Living with Multiple System Atrophy. A life limiting, neurological brain disease.

Holidays, exam results, appointments and catching up.

on August 7, 2013

So it’s been almost a month since my birthday and what a wonderful magical time I had. I received 136 birthday cards and to those 136 people thank you so much, it meant the world to me but meant a whole more to Rhanna because it showed her in times of adversity people always come together to help and support. image-11

I would love to tell you that since my birthday I’ve been wonderfully well but that would be wishful thinking, I’m only awake now for very short periods of the days and fall asleep as though like hypnosis! As Andy is helping me to eat I fall asleep, I try watch my favourite programme, I fall asleep, 5 minutes in the car I fall asleep and its always a hit or a miss when visitors are here because regardless of how hard I try sleep will undoubtedly beat me…very rude!!!

It’s very hard sometimes to write about what your inner most thoughts are because you know your parents, family and friends will read it and of course you spend all your time telling them your ok.

I had an appointment with the hospital last week and the doctors were trying to figure out the spasms, the pain and the lack of motor skills. I sat and said I’ve accepted that I’m going to die but I can’t accept that I’m going to leave my family and friends. You know you get people who say that “I heard somebody lived 10 years” I bloody hate those statements, who would want to live ten years with so little ability, I realise that I bet a lot of you think that’s selfish but aside from what it would do to the person with it, the carer loses their lives as well.

Rhanna has been on summer holidays so we have had great times, even if it was just watching a film eating food we shouldn’t be lol. We went to the safari park with Rhanna and Poppy, it was brilliant, my party with Rhanna’s friends Hazel and Jaynah. In a small way it was so good for me to see her with people who will stay by her side. She’s been busy doing shifts with Waterloo Road and is has got a small part in a series coming up on the BBC called Shetland, she has changed so much in such a short time, its amazing but my baby has grown into a wonderful young lady.

I’m in the process of building a website (says 5 minutes) on it DON’T BELIEVE IT lol!! It’s for MSA more and auction site as opposed to using my Facebook all the time but Rhanna has done a page explaining MSA for the younger families who sadly became affected with this disease. We had the wonderful opportunity of catching up with Katie Rigg who gave us some great ideas and was as always just amazing!!

I do have the most wonderful news…we have a thing in Scotland every year called The Big Hearted Scotland Awards and Andy has been nominated for the big hearted carer award!!!!!!! Can you imagine that, all the people that were nominated and my amazing incredible hubby made the shortlist, he’s already my hero, I don’t need him to have an award to prove that, without him I have no idea how would any of us would cope.

The other thing I’m so incredibly proud of is that Rhanna passed all her exams, maybe this time she can get the cards lol, she worked so hard during a time where we all just found out and my baby was falling apart so to pass and with flying colours is the best thing that could ever have happened…so sometimes just know when you truly want success, you’ll never give up on it. No matter how bad the situation may get.

Talk to you next week 🙂

Sam & RhannaRhanna:
OH MY GOD thank you so much to the god of exams because I passed…yippee. I know I could have done better but with everything that was going on I cant believe it! My mum who always says she’s proud of me and was over the moon and if she could be jumping up and down she would be hehe.

We haven’t written on the blog and it actually feels quite odd because it really makes you see how quickly things change in such a short time, mum sleeps all the time and I worry so much about her even though she says I’m not to, I’ve been doing stuff with friends to and I’m really very grateful to two special friends, Hazel and Poppy.

2Rhanna and hazel      Rhanna and Poppy      Rhanna and Emma

I love all my friends although I like to keep a small circle you know you can trust forever and ever and then the same again hehe. My mum is like that too, she has lots of friends but only a couple of special friends.

Andy has been nominated for an award for carer of the year, mum said it should split between us hehe. We have been doing lots of things together which has been lovely and I have been busy with Waterloo Road and filming a series called Shetland with Douglas Hensall, its very exciting, just a bit part but everyone has to climb that step one at a time as mum says all the time!

Who knows Hollywood could beckon hehehe, I’d give it all back all my hopes and dreams if it meant mum getting better, she says watching me live my life and following my dreams is what her dream is anyway if that makes sense hehe, mum and Andy gave me a card for passing my exams and my first bouquet of flowers ever and money to do something.

None of that made me feel as good as my mums cuddle although when I woke up this morning and my room smelt lovely it was pretty amazing!
love you all the way to the moon and back again mum xxxx xxxx xxxx xxxx

3 responses to “Holidays, exam results, appointments and catching up.

  1. Nicky says:

    Congratulation Rhanna. You are amazing. I wish you every success with your filming. You deserve it. God bless you. xxxx

  2. brian smith says:

    Good to see young Rhanna has done well with her exam results, well doe to you girl, and an award to boot for Andy…..they say it comes in three’s, what next ???

    Been trying to send you a picture of my brother Gary and myself, but have not got a clue how to put it on this reply, still, I will have to get one of my children to do it for me another day, as they seem to know all about this stuff !!

    I remember Gary would want to sleep all he time, and we used to take the mickey out of him for it. As you say, one minute hes was talking, next he was zonked out. He always said it was the pills…plus the bottle of Budwieser to wash them down with , or a glass of Port !!!.

    Sam, I wish you all the bet best for what ever the future holds, and to your family. Family and strength is the key to this horrible thing, and obviously you all have buckets of it.

    Kindest Regards to you all.

    Brian Smith

  3. annaw53a says:

    good to have great news for you all love you xxxxxxx

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