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

Respite care, bedroom tax and exams

Sam:
Are you ever doing something and then stop and think ‘I can never get that minute  back.’ Think about what you were doing that minute ago before you picked the computer, or went to bed last night. Did you kiss your other half goodnight? Say you love them? Do you tell your family you love them every day? I do, I never let leave Rhanna leave me without saying ‘love you’ we all know that we do but your family are what you are and just because you know something doesn’t mean you shouldn’t say it!

MSA is overwhelming, it seems just like when you are getting there and trying to control the pain, along comes the experience of even more extreme pain! So we phone out of hours emergency service and out comes two very lovely GP’s: “You sure you don’t mean M.S? “
Calmly I reply: ‘No, and hadn’t any one of the GP’s heard of MSA?’ None of them had. Anyway I told them what to give me (honestly) and eventually a couple of jags later I  managed to get some sleep.

It is becoming harder and harder to stay the person I am, I am far from perfect but I wouldn’t want to change me. Sometimes we all reach breaking point, the part that you can’t even fake happiness.
I feel like life is laughing at me, I look in the mirror and see someone unrecognisable in front of me, I feel ugly, unfeminine and nothing like the woman I used to feel like. I feel when we go into my usual  shops top shop, river island and co that I just don’t belong there anymore, I used to love shopping, mostly I do it online now.

We were meant be going respite on the 1st, we cancelled due to me begin unwell, I ended up with extreme fatigue and was so tired. So respite was cancelled and I think in all honesty we were all a bit relieved, and much more honest with each other. I’m a homebody, it’s where I’m at my best. We will try again with respite, maybe after Rhanna’s exams though. We have Rhannas birthday the 14th and then Andy’s the 22nd they both deserve so much more than I can give them but the main thing is we are all together.

Andy, Rhanna and I owe a gratitude of thanks and much more to someone who has become a very special friend to us, despite his own losses he has befriended us and is there for us whenever we need him…..I don’t need to name you, you know who are and we believe you are a very special man, thank you.

I don’t write this blog for attention for my family and I but because we were approached about sharing what it’s like to live with MSA and how people pull together in times of need, I miss my old life very much, but this is my new one and I just need to adapt to living a little differently than before, with love as always Sam xxxx

Rhanna:
EXAMS EXAMS EXAMS aaaarrrgghhhh hehehe. Although I do have to say that my Easter hols etc have been awesome mainly cause of my family then my friends, Hazel, Poppy etc. Inbetween studying I’ve been to the cinema a few times, spent time with Anna, mum’s best friend but mine too (hehe). I love helping her with the horses

We were meant to be going to respite this week with mum but it was cancelled as she was to poorly which sounds weird cause surely if you are poorly best place to be is respite, but mum had the MRSA bug again and a hospice isn’t the right place for her so the nurses just come in here.
Mum and I had a very honest conversation about what is going on just now and we know she not doing to good right now, she said the biggest promise she will make is that she will keep trying, fighting and not give up, I don’t want her to suffer though so I’m glad we had that talk. My mum is my best friend, honestly everyone who has met her, especially recently sees her shine.

I know her and Andy are worried about the changes in the system and the bedroom tax thing and I know we had to cancel some nursing care but I hope we are getting that back. I know my mum cries and cries when she thinks no one is looking. I know she hates that Andy has to do everything and I actually should do more but I get scared in case I hurt mum. Does that even make sense?

Ooohhhh and poor Molly, our dog she hurt her foot and has a stookie on, has to hop everywhere and pit on sad faces because she can get long walks or treats, she is way too cute!!

Monday my friends and I are going to make a song video thingy that should be fun then it’s back to studying, love you mum all the way to the moon and back again, Rhanna xxxx xxxx xxxx xxxx

Andy:
Warning, warning some ranting ahead, sorry.
Its just over 3 years since I stopped working, that’s not strictly true I suppose, like all carers I do work just a different type of work, this job is harder much harder than any work I’ve ever had to do before.

Some things change, I’ve been brought up to work hard provide and look after my family, if you needed a few more shillings for that special occasion, nice holiday, lovely treat, unexpected bill you would work harder, work longer, work overtime or ultimately look for a better paid job.

