May 20th, 2013

The sun was shining again yesterday so I made the most of it, had a nice walk yesterday afternoon (video below with camera mounted on chair), then last night I decided to get in the van for the fist time in years. The van has always been a major trigger for my panic attacks so we took it easy, just a short drive round the block with a stop in B&Q car park for a couple of photos, it went well, some edginess and an achey chest, but no panic attack.
May 13th, 2013
I heard about Councillor Brewer’s comments earlier this year and to be honest it disgusted me and I didn’t understand why someone hadn’t punched him as the words left his lips, this man, at an equality and diversity meeting for the council, had said he thought children with disabilities should be put down!
I was very pleased when I heard he had stepped down as a councillor, then shocked, when I heard recently that he had been re-elected, you can read the story at the Disability News Service. I really can’t understand why people would vote for him, do I not understand people at all? I know a few must share his beliefs and some well known figures from history obviously have shared them, but for a large group of people in the modern ‘civilized’ world to vote for him really astounds me. Do the majority of people believe that spending money on keeping a beach open is more important than a human life?
Anyway Hayley from Downs Side Up has started a campaign to show that disabled people can make a positive contribution to society and are not just a drain on funds as Mr.Brewer believes. Hayley is an amazing woman and together with her equally amazing daughter who has Downs Syndrome, they fight to change peoples views of disability, using kindness and leading by example, her campaign fits this well, she wants people to share love and inspirational stories not hatred and anger, I really believe this campaign can make a difference and maybe my short post may help people think slightly too.
I would hope that I myself have given something back to society, I think I have, but I do feel some guilt in a way for using so much government money, I wish there was a choice, as I imagine most other people being supported by taxpayers money also do, but the truth is that the only alternative is death and that is something I will fight tooth and nail.
I really don’t like trying to make myself look good, it’s not in my nature, I also don’t do pity or self pity, so I’ll let others decide my worth by reading some guest posts I was asked to write for other blogs :-
Daniel’s Story – The Early Years
Daniel’s Story – Defying Duchenne
Daniel got out of his world…
May 11th, 2013
The weather has been quite miserable here the last few days so I was getting a bit fed up of being stuck indoors and decided even though the sky was a bit grey to take the dogs for a walk, I have a pole that attaches to my chair then to the dogs leads, very useful gadget.
We took three of our dogs, Mya, Kara and Peppa for a nice little walk down the road and a country footpath, unsurprisingly the heavens decided to open, the trees didn’t provide much cover so we all got slightly wet.
Along with posting my longer posts I intend to do more short ones like this, hopefully no one gets too bored with them.
May 8th, 2013
I have been meaning to do a post for a while, but things keep cropping up to stop or distract me, here’s a quick update.
The visit and the Green Tea Diva

Back in February my best friend visited from Manchester, we were both really looking forward to the visit, it hadn’t been a good year for Kylie and we both wanted a good cry over Matilda Mae, unfortunately things didn’t go as planned.
My GP sent for a random blood test, I still have no idea why, but the results came back saying my white blood cell count was extremely low, so low that at the first sign of being ill I would be admitted to a Neutropenic ward. I felt fine in myself, but everybody fussing around with tears in their eyes got me worried, I was really lucky to have Kylie around for support, things were discussed about how to get my count back up and the nagging started, being stubborn this got my back straight up, I really don’t like being told what to do. Kylie knew how to handle it though, she stepped in before I started arguing with my Nurse and Mum, we found things together that could help me and decided on a strict regime, I would drink Green Tea, Tomato Juice, V8 and 1000mg effervescent vitamin C, my GP put me on Complan too, these things are far from my favourites, I’ve always enjoyed cold drinks, Cherry Coke being my main drink of choice. She could see I was scared, something I don’t like admitting to anyone, she just sat by my bed reassuring me and being calm, that’s really what best friends are for, I wish we had got our cry and that I could have been strong and given her the support she needed, but as she puts it I was a “diva”.
Amazingly after just a few weeks on this diet, with regular nurse visits to take my blood, my white blood cell was back to normal, I have stuck to the diet and feel pretty good for doing so, I’m used to the tomato juice and V8 now, the Green tea still isn’t my favourite but it’s bearable ice cold with a squeeze of lemon juice and have also found it’s good at settling my stomach when I feel a bit ill.
This was also the month I got my first ever Valentine’s cards, and one Valentine’s ecard, they were no doubt from my carers, still a nice thought, I actually sent one too.
The Yarn Bomb Proposition

My best friend Kylie really is amazing, she came up with this idea as she wanted to give something back to the Muscular Dystrophy Campaign and do something special for me as well, you can read all about it on her blog, the basic idea is to get lots of supporters to knit or crochet items then decorate an area outside, the event will be sponsored and the items will be sold afterwards to make even more money. It sounds simple, in a way it is, but there is lots of organisation behind the scenes which Kylie is absolutely brilliant at, I’m really proud of her and grateful too.
She visited last week and decorated our front garden with some of the items already made, it looked pretty great as you can see.
The Beard

I have had an interesting couple of months, other than the above there has also been other stress, questioning of people close to me and strong emotions and feelings, I won’t go into it but the fact is over the last seven months or so I have changed, I’m more confident, I feel healthier, I’ve opened up my feelings and more, I like this new me but some people are struggling to get used to it.
The end result is I’m enjoying myself more, my stress and panic attacks are getting much less and I have been getting out in the wheelchair much more, I also accepted seeing a psychologist to help with my panic attacks, she is great and I made the decision to be honest and open up to her, it wasn’t, and isn’t easy, I like sorting things out on my own and have always been a very private person, but the time has come for me to change and overcome my fears, so I will.
Part of this is my new look, I’ve never wanted or liked beards but it’s an outward change to reflect the inward ones, I may not keep it for long, but for the moment I’m enjoying the compliments, apparently I’m quite handsome, who knew?!
February 9th, 2013

