myfamilyandmsa

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

Holidays, exam results, appointments and catching up.

Sam:
So it’s been almost a month since my birthday and what a wonderful magical time I had. I received 136 birthday cards and to those 136 people thank you so much, it meant the world to me but meant a whole more to Rhanna because it showed her in times of adversity people always come together to help and support. image-11

I would love to tell you that since my birthday I’ve been wonderfully well but that would be wishful thinking, I’m only awake now for very short periods of the days and fall asleep as though like hypnosis! As Andy is helping me to eat I fall asleep, I try watch my favourite programme, I fall asleep, 5 minutes in the car I fall asleep and its always a hit or a miss when visitors are here because regardless of how hard I try sleep will undoubtedly beat me…very rude!!!

It’s very hard sometimes to write about what your inner most thoughts are because you know your parents, family and friends will read it and of course you spend all your time telling them your ok.

I had an appointment with the hospital last week and the doctors were trying to figure out the spasms, the pain and the lack of motor skills. I sat and said I’ve accepted that I’m going to die but I can’t accept that I’m going to leave my family and friends. You know you get people who say that “I heard somebody lived 10 years” I bloody hate those statements, who would want to live ten years with so little ability, I realise that I bet a lot of you think that’s selfish but aside from what it would do to the person with it, the carer loses their lives as well.

Rhanna has been on summer holidays so we have had great times, even if it was just watching a film eating food we shouldn’t be lol. We went to the safari park with Rhanna and Poppy, it was brilliant, my party with Rhanna’s friends Hazel and Jaynah. In a small way it was so good for me to see her with people who will stay by her side. She’s been busy doing shifts with Waterloo Road and is has got a small part in a series coming up on the BBC called Shetland, she has changed so much in such a short time, its amazing but my baby has grown into a wonderful young lady.

I’m in the process of building a website (says 5 minutes) on it DON’T BELIEVE IT lol!! It’s for MSA more and auction site as opposed to using my Facebook all the time but Rhanna has done a page explaining MSA for the younger families who sadly became affected with this disease. We had the wonderful opportunity of catching up with Katie Rigg who gave us some great ideas and was as always just amazing!!

I do have the most wonderful news…we have a thing in Scotland every year called The Big Hearted Scotland Awards and Andy has been nominated for the big hearted carer award!!!!!!! Can you imagine that, all the people that were nominated and my amazing incredible hubby made the shortlist, he’s already my hero, I don’t need him to have an award to prove that, without him I have no idea how would any of us would cope.

The other thing I’m so incredibly proud of is that Rhanna passed all her exams, maybe this time she can get the cards lol, she worked so hard during a time where we all just found out and my baby was falling apart so to pass and with flying colours is the best thing that could ever have happened…so sometimes just know when you truly want success, you’ll never give up on it. No matter how bad the situation may get.

Talk to you next week 🙂

Sam & RhannaRhanna:
OH MY GOD thank you so much to the god of exams because I passed…yippee. I know I could have done better but with everything that was going on I cant believe it! My mum who always says she’s proud of me and was over the moon and if she could be jumping up and down she would be hehe.

We haven’t written on the blog and it actually feels quite odd because it really makes you see how quickly things change in such a short time, mum sleeps all the time and I worry so much about her even though she says I’m not to, I’ve been doing stuff with friends to and I’m really very grateful to two special friends, Hazel and Poppy.

2Rhanna and hazel      Rhanna and Poppy      Rhanna and Emma

I love all my friends although I like to keep a small circle you know you can trust forever and ever and then the same again hehe. My mum is like that too, she has lots of friends but only a couple of special friends.

Andy has been nominated for an award for carer of the year, mum said it should split between us hehe. We have been doing lots of things together which has been lovely and I have been busy with Waterloo Road and filming a series called Shetland with Douglas Hensall, its very exciting, just a bit part but everyone has to climb that step one at a time as mum says all the time!

Who knows Hollywood could beckon hehehe, I’d give it all back all my hopes and dreams if it meant mum getting better, she says watching me live my life and following my dreams is what her dream is anyway if that makes sense hehe, mum and Andy gave me a card for passing my exams and my first bouquet of flowers ever and money to do something.

