Friends and family.

Sam:
DEFINITION OF FAMILY – fam.i.ly
1. Noun : a group consisting of parents and children living together in a household.
2. Adjective: designed to be suitable for children as well as adults
Synonyms
1. Noun. Kin – house – household – stock – clan – race -tribe
2. Adjective. Domestic – homely – home – familiar

DEFINITION OF FRIENDSHIP – friend.ship
Noun
1. The emotions or conduct of friends; the state of being friends.
2. A relationship between friends
Synonyms
1. Amity – fellowship – companionship – comradeship

Are there people you wish were actually your family members and not just friends? But then would those friends still be the people you thought they were? Does that make sense?

I, like most of us have a good family, sometimes actually a great family. Those that know me closely will know that my family is the most important thing to me. I don’t expect because I’m dying that my family should fall at my feet and I ask for nothing from them, not even their time, not when it’s not given willingly.

My friends, my best friends offer me their time at the drop of a hat and more importantly they offer Rhanna their time at the drop of a hat.

I wonder if anyone in my family ever asks my mum is she’s okay? Having MSA doesn’t just affect me, it affects those who care for me and it breaks my heart and rips at my very being knowing I’m hurting them. My mum isn’t on my doorstep everyday although I’m sure she would want to be, I’m a mum and my daughter fought tooth and nail to be here, I couldn’t be with her all the time but I was there every time I could be.

Families are never easy, there are fall outs and he said, she said, they said.

Every family is the same…I’m not entirely sure what I’ve done to hurt someone in my family who I love dearly and wish her happiness forever.

See, this is what I’m talking about although I suppose I’ve gone a complicated way around it, my friends have given me so much, I am so close to them that I know I could pick up the phone and they would be there day or night, they are there for Rhanna, there for Andy. Andy, my rock, my total strength, my hero.

My mum…I can’t begin to tell you much I love my mum how the thought of leaving her I can’t even contemplate, she has made such good friends who are helping to support her, she’s yet to meet these people but I’m so glad she has them.

The online support groups, the stories you read, the heartache of others, makes you realise, makes you understand that you are just one person, you can’t change the world, only the world around you.

Yesterday was Father’s Day and we had a BBQ it was fab, then later in the evening I took poorly, I passed out but much more frighteningly I was so completely helpless I had no control at all and even as I think of that now, it utterly breaks me, last night was one of the most frightening experience for me since being diagnosed because i got a glimpse into my future and it scared me so much, I found myself praying to let me die before that, some may say that’s very selfish but please don’t let me become so dependant, so reliant on someone is who in turn gets to experience your pain and heartache.

So although I’ve went off my thread a bit it all comes down to one thing, compassion the one word not in any of definition but should be…. I wish that I could pick up the phone to members of my family and them my heart is sore, most of them are incredible including Andy’s parents who thank god were here last night and my mum and dad, my big sis who says it as it is (sometimes the best way) I don’t have to wish I could pick up the phone to my friends, it goes without saying they will answer.

Rhanna:
I wasn’t sure if I wanted to write in the blog in this week or not, I’ve been so busy rehearsing with the show for school, starts tonight aarrggghhhhh hehehe! Mum and everyone are coming on Wednesday night, lots of them are coming so it’s going to be noisy hehe.
The reason I’m saying about the blog this week is not because I didn’t want to or because we have been so busy but because this last little while I’ve been wishing that I had my mum back, I know I still have her but you know what I mean, like going shopping and trying outfits on or just a last minute trip to the shower or a pamper day just her and me a massage, our nails our hair just us just normal and not having to have a super plan before we do anything.

She sleeps so much now and I don’t know if that’s good or bad, know how sometimes people say sleep is the best medicine? Her friend had a baby, welcome baby Isla, I know mum can’t wait for a cuddle and I hope I’m in when you come!

I think when we come back from somewhere we are all on a bit of a downer. Skye was incredible, amazing, everything it was meant to be but sometimes when you come home it’s harder to face reality!

On a big huge massive plus the exams are gone yippeeeeeee. I’ve done more things with Waterloo Road and we have mum’s birthday coming up in July so we have to start our secret plans!

