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

MSA – pulling us apart

on November 8, 2013

Andy and sam
So since my last blog I received over 91 emails about the subject matter I wrote about really lovely, really sad and definitely mostly agreeable.

1 friendsWe finally got the chance to meet Paul Bellars and his lovely kids Rachel and Andrew! They travelled up from Peterborough to stay in Falkirk for a few days so that we could meet and spend time with them. I will forever be grateful that they made their journey and I really hope they come again, we had a great time, even getting soaked in the rain didn’t dampen our spirits! The memories made in just a few days will last forever and a friendship definitely set in stone!

As you all know with MSA you can have those great days, then you can be reminded that MSA is still there lurking in your life. Since Saturday my voice has been barely a whisper, no sore throat or anything like that just lost my voice! Andy said it was because I spoke too much over the days before that with Paul, Rachel and Andrew lol! So it hasn’t improved any so I toddled to the doctors who tried to be really positive, said he couldn’t see any sign of infection in my throat but my back glands were slightly swollen so there is a small chance it could be something like laryngitis, or it could be a progression of the MSA, we have to wait and see what the next few days bring but needless to say I’m incredibly frightened in case my voice remains like this, I could cope with a slurry speech if that came back.

Since I lost my voice, I apparently have also lost my senses because people are:
A – shouting at me
B – whispering back????
C – bending down to my height so I can lip read
and D – treating me very differently than before!
Even my mum was the same but she said in her own ‘Wilma’ way, “don’t know why I speaking to you like that hen, it’s no like your f****** daft awe of a sudden” and Isobel my adopted and very loved auntie said to me “you’re still the same person inside darling, nothing can take that” thank god for those two, I love them both very much they are a bit like Cissie and Ada. The two female characters played by Les Dawson and Roy Barraclough hehe.

I’m not sure if I will be able to cope if my voice remains like this, I don’t want it, it frightens me on a scale I can’t really put into words. So after that hammer blow Andy returned a call on Monday morning after someone leaving a message on our machine, it was about the much dreaded, not wanted hospital bed, could they deliver the bed that same afternoon! Very obviously not as we have a double bed in our bedroom, we needed to buy another single bed for Andy and try to get our double bed away!

1 AndySo after Friday we will be in separate beds, MSA pulling us apart in the cruelest of ways, there is nothing more reassuring to me than my loveable, adorable funny husband cuddling up with me at night, his arms wrapped around me making me safe and secure, it’s an awful thought and as I write this I’m in bed it’s 3am and just that little bit there that I’ve written has left me hiding my tears, it’s such an unbearable thought for me and maybe that’s stupid and people can say we can still cuddle but it’s not the same and I can’t deny that’s this is hard, really hard. Also although not the end of the world is the cost involved, a new bed for Andy, new duvets! sheets and duvet sets. Thank you mum for stepping in with the cost of the bedding leaving us just to get a bed.

Rhanna has been a star and she deserves that title she really does! She is just an amazing young lady with grit, determination and total devotion, not just to me but if you have her friendship then you are lucky because she will stand side by side with you through the good and the bad times with no thought at all about herself. I have to thank the very beautiful Karen from Zuri boutique for the help and the trust she has in us letting us take things home to try on and advising and helping me with clothes! We are the same as everyone else and feeling the pinch of the cuts and then Christmas isn’t far away and Karen has been a godsend!

1 flowersWe also received the most beautiful flowers from Alex and Tanya from Caledonian Cars, thank you so much to both of you, they are beautiful! Another thank you, this one to Linda Lemay who sent over lovely cards and stunning earrings for us to sell on the auction site or event, the next one is 16th November at the wonderful Ochils coffee mill selling handmade cards and gifts and anything that is donated to us…a little hint 🙂

So all in all it’s been a very up and down bumpy time but as always we pick ourselves up, brush ourselves down and look forward to the next day!
With love Sam xxx

Fireworks, they look beautiful don’t they? They can be mesmerising and magical, there’s been loads of fireworks in the last few days and the reason I mention them is because they are like my mum, beautiful mesmerising and magical.

She lights up a room when she enters and when I’m older I hope to be like her. She gets hurt but forgives, she gets let down but forgives, infact I can’t think of anyone more forgiving than my mum. I think if you have that trait then you can’t really go wrong but sometimes you can’t forgive somethings like MSA. Mums lost her voice so she has to rest it for a few days which if you know her is funny to watch because you know she dying to say something hehehehehe 🙂 We are hoping it is a virus and her voice will come back but we just have to sit it out and pray for the best possible outcome.

1 costumeShe’s still sleeping loads but she says no she’s just resting her eyes! Like mum will have written we finally met the Bellars family, I was so busy with school stuff and other things already planned so I didn’t get to spend as long as I would have liked with them but we went for a meal and Rachel, Andrew and I just gabbed the whole way through. Mum said there’s a train to Peterborough lol anyone would think she wants rid of me, although I know she doesn’t.

We got lots of letters after the last blog, there were emails from people who wanted to know how I felt and did I understand, we answered them all as honestly as we could and yes I fully understand and I only want my mum. But I don’t want her to be left unable to join in because then she wouldn’t be my mum.

Do you know it’s only 7 weeks till Santa pops through your chimney yippee it’s our favourite time of year, not because you get gifts but just because in general everyone is happy and everyone comes together, it’s fab and it’s what Christmas is about. Right I’m off to school, getting picked up today from my friend who just passed her test like two days ago!!
Love you mum all the way to the moon and back again Rhanna xxxx xxxx xxxx xxxx

1 chick


6 responses to “MSA – pulling us apart

  1. wilma0750 says:

    Och well sumphy as u say its bin a rubbish week fer u thank christ fer the ipad eh !!! Whenthe doc sed coplete voice rest he really did mean it nae trying tae whisper u must be champing at the bit hen cos awbody kens u like a gd yap even tae ur weesell we jist hae tae hope it cums back am sure it will noo the bed a lot o fun can be had in a single bed cant it !!!! Noo am a cissie or doris lol cheeky bugger !!!! Luv u infinity hen oh aye an wot a nite we gon hae the mora at the awards cmon andy xxxxxxxx

  2. Judy Green says:

    Yes good luck Andy,you’re a star
    Love and prayers,Judy

  3. illa says:

    Just think of good things sam ! christmas is coming ! you have so many people around you giving you so much love ! as your voice as the Dr said could be a sign of larangitice ? (not sure abouth spelling ) watch nice funny movies ! dont tnink abouth sad things and your illness ! make sure you eat good to make your imion system strong .think positive .separate beds are much more comfortable ! get your hug before or after .no one life is perfect …enjoy life ..

  4. Wendy says:

    Are you all OK? It’s been such a long time since your last post that I am worried about you all.

  5. Judy Green says:

    Like Wendy said,it’s been a long time?Hope you’re all ok.I realise that writing your blog was a big commitment .
    Love and prayers,Judy

  6. Wendy says:

    Please let us know how you all are? I think of you each day.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: