myfamilyandmsa

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

MSA – pulling us apart

Andy and sam
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

Rhanna:
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

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Dying and other taboo subjects

northern lights sam and andy
Sam:
“Never tell me the sky’s the limit when there are footprints on the moon” I read this and it made me think of course there’s more to see, more to do, more places to see and more doors to open. I sleep more than I’m awake, I slur more than speak, I can’t walk but I can still visit, I can still hear, so don’t shout (why do people do that, and did I do that when I could walk?)

I had a conversation with a very special friend today and I watched her eyes fill with sorrow as she spoke of her Gran who is old and frail and of me and msa. We hurt ourselves so much more by not talking about death, if we bottle it we are bottling the fear, the hurt, and the tears, it would be so much better if we spoke of our fears and then for the person left behind they would have a bottle of happy memories instead of a bottle full of sadness.

I love my life despite the MSA because I have the most wonderful family and friends and through MSA I have made many more friends some I have met already, Torsten a verkligen under bar maänniska, Carole whose friendship my whole family love and by this time next week I will have met Paul and his family, then the support from the Trust and our online friends means I can choose never to be alone, although like everyone else sometimes time on your own is what you do need.

As much as I love my life I hate MSA and I am sure of one thing, I will not let MSA kill me, I’m quite sure that I will know when the time is right for me and that will be my decision. Death is always an uncomfortable subject to talk about and then there’s the ultimate subject no one ever mentions: EUTHANASIA
The definition of Euthanasia – The act or practice of ending the life of an individual suffering from a terminal or an incurable condition, as by lethal injection or the suspension of extraordinary medical treatment. Also called Mercy Killing, the act of putting to death painlessly or allowing to die, as by withholding medical measures from a person or animal suffering from an incurable, esp. a painful, disease or condition.

northen lightsA taboo subject but I’m guessing most people are afraid to talk about it because they may be ostracised, lose friends and left feeling more alone than ever. I know by bringing the subject up I risk losing friends or people may never look at my blog again, I’m not saying it’s the right thing to do but I’m also saying it’s not the wrong thing to do either. Many people will say this is not the same but a few months ago we made the horrendous decision to put our little dog to sleep, she was blind and deaf and although she still wagged her little tail and seemed happy enough there was also many, many times when she looked like she was suffering and just had enough.
Now obviously Tara was a dog but none the less, she was loved as much as any member of my family and watching her suffer was incredibly painful, making the decision to put her to sleep was also awful, because we had no way of knowing if our little dog wanted to be here or not so we went with our gut feelings that the only reason we were keeping her was for us, I would hope that I be allowed the respect of making my mind up…

So many cases have gone to court and many more will go to court before someone says that yes it is our basic human rights to live, but it should also be our basic human right to die as well, as long as that person is of sound mind and know exactly the consequences of their actions. As I write this I will not deny it’s really, really hard and yes I’m crying, but I’m crying because I know with every beat of my heart that I will make the decision myself one day because MSA has already guaranteed me a earlier death than I imagined.

It is around now that I wish Andy would happen to come in the room and give me a hug, or that my mum was here and I could just lay my head on her lap or Rhanna comes bursting in and starts to yap despite she can see I’m doing something, sometimes these are the moments that are the best! People will have their opinion and they are very much entitled to that but if one day a member of their family or indeed themselves becomes terminally ill there will be an element of thought, of that you can be sure.

Today is Sunday all of the above I wrote yesterday, I stopped because it’s a painful subject and I knew I would come back today with hopefully a cheery story, so what’s happened this morning was bizarre. I had an email asking me how I could share our lives out for everyone to see ‘a reality show’ it’s the first time I have ever had a slightly hurtful email, I share my experience of MSA and the effects it has on my family and I, there is so little information out there so we NEED to make sure people start to recognise the disease so that more money will be given to research, to find a cure. As my mum would say ‘there but for the grace of god’ and that is exactly the line I replied to the email.

