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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
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?!  |
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