I know she will read my blog so I can’t say anything but mum don’t read this little sentence hehe. I would love mum to get as many birthday cards as we can from all around the world, please email me rhanna14@live.co.uk and I will give you our details.

You can look now mum hehe!

Lots of love to everyone and love you mum all the way to the moon and back again xxxx xxxx xxxx xxxx

Hit with a little bit of magic.

Sam:
I haven’t written anything for the blog recently, for a few reasons, I needed to take a break as my head was all over the place and I was really toiling to get through a day without crying. The other reasons is that it’s a lot harder for me to type now my hands and brain don’t work in sync anymore (example I just wrote myhandsandbriandomtwork) I don’t even know a Brian

In short I was falling to pieces and nothing anyone said made a difference to me, I wanted my old life back and would settle for nothing less, now I’ve realised that actually I’m still the old me just with some adaptations…

Anyway we were very kindly given money from a very special friend and her family who are to remain nameless but as I have no memory of that…we were very kindly given money from a very special friend and her family Katey Wallace, Carolynne, Anna, grandma and Pedro!!!

We used it to book a cottage in Skye, a different bit this time Waternish where there’s fairy bridges and fairies, beautiful stories, stunning scenery and if you are very lucky the Northern Lights. We were very lucky and we saw the lights, they weren’t dancing around so much but apparently that’s because it wasn’t so dark but who cares I’VE SEEN THE LIGHTS!!!!!!!!!!!!!

I feel like I was hit with a little bit of magic, in that moment it was like MSA? MSA, who?… I can never explain to anyone the bolt that hit my heart at my moment and I believe, proper believe I’ll be ok when the time comes for me because with magic like that well that surely means my granny will be waiting for me and we can watch the lights whenever we like.

On the way back from the lights we started a conversation about clouds… Yes ok we know there’s scientific reasoning but we believe that when you die you can bounce from one to the other, sit and watch your loved ones and all from a beautiful big white fluffy cloud!!!!!!!!

So we are home …oh wait I forgot to tell you in our immense hurry to see the lights Andy hit a wall, burst a tyre and now our car is all damaged down one side….was it worth it? DAMN right it was!!!

So anyway now we are home and life undoubtedly will throw its ups and downs, I feel more ready for them, that might not last but I will try….

We are planning an online auction with some wonderful prizes, not sure when yet but will keep you updated and I believe that Rhanna’s friend Jaynah and a bunch of friends are organising another dance. And in October we have a great event going on, I’ll share more of that with you in next couple of blogs.

So even though I’m feeling worse with MSA I’m feeling better within myself if that makes sense? Probably because I have the best husband, best daughter, best friends and best family and I love you all!!

Oh and to Lynn at the Ochills coffee mill, my biscuits were amazing!!!! And to Edna who makes the best custard creams and truffles ever….. We really should sell them 

Rhanna:

YIPPEE YIPPEE YIPPEEEEEEEEEEE my exams are all finished and at last mum said I’ve turned back into a human again hehehehehe!! We don’t get our results till August but we’ll just forget about that just now.

Mum seems lots more settled than she was and I’m glad for her, not for me or for Andy but for her, I don’t think she cried at all in Skye even when Andy hit the wall, if she did cry she did it in private. Things are lots harder and we know that will be our last long haul holiday it takes nearly 6 hours I think, so next time we will stop overnight to take a break.

I hate our government, they ignore what is on their own doorstep and send millions of aid to other countries. I’m not meaning that nasty but sometimes you need to look at your own doorstep and fix that crack first, of course other countries need help but what happens when we become one of those countries needing help?

Anyway back to happier things, we had a wonderful week in Skye, we played games and spent time just reading and talking. Mum slept a lot and when I say a lot I mean A LOT but if that’s what her body needs to rest then that’s fine, she gets so sore and I would take that off her if I could, horrible things shouldn’t happen to good people, she also falls to the right hand side all the time now which wasn’t helpful on the way home, poor Andy had to keep pushing her up because she was sleeping. She’s getting a new super duper wheelchair if anyone has a trailer thing for the back of your car with a roof then let us know cause chair isn’t fitting in our car and it weighs 11 stones, any ideas welcomed hehe!

