myfamilyandmsa

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

MSA – when is enough, enough?

Sam an d Rhanna at the fundraiser
Sam:
When is enough, enough? I want to keep fighting this awful disease with every breath I take but it’s so hard!Sam and Andy
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

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Friendship and caring

MSA rhanna andy and samSam:
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.

Anna and SamBut 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.

blogfriendsAndy 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,Rhanna, Hazel and Poppy 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.

Chris Bell and PaulaAnyway 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

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Fundraising for MSA

Sam an d Rhanna at the fundraiser
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.

SamMy 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!

Sam and AndyWe 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.

Rhanna on the dance floorPoppy 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 :grin: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!

Mother's Day cardWe 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

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MSA…doesn’t show kindness

MSA rhanna andy and sam
Sam:
This week can only be summed up in one word…. Sore!
Although, on Sunday Andy would argue that the only thing that was sore was his wallet after hitting Zuri Boutique flash sale! So much fun 😀
Monday saw me at the doctors again, basically because I’m having such a hard time dealing with pain that seems to be all consuming me. So, painkillers reviewed and morphine upped!!
We have the charity night on the 9th march so it’s been bedlam, people have been so kind offering raffle prizes, handing in donations and we were touched by lovely man Mr David Yardley and Karen Donald who are keen to support The MSA Trust which is amazing and they have been extremely generous to us. We have honestly been so blessed with the generosity of people and it will never be forgotten.

We also have the care team coming in now and I can honestly say…”Im an eejit!” all of my apprehensions and fear were totally unfounded as these people could not be any kinder, honestly, nothing is too much trouble for them and they have me laughing out loud!

Leuchie HouseYesterday with our social worker Elaine we went to see Leuchie House which is a respite home. The first time anyone mentioned respite I recoiled at the thought, it’s scares me as it almost seems a step closer to dying. Leuchie house is beautiful, not at all like you think it would be, it was absolutely beautiful, incredibly peaceful, serene, I can honestly say that going for a visit changed my perception of respite and we are going ahead with it. The staff, each and everyone of them seemed to happy to be at work, they are all very sincere and compassionate, it for sure stops and makes you think, where would we be without like them, I’m in awe of them…

As everyone knows MSA doesn’t show kindness to anyone, it holds no prisoners and can change from day to day, last night I blacked out with the pain…indescribable pain. Almost to the point where you think “I’ve had enough now”, “nothing left to fight with” and then with tears falling down my face I looked over at Rhanna and thought “I might have nothing left to fight with, but I do have something to live for…my family!” So on the phone to out of hours emergency doctor and out he comes, “hospital?” he suggests. “No”, I reply, so with that he said to me very straight faced “right lets get you rolled over and I’ll give you a couple of jabs in your bum!” teehee!
Rhanna coped with the whole thing brilliantly and makes me realise how grown up she’s getting!
My husband, well Andy is and always be my hero, he kept his arm around me all night and never let me go xx

Rhanna:
Promises
Mum never makes promises she can’t keep, she never has and she never will, it’s my mums absolute. I asked her to promise me that when I pass my driving test (I haven’t actually had any lessons because I’m not 17 till April) anyway, I said I bet I pass my test by summer and she had to promise she would be first person to sit in the car with me… She said no, I know it’s probably because her faith in my driving is shaky to say the least but it did stop me and make me think I shouldn’t ask her to promise anything, that’s not fair.

MSA isn’t fair but as a family it has pulled us into a much stronger unit than we ever were before. I have my exams coming up and I’m to concentrate to do the the best I can and I will, I’ll do it for my mum and for me. It’s my dream to get a place in the Royal Conservatoire Of Scotland, it costs so much money and I hope I can achieve my dream. Mum said I will, she has every faith in me that I can do anything I set my mind to, I hope she’s right and I hope she’s there to see me get a place.

msa collageWe are going on a respite break, like a family break but with someone else there to look after mum. I’ll be dancing Saturday night for mum, for everyone with MSA for Carole and Geoff and the kindness they have shown us, for Paul Bellars and his family, Lisa who is a rock to Andy, Colin and his family and Lin and the many more people who have been amazing, I don’t know everyone’s names, in fact I don’t even know these people, I know there are many more, only through hearing stories and conversations. I know my mum is writing something about friendships for later in our blog but I just wanted you all to know that you are always in our thoughts.
Love you mum all the way to the moon and back again xxxx xxxx xxxx xxxx

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Battling with Multiple System Atrophy

Sam, Rhanna and Andy
Sam:
Sometimes even with the best will in the world, sometimes you just don’t have the energy…
That’s how it’s been for me recently although I do always try, I have so many people around me that love me, that’s pretty amazing and def keeps me going. I have been totally completely overwhelmed by the kindness that people have shown me, ME!
Actually ME, which is a bit surreal because I’m just me and feel very undeserving of their kindness! Andy has been out pushing flyers for the party night and trying to push tickets, (easier said than done) anyway we’re getting there.