None of that made me feel as good as my mums cuddle although when I woke up this morning and my room smelt lovely it was pretty amazing!
love you all the way to the moon and back again mum xxxx xxxx xxxx xxxx

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Birthdays and the 4th of July.

Sam as the statue of liberty
Sam:
Tues 2nd July, my mums birthday, so already a special day for us but at around 10am Rhanna came into my room crying and behaving like a lunatic…why? Because she went for an audition for BBC television series called Shetland with Douglas Hensall and OH MY GOD she got the part!
Rhanna, Hazel and PoppySo filming starts Friday  and Andy and Rhanna are to do a mega early to drive through…… I am unbelievably proud of her, indescribably proud of her actually, she has so much to deal with in her life and this is just what she needed! A total confidence boost for her. There is no doubt in my mind that this is just the start for Rhanna and her friends Poppy and Hazel were here so she had someone to jump about mental with and I promise, those two are mental!!

I have to tell you about the auction, it raised £140! So I’m going to keep doing it hopefully our very lovely, amazing, sounds like jelly, but doesn’t like to be named beautiful blog lady will put the link on for me again this week. You can view the auction Anna and Rhanna dying hairhere.
I don’t know how long I will manage with it but for as long as I can, I will and thank you to Donald for his visit and American gift (photos are funny) and thank you to Anna as always my text pest and to Nicola for listening!

As for me, well I just continue to sleep, we were very lucky this week, as I wasn’t feeling great (that’s not lucky bit) the lucky bit was that Katie Rigg came to us this week (if the mountain won’t come to Mohammed) anyway she was up for the support group and took a chance on us being home. I’m very grateful to her for doing so, she really is wonderful lady who works so incredibly hard and still manages to look wonderful!

It’s so good to be able to sit and say how things really are for you and also she was reassuring, talking about my slurry speech and so on, then of course the longer she’s in the more comfortable you become about asking the harder questions and out comes the tears, the snot and the hankies!

Being able to speak to an MSA nurse is priceless, you cannot put the value on how very important they are and the thought that there are only two MSA specialist nurses covering the UK is unbelievable, even more unbelievable is that they aren’t funded by the NHS, isn’t that incredibly disgusting!

There are over 121 different services from hostels to rehab to accessing support and specialist services in Scotland for people with drug and alcohol addictions, I myself have actually worked in that area before becoming ill and although I know these services are desperately needed, when you become ill with a problem that wasn’t in anyway your fault it’s very hard to understand the lack of support so it’s thank god for charities like the MSA Trust and our two very special nurses!

Katie and I spoke about a subject that always seems a bit taboo…, Poop yep the very subject no one ever wants to mention to their doctor but whether it running from you or just won’t budge you need to see your GP and keep going back, if at first it does succeed there will be something else, having MSA is enough to contend with without having to worry about Poop (apparently none of my friends poo and the queen has someone come in and wipe her posterior) now that’s POOP! Please don’t suffer if it is problem and if you are embarrassed write it down…

The GPs themselves will themselves have had the same issue! Someone very, very close to me, I won’t mention her name but she knows who is once told me that whilst on holiday with her husband she was very bunged up so her husband suggested a kebab…Well lets just say she left the toilet a few pounds lighter and a zillion times happier! Obviously we can’t do kebabs unless they are liquidised (MINGING) so at present am stuck….Stuck hehe with lactolose or senna or horrid drinks…!

I wish you all a good week, my aim this week is to try and stay for at least two hours! It’s my sisters birthday 7th July, happy birthday baby sister, love you always xxxx

Rhanna:
Sooooooo guess what everyone, I got a relatively main part in a series here and have started filming!!! I promise to let you all know when it’s coming on but fingers crossed this is just the beginning.

It’s been said my mum is Granny’s favourite and I want to say something, she doesn’t have favourites, she’s the most awesome granny anyone could ask for, I love staying over and having our wee yaps in bed and I know she loves mum, Auntie Becky and Auntie Lisa all the same and she’s right when she says, she can’t do right for doing wrong.