This trip did us all good, we’re more upbeat, mum is definitely happier which obviously affects us so roll on next week and let’s see what it throws at us and thank you for sticking with us whilst mum took a break, love you mum all the way to moon and back again xxxx xxxx xxxx xxxx

Realisation…

Sam:
Coping? Grief? Loss? Healing? Time? …REALISATION
This, is it. This is my heart and soul and totally honesty about the last few weeks for me, I’m not asking you to read it because it isn’t all Disney and fluffy pink, it’s actually really s***! Does it have a happy ending, well you have to decide whether to read it or not…

I have been constantly unwell, I mean I know I’m already constantly unwell with MSA but this is a different kind of unwell, this was an unwell where I lost my ability to cope with life, everything was impossible, Rhanna and Andy took over everything, I hid away in my bubble only coming out and smiling when I needed to I had no idea what was wrong with me. I’m not normally like this, I can usually pick myself up and get on with it… I have cried, sobbed till I was broken and still couldn’t have answered Andy why. He was asking me what he could do and I was saying nothing, leave me alone, I can work this out.

I look in the mirror and see somebody else staring back at me, a neck collar to stop my head drooping, my stomach swollen, tubes poking out and then little totally skinny legs which really are useless and feet, that I can’t find amazing shoes for.

On and on this went, days of crying, nights of lying awake sobbing, hurting… I don’t mean hurting as in outer pain but hurting so much inside… I thought I had depression, went to my GP and he diagnosed me with the most simple fact REALISATION. Finally I’ve admitted I’m dying (not in a joking manner) which was my usual way but in a punch in the stomach way, and it took my breath away, all of a sudden I felt so lonely and utterly terrified even though I have a wonderful family and friends.

I don’t want to die, I want to stay alive with my family with my most precious daughter Rhanna and the man who found me and made me a better person Andy, please give me time and let me live my life, even if it means living like this. If I could stay like this and not get any worse, then that would be ok, apparently this is me bargaining with god… I’m not bargaining, I’m begging, give me time to see my baby grow, I know that won’t happen and so that’s why I haven’t been on Facebook or answering calls because I was in my bubble and although I’m climbing, well wheeling back out, I still feel like that ugly little person who has MSA.

Doesn’t it make me sound incredibly selfish all of that? I have had so many people do wonderful things for me, I’ve been shown incredible kindness and created many wonderful memories that I hope I take with me when I die, I’m sorry to all the people reading this who think what a cheek after everything we’ve done, please believe me I’m very grateful for every moment, every second you took to make me smile…sometimes REALISATION is a heartbreak.

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A little message…

Andy:
Hello everyone, who so kindly reads our myfamilyandmsa blog every week, we have had so many people take the time to read, follow and forward the blog which is great.

Sam would love to have written something this week for the blog but she has asked me to leave a little message saying that although she’s not that great just now, she’ll bouncing back with her usual strength and grit, meantime as you all know Sam loves Lilo and stitch and her unwavering friend Anna surprised her with a gift that cheered her up immensely. X

Do you see what we see?

Sam and Rhanna:
Well it’s been a very up and down week with some great moments and some really not so great points! Mum and I have decided this week to do a joint blog as mum is finding things a bit hard.

We had the chance this week to finally meet one of the members of the MSA Trust, Ellie and quite honestly she really is the nicest person in the world ever! Also she has very cute kids, hi to Immie and hi to Levi we are so thrilled to have had the opportunity to meet her and hopefully one day soon we will get the chance to organise a proper MSA event.

Mum has slept a lot since the visit but she wouldn’t have changed it for the while. She’s missing her friends, we have had to cancel visits through either them being snotty nosed or mum being tired.

Teehee, mum is telling me to write about the stress of the exams, I know I’m not different from any other teenager but why, why, why does it have to be so stressful?!! English exam on Monday so I can’t do Waterloo road on Sunday .. Gutted

We all went adventure tubing as part of Andy’s birthday back in April, it was so much fun and we all had wetsuits and big tube things, I didn’t do the jump neither did Anna but everyone else did! Mum had organised a cake for Andy and Abigail cause it was her birthday too, I bet you, you would have to look far and wide to find anyone as special as my mum.

