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

Light a candle for MSA Awareness Day

on September 27, 2013

Well I haven’t been out this week, unless you count the doctors and the hospital, visitors have been few and far between as well, mostly my fault as I’ve been feeling poorly.
Andy’s parents have been over and Anna, Nicola and of course Rhanna and my mum came back from Corfu on Friday so I got my baby back! They had a great time, relaxing without the constant worry about me and please believe me it is a constant worry as you will all know.
I never realised how much I would miss my mum and Rhanna when they were away but I missed them loads….having MSA means you never want to be away from your family for any length of time!

The nurses are fantastic they come in to clean and change dressings and anything else that’s needed. The carers are not like what you see on those programmes about terrible care, they actually are really kind, well mostly apart from Fiona who bought 8 Viennese whirls and ate them herself!
Worse than that her poor daughter Sarah thinks she doesn’t like them cause when she was little Fiona told her she didn’t like them and the poor soul still believes her!!!! HANG your head in shame FIONA!

When you have MSA there’s a certain pressure on you that makes you feel you have to do something, raise funds for a cure and research, the pressure is only from yourself absolutely no one else is saying it, you just feel you need to help! We have raised a lot of money, our just giving target is £10,000 we are about £600 short and I wish with all my heart we had reached the goal already as I’m very tired but we will reach the goal then take a break to spend time together as a family, we have actually raised it with gift aid and our other page for Iain’s run but I so desperately want to see my target reach 100%!!!

Someone very, very special jumped into our lives and has helped in more ways than they’ll even know and we thank them forever. I sleep so often now (I can fall asleep mid conversation or when we having dinner) I forget what day it is, some days I’m understandable, somedays I’m not, you know what I really want to do, I want to dance, I know I can’t and never will but it costs nothing to dream and sometimes it’s clinging to those dreams that make you cling onto this life.

peventRhanna’s friend and actually my friend (like a niece) Jaynah has arranged a charity night for the 4th Oct and I hope its a huge success for her, I know she’s doing it for us and the Trust, fundraising is not easy, it takes guts, determination and confidence and she has them in bundles.
Our niece is walking up Ben Lomond with her crew including her dad Iain and co to raise funds, her work have said they will match what Kayleigh and crew raise as they picked the trust for their charity for a year, that’s thanks to our beautiful Kayleigh.

I have awful bedsores, I actually have to lie on my sides as it Hurts so much, so glad I got the “pressure mattress” months ago! Antibiotics and morphine should be my middle names.

We bought a photo frame months ago, a collage one with 20 spaces or something, anyhow it’s sat and sat and sat in the bedroom until the other day when we thought time to put pics in that, I love photographs, that tiny moment in time and Sam and familytake my camera everywhere, anyway back to the photos, I don’t quite know how to explain this, you see all our photos are in folders on the computer and when we were looking at them all I could see was a change sometimes very subtle, sometimes very obvious in me. The most obvious being is that I’m not standing in pics anymore, my old life is well and truly gone and although my new one still has the same people in it, on the whole it’s obviously very different and we all know…temporary. It still remains heartbreaking and hard to come to terms with.
I’m not brave or anything like that, I cry silent tears as I turn myself inside out working out how Andy and Rhanna will cope emotionally and financially, I didn’t have insurance cause we all think next week, I’ll sort that next week!

My mum, I worry about her she’s a bit like a sweetie hard on the outside, soft on the inside, Ali who you can read through his eyes and Andy’s parents who I adore truly. I could sit and type about friends and family all morning…

Oops, I nearly forgot I think the Botox is working!!!! There’s a definite difference and although I still get a spasm it’s nothing like before!! I cannot begin to tell you the difference that has made bodily and psychologically! I’m no longer afraid of the toilet, I look at it and say “bring it on loo” ” I’m stronger than you!”
So my incredible family and friends, “if you feel like giving up, just look back on how far you’ve travelled already” love and hugs as always Sam xx

I just had a holiday with my granny and it was amazing we had a really good time but always at the back of my mind was my mum, was she okay? I texted every day and if she didn’t text back right away I would start to worry not thinking she was probably sleeping or doing something so I would text again and then I would get an answer and I felt like I could breathe properly again! I was so excited to come home and see her and the feelings of relief when I saw her I can’t describe. School has been better and my subjects are for sure better, no more maths hehe!

Sam and friendsMy friends are all awesome and stand by me even when I’m not myself and I’m so glad for Poppy, Hazel, the twins and Kirsten they all would be ready to give me a cuddle if I need one.