5__#$!@%!#__imageMy mum needs her mum just now, more than anyone knows and I speak to mum all the time about her Granny. Mum tells me all the stuff about herself, she thinks she did wrong, who she hurt and how horrible she was, I can’t ever remember mum being like that so how then could she be favourite and she definitely wasn’t in 2001? She got her heart broken then.

Not just then others time too. What will I do when mum dies? It’s questions I know goes around in my mums mind. She misses Auntie Lisa so much and she wanted her to get roller skates so they could be Olympic champions, mum would be in her chair, I know you say there’s always more to it, but sisters can have relationships without husbands always there, mum is going to die Auntie Lisa and you and her will never break anymore records and be champions. We aren’t meant to be talking about this stuff in this week’s blogs but I suppose it shows illness doesn’t stop fall outs. It’s meant to be about Granny’s birthday and my job but I’m the same as my Granny, if it needs saying, then say it!

Mum’s birthday is next week and we are going on a barge! So exciting and I know she has Carol and Torsten coming both of whom have been touched by MSA in different ways. I know she wanted Paul, etc but I know they will all be wishing her a happy birthday, there’s still time to send a birthday card to her I can give you the details if you email me rhanna14@live.co.uk.

She also has the auction going on raising money for the trust. You can see it here. You need to click on to photo’s, the albums, then charity auction for MSA to see them.

I will be able to tell you lots more about my filming next week once I’ve been in a couple of times.

wilma My Granny had a fab birthday on the 2nd (should have mentioned this first oops) anyway she was 63 so Andy put a 50 candle on it then 13 candles hehe! She wanted photographs from mum, so mum got that sorted and we adopted a meerkat called Wilma, which is my Granny’s name hehe, so she ended up with two meerkats, Dvd’s and a microwave hehe! Some combination and I’m not sure what her other gifts were but she said her favourite was my phone call telling her I got the part!

Happy birthday Auntie Lisa, love you mum, all the way to the moon and back again xxxx xxxx xxxx xxxx

Andy in the statue of liberty hatmolly

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Angry at MSA.

Sam's listSam:
Monday 24th wasn’t feeling so great, a jaunt out to the doc…shock. It’s MRSA so this week has been one consisting mostly of sleep, carers, nurses and then a hospital appointment, another hospital appt on Friday 28th, when I was diagnosed with sleep apnea, quite common in patients with MRSA but still a shock when they tell you, explains a huge amount though like how I can fall asleep eating a meal now and my dreams are so vivid and despite the amount of sleeping I do I’m always, always so tired!

On Wednesday my friends and (old boss) Rose and Fiona came for a visit, it made me realise how much I miss my job, miss working with vulnerable women and sometimes watch them grow into confident women ready to take the world on again.
I hope it’s not so long before we meet again, we definitely should make more of an effort!

That goes for everyone though doesn’t it? You don’t have to wait until you’re dying or your friend is dying, pick up the phone before you never ever have that opportunity again…..we are all guilty at times of not admitting our mistakes, god knows mine have been many.

Rhanna is now on school holidays and I’m really glad (next week maybe not so hehe) but at least I can spend some valuable time with her AWAKE.

I’ve made new friends through the blog so hello to you all and if you are thinking of starting a blog, then do it, do it today once you have finished reading this obviously it becomes like a diary and a way of saying quietly what you may be afraid to say out loud.

Rhanna and her cupRhanna won a cup at school for outstanding achievement, she’s my outstanding achievement but I do not need a cup to tell me that, I have her with me in my heart all the time and although it may well be growing weaker its beat will stay strong for my family xxxx

I have started an online auction to raise funds for the MSA Trust. Please have a look at my auction and share. When you are on the page you can click on the photos for a description and the current price. Thank you.
Happy birthday to my mum and my little sister, love you both xxx

Rhanna:
Mum’s been diagnosed with sleep apnea which means she stops breathing for very short times and also explains why she acts out her dreams and all the other things she does at night, I feel awful laughing at her dreams though but we never knew she had that. It also explains why she sleeps so much during the day, and I mean deep sleeps.
Way back when mum and Andy told me about mums MSA never in a million years did I ever think the changes would be so quick.