I can’t remember if I said last week but whilst in Portree we met a lovely lady Gill who had read our story in a newspaper and recognised that the symptoms I had were the same as her husband, sadly it did turn out to be MSA for him but they were relieved to know what it was they were fighting, I know you read the blog Gill and I tried to email you but it was returned please get in touch again samcrawford13@live.co.uk so to the person who says I live out our lives like a reality show, Gill and her family would still be searching for the answers and if you have reached the end of this blog then you are obviously much more interested than you claim to be!

Sam and Andy
Andy:
Yesterday is history, tomorrow a mystery, live for today it’s called the present, there’s a reason for that, because it’s a gift.
Or is it?
Imagine waking and being unable to move, walk, talk, swallow, do anything for yourself, don’t know about you, but you can keep that gift for me, thank you very much!!
I spoke to a friend during the week who has a very sick elderly relative in hospital, her wish was they would let nature take its course, I’m pretty sure that kind of thing is occurring up and down the country daily, certainly makes you think.

We all had a fantastic time away last week, recharged the batteries and relaxed, no mobile phone reception or Internet, just like the good old days!! How did we ever manage, it was bliss, the scenery on the drive their is amazing, through the Trossachs, Lochearnhead, past the green welly!! Glencoe, Fort William, Glen Garry, Eilean Donan Castle and onto Skye, took photos for Sam as she slept through it all, again!!

I know Sam loved the time away, it’s painful though as I know what she would give to be able to walk over the hillside with me and Molly (the dog) and take in the view and the sea air. They say the best things in life are free, after a week on the Isle of Skye I agree.

I have to give a special mention to my father in law Alister who kindly volunteered to cat sit for a week, thanks Ali, and he saved us a fortune in heating as he couldn’t find the on switch, told us later he had to go out for a heat, old age doesn’t come without a price!!
You keep on fighting Sam, luv ya xxx
Andy and sam

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MSA – trying to be honest

Andy and sam

Sam:
I always try to be as honest as I can be in the blog bearing in mind that Rhanna reads my part of the blog every week as well. I’m always honest but of course like most parents I want to protect Rhanna for as long as I can.
Last week was meant to be a respite week for Andy and Rhanna but we made the decision that we didn’t actually want to be separated that far away so with a quick pack of bags we headed to Skye stopping over at Fort William o/night first to break up the journey.

When we arrived in Skye it was beautiful as always and you could see forever, not a cloud in the sky. Rhanna stayed with me a lot this time because I tire so easily so as you can imagine we did a lot of talking.

She asked me if I was afraid of dying, I said no, not of dying but scared of what I’m leaving behind because it took me such a very longtime to find happiness like this. Andy and I are the true love story and the reason that Jeremy Kyle isn’t always right…ten weeks after our first kiss we were married, seven years later we are still together, still united, strong and still in love.

Rhanna on the cliffsRhanna and Andy have a great relationship and when I die I know that they will be there to look after each other. She then asked when I was going to die, I said to her honestly I don’t know, she asked will I be here for her 18th birthday in April and I said I hoped to be, then she asked me about Christmas after this one and I said nothing, I couldn’t and wouldn’t promise that to her one way or the other. I can write this because we spoke about it, if Rhanna had asked me not to put it in the blog then I wouldn’t, after that we just lay on the bed cuddled up, Rhanna fell asleep and I cried as though my heart was broken.

When I think of Andy…well I can’t really because it feels like someone has ripped out my heart and thrown it in the bin, it’s just so unthinkable. So far this blog is a whoa look at me, it’s not like that, I think when you come home to reality, that’s the real issue.

TrinketsWhilst we were in Skye this lovely lady came over to me and had recognised me from the article in the daily mail. Gill told us all about her husband and how ill he had been and then we she read the article it all fell into place for her and she had that horrible gut feeling! She asked the medics up in Skye and sadly, yes her husband does have MSA, it was really odd because it was very lovely to meet Gill and her daughter, I wish it could have been under different circumstances but hopefully she will get the support she badly needs. Gill please resend me your email because the email I sent you came back to me, wishing you all my love and it was incredibly lovely to meet you, my own email address is samcrawford13@live.co.uk, take care of yourself lovely lady, I will fondly remember the ginger haired beautiful lady shocking me in to silence, lol.

