Wednesday, 11 May 2016

My Blog Manifesto!

I love....

....My family, they are everything to me and this blog was set up to follow our life journey and record things along the way, good or bad. It's my way of sharing experiences. I never really expected for people to be interested but if they are then that's great.

I love sharing,  this year my daughter starts Secondary school which is going to be a difficult transition for us all. At the moment, Star is feeling calm and positive, I just hope that continues. There are lots of things we have to take into consideration and the journey is bound to be bumpy, but sharing is my way of dealing with all of this and I love having this space to do it.

I love my partner, I must do we've been together 15 years. This year I've decided to make an honest man of him and next month we are off the registry office to set a date for our marriage. It's not going to be a massive wedding but I'll let you join me on my journey.

Then there are the little things I love, our holidays and days out, our fun experiences and my mission to get the kids having more fun away from computer screens. I am always complaining that the kids spend too much time on their computers but now I realise that it's up to me to get them interested in other things. I accept that times have changed a lot since I was a child, but so many of my childhood memories are based on playing and having fun, I would like my children to experience this too. They do play but it's far too easy to just let them sit at screen while I get on with things. This has to change and computer time needs to be limited.

I Believe....

.....In spreading awareness about certain conditions that we have experience of which are Autism, Elhers Danlos Syndrome and Transverse Myelitis. I don't want to turn this into a medical blog (I already have one of those) it's just that these conditions play a big part of our lives. I want to share our journey of how we cope and live with these conditions and help others understand what it's like.

My daughter was diagnosed with high functioning autism and hypermobility syndrome at 6 years old. At 7 years old she had a subluxation in her cervical spine (neck) and this led us to two years of recovery including five trips to the operating theatre. Finally she was diagnosed a year ago with Elhers Danlos Syndrome type three, but now the geneticist thinks that she may have another type of EDS or Marfan Syndrome. The journey is not over and we also have the additional worry of her transition to Secondary school. I will log our experiences here in the hope that we might help others or at the very least it will be something to look back on to see how we managed.

On January 1st this year I went into hospital with pins and needles and ended up paralysed in both my arms and legs. My spine was inflamed and the coating of my central nervous system attacked. The condition is extremely rare but I was lucky that I had a consultant who knew to diagnose me straight away with Transverse Myelitis. I have regained some strength in both my arms and legs but I'm still using a wheelchair to get around. I can carry on improving for up to two years, but no-one can tell me if a full recovery will ever be possible. I'm finding my blog a great place to log my journey and raise awareness of this rare condition.

I Am Committed To.....

......Writing my blog from my heart. I've been here since 2011 and my blogging journey has taught me many things and I've met some lovely people through it. I've changed my mind (it seems) about a million times about what I want to do with my blog, but in actual fact I've come full circle and want to blog about the things that mean the most to me. 

This doesn't mean that you won't find reviews on here, or posts that I've written for someone else. I really do enjoy reviewing stuff, big or small and I like to inject a little of my personality into each one. 

I love receiving comments on my blog and I will often reply, but not all the time because I know that not everyone comes back to see replies. If you ask a question then of cause I will answer, if you write something that inspires me to answer then I will. I just don't believe in writing small stuff like 'thank you for your comment' after every one. I don't have a problem with that, but it's just not something I do. If I don't reply it certainly doesn't mean that I haven't read it. In fact a lot of the time I will come back and post a comment on your blog too just to let you know I've appreciated your comment on mine.

I will always reply to any tweets or messages on Facebook that  I receive so do contact me if you want to say anything or have a question. I'm quite happy to re-tweet or share for you too, just let me know. 

I appreciate how important it is to be part of the blogger community but I also appreciate anyone else who visits my blog no matter how infrequently. Thank you all for making it all worthwhile for me.

This is my little space on the Internet and I'm so happy you visited today.

This year I have reached the finals of the MAD blog awards. I'm stunned that people have nominated me and that's what has inspired to writing this post about why I blog and what my aims are. If you've enjoyed your visit here at any time then I have one more thing to ask of you....


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