That’s us on our summer holidays now yippee and in my last blog I had written about going to Iceland with the school in December, it costs a lot of money but I feel I have to say that in no way at all was I asking people for help towards the trip, my Uncle Iain and Aunt Lesley gave me £50.00 and although oh goodness that’s amazing, if the trip is definitely going ahead well ‘where’s there a will, there’s a way’  I’d much rather my mum got my place but she can’t travel so easy and I don’t think she would want to go with a bunch of 6th years hehe, although all my friends love my Mum!

Mum and I are thinking about little “us” time and looking at different spa places, there’s so many deals online but mum is a creature of habit so we thinking maybe afternoon at Stobo Castle.

Sam asleepHonestly and this is the truth, even though mum and I stay in the house it actually feels like I’ve hardly seen her because if there are friends in, mum falls asleep so quick that I don’t actually see her and everyday after school I come home it’s the same. I feel awful for being angry about that but I am, not at mum but at MSA, it really is robbing us of time, my mum is my very own Sleeping Beauty…. MSA is her curse and if only a kiss from the love of her life, Andy would cure her…how would that be for a happy ending.
HAPPY BIRTHDAY GRANNY ON TUESDAY!!!!!! LOVE YOU!
Love you mum all the way to the moon and back again xxxx xxxx xxxx xxxx

P.S This is a massive thank you to Hazel just because you make me laugh hehe.
Oops I forgot PLEASE, PLEASE, PLEASE contact me for mum’s address if you haven’t already done so for to send a birthday card, a small gesture but will mean the world to my mum, my email address is rhanna14@live.co.uk I promise to answer everyone xxxx 

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Trying to stay positive.

Sam and JojoSam:
This has been an odd week with ups and downs, obviously last Sunday night we all got a huge fright and it seems that fear is here to stay, every time I feel a bit rubbish we worry. So although we try to stay positive it’s became just became a little harder.

I did however get a giggle (after the shock) of reading Rhanna’s blog last week. We don’t read each others blogs before they go up, we just discuss what we feel like writing about and then do it on our own so that we both read the honesty in each others mind. So when I picked up the iPad there were all these emails from people all around the world, then I read Rhanna’s blog about birthday cards.Yes it was a huge shock but after getting over it I cried buckets, not out of anger but because my beautiful daughter thought about doing something wonderful for me as well hopefully spreading awareness “paying it forward” as she said, if every single person emailed a few of their friends then awareness will grow and grow! She will never stop being my baby regardless of what age she is! Proud doesn’t cover it!!!

I would love to tell you that my health has been good but I have the MRSA bug again and after many tears to the doctor he agreed to treat me at home with combination therapy rather than stick me in hospital, my biggest phobia (after spiders and moths) eeeuuggghhh!! So I haven’t really been over the door unless you count appointments! Sometimes it seems like we live in a bubble, having to tell friends to stay away if they even have a sniffle! I sleep so much that I think Andy has taking to talking to himself lol! It’s not really funny and I feel myself weaken a little more every day.

Rhanna and JojoI know we are lucky to have such great support from the Trust, family and friends. I did get to Rhanna’s school show which was amazing, the kids in the show were incredible and would honestly put a professional stage production to shame, it really was that good with tears and laughter all the way through.

I have to say to everyone a huge thank you for responding to Rhanna, she’s is so excited and so happy, she truly thought that she wouldn’t hear anything and she was very kindly sent a gift for herself from Net so thank you Net for giving us earache 🙂

I am In the process of organising an online auction to raise funds for the trust so keep an eye out on my Facebook, hopefully I can stay awake long enough to get it started!!!

We also have a amazing event in October, hopefully I can get the link added to the blog and you can see all about it, needless to say it I think it’s a great idea, in short it’s to do with beautiful vintage cars, bacon rolls and coffee but there really is more to it than that, it’s a very special couple who have been very kind to us.

Oh, I have to tell you that my mum got a puppy!! JOJO and she is adorable, cheered me up when’s became for a visit this week to introduce herself, don’t think Moll and Jack were too impressed! So as another week beckons and carers and nurses and doctors will all be visitors.