We are sitting on the bed and she has fallen asleep, she is so beautiful and having a really hard time about stupid things just now like clothes! She’s seen a beautiful maxi skirt on Karen’s website Zuri boutique so Andy picked it up and it’s lovely, there’s so much clothes she can’t wear anymore jeans and stuff and because of tubes she can’t wear shorter skirts add that to her little legs she’s so self conscious.

Finding age wise clothes that are easy to wear for a younger person in a wheelchair, it really upsets her. Sometimes for some stupid reason she feels horrible, I suppose that when your female we all feel ugly sometimes but there’s been so any tears in the house this week. She just wants to be normal again and wear shoes although Andy had found wide fit shoes from New Look

I’m getting my hair done properly, hopefully next week yippee I can’t wait, I can’t get it changed too much as Waterloo Road don’t let you and although me, my Granny and Mum all have forget-me-knots tattoos on our ankles. I have to be careful not to change my appearance too much.

I wish mum could see what we can see, we see a beautiful woman where as she sees someone not pretty, she sees someone who can’t wear fashionable clothes like she has in her wardrobe. It doesn’t matter a bit but my mum has a heart of gold that shines from the outside in, that’s what beauty is and I love her even if she has fallen asleep and left me to write what was meant to a joint blog hehe!

Love you mum all the way to the moon and back again xxxx xxxx xxxx xxxx

P.S check out these shoes!!

Our journey with MSA…

Sam:
Our journey with MSA has been shared many times in the last year and now a short documentary has been made by the Guardian Newspaper and Zurich Insurance, it’s currently being shown on the Guardian website and I’m thrilled that the people involved made such a beautiful moving film, something that will last forever.

As a family we worry we are in people’s faces all the times, how many times can you ask someone for something, we have been so overwhelmed by the kindness of family, friends and complete strangers, some of whom (hairy) went as far as getting waxed all for a good cause, thank you to Kevin and everyone else who attended! Special thanks to my amazing sister who says very little verbally, but shows it all in her beautiful eyes.

We have had more equipment delivered this week, different medications and plans, all the things that take your smile away for a short moment because your reminded of what’s to come. Rhanna is now on exam leave, no matter what happens with her exams we will be forever proud of our beautiful girl who shines from the inside out!

As part of Andy’s 50th birthday celebrations there is a group of them doing adventure tubing, Andy, Rhanna, my mum, Anna, Iain, Abi, Brian, Charlie and maybe Rhanna’s friend Hazel…. Good luck to them all.The rest of us will be watching from afar warm and cosy!!
Please feel free to make a donation http://www.justgiving.com/samantha-crawford2 if you have a look at ‘nae limits’ website and adventure tubing I’m sure you’ll agree they deserve a little recognition!

I’m becoming more tired, my body is getting weaker ….. I wrote this poem last night, well actually, very early this morning, Friday 10th May at 2.18am.

MSA….. Who?
You never stop to wonder
To ponder on your time
You just go along, thinking that it’s mine
Than something comes along, knocks you of your stride
That something is named MSA, it robs you of your pride
There are a million reasons for a death
Old age always seemed so much more realistic
But given that MSA doesn’t have a cure
It seems I’m to be another cruel statistic
The end of you, the end of me
The endless emptiness I cant see
Those minutes that are ticking by
The moments you see passing by
Knowing that your going to die
You can close your eyes, choose not to see
The end of you, the end of me
Somewhere out there is something pure
A dream, a vision to find a cure
You mustn’t give up, never lose hope
Without it you will never cope

There’s not much time to live your lives
So live them full and with a smile
You can close your eyes
And you will see
The happiness of me
The moments so clear for just a while
Where you and i share the brightest smile
I believe in my heart what I say will come true
A cure will be found for MSA
Broken hearts will be mended the battle be won
And MSA……well that be done.

Samantha Crawford
MSA Sufferer….. Actually scrub that….. MSA FIGHTER

Rhanna:
Have you ever watched children
On a merry-go-round
Or listened to the rain
Hitting on the ground
Have you followed a butterfly’s beautiful flight
Or gazed at the moon in the fading night?

You better slow down
Don’t move so fast
Time is short
The dance won’t last.

