myfamilyandmsa

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

Taking a break

on February 18, 2013

Sam on holiday in SkyeSam:
We have had a crazy couple of weeks, a while ago we were approached about doing a documentary about raising awareness and showing how families adapt and cope whilst living with a terminal illness.

We spoke about it as a family and everyone agreed, for me it kind of feels like leaving a legacy of what my journey has been like and what I’m trying to do. I can’t answer that question for Andy or Rhanna. Anyway the camera crew who were AMAZING have been and went and we will hopefully see the finished article soon, they were incredibly kind and sensitive to my family.

As you know from my last blog my hands haven’t been good, we were hoping just because it was because of a bug I had, sadly I think the realisation is that my hands have just broke (not in bones breaks) but just broke. Its extremely difficult for me to truly say what that means to me, in lots of ways I keep thinking no, they will be working tomorrow but tomorrow hasn’t come for me yet.

It means I cant feed myself, write Rhanna a note for school, write out cards, brush my teeth…lots of thing you just generally take for granted are now a mission for me. I have the most amazing family and yet at times the feelings of loss are overwhelming.

Rhanna and Sam in SkyeWe went to Skye this week, a few days away to spend together just us and Molly, it was magical, our cottage was right beside the waterfront, we had otters playing on the rocks, seals swimming past (Andy thinks he saw a crocodile hehe). At night Andy and Rhanna wrapped me up and we sat outside looking at the stars, I swear it was so beautiful, so clear, so peaceful and so perfect. That night in bed I cried as though my heart had broke, not because Andy or Rhanna had did anything wrong but i just felt so lost, so utterly heartbroken that I am going to leave them one day and I want to hit out and say no!

I wouldn’t change a minute of our trip and hope we have the opportunity to do something similar in the future. We came home to changes here as well, these are the things that scare me the most and the ones I have fought against for the longest, the extended care. People coming in to help me with personal hygiene, showering, teeth etc.. It’s like admitting MSA is one step ahead of you. All the respite info was here as well so it was a double whammy!

Even as I write this I’m aware it sounds ungrateful, lots of people don’t get support and I know how very lucky I am, however lots of people don’t get MSA, I know how very lucky they are, I wish with all my heart I was one of those people.

We have our fundraising nights coming up in March, the ceilidh on the 9th and the bingo on the 19th both set to be great nights!
Wouldn’t it be incredible if just like in a Disney movie you get to make a wish that comes true, I know what my wish would be…

Rhanna:
I’m now a tiny little bit closer to my dream, I’m now in an agency and Rhanna in Skyehave my portfolio so all I need now is my break hehe! Its amazing cause its exciting but still a little tainted.
We have just had an awesome week in Skye just totally relaxing, reading, chatting and having the best time! I know my mum is really sad about her hands, she gets really annoyed and keeps wanting to try, it’s hard to watch her do that but if that’s how she needs it to be that’s ok with us.

It feels like already things have changed so much since Christmas and we all hurt for what we don’t have anymore. If you could just have seen my mums face looking up to the stars you would have kept that moment in you heart forever, I know I will.

Mum doesn’t have a bucket list, she has a wish list and its all very do able, well most of it is anyway…Philip Scofield if you read this your pretty close to my mums no 1 wish, the northern lights are no1 and I don’t know if we can make it happen but I hope so.

The rest of the list is easy, afternoon tea somewhere posh, a makeover cause she believes shes ugly! Champagne at Harvey Nicks, lunch on a boat dolphin hunting and free reign in river island hehe. We have done the things she wanted to do, the enchanted forest, a trip away with our family, Skye, raise awareness, charity events.

Everything is about family with mum, I wish we could wrap her up and keep her safe and cosy. It’s been my prelims and I’m no hurry to get the results, it’s so hard to focus on anything other than mum and I don’t want to look like an attention seeker all the time so I don’t really mention it, my friends love my mum and she treats them awesomely, now we just sit back and hope mum just continues like this for a good while and keeps the other horrible symptoms of msa away.

I’m so proud of you mum, you are beautiful and I love you all the way to the moon and back again xxxx xxxx xxxx xxxx
Sam and Andy
Andy:
Its been a couple of contrasting weeks, firstly a camera crew arrive at our house for 3 days they are all really nice, very friendly and I feel really at ease with them all. Time for my interview, one of the first questions I’m asked is to describe Sam? That throws me right off, I’m thinking of all the things Sam is to me, I’ve got a lump in my throat and tears in my eyes even before I’ve attempted to answer. It’s gonna be a long interview!
It’s very strange how all the thoughts in your head are tucked away, you know that they are there but you try to avoid thinking about them (like the elephant in the room), you know its all too painful having to actually describe your feelings. It’s incredibly hard when the whole time you are trying to convince yourself everything will work itself out.

I was listening to Sam being being interviewed about rhanna it was incredibly moving, I had to nip out mid interview to the chemist to get Sams medication I jumped in the car and the music playing was Sam and Rhanna’s song, Shania Twain…your still the one, they had sung it together on holiday a few years ago at a karaoke bar, the lyrics are uncannily true considering they both nearly died when Rhanna was born, unbelievably spooky!