I wish everyone one of you a good week and send giant hugs to you all…especially the Wallace Clan xxx

Rhanna:
Oh my goodness, so far I have had a great response from people asking them to send a birthday card to my mum her birthday is July 13th. She didn’t know I had done it (in case she said no hehe) but she was happy after the shock, I can only say thank you to everyone who has responded so far and please keep considering sending a card, my email is rhanna14@live.co.uk.

Rhanna as a grannyI had my show at school this week and it went really well, I had to sing two solo’s and honestly I was shaking, I was playing the part of a granny and I had a fat suit, a wig with pink rollers and a waddle that could better a duck! It was so much fun, everyone on the cast and backstage were amazing and we had a great week. Mums been sleeping mostly when I have been coming in but she did come to the show, which is amazing and I’m so proud of her because it was on until 11.00pm so she sat for 3 hours, thank you mum for coming. On the night mum came so did everyone else and they were the loudest table 🙂 Hazel was on her feet at the end it was AMAZING!!

Mum has another infection and should be in hospital but she hates the thought of being alone and just hates the thought of hospital, it makes me sad because I know part of it is that she doesn’t want to leave us which is daft really mum because we would be ok.
When I was fixing her hair yesterday she just looked so fragile which is rubbish because she had been looking better and then because of the infection her stomach is swollen and she when I went through to her room she was crying because she couldn’t get her trousers up. 😦 I don’t know if you can imagine how sad I felt for her, something so silly but to mum it wasn’t so I just cuddled up with her and we decided joggy bottoms and comfy clothes are way better anyway…. Any excuse for a trip to River Island, my treat for my wonderful, incredible, awesome mum.

Has anyone ever been to Iceland? There is a school trip coming up but it costs a fortune but mum says its such an opportunity, we visit the lagoon that you can swim in and do different trips, see part of the world I would never normally have the chance too, I love you to bits mum and even though you say “where’s there a will, there’s a way” it’s still a lot.

I only have one week left till the school finishes for summer woohoo!!! I cannot wait and will be having a few sleepovers with both sets of my amazing granny and grandads and my friends and I will have a great summer! Thank you all again for helping me with my wish for mums birthday, please pass on the message to others so that we can “paste the wall with cards” as someone special to my mum said to me this week 🙂
love you mum all the way to the moon and back again xxxx xxxx xxxx xxxx

Sam and Andy
Andy:
It’s 3 o’clock in the morning I’m wakened by Sam who is sound asleep “why did you drink all my irn bru?” she says, I laugh kiss her forehead and say go back to sleep, her reply “don’t you kiss me after drinking all my irn bru!!!”!!!!!! Just another day, or night as the case may be. By the way Sam hates the stuff!!!!!!

Last weekend wasn’t nice, Sam passed out as she has countless times over the years difference being this time it took her ages to come round, when she eventually did her body was limp no muscle control at all and trouble breathing, it was really scary, luckily my mum and dad were in the house at the time and were a great help.

Here’s hoping the antibiotics kick in soon and ease the pain for Sam, she doesn’t complain often, battles on, how she does it I don’t know, if there’s someone looking down on us please give her a break for a wee while. No one truly see’s or know’s how much she goes through to get through a day.

It’s hard caring for someone and trying to give them space at the same time, one of my most worrying times is when Sam goes to the bathroom, every 2 mins I’m at the door shouting “Sam, you ok?” It must drive her crazy!! Thing is I don’t have a choice, had so many accidents in there its unreal, I wonder if social work would stretch to a padded bathroom ?

Rhanna’s exams all over her school show finished which was amazing by the way wonderful talented bunch at Graeme High, it now means that Rhanna’s driving lessons are back on, why is it that someone who isn’t shy at looking into the mirror in her bedroom takes a serious aversion to one in the car??? Joking aside she’s coming on great.

I would like to thank very special friends for their continued support its quite unbelievable how much people will go out of their way to help. I’m off now to see where Sam has hid the irn bru!!!!!!!!!

Oh nearly forgot, the hoist, the bed, the mattress, the bed risers, the step ladders to get there, social work, Shona, Carina and Gregory’s girl a long story not yet concluded(!!) for another day.
Luv ya Sam xx
blogsamandyrhanna

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