When you ask, How are you
Do you stop to hear the reply
When your family hear MSA
Do you lie in your bed and wonder why

You better slow down
Don’t move so fast
Time is short.
The dance won’t last.

When you are running
so fast to get somewhere
You miss half the fun of getting there.
You don’t see the old couple holding hands
Been together forever, 50 years not apart
But then it hurts then when the understanding starts
Why would MSA hit your family
Then you worry and hurry through your day

It is like an unopened gift…..
Spend time with your loved ones
You better slow down
Don’t move so fast
Make memories to last
Forget for a moment MSA
And live so happy for that day.

Multiple System Atrophy -highs and lows

Sam:
So after a week of highs and lows and coming to terms about how sad Rhanna really was, we have spent a lot of time speaking, being very honest and taking time to talk about our fears for the future, I think we have reached a point where for at least another amount of time, everything will be okay again.
I’m aware our road has been somewhat rocky lately but there will be days where it’s better, those days will always overshadow the bad!
As a family we can fight this battle together, we can giggle together, laugh out loud at the ridiculous and cry when we need to, I think now we realise that we can do those things and everything will still be the same.
We can never stop hoping, dreaming and trying, we have to focus on the future and try hard to look forward positively, as hard as it is. As best we can, we have to try and not worry every day, when you worry every day you lose perspective and very quickly following that you lose your sanity.
MSA affects families in every way, everything changes, some of your family accept what can’t be changed, others hit the Internet looking for a cure, some don’t accept it all, the thing is there is no right or wrong on how you deal with it.
Following my blog last week rather than trying to understand that I’m a mummy first and foremost and I will not stand back and let anyone hurt my baby, the person involved in a small way choose to remove me from her Facebook, she’s protecting her family, whether they are right or wrong and that’s fine, I can only hope that somewhere inside she realises that she would have reacted in exactly the same way.
I have made many new friends through MSA and through the trust, it would be amazing to organise some kind of huge get together a conference if you like, I know the benefits would be amazing!
Andy has been busy in the garden trying to getting it looking lovely for summer so I can sit on the recliner and feel the sun…. It’s funny because I tend to listen more now than ever before, everyone should do that at some point, you will be amazed at what you hear.

It’s hard for me just now as the shops are full of summer clothing things you def cant wear with a supra pubic catheter but after months and I mean months of having to wear fat slippers because of the problems with my feet, Andy solved the problem extra wide shoes in a bigger size and Karen from Zuri boutique solved my summer clothes very easily with a maxi dress!!!!!!!
So stuff the lows. Rhanna, Andy and I have had some highs this week… Am clinging onto them… Well, not exactly clinging, cause my hands don’t cling but with wonder web, lol, it’s amazing what you can do.

Rhanna:
Everything came crashing down on me, I felt like I was drowning, school was too tough to cope with exams, friendships lost and watching my mum get worse and there’s nothing you can do to fix it, you’re useless, hopeless and just rubbish. I felt like I was adding to the list of the bad things.
Now I feel a little stupid feeling like that and I should have gone to my friends or my mum, Andy, my granny’s, honestly I have my friends right beside me but I felt alone, Poppy thank you for putting a comment on the blog, I love you totally hehehehehe and Hazel thank you!
Anyway mum and I spent a lot of time talking this week and things are better, I’m not so stressed although I hate to see her suffering and it breaks my heart that one day she won’t be here but I’ve been firmly told to concentrate only the now!
Yippee, today is the last day of school for exam leave which means I have time to study, spend time with mum and friends and hopefully some more shifts on Waterloo Road, I’m am extra in series nine and so far I’ve done 4 shifts since April on set, I love it everything about it and my mum said it makes her so happy to see me happy.
My Uncle Iain ran the London marathon for MSA, I would like to commit to something like that but I’m definitely not a runner so I’m thinking of something else, all ideas welcomed! I have an idea in my head that maybe will work but once I have it all sorted in my own mind I will speak to the trust first.
I don’t feel 100% yet but I will get there, who am I to complain when sometimes mum can’t even do anything.
My mum is my perfection, she can’t wait for the sun but then gets so sad because she doesn’t feel pretty, she’s beautiful but because of the catheter bag the clothes she has aren’t any good for this summer, she’s got a very pretty maxi dress though and that made her smile, she’s beautiful, more beautiful when she’s smiling ❤ love you mum to the moon and back again xxxx xxxx xxxx xxxx