Everyday I worry about the strain I’m putting on my mum and Andy’s mum… It’s so easy to tell people you love them but I really with absolute conviction mean it of course Ali & Gordon are included in that statement, both sets of parents were so shocked when Andy and I got, together and I believe they thought it was all too soon! Now we wish that time would slow down. Let’s move on to happier events because I’m crying whilst I read this, which means I need to read it again!

Kiss Entertainment and Jaynah had a party night, Rhanna did a fabulous tribute to Amy Winehouse, which was amazing!!! Everyone loved it and thought that she was a star, which of course she is! The next “act” was a duo fi-lyn I know they sound a bit like a Chinese restaurant but this was actually my wonderful friend Lynn and my mental carer Fiona whom I’m beginning to think she needing a carer of her own lol!

Does anyone remember those dancing dolls? Well that was them! It was a really good night and had lovely prizes donated to us thanks to Ria at Falkirk For Mums and you must take the time to check out a great site Pink Thistle Accessories, Dana sells beautiful gifts, get your Christmas shopping without leaving the door, she even very kindly dropped the things we have bought at our home! Thank you Dana for making my shopping a little easier! Whilst I’m on the subject of shops, there is the best boutique EVER in Falkirk Zuri Boutique, get your hair, nails, make-up and one shop!! Fab!!!

If I could have one wish, just one little wish it would be to freeze all my love ones and watch them for just a little while, to let me give the all a gentle kiss, whisper a secret that only they knew, I would tell my baby that her life will be wonderful, to watch them smile and watch them cry. So as freezing time is not a possibility then I will cherish every single minute with a smile. Lots of love, Sam xx

Rhanna:
We have had a lovely time in Skye, we met a lady who had read our story which helped diagnose her husbands MSA. It was such a shame, but in a way a blessing because they know now to make the most of the very valuable time they have left as a family.

Rhanna on cliff top edgeAll of you will have seen my mum and seen how tiny she is, sadly she doesn’t see herself like that. I think because her muscles don’t work anymore she worries about not being toned! Honestly mum you drive me to madness because you are beautiful, that’s what I would like for Christmas this year, for my mum to feel amazing.
Imagine if I could get a shop to open just for her and we gave her a chance to see herself in a dress again…. So simple yet I’m here crying for her.
Sometimes I feel like like that bloated and untoned and you go off on one. I know you don’t want me to see myself as anything less than perfect.

I did my Amy Winehouse tribute act at the disco and I felt like a proper star, I wish I could do that all the time, maybe in the summer I could work in a holiday place as Amy Winehouse and Dolly Parton who knows? Like mum says just need so done to give me a chance so fingers crossed!!

Mum is very tired now and sleeps an enormous amount of time sleeping but I figure she better sleeping then she not sore. Every week I like to say thank you to my friends because I know I’m not always the easiest person to get on with so thank you all so much I love you heaps and I know my mum loves you all as well!

My mum is a ray of sunshine with an aura like angels, love you mum all the way to the moon and back again xxxx xxxx xxxx xxxx

Skye sunset

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Not all superheroes wear capes

 Light a candle for MSA
Sam:
I lost a battle this week, one that has been going on for quite sometime, but alas I don’t have the fight anymore, I’ve agreed to a hospital bed. This is the bit where I say what I haven’t even said to Andy, I’m so utterly terrified that this could be the end of our marriage as we know it and we become “friends” …what I know is this is an embarrassing subject but no-one talks about it and how many people married 7 years are still “at it” all the time.
I don’t think it’s Andy I think it’s me but I miss the closeness of just a cuddle but he’s scared he might hurt me, my skin breaks if you look at it just now!

There is no explaining to you how much I love this man, the fear of leaving him hurts me much more than the fear of dying does, same with Rhanna. But I miss him, sitting on the couch beside him, holding hands, having a carry on and just loving him, something I thinks he’s more scared off admitting? So here’s hoping this bloody single bed sleeps two and we can have fun with the electric buttons hehehehehe.