Sam and Andy in SkyeWeek 2, we’re off to Skye on holiday for a week, its was amazing 7 miles down a single track to Kylerhea, a wee cottage about 20 feet from the water, no shops, no lights, no internet, and a mobile phone signal kinda half way up a tree outside the cottage which came and went without any warning, pure bliss, Sam, Rhanna Molly and me away from it all, we had a ball.

I am convinced though Sam and Rhanna took advantage of my better nature by coming up with the worst words ever for scrabble, trying to convince me they existed (don’t think so) funnily enough I lost every game!!

The memories that will stay with me from this holiday are watching Sam with the biggest smile sitting on the window ledge in the living room with her binoculars spotting otters playing in the water yards from our cottage, the stars at night so far away from the street lights making them unbelievably clear, the flames in our coal fire that warmed our room and the smell that Sam said reminded her of her childhood, and the peace and quiet with the ones that I love that will never be forgotten.

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22 responses to “Taking a break

  1. Sending continued love to you 3 and all the family as always, am always in awe at how brave, inspiring and brilliant you all are for sharing your inner most thoughts with us all. It has helped Geoff and me so much and know exactly where you are coming from. It is one thing for the carers to watch their loved one battle but for the actual patient of MSA it must be so hard. Geoff is deteriorating and losing strength quickly now. As you say Andy we just miss the simple things you so took for granted back then, walking the dog TOGETHER, ALWAYS holding hands, snuggling up together, we just try and appreciate each moment now. Our oldest son Dom is coming over at the weekend to take some “family pics” of the 4 of us, I wanted to book us into a proper studio to have them done properly but as he has the good camera and all the gear he said he will do it. I just want special pics of the 4 of us together because as we know with this evil, vicious disease tomorrow is not promised,
    With as always our love, prayers and hugs to you all,
    Carole and Geoff, Dom, Alex and Jacob xxxxx

    • andyc2204 says:

      Carole you remain a star in our eyes, your comments are always beautiful, we take photographs all the time …. moments captured in time!! with love and hugs to you all Andy, Sam & Rhanna xx

  2. Hello
    I have sent comments before but then never hear anything, so I will try again in the hope that you receive this one.
    My dad has MSA and is 8 years in, he has recently taken a turn for the worse, the speech, mobility, swallowing all being effected massively and we are juggling drugs to see if that has any effects however big or small. I am trying to covince my mum who is my dads carer that a district nurse would be good help for her and slowly but surely I hope I am getting through to her, but it is a similar situation to you and Andy, they don’t want help and are happy to do it themselves. My husband takes my dad out once a week so that my mum gets a rest and dad gets a nice day out. I read your blog every time you post one and I can totally understand what you are going through, me and my husband are cycling across Cost Rica with global Challenges in November, to raise funds for MSA I hope we raise some cash it is the least we can do for such a crippling disease that is so unfair , I hope I haven’t bored you, thanks for reading Jo x

    • andyc2204 says:

      hi Jo, thank you so much for taking the time to write a message, im so sorry about your dad … its hard for everyone wether it the sufferer or their families, its such an awful disease, please never worry about being boring…. goodness you anything but!! please keep in touch and thank you again for your message, Andy, Sam & Rhanna xx

  3. snailspace1 says:

    By making the effort to record this family blog you are giving a gift to so many people who are, or will be, going through this same struggle very soon. It is beautiful to see a family so united and devoted to one another. May God bless you! Thank you for sharing your story.

  4. illa says:

    GOD BE WITH YOU ALL .

    • Francie Hutton says:

      I am following your blog and find you all probably have more strength in you that you don’t realize. God is actually running the show. Some day we will know the reason why for all of this.

  5. wilma0750 says:

    Well sumphy it was a nice weekend for the three off you and it was really nice having uz here on sunday even molly think she enjoyed her bit o dinner just being relaxed and comfy makes a difference to no stress cool!!! regardless off your illness ur still u an nothing or no one will ever take that from you and its the best medicine for me just hearing u laughing and just being you , your priceless xxxx rhanna my best pal in all the world we are all here for you every step off the way and regards to ur prelims just give it best shot we are so proud off you xxxx andy i dont know what the hell wed do without you if ever anybody deserved a medal or summat like that it would be you everytime ur a diamond xxxxx

  6. Jayne Watson says:

    So glad to hear you were able to get out and about, sending you all my thoughts and best wishes from across the pond.

