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

Make you feel my love

on September 9, 2013

Rhanna and Sam on the train
The Willow Tree Foundation…Oh my goodness they gave us memories we won’t forget, it was an incredible experience and I feel very blessed that they made our time so special, also the the staff at The Shendish Manor where we stayed, everyone was incredible!
Rhanna felt amazing and of course came home with Hermoine’s wand!! It was lovely to be away for a few days especially because of how things have been, Andy made a video of our time away so it’s there forever.

My appointment for the hospital is Friday 13th and I’m no closer to deciding what to do…I know I can’t tolerate the pain any longer but there’s so few stories about people getting Botox, it scares me to think of the consequences. It’s very difficult to think of the positives but I haven’t heard any!

The pain however has reached the point where I’m actually holding in my scream, and I’m ashamed to say I’ve wished that I could just die right there and then because to think of a life like this is just unbearable. I’ve spoken with my family about the future and we are all clear on my wishes, I never want to be in a position where all I can do is watch from the sidelines, many people will think that’s incredibly selfish but they don’t live our lives and I have always, always been so active with Rhanna and Andy that the thought of just watching breaks my heart, it’s hard enough being in the chair unable to join in.

I find myself crying at the utter cruelty of it all…I was happy, don’t misunderstand me I’m still happy but I was happy in a way I can’t describe. I’ve also developed huge insecurities, the way I look, talk, when I don’t get my daily texts from both mums all these things leave me crying and Andy going “what?” you have MSA and you’re upset over the lack of a text! When I write it down like that it make me smile! Daft cow lol!

Anyway I got a text from my wonderful father-in-law (I have to say that cause he’s doing the majestic wine run) anyway he texted me to say I was his best friend! Probably just to stop me texting!

Monday is carers day so I get Fiona who at ermmmmm forty something who has a friend with benefits(can always tell when she’s seen him cause she dances up hall) thank god there’s always Lindsay or Marianne with her!

As with humour and laughter there is always in its equal sadness and tears….. I hate that.

MSA is a terrible disease,  you know, because in ways we have been able to do things we couldn’t have done but then you would rather never have done those things and not have MSA if that makes sense. I am not in anyway a materialistic person, my family are the most important thing to me and the  thing I worry the most about.

Rhanna and AndyAndy is lying sleeping beside me and my heart breaks and I’m crying now at he thought of how on gods name he will cope, we were meant to be together forever, an old couple holding hands, arguing over the heating and it’s all being robbed from us. Rhanna, who one day will be the success she wants to be, why take that away from me? Why not let me see that? My mum, who needs me as much as I need her, I know I have my sisters for her. I feel the same with Andy’s parents, I love them dearly and I feel a special bond with them. My friends Anna, good god she will be a wreck, Sharon, back in my life hopefully for a good while yet. Baby Isla, the twins, Morvern and Keir…so much growing to do!!

Rhanna is my biggest achievement in my life, I don’t think anyone would disagree with that and I know she will continue where I leave off hopefully in many years, maybe I’ll be the miracle, the one who proves them wrong!
I try so very hard to remain positive and inject a little humour in my blogs but sometimes when your heart hurts so very much it can be hard but you have to think of others, people living with the same disease, no one wants doom and gloom all the time. So I thought, to cheer everyone up I’d let you know that as of Monday its 106 days till Christmas!! Love and hugs Sam xx

Oh my god we went to the Harry Potter Studios! Mum was offered a special trip and she let me choose, thank you mum so much for that. We travelled first class to London and stayed in the most beautiful hotel, I had emailed them and they very kindly put flowers and wine in mum’s room and made her a special menu!! How awesome is that, thank you to everyone at Shendish Manor.
At Harry Potter’s studios they have moulds of all the casts hands and my hands are the same size as Emma Watson! We had a fantastic trip, the worse thing about having such a wonderful time is the coming home because mum has been poorly since, just mostly sleeping or when she’s awake she’s sore and tired but always smiling! Well mostly smiling!

I was on the TV, Waterloo Road started back this week and I appeared 3 times, it was so sad  though because mum had fell asleep and we couldn’t waken her. Andy recorded it but I got a text in the morning from her how sorry she was for letting me down, you could never let me down mum and anyway we watched it when I came home after school.

Mum hasn’t decided what to do about the Botox, I think she should get it, maybe it won’t help, maybe it will but imagine never knowing if it would have made a difference to pain. When I say pain I don’t mean like a headache pain, it’s like a pain that makes her pass out or cry so hard that it’s unbearable to watch. She is really funny and so gentle and kind, she got my friends tickets for Hairspray so we all going there on Tuesday, bet it be awesome!

It’s been proper busy weekend with birthday party and ice skating today after my friends stayed last night and although Monday is a holiday off school, I’m working at Waterloo Road. I’ve had an awesome weekend though so thank you to my mum, Andy, Hazel, Jacob, Poppy, Kirsten, Sian and the twins, I’m sorry if I missed anyone.
Love you mum all,the way to moon and back again xxxx xxxx xxxx xxxx
Rhanna and Sam at the hotel


5 responses to “Make you feel my love

  1. wilma0750 says:

    Well samantha youv’e proved yourself over an over again just how strong willed you are thank god am sooooo happy your wee jaunt was all you hoped it would be and done u some gd re the botox i cant tell u what to do for the best but if the powers that be think it will help might be worth it to be pain free for a bit hmmm . What does andy think ????? oh aye before a forget u get txts everyday hen u must b seek o gettin them fae me lol ,its aw happening on the 13th u wi ur appointments me an rhanna away to corfu thanks to you an andy my scan was meant to be fer then changed that sharpest lol , the moras another day hen dig in luv u infinity xxxx rhanna how cool did u look on the broomstick awesome ur a natural lol you are a star in oor eyes and we r all sooooo proud off you xxxxxxx

  2. snailspace1 says:

    So sorry to learn that you are in pain! My doctor had told me that with MSA I would have no pain. I told him that some folks I have read of on the Internet did have pain, but he wouldn’t listen. Grrrrrrr! Is there something you can take to make it more bearable? I can’t stand the thought that you are in pain on top of everything else!

    Your e-friend,

  3. Alice James says:

    Great post! I am soo glad you wrote about the mixup of unbearable loss with the wonders of living! So tired of the mantra stay positive. I have a full range of emotions just as you do. I am amazed at your energy and stamina making the trip. I see myself ebbing away bit by bit…
    But I am just as aware as ever. Thanks!

  4. Judy Green says:

    Thinking of you today Sam.Hope you and the Dr reach the best decision for you about Botox.
    God bless you all.Love and prayers,Judy x

  5. Leslie Jones says:

    sam, you are an amazing woman and a great inspiration to me, just starting to suffer the symptoms of MSA. I admire your willingness to share all your thoughts – happy or unhappy. you relieve much of my anxiety just to know that your obvious goodness and humor can still shine through. Blessings be on you, Rhanna and Andy every day.

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