I have sores on my b. u .m I don’t why I said it like that instead of just the typical Scottish way of saying ‘ave got sares on ma bum’ I also have one in my thigh from lying foolishly In that direction for a stupid length of time, anyway they are sore and the carers from “allied Healthcare” senior carers, I add! Marionanne pulled the whole dressing off after two, not three…two! The agony I was in, the truth is though that she probably saved me from getting an awful infection as the dressing that been put on was way too small!
Just prior to that,  I’m not even going to tell you about that, Fiona running up my path and almost knocking herself out! Buy a sports bra missus, hehe.
I jest about these people but without them I wouldn’t be able to cope the way I do, even just shedding a tear or the way they really are with you, which is caring I really do think I’d be lost now.

Today is world MSA day (3rd October) where everyone comes together lights a candle and donates what they can, we did what we could and have a family charity event tomorrow. I’m not a silly young girl with dreams of cures and magic cream but I do know now that MSA sufferers/family/friends and carers don’t need capes to be superheroes.

Fiona and 'Amy'Well the charity night ended up being a great giggle with Fiona, one of my carers was up on the dance floor like she was 18 and dancing round her handbag only she took the whole dance floor as her own with my very dear friend Lynn from the Ochils coffee mill, they definitely showed the kids how it’s done lol, the video is on Andy’s Facebook and you tube!!!!

Rhanna did her first proper tribute act at the charity night as Amy Winehouse and she was amazing, totally incredible, she has the nicest set of friends and she was definitely on her platform, happy, relaxed and like any other 17 year old.

Andy in a lotusThen on Sunday Andy had his super car experience that Emma bought last Christmas and he loved it! He spoke to the guys there and “Hamish” took me around the track going faster and faster every lap, it felt amazing, it felt free, it felt exciting and for those small minutes Andy became even more important to me even more than my superhero because he helped me feel like I could achieve anything.

So although now I’m totally exhausted and sleeping more than normal, we had a great weekend as a family. Oh and just lastly our nephew and his girlfriend had a little baby boy, welcome to the family baby Flynn lots of love your great auntie Sam xxxx


Rhanna:
I don’t know where to start…this week has been awesome we went to see seven brides for seven brothers but I was meant to go with mum and Andy but mum was ill so I ended up “with a sore leg” in the wheelchair so we still got to go, the show was amazing but oh my god wheelchairs are not comfy.

Mum has been poorly much all this year every time she picks up a little she falls back down again, I don’t know if she sees it or not but I try not to worry because she believes so much in positivity.

Sam and Rhanna and friendsAnother World MSA DAY and we all lit our candles and said our little prayers to whoever might be listening and tomorrow we have disco party thing, we are hoping mum understands this was meant to be for her but we wait and see, mum believes strongly in friendship and she loves the friends I have now and says I’ve relished and changed beyond all recognition of the girl I used to be! Oh, oh, oh I passed my theory test just got to pass driving test now and erm my coordination isn’t the best, sometimes I even trip over my own feet hehehehehe .
Andy and 'Amy'
Am doing Amy Winehouse at tomorrow’s thing so please keep your fingers crossed for me that I don’t crash out!!! Hehe!

I did it! I did my Amy tribute and it went good, I have to say thank you to my auntie Becky and my friends Hazel, Poppy, Emma and Laura and Rachel and everyone else, I love you all!

Mum woke up at 3 on Saturday, got up at 6 and was sleeping again before X-factor, it’s so different from last year when we had our munchies and we sat and watched Saturday night tv, somehow this Saturday made it all the more obvious and I found that really hard, I hate really hate what it’s doing to her!

