A bumpy start to 2013

Sam:
2013 hasn’t quite started the way the we thought, I’ve been struck by constant UTI’s and infections in my wound from the supra pubic… So much for an easier life!! I don’t know if its connected or not but I have found myself sleeping more and more although kept awake at night by constant thoughts of what if’s, the constant pain in my body and well…lets just say night time isn’t my best time!!

We had a lovely Christmas and at new year we had a quiet but lovely time. I suppose if anything, we have been struck by how suddenly new symptoms appear, literally overnight my hands just won’t work, it’s like even though my brain is screaming at them they won’t do what I say, I can’t pick up my medication or a pen, things like that so although my hands are in very attractive fetching splints lol, so far no improvement!
Although its obviously a very physical problem it has affected me more mentally really, though I’m getting there slowly but surely. I think we have all been a little shaken about the recent changes but we will just take it as it comes, day by day! Thank goodness for the support from family and friends, never have we needed them more.

Very amusing Facebook highlight I have to share, I received a friend request from Olga Korbut, I accepted the request thinking she was obviously connected with MSA, anyway a while later Andy says to me “Oh my god your friends with Olga Korbut” i was like “yes?” Obviously Andy gave me that look that totally said “are you feckin kidding, do you know who she is” so with total disgust he informed me I was really lucky, she is an Olympic heroine, one of the worlds best gymnasts lol, all of a sudden the 10 year age difference became quite apparent hehehe, needless to say Andy now has Olga on his Facebook hehehe!!!  I can now honestly say I feel privileged by the request!

On a really positive amazing note on Sunday my mum and Ali came through with a very special person…Sharon, my friend from before high school, the one who helped me laugh my way through teenage years and took the blame for loads of our, ermmm, bad behaviour lol. I haven’t seen her for 16 years!!!!!
Although it felt like only yesterday…how amazing that even after all this time, there is still a special bond! We definately won’t be waiting another 16 years, lol! Giving my current situation that would be bit daft! Anyway it turned into a lovely day with all of us together and Anna came over for our dancing on ice night, her sense of geordie humour can’t fail to make you smile, she is my bright light if not slightly mad when placed in charge of a wheelchair etc hehe!

The Daily Mail article was fantastic and helped to raise much needed awareness, by the end of 2013 I hope we have managed to spread awareness and make people much more aware.

So it’s been a very up and down bumpy start to the year, we have four appointments this month with a variety of specialists so who knows what will happen next but with Andy, Rhanna and everyone else around me I know I won’t be fighting this alone, that makes me stronger and more determined to keep facing forwards. Hugs to everyone!
P.S I got my very own stitch!! “As Elvis himself might put it, you can’t help falling in love with lilo & stitch”

Rhanna:
Thank you to everyone who have really kindly take time out to read our blog, you really do help us and its so nice for mum to be contacted by so many people who are in similar circumstances to us or just want to help.

Mum has been quite poorly since new year and sleeping so much, in fact she falls asleep mid conversation so you have to be quick! She also says things that make no sense but are really funny, she often thinks things have happened that haven’t or starts talking about something that is nothing in relation to what we are doing. Even as I’m reading this back it hard to understand and hard to describe?

It’s been really hard for us all because mum’s hands aren’t working properly anymore and she is finding it really hard to come to terms with that but she pretends it’s all fine. We’ve spent some really nice time together cuddling up watching telly or just yapping which has been really awesome.

We also managed to go to the shops today and spend our christmas vouchers, it was so fun just picking up stuff in River Island and not looking at the price 🙂 so even though mums been poorly we have managed to spend time doing things, we went to an amazing Indian restaurant on New Year’s Day it was very yummy and my dessert was more than yummy hehe!

I think we all know that mum hasn’t had the plateau thing we keep waiting for but we have to keep heading forwards and doing all we can, to us we can’t stop and in lots of ways we are very lucky, the article in the Daily Mail was really good, from that we have been contacted by other people who want to help.

Back to school tomorrow yippee please keep us in your minds and hope that mum gets better as we go further into the new year.
Love you mum all the way to the moon and back again xxxx xxxx xxxx xxxx

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