What if the person you loved and cared for was dying from a horrible illness what if that person was being taken away from you bit by bit, in constant agonising pain? That’s what’s happening to my wife, that’s whats happening to Sam. What would you do? Do you think you would try and make those last months or years that bit extra special? Would you try and treat that person and make things as good as possible? Would you work harder, longer, work overtime or look for a better paid job to make a difference? Every chance you would!!
If only I could, if only every carer out there looking after there loved one 24/7 could! I’m just discovering trying to stand still and not go backwards in these tough times is much more of a struggle than trying to strive for more!

Imagine this little scenario – you go Tesco and get 2 loaves of bread for £2 or you can fill your trolley to the top for £2! Doesn’t seem right that, does it! That’s how our care system works. Take a basic 2 ½ hours of care (couple of showers a week) £23/wk, or you could have 20, 25, or 30hrs care for…Yes £23/wk, the system actually penalises those that try to manage as best they can, save money, keep some for a treat. There’s no point really is there, let’s all fill our trolley to the top why not!!!

We spent 6 months living and sleeping on the living room floor because Sam couldn’t walk, or get up the stairs and the toilet was downstairs.  We fought with the council to get a more suitable property being turned down time and time again, eventually less than 2 years ago they offered us a property, we accepted, delighted, a house to call a home, somewhere nice for Sam to spend her last years, spent what little savings we had, decorate it nicely, floor the property, make the garden nice and a joy to sit out in, make friends, lovely neighbours, have the house adapted for disabled living, then here we are with no change in circumstances, being asked to cough up £40ish/month minimum for a spare bedroom, or downsize!! You seriously couldn’t make it up could you?!
Let’s ask a them to live on £34.00, in fact we invite you to come and try at our house?

What if…just a long shot this one, people who do have a house too large for their needs are offered a smaller house, help with decoration, flooring, moving costs actually helping people, help free up properties, encourage cooperation, encourage those that can to downsize, help those that are suffering through overcrowding…
Or maybe not!!
Lets just bully people who are in a position through no fault of there own! Those who struggle by daily who can’t work harder, longer or change their job, not an option for them, not for me or any other full time carer out there all trying their level best to make a difference, stay positive and through it all still trying to keep that smile.
A massive thank you to friends and family your actions mean more than you will ever know.
Luv ya Sam xxxx

MSA – when is enough, enough?

Sam:
When is enough, enough? I want to keep fighting this awful disease with every breath I take but it’s so hard!
We went away for a couple of days with my mum and Ali and I totally messed that up by sleeping at least… erm, 80% of the time. The times when I was awake were fab, mum thought she turned into the birdman of Alcatraz constantly spotting new birds and feeding them!

We played the chase and guess who won? Yes ME hehe Alister! Accept defeat like a man! Rhanna stayed at home and I think she appreciated the break, that’s her on Easter hols now so hopefully things pick up and we can do nice things together.

I have the MRSA bug back so perhaps that’s why I’m sleeping so much and the pain is indescribable, I don’t normally,spend my time moaning and I’m scared that this is just a further advancement of MSA? I hope it isn’t, I hope it’s just because of the MRSA bug. I’m sorry that my blog is a little depressing this week, my problems are no more significant to someone else going through something, I just hate the thought of constant pain or sleep. It’s a bit of a circle really, you take the painkillers which make you sleep, you wake, take the painkillers, fall asleep and on it goes…..

I am also getting so confused about things? Do others feel like that, it’s weird because in my mind it is very logical but when I say it, it sounds ridiculous!

Then my phone died, talking about losing a best friend! It was beginning to get harder to use so we were going to change to the iPhone 4, then I can connect to my keyboard.
Aarrrgghhhh so annoying cause my trade in has gone! So this week has been full of bumpy potholes, tears, laughter, and hugs.
It’s had it’s great moments with friends and ermmm, wine oops! And great moments with family what better medicine can there be than that? xxx

Rhanna:
Hi everyone, well that’s my drama exam sat, only another 4 to go Mum, Andy, Granny and Grandad went away for couple of days to celebrate grandads birthday which was in feb but that’s ok, he’s 109 now!!!! Hehehe I’m kidding he just looks that age, he’s actually 70.
My other granny and grandad went up to see them and the all had a meal which mum said was really lovely but she missed me I bet after two weeks off school she won’t miss me so much.