I’m really sorry but I just want to leave it here this week but I’ll write again later on, love you mum all the way to the moon and back again, Rhanna xxxx xxxx xxxx xxxx
Sam in the Porsche

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Light a candle for MSA Awareness Day

psamSam:
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


Rhanna:
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 rhanna14@live.co.uk 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
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

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Three little letters – MSA

Sam, Rhanna and Andy
Sam:
Well I did it, I went through with the Botox for my bladder, I’m very glad I didn’t realise what it involved beforehand or I’m not sure I would have been going! That was at the time, now I’m glad I did it, I don’t know it has made a difference yet or not it can take up to two weeks so will keep you updated.
I know I haven’t posted on the blog as often but I am so very tired a lot of the time now and fall asleep at the drop of a hat.

Yesterday the social worker and O.T were out and although we have a hoist in the room we can’t use it because of the kind of bed we have, we spoke about a hospital bed, something I don’t really want unless I can get a double ☺ but that’s not an option. So it would mean that at 39 I would be sleeping in a single bed next to my husband in his bed, not the best but Andy said it’s what’s best for me and he’s pretty sure he could crawl in beside me ☺

northern lights sam and andyWe are also trying to rush respite up a little so that we can look at pain relief etc. The same day I saw my G.P who is wonderful and listens to me as I cry and say actually sometimes I’ve had enough, I find it extremely hard when I see on the support forums and yet another MSA friend has died, its very odd because even though I’ve never met these people I still feel the grieving process for them and their families, it also brings it much closer to home that MSA is never very far away.

I stay as positive as I can and I just had the most wonderful weekend away with Andy’s parents, it was lovely, so relaxing and laid back! Thank you so much to them, for making it so wonderful, I saw the Blackpool illuminations for the very first time! Another tick on my list!

I can’t deny that MSA is sometimes getting the better of me, I sleep loads, can’t concentrate for any length of time, Andy just came in the room and I’ve forgotten what I was doing, that’s how easy it is!

Sam & Rhanna cuddle up after the op.My speech and swallow aren’t great and although my speech still kind of comes and goes it goes more than it comes now if that makes sense. We have a great support network around us, wonderful carers coming in who I see as good friends, people I can trust if I need a cry or just a moan!
An amazing family that I couldn’t live without, in fact my life would be pretty amazing if those three little letters that cause so much damage would just go away!

Andy and Rhanna are so strong and stay determined that we do as much as we can! Rhanna’s friend is organising an event and I hope it’s a huge success for her, for MSA.

I will get back to writing the blog more regularly and I’m so sorry for the lack of input from me, I promise no one is ever very far from my thoughts, be it Torsten, Carole, Kym, Lynda, sharon and everyone else, I continue to send you all my love and positive thoughts!!!!
Lots of love Sam xxxx

Sam, Andy and Rhanna

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Make you feel my love

Rhanna and Sam on the train
Sam:
The Willow Tree Foundation…Oh my goodness they gave us memories we won’t forget, it was an incredible experience and I feel very blessed that they made our time so special, also the the staff at The Shendish Manor where we stayed, everyone was incredible!
Rhanna felt amazing and of course came home with Hermoine’s wand!! It was lovely to be away for a few days especially because of how things have been, Andy made a video of our time away so it’s there forever.

My appointment for the hospital is Friday 13th and I’m no closer to deciding what to do…I know I can’t tolerate the pain any longer but there’s so few stories about people getting Botox, it scares me to think of the consequences. It’s very difficult to think of the positives but I haven’t heard any!

The pain however has reached the point where I’m actually holding in my scream, and I’m ashamed to say I’ve wished that I could just die right there and then because to think of a life like this is just unbearable. I’ve spoken with my family about the future and we are all clear on my wishes, I never want to be in a position where all I can do is watch from the sidelines, many people will think that’s incredibly selfish but they don’t live our lives and I have always, always been so active with Rhanna and Andy that the thought of just watching breaks my heart, it’s hard enough being in the chair unable to join in.

I find myself crying at the utter cruelty of it all…I was happy, don’t misunderstand me I’m still happy but I was happy in a way I can’t describe. I’ve also developed huge insecurities, the way I look, talk, when I don’t get my daily texts from both mums all these things leave me crying and Andy going “what?” you have MSA and you’re upset over the lack of a text! When I write it down like that it make me smile! Daft cow lol!