Mum was looking better for a little while cause she was on a steroid drug it made her look a tiny bit puffy but she looked well. She’s starting to look not so good anymore and she’s waiting on a hospital bed now, she fought really hard against it but I think she knows now that it would be better for her, she’s very frightened Andy won’t love her the same, we talk when she’s in bed and she told me that Andy was her gift, he taught her how to enjoy what she had and taught her to smile again, I told her she should tell Andy that but she just said to me that I’ve never to settle for less than that, that I’ve to wait for my prince, I hope she’s still here when that happens. I’m in no hurry mum so you will have to hang on in there for a good while. : )

pickmeupOur story was in that’s life magazine and hopefully it helped some people. My friend Jaynah is organising an disco on the 4th October one day after world MSA day when everyone lights a candle for an hour at 8pm please do it and if you do take a picture and send it to me let’s show the world that awareness is growing and MSA will be beaten one day.
Mum sleeps so much and she feels so guilty but it doesn’t matter mum, as long as you here you can sleep as much as you need to. Love you mum all the way to the moon and back again xxxx xxxx xxxx xxxx

Sam and Andy
candleIt’s world MSA day on Thursday 3rd oct, please join the MSA community and light a candle at 8 pm we have to keep trying our hardest to raise awareness, one year ago we had a little gathering in our house of friends and family we all lit a candle and took a quiet moment to think to ourselves what lay ahead, sadly some of those so called friends who claimed to be there for us are no longer part of our life, when the going gets tough…who needs friends like that?!

During the course of the year we have struck up some really good friendships with others, folk with hearts of gold, people that care, people that mean what they say, the kinda people you need in a crisis, god bless them all.

Sam had her Botox injections and they definitely are helping, clear one hurdle and up pops another!! I know all the carers out there will recognise this as part of life dealing with msa, now Sam has developed bed sores and the base of her spine is causing her loads of discomfort, it just seems to be one thing after another, it’s relentless.

We are getting a visit from the dietician next week good luck with that one, at the moment Sam has to avoid foods that will affect her kidneys as they are very poorly, she is a vegetarian on a soft food diet, on top of that at the moment she has to avoid all dairy products, makes meal times very challenging to say the least, given that Sam is a chocoholic, it’s very tough for her!

On the positive, she just keeps smiling, falling asleep, then smiling again, she keeps her down moments well hidden away from me and keeps battling on, she’s amazing.

Rhanna passed her driving theory test well done to her, now the full test can’t be so far away, be prepared people, Rhanna could be loose on the roads soon, if your reading this blog from outside Scotland this doesn’t apply to you, you’re the lucky ones…lol.

You keep fighting Sam, love you loads xxxx

Sam, Rhanna and Andy at Stobo Castle


4 responses to “Light a candle for MSA Awareness Day

  1. Merrill says:

    I have just started reading your blogs, and my heart goes out to you all, your strength and love for one another is incredible. I read with some interest (although I wish I didn’t) as my sister has been diagnosed with this terribly cruel disease MSA only a few months ago. If that’s not bad enough I live on the other side of the world! Am planning a vist very soon though to co-inside with her birthday. Reading your blog has shown me how even the smallest act is so very precious, and I will be sure to make it a memorable visit. Please keep writing, your words help enormously. Thankyou. I will light a candle (although there is time difference) for world MSA day. Oh and Rhianna, congratulations on passing your driving test! With love hugs and best wishes. X

  2. wilma0750 says:

    Well sumphy we had a grt time in corfu cant thank you enough for gettin us there ur a wee gem , it was lovely gettin back aswell an how gd did u look glowing u were maybe cos u got ur bairn back . I hope the botox works the wayits supposed to that would b grt pain free for a bit think that would b like a holiday fer u time will tell . Not long now for ur we break inskye hope the weather behaves long enough for u to c the lights again . You know wot sumphy am so glad that ur a stubborn we thing and also ur determination is wot keeps u going keep it up an u show that little shit msa ur not done yet luv u infinity xxxxx andy an rhanna just awesome xxxxxxxxxxxxxxx

  3. terry connolly says:

    this is very hard reading of a very brave family………I never met you but since I heard of MSA I see all your comments my dear friend has MSA I pray for you all God Bless……………

  4. Becky says:

    Hello my mum has msa and it seems she is at a similar point as Sam what do you use the Botox for? Is it to do with her voice I’m pretty sure it’s not to get rid of wrinkles! Mum went in for a supra pubic catheter and they pierced her bowel. As you can imagine an underweight msa patient with a piereced bowel is not a good thing!

    She’s on the the men’s now but we have all the other issues to deal with ahh well the joys of msa hey.

    Thank you for your blog does Sam actually type it? My mum finds all that very very hard.

    Becky x

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