  7. Angie says:

    This is the first time I’ve come on here to read your blog. Amazing what you are sharing and what you are doing. My heart goes out to you and your family. My husband Eric has MSA and he is in his 6th year with this cruel disease. We have only been together 9 years so feel really cheated of our time together. Not quite what we had planned – but we battle on side by side. Sending all our Love to you and your family

    • Hi Angie, thank you for taking the time to read our blog, I’m so very sorry about your husband, Andy and I have been together for 7 years this year and yes you are right, MSA does rob you of so much, but it can’t ever destroy the love you have for each other, keep in touch and love and hugs to you both xxx

  8. Kelly Martin says:

    Hello,
    My Aunt Janet has recently been diagnosed with MSA after having years of symptoms and mis diagnosis and scans (she is in her early 50s). She has a husband and a daughter of only 19.
    She isnt doing good at all this week. She is in our local PDRU unit at Glasgow Southern General Hospital. Her mobility has been gone for a while now, her speech was bad last night, her BP is dangerously low again and her fluid retention is also a worry. But she is my hero.
    We are all very interested in the fund raising in Falkirk so please contact me with details.
    Love to you all
    Kellyxx

    • Hi Kelly I’m so sorry about your aunt, living with MSA is awful and please,don’t ever hesitate to get in touch if you need any help my email address is samcrawford13@live.co.uk. We have a few events coming up, one on the 9th march which will be great, a ceilidh come disco come entertainment night! Then on the 19th a bingo night then in April a quiz night in Edinburgh we put it all on our fbook page msaholdingontohope and I have flyers etc that I can let you see with all the info … Will be thinking of you, your family and your aunt and hoping she improves for you all xxxx

  9. Shell says:

    I think your family is both very brave and generous sharing your life with MSA for all to read. Raising awareness is so important, most people look blank when I talk about it. I lost my own mum in October 2011 and she was self conscious about it, always been a private person, and people stopped visiting because they couldn’t have a conversation with her anymore when her speech was so impaired.

    What you are doing is a legacy for all, your family, fellow MSA sufferers and their families and the general public. My heart goes out to you all on this painful yet very precious time.

    I am now helping to fundraise for the MSA by doing the London 10K in memory of mum and all people affected by MSA. I hope one day research into this terrible disease will pave the way for the slowing down or eradication of this terrible disease.

  10. Lin Newbold says:

    Dear Sam, Andy & Rhanna

    So happy that your trip to Skye was a success. I love being able to see the stars in total darkness…its awesome but it has a way of making me feel humble and insignificant.

    I have the same feelings when I read your blog Sam. We travel the same journey but our routes are different and if I could swap mine for yours……I would in a heartbeat, my dear friend..

    I know how it feels to cry so hard that I cant breathe, but although my legs are giving up, my hands are just about usable…..but I would still swap if it meant you could have more time with your lovely family.

    You spread so much of yourself, with all the fund raising you do and the awareness you spread, but hold a little back for you…. your earliest posts on the MSA Trust Forum. seem so long ago now, I just wish I could give time back to you all. You so deserve it ….keep wishing eh Sam ?

    Much love from
    Lin xxx

  11. Kathy Dickison says:

    I hope you get your northern lights wish Sam. Until then, here’s a lovely pic of them!

    http://www.guardian.co.uk/travel/2010/nov/13/aurora-borealis-northern-lights-travel

  12. Fiona Thomson says:

    So glad you all had a lovely tome in Skye. You are an amazing family and I send you our love xxxxxxxxxxxxxxxxxx

  13. wilma0750 says:

    Maybe this time i will be lucky tried three times now . and so sumphi am so glad that u had some perfect peace and joy wi ur wee family i know how hard the last couple o weeks have been for you what with the interveiw and your wee hands no working least its no ur mouth god forbid lol ive watched the changes in you happening every week and yet you still dig deep just keep on doing just that , im no sure who my heart breaks more for wheather its you andy or rhanna just know hen its right sore for the three off you , i would give my life for yours to be better cos thats the way it should be . you have every right to be proud off yourself for what you have done for the msa trust and maybe if everyone had the same attiude as you then the trust wouldnt want for much just you keep on being proud hen luv u infitity xxxxxxxxx andy what a proper human being u are the courage it must have taken you for that interveiw just awesome and thats what you are awesome and by the way you cant kid a kidder i feel the same pain as you luv u pal xxxx rhanna my best pal we will see your name in lights one day cos u just the same as your mum same grit and dermination sooooooo proud off you beannie luv u zillions xxxxxxxxxxxxxx

  14. Heather Buckel says:

    Once again I am left with tears streaming down my cheeks. You are all so inspirational and I thank you all from the bottom of my heart for being so open and honest with your feelings. It must be so hard sometimes. We are planning to go to Disneyland Paris later in the year as part of our building great memories of Mick before things change, for the kids and grandchildren, oh and of course me too. Send great big hugs to you all. Keep on rocking lots of love Heather xxxxxxxxxx

  15. Ria FFM says:

    Sam, after following your story through facebook and trying to help sell tickets for your charity night, it’s been lovely to read your blog, you seem like a lovely family and this will help other people that have just been diagnosed and will offer support to sufferers in general… You have touched my heart with this and your recent video was beautiful… I hope all of your wishes come true and if I can help at all, just ask… I will continue to follow your story and send lot’s of love and hugs to you and your family xxx Love Ria ( Falkirk for Mums )

  16. Shona Darroch says:

    Hi there. I think this blog is really beautiful And really inspiring. I can imagine a lot of people will be helped through this blog. It is full of love I feel overwhelmed reading it. I hope you are having a peaceful week sam. Can you keep two tickets for me for the fundraising night?love and hugs shonaxx

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