But that’s not why I started writing this, this week Andy met Karen and her daughter who run a beautiful boutique in Falkirk, Zuri Boutique where you can literally go and get everything for your night out, from make up, nails, hair and your outfit they have it all… Anyway Andy took me in after talking on fbook etc and I came out teary eyed but feeling like, well like me again, my make up was done, I felt lovely and I had been treated so kind!

Just as I was getting over the shock, my surprise wasn’t over, Karen gave Rhanna the most beautiful dress… Stunning and we are to go in the day of the charity night and get a make over!!! Unbelievable. This story would have kept me going on forever but the surprises for me weren’t over!
We have been given the most incredible raffle prizes from the loveliest of people who all deserve the biggest hug.

We went for afternoon tea at the Ochils Coffee Mill and OMG what a wonderful experience, our table was amazing, the company was amazing and the staff, each and everyone of them were wonderful, got a hug from them all and the food they prepared was incredible! Since going there we have kept in touch with them and they truly are a wonderful family.

Yesterday 28.2.13 I got baptised, I’m 38 years old so perhaps a little older than the minister’s normal candidate and we did the whole thing at home! It was perfect, totally perfect and I have no words to express exactly the difference it has made to me, I for sure feel more at peace with myself. Rev Mary Henderson is a wonderful lady and she made the whole ceremony very intimate, very personal and very perfect.

Just when I thought that things could not be anymore perfect at that moment, I received a message from Carole Aitken, a very special friend who has come into my family’s lives through MSA, saying she had organised a surprise spa day at Stobo Castle!

I actually can’t believe the things that have happened the last few days! I am no more special than the next person and no more deserving than anyone else, I’m just me, someone who hopes I can make a difference, who hopes that no other families will have to go through the pain that MSA causes and someone who hopes that I’m remembered for always pushing forward and most importantly that nothing was or is more important to me than my incredible family and friends.

Rhanna:
This week has been amazing, mum has been poorly loads but if you ask her she will tell you she’s fine. It breaks my heart that her speech is getting worse and she made a video that Andy put on youtube, it should be watched by everyone because it shows you just how amazing she is.

Mum doesn’t ever do anything for herself and I know she is having a hard time thinking about not doing the same level of fundraising, she won’t stop, we know she won’t because she can’t, it’s her focus and whatever she decides to do is up to her.

I know I’m not meant to say the following but I don’t think this person would give me a row hehe. We were given the most amazing gift from Katey Wallace, she raised money for mum to allow us to book a cottage later in the year as my mum fell in love with Skye! So there you go hehe. You can’t give mum a row Katey and thank you to Anna for always being there for my mum, Nicola too and Sharon and our family and friends.

Mum I know has written about her baptism and what Carole did for her. These things were and are all beautiful, no one deserves it more. I want to let you see what my mum wrote for minister to say as its very beautiful, I’m sure she won’t mind.
Love you mum all the way to the moon and back again xxxx xxxx xxxx xxxx

28.02.13
To you all,
For me this is a time to throw out the old and time to welcome the new.
I would like you to disregard and forget your new years resolutions because “you never keep them anyway”. But I’m not talking about making a new resolution to be attempted and discarded. I’m talking about a new way of life.
Since 28th March last year our theme has mostly for the main part been heartbreak, thoughts of lost opportunities and broken dreams, frustration, anger and mistakes. And probably, we haven’t made it easy for ourselves, sometimes we let rejection win, but we have never admitted defeat.
There is so much going on in my head and heart, I can’t even begin to explain. And everything seems contrary.
I know that God is supposedly in control but I wrestle with the fact that he has allowed this to happen. I am so angry that Rhanna will face heartache and I will be robbed of the chance to be the mother I want to be, but I know that there is a reason beyond my understanding. I am in the throes of punching my fists against god only to collapse in tears and have him make me feel better.
The realisation of dying stops you in your tracks and think about your doubts, your beliefs and actually I know now that regardless of the decision you come to make, the most important thing is, that it brings to you the inner peace and guidance you need to get you through your battle.
I wish I could explain a little better why getting baptised is important to me, it’s not for brownie points into heaven or an escalator to save my wee legs, it’s because I know it’s the right thing for me to do, and I couldn’t imagine sharing this with anyone other than the family and friends I have here today, love you all, to the moon and back again.
Sam xxxx

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