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

Growing up with MSA

on September 3, 2013

Rhanna and Sam on the trainSam:
First of all I have to say how sorry I am that I haven’t written my blog in a bit. I found myself at a point where I just couldn’t cope anymore, I wanted to crawl into bed and hide from the rest of the world, hide from MSA. I receive emails every day without fail and I always answer them all back, then at night I’d cry for all those people then I realised…I was one of these people.

Rhanna is now back at school for her last year and she’s turned into a much stronger person, she’s so grown up about MSA, I don’t know if a lot of it is a front but whatever it takes to get her through is fine with me.  We spent the summer completely as a family, having visitors, going visiting when I could and just cherishing the life we have as opposed to what’s to come.
Please don’t get me wrong, there has been many, many times where I’ve really thought I’ve had enough, yet you continue to find another reason why you can’t get give up. Good lord that all sounds quite depressing, those of you that know me well will know that I’m not like that, well not all the time!

Because of the enormous amount of drugs I take I sleep a lot, but the other thing that has happened to me is my kidneys are stopping working, all the infections, the toxins from the medications so I’ve had a very hard time dealing with that and I know you will all think I’m very shallow and vain for my next comment but I have to tell the truth, I really hate how I look now, I hate the very sight of stomach, the trousers I can’t fit into, I have never been this size in my life and the belief from Andy, my mum, Rhanna etc is not there because I see it. I’m meant to be getting Botox injections at the end of the month and yet I can’t find anyone who has had it done and it benefited them?

Sam and AndySo enough depressing news…We were extremely lucky to be offered a trip of a lifetime by The Willow Foundation who organise trips for people like us, well I couldn’t think of anything I really wanted so we let Rhanna choose and she chose Harry Potter Studios just outside London!
Rhanna in Harry Potter cloakRhanna loves Harry Potter and Emma Watson is her favourite actress with many people saying there is a likeness between them. Harry Potter is not my favourite thing but in for a penny, in for a pound! We all LOVED it, honestly it was great! We stayed in the most beautiful hotel The Shendish Manor with stunning grounds and rooms and the food was incredible. Rhanna had emailed ahead without our knowledge so there were flowers and wine in our room and the chef had prepared a special menu just for me! Our journey home was not without its moments but in no way would we let it ever blight our time and we can never thank The Willow Foundation enough. Oh and East Coast trains as well who upgraded us to first class free of charge!

So now it’s back to normality and organising what we plan to do next, our auction site does great, I’m astonished that the car hasn’t been snapped up by someone. Take your other half a romantic drive somewhere for lunch, treat them like the prince or princess they are!!!!!

Take the time to smile at someone passing you today, you could make that difference to them if they are having a bad day.
Take care and big hugs.

I can’t believe that I’m now properly in my last year of school…you have no idea of how good it is to write that down. I don’t talk about people behind their back and my friends trust me with their secrets, I was broken for a little while by someone who definitely wasn’t who they claimed to be but now through my other friends I know I’m better off. I really like most of my classes and I’m so glad to be back in classes with friends and some of my favourite teachers, makes things easier for sure.

It feels like ages since I have written anything for the blog but with my exams then the summer holidays then add in Waterloo Road as an extra and a small part in a series called Shetland with Douglas Hensall and then add in Hazel and Poppy it’s been a busy time!

I wish I could say that mum has been really good but she mainly sleeps a lot so on her good days we try and do something and on her not so good days we have a tv day. I miss the way mum used to be but I love the way she is now, she’s the same person but with a different perception on life and what’s important and it’s so very clear to me that when I grow up I want to be just like her, she has the biggest kindest heart who will always help.
She’s so funny as well, often without realising it and she is very kind to my friends and I…I can’t say what she’s done for one of my friends cause they don’t know yet but it’s fab!!!

Our friend Jaynah is hoping to organise a party night, I’m hoping she will/can change it to the Friday so my bestest friends can come.

Rhanna and Sam at the hotel We were on our way to London this time last week and we had an awesome time, I know mum is really tired on the back of it but she wouldn’t let anyone down especially Andy and I so now we just look after her till she’s feeling back on track again.

What do people thing of Dignitas and places like that? Mum and I have had that conversation, I never want her to suffer but I don’t want her to leave us any sooner than she needs to, we nearly have the website built and I have to say mum has done and amazing job on it but she needed a little break.
Mum tells me everyday be strong and don’t let anyone step on you, she’s amazing and the world would definitely be a whole lot darker without her.
Love you mum all the way to the moon and back again xxxx xxxx xxxx xxxx

Rhanna and Sam at the hotel

6 responses to “Growing up with MSA

  1. annaw53a says:

    so pleased you had fun when you got away, keep your chin up you are so strong, love you xxxx

  2. Heather Buckel says:

    Sounds like you all had fun on your trip. Mick had a Botox injection but only a very small dose because they were worried that it might affect his breathing. He goes back to the urologist this Friday and hopefully they will offer another injection as the first one didn’t really work and he now tends to have an accident at least once a week, because he can’t get to the loo quick enough. Keep strong lovely ladies and take care xxxx

  3. wilma0750 says:

    Well hen its been a very hard month or so dont mind telling u its been really hard fer u me andy rhanna id give my life if i thot it change u back cause sumphy i want the real u back even tho u get my back up sometimes id give my all jist fer that , anyway people see ma bairn its no often she leaveme speechless but she has an so did andy well let me tell uz wot they dun fer me n rhanna were off to corfu on the 13th o this month fer a week truly awesome cos how she managed to keep stumm ill never know an sumphy u know its not wot i wanted but fer u we will go u really r one hellava kid an am soooooo glad ur mine ur sister r awesome aswell but hey am allowed cos am yer ma , jist a thot torsten if yer reading this get sam tae explain lol ,u know wot tho we go through life thinking nowr can touch us well people try walking in sams shoes , i am sooooooooi proud off her an her strenght u go sumphy luv u infinity xxxxxx tae mini me rhanna u can still blow my mind with the maturaty that u show luv u zillions beannie an one fer the road here we cum xxxxxx

  4. Sam Crawford says:

    Hi Heather thank you for your response, I have the supra pubic in the injections supposedly stop the spasms? Haven’t heard anyone agree yet!

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