Poor mum has been proper poorly and has that bug MRSA again. She’s really tired and sore though and sleeping lots.

It’s my birthday in a few weeks and I know what I will be wishing for when I blow out my candle. I hate to see mum trying so hard to be ok when she obviously isn’t and now she starts to say things that makes no sense at all, we all started laughing but then last night I thought oh my god mum must be so hurt we laughed, but we aren’t laughing at you mum, we love you way to much to ever to do that. I think it’s because we don’t know how to react and I’m sorry if we have made you feel bad.

I know you weren’t very happy about me writing to that person and I’m sorry for that too; but sometimes mum you need to just accept people want to help without wanting anything back, actually that’s you!
That’s who you are, always willing to give where you can, love you mum to the moon and back again xxxx xxxx xxxx xxxx

Friendship and caring

Sam:
Friendship…what does that mean to you? I think we all have different ideas on what a good friend is, not so long ago I wrote to Ellie (who does the techy stuff on the blog) but I asked her not to post because I was just venting.

But actually everything I said was true, friendship to me is that you NEVER give up on a friend especially because you may HAVE HAD ENOUGH. I cannot stand with a passion people who claim they are so caring and genuine when in fact they are the complete opposite. My friends, my true friends are often what get me through a day, I know the ones who will keep their promise and look after Rhanna for me.

Andy says all the time that I’m to soft, always prepared to give people the benefit of the doubt. Please believe me I couldn’t take anymore kicks, lies and nasty little comments that are meant to be heard… I firmly believe that what goes around, comes around and the bite you get will be far worse than anything I can say or do. Rhanna has her friends just now who can make me giggle just by being here, I believe them to be true friends for her who will be there when she needs them.

Anyway enough of that, my friends and you all know who you are, I love you all very much and am truly thankful for your friendship. One last mention about friends R.I.P Chris Bell, you loved Paula and your girls and for that we loved you, the collection at Chris’ funeral was donated to the the trust £539.
Thank you so much Paula, love you xx

We ended up this week fighting for funding, it takes a huge amount of pride for me to say we needed a little help but I realised that I wasn’t being fair to Andy, we had it all sorted for a few weeks but it appears that honesty doesn’t always pay! I won’t fight anymore because it takes up far to much energy, energy I could be spending with my family and friends.

We actually have a lot more than a lot of people, not monetary value but so much more ❤

I also went to the service this week at church and it was lovely, really lovely and I’m glad I went, I couldn’t give a hoot what anyone else says, it’s the right thing for me and if it provides them with a little gossip, more fool them.

We have little things planned to give us something to look forward to and Rhanna stars her driving lessons next month OMG!!! So it’s been a very mixed week, up and down, confusing and funny, happy and sad… Bring on next week!!! Neuro appts, doc appts, Lots of love Sam xxx

Andy:
Blue badge renewal, personal care, respite, and strangers – just another week!

“Yes Sir will post your renewal form out” (Aye, right!!!!) A week later I go and pick the form up myself, fill it in, run down to the offices. “Sorry Sir, you need this bit certified.” Run home get it certified run back down to the offices, “Thats perfect Sir, we will get it processed.” (Aye right!!!!) Six days later the post arrives, we need proof of your home address! So this morning back down to the office “That’s perfect Si, we will get that processed’ (We’ll see.)

Personal care,  “No problem Sir, 2 showers a week, if you need more that’s not a problem.” Bill arrives unexpectedly £72!! (Aye, right!!!) Umpteen phone calls later to the social services office, Sam had already cancelled half of her personal care in the last few weeks due to being to poorly, “Sorry Sir, if you cancel you still pay.” Really? “Rules Sir, sorry.”

Respite …too long a story.

Strangers, a lovely man I’ve never met contacted me after reading Sam’s blog, he had lost his wife in 2010 to MSA, I had a lengthy telephone conversation with this man, he shared his experiences, passed on some wonderful advice, hopefully will meet up soon.