A few days ago I was on Twitter (nothing new there) and noticed a Tweet to me with no avatar, I looked and saw it said this
Nesta Roberts @NestaRoberts
@Daniel___BSc http://www.facebook.com/nesta.roberts.5 You’ve inspired me! Please check it out!! http://www.facebook.com/pages/Nesta-Roberts-Aesthetic-Nurse-Practitioner/276450962460971?ref=hl
Now me being me saw that it said I was inspiring, had no avatar and just contained links as a sure sign it was spam, I had my finger over the report as spam button and was just about to click, then a strange thought occurred to me, maybe this wasn’t spam? I clicked the link warily and up popped a picture of a beautiful young lady, obviously spam!
Fortunately I had the sense to tweet my best friend Kylie next, she quickly gave me a virtual slap and told me I was being stupid for assuming it was spam, those weren’t her exact words but suffice it to say I got a good telling off.
It turns out Kylie was right (as usual), Nesta, a person I have never met, had read an article about me online via the Muscular Dystrophy Campaign website and decided she would try to raise money for the campaign by doing a shark dive. So please consider sponsoring this amazing and brave woman by clicking here, I am very humbled and grateful that a complete stranger would, out of the blue, do this, thank you Nesta for raising funds for the campaign and also for making me feel very special.
Sponsor Nesta’s shark dive on JustGiving and help raise money for the Muscular Dystrophy Campaign.
February 1st, 2013
I haven’t written in a while again, no excuses I just haven’t felt in the right mood, so why write something now? Well all the news of cuts to benefits has been going on for a while, but I see many working people struggling so don’t like to make a fuss, don’t get me wrong I rant and moan to my friends like everyone else but just get on with life, I’m not starving, I have a roof over my head, life isn’t perfect, but then is it for anyone, except maybe the one per centers?
But this week there have been rumours of benefits being given on pre-pay cards in the future, this is worrying, my initial thoughts were of the privacy implications, why should the government be able to track what I buy and where I buy it? Will they sell this information on too third party companies? How will they maintain security of the database? Even if you accept the government should be able to track you (which I strongly disagree with), what about selling the data? You may think they won’t but this is a goldmine for advertisers and market research companies, the government will not turn down that kind of money. They will anonymise it no doubt to calm the masses, but anyone should realise this doesn’t work, internet browsers are a prime example, you can turn on ‘do not track’ and turn off cookies but the big companies still know who you are and pretty much where you live too.

Then I realised it was much worse than this, they want to stop you buying ‘luxuries’ with your benefit money, in principle this sounds reasonable, but when you think about it it becomes pretty scary, can you buy Birthday or Christmas presents for friends or family, is this a luxury? If you only like a certain brand of food but another is cheaper is that a luxury? Alcohol is obviously a luxury (I don’t actually drink myself), but alcohol is also part of socialising for most people, should they not be able to meet friends and have a drink at the local pub? Are holidays a luxury too? Buying music? You may think I’m being over the top but mentioned in the proposal is pet food, so can we not own pets? I have pets which I care for very much, they offer companionship, love, something to make the effort to get out of bed for, one of the main reasons I fought so hard to get a wheelchair (which had to be paid for by donations and charity) was so I could take my dog Kara for a walk. Pets have also been shown to reduce stress, surely it’s cheaper buying pet food than for the NHS to buy extra anti-depressants and anti-anxiety medication isn’t it?
The list of reasons why this is a bad idea could fill a book, but I really don’t want to write it, so I’ll mention bedroom tax instead, I don’t have to pay it as there are two people here and we have a two bedroom flat (although we were ‘accidentally’ sent a letter from the council saying we would have our benefits cut), but say I had three bedrooms, why can’t I have this, shouldn’t I be allowed to have friends and family visit and stay with me? What if I wanted an extra room for my carers to stay in, I don’t particularly like having to let them sit and sleep in my living room, I’d like some privacy, but I’m pretty sure that as they don’t live here I’d have my benefits reduced.
It seems like the government want us to sit in a room day in day out with no reason to go outside, no socialising and no real quality of life, what’s the point of living like that? You may say get a job then, that’s another issue entirely though, I can’t get a job, no one would ever employ me it’s just not practical, so my options will be have no quality of life or….well I don’t really see any other option.
I don’t like complaining, the state and taxpayer’s money supports me and keeps me alive, I truly am grateful for this, I also feel guilty and it hurts my pride that I can’t pay my own way, but I can’t and there is nothing I, or medical science can do about it. Despite this I do still feel I deserve to have a life, I give back where I can offering friends, neighbours and family computer advice, volunteering with projects such as NASA World Wind and the SBTF when I can, or even helping friends children pass their GCSE’s, it may not make up for what I suck out of society but I do try. Then there’s the rest of my family, I’m the only one with a medical condition that stops me working, they all pay taxes, surely that counts for something.
This isn’t just about me being worried about my future though, I’ve spoken to others with medical conditions that mean they rely on benefits, they are good kind people, why should they be treated like this? Yes there are scroungers, I even know some, but the majority of people on benefits do need them, even government figures put benefit fraud at less than 1%.

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