’t get in and out of the bath safely – what relevance does a bloody bath stool have? I have 3, bloody useless if you can’t get in the bath to sit on the sodding thing in the first place.

He mentions the fact that I wasn’t in any pain or discomfort, yup well there’s a good reason for that – I was up to my eyeballs on the highest dose of gabapentine and codeine possible. I restrict my activity and my husband supports me with my medication so that I maintain this level of mobility. Without this then I would be bent double most of the time in agony which would in turn make my CFS worse as I wouldn’t get the rest that I need.

So just like that I have no DLA whatsoever and in fact I have to repay 3 months worth potentially and all because of a report from a GP who meant me for less than an hour. Cheers!

 

My Girls

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Since Caitlyn and Clara were born we knew something wasn’t quite right. Clara would get excema, Caitlyn had reflux and they never settled. It took me 6 months begging the GPs but eventually I got a referral to Leeds General Infirmary. Within minutes of them being seen by the paediatrician they were diagnosed with a milk protein intolerance and were given prescription formula. 

Things were fine until we started to wean them. They suffered from chronic diarrhoea and were constantly sent home from the childminder as a result. Caitlyn was growing slowing and wasn’t well much of the time. She was tired, grey and permanently bloated – Clara was better though not by much. We kept begging the paediatrician for help and for over a year was told it was “just toddler diarrhoea”. The girls were discharged and were left to deal with it – Cait still bowel incontinent. One day I lost it. Cait had been sent home from the childminder yet again and I rang the doctors demanding an appointment. Just before we went in Caitlyn exploded everywhere. The GP saw it and the colour in her face drained. She helped me to clean Cait up and referred her straight to Harrogate. 

Harrogate were great, The consultant agreed that this was a serious problem. Cait was just weeks away from starting nursery and was effectively incontinent. Elemental diets were discussed and food diaries started. We were referred to a dietician and I felt for the first time we were being listened to. After a few weeks we hit a breakthrough and realised that it was chicken causing an issue. The moment we cut out chicken and eggs the diarrhoea stopped and so did the accidents. She grew 4cm in 6 months and is so much happier. Other than a bit of constipation, reflux and bloating Caitlyn is doing really really well. 

Clara was referred to a general clinic at the same hospital however and I’m not impressed. We were fobbed off with them saying there was nothing that they can do other than work out what’s causing the reaction and excluding it and I don’t need their help for that. I kind of see the point but having a name, a formal diagnosis, would help us explain to people what is going on. 

Part of me is angry and dreads to think what long term damage has been caused by the original consultant fobbing us off. I fear that they might become intolerant to more foods and end up really poorly as a result and I fear that one day they will eat something which will make them very very poorly. The trouble is we don’t have a firm diagnosis – only a suspicion that it’s a rare condition and the only consultant who understood has retired. We don’t know how much if any damage has been done but they only way of doing that is surgery which is pointless when things are under control with diet. 

I have questions but I’m not sure who to ask when it’s only a suspicion. Do I ask for a referral elsewhere and try and get my questions answered? Do I hope the new consultant knows enough not to fob us off again. It’s so hard 😦

 

 

Campaign for More Disabled Characters in RPGs

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All this talk about sexism in RPGs recently has got me thinking, where are the disabled characters? Where is the amputee thief, the blind cleric, the deaf dwarven warrior, the dyslexic assassin? They don’t exist.

As a disabled person I wonder if the game represents us? Is our exclusion from the artwork and miniatures enough to deter us from playing the game?

I’m sure most people with disabilities would laugh. In all honesty how the hell is a quadriplegic elf or a white stick wielding fighter with hearing aids going to realistically fare in a mythical dungeon! It’s totally ludicrous. Do I therefore want Wizards of the Coast to include disabled people in their artwork? Of course not – it would just be stupid and who wants to be reminded of their problems anyway? It’s a game, its escapism and it’s something I enjoy for that reason.

Part of the joys of role playing for me is that you can create your own character. Nothing from what I’ve seen stops women playing the character they want to play. Yes there are some men who play the game who might deter women but they are individuals and to me are more indicative of society than they are of the game. Are we saying that adding characters with downs syndrome will stop someone calling the idiot who bursts into a dungeon without a trap check a retard? Of course not, it’ll make naff all difference because it’s got nothing to do with the game.

What I find more intimidating than a group of blokes sat around a table is watching supposed “geek” women who are all blonde haired, white and skinny – a stereotype which I do find frustrating. These women are all put on a pedestal and the moment anyone criticises them petitions are launched, those who do the criticising are threatened and anyone who defends them is seen as bad as that person is – even if the defence is purely on an intellectual level. If you criticise these women you are a bigot, end of, no debate, and no discussion. How mature.

In short I don’t care about the art work, I don’t care about bigoted comments all I care about is people enjoying the game for what it is, a game and most importantly people being allowed to voice an opinion without fear of loosing their jobs or receiving copious threatening messages on twitter.

Adam told me not to write this but I wanted to. He’s been so upset lately by all the stupidity and it’s taken a lot of the fun out of something he really really enjoys. I’m angry too. I’ve spoken to a lot of my female DND friends about this issue and we feel more and more alienated from the game by so many so called feminists. I am a feminist, I choose to live my life in the way I do – society not my husband can take that away from me. I choose to wear the clothes I do and I choose to play the characters I want to play. The definition of sexism is to treat one sex with less favourably than the other. Do I feel DND treats women less favourably than men? No I don’t. Do I feel that by being forced into having certain opinions because I am a woman is treating me less favourably? Yes I do.