Life as a carer, its tough enough looking out for your loved one, making sure you make things as good as they possibly can be for them, trying to get someone to come and sit whilst you try to fill out forms, run up and down to the offices, going round in circles, trying not to lose the plot and someone saying “Sorry Sir, it’s just the rules.”
Remembering the 26 tablets she has to take, remember to find the time to sit and eat! If  it wasn’t so sad I think it would be pretty funny, sadly its not funny, everyone out there who is caring 24/7 should be getting a break, not being wound up!!

Apart from that its been a good week, feeling better after sharing that, lol, love you Sam xxxxxxx

Fundraising for MSA

Sam:
Saturday 9th March …. Today I felt like a princess, I had my nails, hair and make up all done by the nicest girls you could meet in Zuri Boutique, they did Rhanna and my best friend Anna as well, so we all walked (well I wheeled) out of there feeling like supermodels!

It’s been such a very longtime since I’ve felt like that and although Andy tells me all the time I’m beautiful, the one thing MSA hasn’t taking so far is my eyesight so I know when I look in the mirror exactly what I look like.
Today for the first time in well over a year I wore a dress!! A beautiful maxi dress covering tubes and tubes and bags and tubes lol OMG it felt so good to feel feminine again! It makes me cry now to think about how special I felt on Saturday, the day wasn’t meant for me, it was meant for MSA and our continued battle to raise funds and awareness but when Andy looked at me I felt I couldn’t have been loved more.

My sister, my mum and Ali, Andy’s mum and dad, our kids the rest of our family and friends were so lovely it was hard not to believe I looked nice! The whole night was a huge success and OMG I had a stunning boutique of flowers delivered only from…Phil and Holly (from This Morning)! How amazing is that!
David Cruickshanks shot the whole night so the film will be fun to watch, I had to spend so much time concentrating on my speech so that for just one night I felt normal. Needless to say I am now exhausted but wouldn’t change a thing.

It scares me to think that we may not have many more nights like that, I know how very tired I am and it makes me sad and a little scared, I haven’t said that out loud so for Andy and everyone else it’s the first time they will read that, I’m frightened of what the future holds for us just now I know how tired I get and how much sleep I need but I promise to Andy, Rhanna, my mum and Andy’s parents that I won’t give up anytime soon, still to much to do!

The fundraising night made £1920 which is fantastic and after costs the rest is now in my justgiving page for The MSA Trust! We are incredibly proud of the way our community pulled together!

We are meant to be going for respite 1st April for four nights but our social worker has just phoned as I’m writing this to say unfortunately they can’t fund Andy and Rhanna so we would have to pay £450.00 ourselves. Andy isn’t home just now so I’ll talk to him when he comes in, four days to us is a longtime and I don’t want to be away from them. The fact is that they need/deserve a break much more than me and for the countless people out there with all different illnesses it can be so difficult to understand the governments ways of thinking! It would cost over £900 a week if I was in respite full time, carers allowance is £53 a week…doesn’t anyone else think that’s just wrong? I don’t think I’m any more deserving than the next person but I do firmly believe that my husband and my daughter are more deserving than a whole lot of people playing the system.
I’m very tired now so, I’ll stop boring you with love as always Sam xx

Rhanna:
Hi everyone well the charity night went better than anyone thought it would, we had great music and great fun and raised lots of money, can’t wait to see the video David is making for us.

Poppy and I were last on the dance floor hehe although we also had group dance/hug to shania twain ‘your still the one’ mum and I used to sing it all the time really loud in the car! She tried really hard with her speech all night which has left her really tired, I wonder if just overtired herself on Saturday.

One really good thing about Saturday is the my step-sister Emma and step-brother came and its been a very long time since they had seen my gran and grandad on Andy’s side my mum fixed that because as you all know she just wants her family together, it makes her happy which makes me happy.

It’s getting harder and harder watching mum getting more tired so much more easily and falling asleep even when she’s eating. I see her getting smaller and smaller and she looked so beautiful on Saturday, her eyes were shining, it was amazing!

We had a lovely Mother’s Day and just chilled out, got take-away and watched dancing on ice, it was lovely day especially as we were so tired after Saturday night.
My mum is loyal, supportive and always the first to offer to help, she has to learn not to do that anymore and put herself first sometimes. Exams coming up soon and my promise to mum I will do the very best I can.

Thank you mum for being the best mum in the world, love you to the moon and back again. xxxx xxxx xxxx xxx