Anyway I got a text from my wonderful father-in-law (I have to say that cause he’s doing the majestic wine run) anyway he texted me to say I was his best friend! Probably just to stop me texting!

Monday is carers day so I get Fiona who at ermmmmm forty something who has a friend with benefits(can always tell when she’s seen him cause she dances up hall) thank god there’s always Lindsay or Marianne with her!

As with humour and laughter there is always in its equal sadness and tears….. I hate that.

MSA is a terrible disease,  you know, because in ways we have been able to do things we couldn’t have done but then you would rather never have done those things and not have MSA if that makes sense. I am not in anyway a materialistic person, my family are the most important thing to me and the  thing I worry the most about.

Rhanna and AndyAndy is lying sleeping beside me and my heart breaks and I’m crying now at he thought of how on gods name he will cope, we were meant to be together forever, an old couple holding hands, arguing over the heating and it’s all being robbed from us. Rhanna, who one day will be the success she wants to be, why take that away from me? Why not let me see that? My mum, who needs me as much as I need her, I know I have my sisters for her. I feel the same with Andy’s parents, I love them dearly and I feel a special bond with them. My friends Anna, good god she will be a wreck, Sharon, back in my life hopefully for a good while yet. Baby Isla, the twins, Morvern and Keir…so much growing to do!!

Rhanna is my biggest achievement in my life, I don’t think anyone would disagree with that and I know she will continue where I leave off hopefully in many years, maybe I’ll be the miracle, the one who proves them wrong!
I try so very hard to remain positive and inject a little humour in my blogs but sometimes when your heart hurts so very much it can be hard but you have to think of others, people living with the same disease, no one wants doom and gloom all the time. So I thought, to cheer everyone up I’d let you know that as of Monday its 106 days till Christmas!! Love and hugs Sam xx


Rhanna:
Oh my god we went to the Harry Potter Studios! Mum was offered a special trip and she let me choose, thank you mum so much for that. We travelled first class to London and stayed in the most beautiful hotel, I had emailed them and they very kindly put flowers and wine in mum’s room and made her a special menu!! How awesome is that, thank you to everyone at Shendish Manor.
At Harry Potter’s studios they have moulds of all the casts hands and my hands are the same size as Emma Watson! We had a fantastic trip, the worse thing about having such a wonderful time is the coming home because mum has been poorly since, just mostly sleeping or when she’s awake she’s sore and tired but always smiling! Well mostly smiling!

I was on the TV, Waterloo Road started back this week and I appeared 3 times, it was so sad  though because mum had fell asleep and we couldn’t waken her. Andy recorded it but I got a text in the morning from her how sorry she was for letting me down, you could never let me down mum and anyway we watched it when I came home after school.

Mum hasn’t decided what to do about the Botox, I think she should get it, maybe it won’t help, maybe it will but imagine never knowing if it would have made a difference to pain. When I say pain I don’t mean like a headache pain, it’s like a pain that makes her pass out or cry so hard that it’s unbearable to watch. She is really funny and so gentle and kind, she got my friends tickets for Hairspray so we all going there on Tuesday, bet it be awesome!

It’s been proper busy weekend with birthday party and ice skating today after my friends stayed last night and although Monday is a holiday off school, I’m working at Waterloo Road. I’ve had an awesome weekend though so thank you to my mum, Andy, Hazel, Jacob, Poppy, Kirsten, Sian and the twins, I’m sorry if I missed anyone.
Love you mum all,the way to moon and back again xxxx xxxx xxxx xxxx
Rhanna and Sam at the hotel

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Growing up with MSA

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.

Rhanna:
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

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MSA, carers, and auctions

Sam CrawfordSam:
This hasn’t been my strongest week, all kinds of problems with my bladder and bowels (the subject no one ever wants to talk about). I have tablets for one thing then tablets to counteract the side effects of the other tablets and in a week I take over 100 tablets, the pains I have are indescribable…

None of those tablets help me as much as Andy does, helping me get dressed on the days when I feel like it, feeding me without making me incapable and protecting me from the ignorance of others. I cant believe in a year how much ours lives have changed but you have to try and get up and continue to smile….