MSA – sometimes it’s hard to smile

Sam:
Monday was Andy’s birthday and because he was 50 I had hired him a m2 jaguar which was also 50! Alec and Tanya at Caledonain cars were lovely and couldn’t be more helpful so a huge thank you to them, if you are looking for wonderful gift seriously think about them.
To Gordon (thank you) for being my secret agent! It was beautiful and after a quick stop at his parents to pick a food hamper (thank you Edna) we headed out for a day. Although we have done lots of lovely things together it has felt a bit like we hadn’t done anything just the both of us, so we had a lovely time just cuddling up, eating lunch and blethering about nothing important!

I have been quite poorly and all too aware that I’m sleeping lots more and trying really hard to focus. That was the start of the week…
Yesterday I got a phone call from Rhanna’s school, she had written a poem that had alerted them that something was obviously very wrong with Rhanna. I asked Rhanna if I can write bits of it to you in the blog and she has agreed.

From Rhanna …the girl with the smile

The girl in the corridor who seems to have not a care
The girl with the smile is no longer there
Remember the things you said to her, remember what you’ve done
Remember how you laughed and said it was just a bit of fun
And those who didn’t want to be involved just turned their backs around
While the girl who always had the smile, her world was crashing down.

She told people she was miserable, but no one seemed to hear
It was like she was invisible, even her friend made her feel like she wants to disappear
To those who didn’t listen, how do you feel now
Is you mind filled up with questions like what if and why and how
She does have people supporting her and she knows how much they care
But now because of others she feels they’d benefit if she just wasn’t there
She feels like she is drowning and it gets worse with each defeat
Because whenever she feel happiness, it’s always bittersweet

I wonder if in years to come, you will just forget
That girl you let down and hurt, she hopes you’re riddled with regret
Perhaps now that it’s done with, you’ll put it all to bed
Will you find it easy to forget that girl with the smile is…Dead.

As I wrote this, copied this from a piece of paper I am utterly devastated, crying so hard and so sad I never realised just how bad things were for Rhanna although I know she’s lost friends she also made new news ones, girls that come down to the house and I hear laughter and typical teenage nonsense.

She’s only 17 and yes some 17 year olds are very mature but not Rhanna. She’s very mature when it comes to all things medical but not streetwise if that makes sense. I want to wrap her up with all my love and swear to god that its going to be ok, who wants to see their little girl break their heart? What kind of people walk away so easily from her?

There are other parts in Rhanna’s poem that I haven’t put in, I couldn’t type the words, I want my baby girl to be smiling all the time, I want to protect her from pain I want to see her laugh till she cries and OMG I can’t wait till the exams are over. Rhanna’s teacher, who I spoke with yesterday is really lovely and she knows Rhanna very well, Rhanna knows to go to her if she needs too.

Rhanna, herself, well only she can begin to believe in herself the way we believe In her. If she could see how beautiful she is, how lucky people are to have her in their lives, how privileged they are to have her as a friend.

Rhanna, you are everything to me sweetheart, there is nothing more important to me than you, you are the kindest, most honest, beautifully amazing young lady with your life in front of you… I want you to grab it with both hands and shout out YES YES YES I CAN BE WHATEVER I WANT TO BE, maybe do it in your bedroom so no one actually thinks you’re mad hehe!!!!

You are my little heroine and oh my god I love you so much all the way to the moon and back again.  xxxx xxxx xxxx xxxx

MSA – a reality check

Sam:
Stobo Castle… We were very kindly offered an overnight stay with treatments and dinner, this was because of Carole and Geoff Aitken who wrote to the castle telling them all about our family. After what had happened with that neurologist this was a much need break. I honestly, hand on heart can’t think of one bad thing to say about our stay there, every single person went out their way to help us and the food was delicious.

We had the funniest experience at the dinner table, lets just say that when Andy’s dinner came out Rhanna and I were both very childish, I’ll put the picture on and you can judge for yourself.

