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

Angry at MSA.

on July 1, 2013

Sam's listSam:
Monday 24th wasn’t feeling so great, a jaunt out to the doc…shock. It’s MRSA so this week has been one consisting mostly of sleep, carers, nurses and then a hospital appointment, another hospital appt on Friday 28th, when I was diagnosed with sleep apnea, quite common in patients with MRSA but still a shock when they tell you, explains a huge amount though like how I can fall asleep eating a meal now and my dreams are so vivid and despite the amount of sleeping I do I’m always, always so tired!

On Wednesday my friends and (old boss) Rose and Fiona came for a visit, it made me realise how much I miss my job, miss working with vulnerable women and sometimes watch them grow into confident women ready to take the world on again.
I hope it’s not so long before we meet again, we definitely should make more of an effort!

That goes for everyone though doesn’t it? You don’t have to wait until you’re dying or your friend is dying, pick up the phone before you never ever have that opportunity again…..we are all guilty at times of not admitting our mistakes, god knows mine have been many.

Rhanna is now on school holidays and I’m really glad (next week maybe not so hehe) but at least I can spend some valuable time with her AWAKE.

I’ve made new friends through the blog so hello to you all and if you are thinking of starting a blog, then do it, do it today once you have finished reading this obviously it becomes like a diary and a way of saying quietly what you may be afraid to say out loud.

Rhanna and her cupRhanna won a cup at school for outstanding achievement, she’s my outstanding achievement but I do not need a cup to tell me that, I have her with me in my heart all the time and although it may well be growing weaker its beat will stay strong for my family xxxx

I have started an online auction to raise funds for the MSA Trust. Please have a look at my auction and share. When you are on the page you can click on the photos for a description and the current price. Thank you.
Happy birthday to my mum and my little sister, love you both xxx

Mum’s been diagnosed with sleep apnea which means she stops breathing for very short times and also explains why she acts out her dreams and all the other things she does at night, I feel awful laughing at her dreams though but we never knew she had that. It also explains why she sleeps so much during the day, and I mean deep sleeps.
Way back when mum and Andy told me about mums MSA never in a million years did I ever think the changes would be so quick.

That’s us on our summer holidays now yippee and in my last blog I had written about going to Iceland with the school in December, it costs a lot of money but I feel I have to say that in no way at all was I asking people for help towards the trip, my Uncle Iain and Aunt Lesley gave me £50.00 and although oh goodness that’s amazing, if the trip is definitely going ahead well ‘where’s there a will, there’s a way’  I’d much rather my mum got my place but she can’t travel so easy and I don’t think she would want to go with a bunch of 6th years hehe, although all my friends love my Mum!

Mum and I are thinking about little “us” time and looking at different spa places, there’s so many deals online but mum is a creature of habit so we thinking maybe afternoon at Stobo Castle.

Sam asleepHonestly and this is the truth, even though mum and I stay in the house it actually feels like I’ve hardly seen her because if there are friends in, mum falls asleep so quick that I don’t actually see her and everyday after school I come home it’s the same. I feel awful for being angry about that but I am, not at mum but at MSA, it really is robbing us of time, my mum is my very own Sleeping Beauty…. MSA is her curse and if only a kiss from the love of her life, Andy would cure her…how would that be for a happy ending.
Love you mum all the way to the moon and back again xxxx xxxx xxxx xxxx

P.S This is a massive thank you to Hazel just because you make me laugh hehe.
Oops I forgot PLEASE, PLEASE, PLEASE contact me for mum’s address if you haven’t already done so for to send a birthday card, a small gesture but will mean the world to my mum, my email address is I promise to answer everyone xxxx 


One response to “Angry at MSA.

  1. wilma0750 says:

    Samantha you are just awesome and couldnt ask for a nicer daughter you have done done yourself proud regardless off your illness , it just needs a good kick in the arse if only hen luv u infinity and today was just the best thank you sooooooo much for the much loved pressies xxxxxxxxxxx

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