I sleep mostly leaving Andy kind of alone in the sense of the word, you know what I mean, I’m there but I’m not? He makes me smile when he walks in the room and I love him more than I can explain.

Rhanna who is without a doubt my reason for fighting this horrible disease has taken to coming in to my room in the morning and just spending half an hour or so with me just yapping about nothing but its magical! We don’t really talk about anything but its one of my favourite things now. We’ve had the great district nurses in and my wonderful GP trying to make things as comfortable as possible, hopefully things will be better soon.

You know all the tablets in the world don’t make up for care you get from family and friends, I’m also very lucky to have carers come into to help with washing etc and one of my carers who is slightly bonkers  is no longer just a carer to me but a friend who makes me feel better about myself.

Carers are so incredibly important and undeniably under rated, without help from them it doesn’t bare to think about the amount of people who be suffering in a horrible silence with no help from anyone. The carers that come into our house often work 12 hour shifts and all the time with a smile and a way to make you laugh. Without them people like me would be stripped of my dignity, that’s how much my carers mean to me and in a very short time you learn you can imagetrust them not to turn away in disgust if you haven’t managed a few days without days them.
I’m very very lucky because I have Andy, Rhanna and the rest of my family but its not their job to do all my personal things so to the carers I have coming in your not just my carers but my angels, I’m sure no one will mind if I singled out Fiona Ure who is on holiday in her “boat” thank you from the bottom of my heart for making me see that getting carers in was never about admitting defeat its about accepting care.

Carers allowance is a pathetic rate and Andy and I obviously don’t have as much as many but we have each other and Rhanna and Andy’s kids, even Rhanna’s friends who would help at the drop of a hat. The “official carers” that come in get paid very little for their job, you can only assume they do the job because they have heaters big enough to care.

I said to Andy tonight I wish we could go back a few years if only just to show him how very much I love him and walk hand in hand.

Sam's mumMum and Rhanna are going away for a short holiday in October and please believe me no one needs more than her, it breaks my heart to look at her and see what I’m putting her through, what I’m putting everyone through I suppose but I don’t have the ability to stop the bloody thing…

I can still do loads for myself but I dread the day I can’t, the day I’m not me anymore because I can’t think of looking in the eyes of my loved ones Andy, Rhanna,my parents, Andy’s parents, my sisters and seeing only sadness there, I don’t want to lose my smile.

I feel I’ve ranted about carers and lack of care they get, Andy has been nominated and shortlisted for the Big hearted Scotland award for carer of the year, he has already won in my eyes, there’s very few with a heart like Andy’s so I suppose really this week is bout saying thank you, thank you to everyone who takes the time to email me, I always welcome and write back, thank you to the very wonderful angel who fixes the blog! Thank you to my carers especially Fiona with her odd little ways and infectious laugh, and lastly thank you to my family and friends, without you I’m nothing so there you go, I adore you all!

I must must must mention our auction site on my Facebook page, its there every week but we have a the most amazing prize on the site it’s from two very wonderful people Alex & Tanya who own a classic car company ….this really is amazing so please get behind us and do us proud….right are you ready ? They have kindly donated one days car hire with the choice of a MORGAN a TR6 a CATERHAM or the MGB, you can see more about the cars on their website which is caledonian classics they are also on Facebook as well.

I can tell you from experience because I did this for Andy’s 50th and we had the most wonderful day. These people have only came into our lives because of booking one of their cars and I promise you, you would extremely hard pushed to find a nicer couple, I will get pictures up on my Facebook ASAP but meantime please take a look… They also offer B&B if you a bit further afield, what better excuse to come for a visit!!

Lots of love everyone, Rhanna isn’t writing this week but she will be back next week. xxx

Sam, Andy and Rhanna

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Holidays, exam results, appointments and catching up.

Sam:
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

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