We had back and shoulder massages, facial massage and I also had a warm paraffin shoulder massage. We met Mr Winyard who was incredibly kind, took the time to speak with us asking us lots of things about what could possibly help, he gave Rhanna a Stobo teddy so she was incredibly happy! Never in a zillion years could we ever have done anything like it so we are eternally grateful to Carole & Geoff Aitken for arranging this wonderful treat and to all the staff and Mr Winyard for such a wonderful time thank you so very much.

On Saturday we went to The Ochils coffee mill for afternoon tea. OMG it was amazing, amazing, amazing!!!! The photographs don’t do the day justice but they help. Rhanna loved it and had a beautiful day!

Then we had Rhanna’s birthday on Sunday which was just perfect, she had her first driving lesson and as she drove back into the street there was a little car all decorated with balloons and banners! I know it seems a very extravagant present but it was all made possible by the wonderful Wallace family, anyway now my baby has her own little car (Matilda Matiz) she’s not new but she’s an orange (ahem) shout out to MSA trust, lol and Rhanna is still in a little bubble with the kindness of people, she’s been out for two lessons and Anna and Andy have taken her out as well.

It’s weird because I should be over the moon and I am, but as I watch her getting older and I feel myself getting much weaker it scares me to think of what I’m going to miss, I can’t think of it right now, we’re a team, I know we have our moments but we are the strongest team, an unbreakable bond that not even MSA will be allowed to break for as long as possible!
I’ve been poorly since we came back, tiredness really and unbelievably forgetful!
The post just arrived and our DS1500 arrived, basically it tells DWP etc that I’m not going to get better…Ouch to the reality check.

Rhanna:
This has been an almost normal this week hehe well not almost normal because its not every week you start your driving lessons, have a spa day, the most amazing unforgettable afternoon tea and a CAR!
Then of course appear as an extra in Waterloo road and River City. I’ve been so lucky this week unbelievably lucky and I’m very appreciative of it all, I promise I would give it it all back in a heartbeat to have my mum back healthy and able to do everything again.

The doctor told my mum she should speak with us all to tell us that things are moving quickly, no one knows why, it just is. My mum said its a shame MSA didn’t know its contender before it took her on hehe because shes a fighter. I can’t deny I’m scared and my close friends, I’m very glad to have them just now.

I’ve had 2 driving lessons so far and Anna and Andy have both took me out as well. I just can’t wait to pass my test and take my most special person in the whole wide world out and we can turn the music up really high and just drive wherever we want!

I don’t know why bad things happen to good people and my mum has great friends but some of the people who promise to be there walk away without a blink, I don’t think it’s because they’re horrible, I think it’s cause you get scared especially when you’ve lost people you care about already, no one wants to watch their friend suffer, so sometimes it’s easier to turn around, this doesn’t make for a horrible person, it just maybe means they already dealing with enough and they’ll come back when they’re ready.Every night before I shut my eyes I pray for another day tomorrow, one day at a time mum and we have gazillions of days to go hehe, love you mum all the way to the moon and back and back again xxxx xxxx xxxx xxxx
P.S HAPPY 50th BIRTHDAY ON MONDAY ANDY, LOVE YOU

Multiple System Atrophy -back to where we were

Sam:
I didn’t think I had much to write for the blog this week, things had been quiet and really if I’m honest I’ve slept most of the time away and unless its been written down, it’s been forgotten about! I even texted Rhanna to ask if she was ok at school and was she was actually at a sleepover!! Made Rhanna laugh!

