myfamilyandmsa

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

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.

Sam, Andy and Rhanna<

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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

Sam and Andy

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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!!

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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.

andy and kevin

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.

Rhanna with her friends Sam, Rhanna and Andy Sam's mum and Aunty Isobel Rhanna and friends

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Multiple System Atrophy -highs and lows

Sam, Rhanna and Andy
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 collageMSA 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.

Sam's dressIt’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 Sam's shoesthe 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!
Rhanna in Waterloo RoadYippee, 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.
Sam wearing the maxi dressMy 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

Sam, Andy and Rhanna

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