Then yesterday I had an appointment at neurology. Neither Andy or I knew why but you know what’s its like, you never question the reasons. When I went into the appointment the Doctor ran through all the normal questions, my symptoms, when they started ? At this point he hadn’t opened my medical records, I said to him about my MSA and he said “I don’t think it is MSA” as I sat there opened mouthed and I said what we has judging this on, his reply to me was firstly my young age and secondly the pain, apparently pain is unusual in MSA? He asked if I would repeat all the tests, definitely not I said and was he even aware how many doctors I had seen who told me yes sadly it was MSA, not to mention the fact my family, my 16 year old daughter was told her mum was going to die.
Anyway when he opened my holy bible of a medical records, clearly I had seen a number of doctors and this one had just made the largest error, he gave me back my life for a minute, maybe two, maybe less but regardless for then I didn’t have MSA, I cannot describe the utter pain and devastation he caused me. Imagine after been told your going to die, then your not, then oh wait yes you are. As I type this I’m crying so hard, not because I have MSA but because for that small moment in time I thought I didn’t. MSA is so incredibly hard to live with because you never know when your symptoms will worsen/improve, how you are going to feel in the morning and the pain your family go through. It felt like March last year all over maybe worse.
After speaking with the nurses at the hospital they helped me more than I can tell you, and I was reassured I wouldn’t have to ever see that doctor again. The nurses helped me calm down and then we found out I’d been put in as a new referral!!!! He never even knew me, my history or bothered to look. When we left the hospital I phoned my GP to change my appointment with him as I didn’t want to wait, the receptionist changed my appointment.

Thursday morning arrives, 09.03 the telephones rings and on the end of the phone was the hospital, apologising profusely, couldn’t offer any reasonable explanation and would I like to go into to speak to my own doctor…..erm no thank you, I was mentally, emotionally exhausted. The nurses came out to see me and change my dressing etc and they couldn’t believe it, my normal nurse was furious and said I could choose to work with the palliative team, so that’s where I said yes, I know this was a long story and apologise to you all.

On a much much happier note my baby is 17 on Sunday (not such a baby) and she has been working as an extra on her favourite show Waterloo road. I’m very proud of her commitment, she has to be in Greenock every morning for 07.00 which means leaving here around 05.45.

On Thursday we had the opportunity to meet the most incredible man who very sadly lost his beautiful wife Aileen in 2010 due to MSA, immediately he put us at ease and honestly I could have stayed there very much longer, Torsten I know you will read this and I would like you to know that I think you are amazing, I think that Aileen is so very beautiful and I know she’s still with you. I would very much like to join you onetime with you and your irn-bru, your roll and paper and come and visit Aileen with you. Thank you so much for yesterday, you are definately one of life’s gentlemen.

So as we are back to where we were and we continue to live with MSA, we can’t allow it to overwhelm us and my thanks to Katie Rigg from the Trust for her unwavering support. I am going to look forward to my daughters weekend and try hard not to think about what that man did to me and the heartache he caused.
Happy birthday cookie, love you forever!
And also happy 21st to Rachel may your future be filled with nothing but sunshine xxx

Rhanna:
After watching my mum this week after hospital I wasn’t sure I wanted to write for the blog, I was so scared for her, scared she was going to give up and not fight anymore, when I saw her after that appointment she looked so small and so fragile, honestly I hope that doctor who managed to upset my mum that much, I hope he suffers many sleepless nights. Anyway mum said we shouldn’t allow that man to stop us from maybe helping someone else, but now I wonder if the blog does help anyone or are we writing because we can’t stop? Everything that has happened has brought MSA straight back into our faces and now we have to try and pick up the pieces. It’s sometimes just a little too hard though.

My week has been awesome, I’ve been working on Waterloo road, just as an extra but it’s still AMAZING! I also got the chance to spend sometime with the cutest cousins in the world, Keir and  Morvern, we all stayed at our granny and grandad’s so it felt we were spoilt I also stayed with my granny and grandad (mum’s mum and dad) I also love staying there too and my granny drove me through and picked me up from work, I like that time just the two of us

My friends and I also went for this amazing singing thing where we got to dress up and make a CD hehe it was so much fun, Poppy, Hazel, Jodi and Kirsten the forget me nots hehehehehe thank you mum and Andy and granny, it was totally amazing and we will all have our c.d as memories forever ❤

Sometimes when I write the blog I think and feel guilty because it looks like I’m having so much fun and I am but in the background MSA is always there and I’m scared every day is another day closer to losing my mum, it makes me feel selfish, my Mum said I shouldn’t feel like that and that of course for me every day should be a good one but it’s not because what happens the day that my mum isn’t there anymore on her chair?
So even though I know I shouldn’t feel guilty, sometimes I do but I know mum wants me to live like nothing is wrong so that’s what we try to do.
Love you mum all,the way to the moon and back again xxxx xxxx xxxx xxxx