myfamilyandmsa

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

Hit with a little bit of magic.

on June 10, 2013

Sam, Andy and Rhanna
Sam:
I haven’t written anything for the blog recently, for a few reasons, I needed to take a break as my head was all over the place and I was really toiling to get through a day without crying. The other reasons is that it’s a lot harder for me to type now my hands and brain don’t work in sync anymore (example I just wrote myhandsandbriandomtwork) I don’t even know a Brian 🙂

In short I was falling to pieces and nothing anyone said made a difference to me, I wanted my old life back and would settle for nothing less, now I’ve realised that actually I’m still the old me just with some adaptations…

Anyway we were very kindly given money from a very special friend and her family who are to remain nameless but as I have no memory of that…we were very kindly given money from a very special friend and her family Katey Wallace, Carolynne, Anna, grandma and Pedro!!!

northern lights houseWe used it to book a cottage in Skye, a different bit this time Waternish where there’s fairy bridges and fairies, beautiful stories, stunning scenery and if you are very lucky the Northern Lights. We were very lucky and we saw the lights, they weren’t dancing around so much but apparently that’s because it wasn’t so dark but who cares I’VE SEEN THE LIGHTS!!!!!!!!!!!!!

northen lightsI feel like I was hit with a little bit of magic, in that moment it was like MSA? MSA, who?… I can never explain to anyone the bolt that hit my heart at my moment and I believe, proper believe I’ll be ok when the time comes for me because with magic like that well that surely means my granny will be waiting for me and we can watch the lights whenever we like.

On the way back from the lights we started a conversation about clouds…northern lights 2 Yes ok we know there’s scientific reasoning but we believe that when you die you can bounce from one to the other, sit and watch your loved ones and all from a beautiful big white fluffy cloud!!!!!!!!

So we are home …oh wait I forgot to tell you in our immense hurry to see the lights Andy hit a wall, burst a tyre and now our car is all damaged down one side….was it worth it? DAMN right it was!!!

So anyway now we are home and life undoubtedly will throw its ups and downs, I feel more ready for them, that might not last but I will try….

We are planning an online auction with some wonderful prizes, not sure when yet but will keep you updated and I believe that Rhanna’s friend Jaynah and a bunch of friends are organising another dance. And in October we have a great event going on, I’ll share more of that with you in next couple of blogs.

northern lights sam and andySo even though I’m feeling worse with MSA I’m feeling better within myself if that makes sense? Probably because I have the best husband, best daughter, best friends and best family and I love you all!!

Oh and to Lynn at the Ochills coffee mill, my biscuits were amazing!!!! And to Edna who makes the best custard creams and truffles ever….. We really should sell them 🙂 

Rhanna:

YIPPEE YIPPEE YIPPEEEEEEEEEEE my exams are all finished and at last mum said I’ve turned back into a human again hehehehehe!! We don’t get our results till August but we’ll just forget about that just now.

northern lights purpleMum seems lots more settled than she was and I’m glad for her, not for me or for Andy but for her, I don’t think she cried at all in Skye even when Andy hit the wall, if she did cry she did it in private. Things are lots harder and we know that will be our last long haul holiday it takes nearly 6 hours I think, so next time we will stop overnight to take a break.

I hate our government, they ignore what is on their own doorstep and send millions of aid to other countries. I’m not meaning that nasty but sometimes you need to look at your own doorstep and fix that crack first, of course other countries need help but what happens when we become one of those countries needing help?

northern lights rhannaAnyway back to happier things, we had a wonderful week in Skye, we played games and spent time just reading and talking. Mum slept a lot and when I say a lot I mean A LOT but if that’s what her body needs to rest then that’s fine, she gets so sore and I would take that off her if I could, horrible things shouldn’t happen to good people, she also falls to the right hand side all the time now which wasn’t helpful on the way home, poor Andy had to keep pushing her up because she was sleeping. She’s getting a new super duper wheelchair if anyone has a trailer thing for the back of your car with a roof then let us know cause chair isn’t fitting in our car and it weighs 11 stones, any ideas welcomed hehe!

This trip did us all good, we’re more upbeat, mum is definitely happier which obviously affects us so roll on next week and let’s see what it throws at us and thank you for sticking with us whilst mum took a break, love you mum all the way to moon and back again xxxx xxxx xxxx xxxx

northern lights green

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13 responses to “Hit with a little bit of magic.

  1. Pam Bower says:

    So glad you had a nice holiday and some much deserved magical moments! xoxoxox

  2. Angie Armitage says:

    Hi   So glad you found a little magic in the ups and downs of MSA – a tgrue miracle.   About the powered wheelchair – my husband has one and we have a motability car converted – they are called WAVs “Wheelchair Accessible Vehicles”. So not sure if your Mum gets Disability Living Allowance – but this is what Eric gets and we “rent” the car through the Motability scheme.   Hope this info is of some use.   I find your blogs very useful, uplifting, honest – and we could ask no more of you all.   All our Love   Angie & Eric Armitage

    ________________________________

  3. Judy Green says:

    Dear Sam,Andy and Rhanna,so glad you had that lovely holiday.I had a Chuckle.My husband is called Brian.One of his cards on his recent birthday said “to Brain”!!
    Glad you are feeling more in control Sam.It must help to have Rhanna’s exams out of the way.Thats always a pretty stressful time.Perhaps you can all enjoy a bit of “chilling”now.

    Love and prayers,Judy(and Brain !)

  4. illa says:

    very very happy you had great time together ,my prayers for you all .

    love illa

  5. Heather Buckel says:

    Sounds like you guys had a ball. Take care xxxxx

  6. We had great time, came back heavier,with all the fudge and tablet mum made as well!!! yummy!!!

  7. Fiona Thomson says:

    So happy you all had such a fab time and were lcky enough to see the northern lights. Rhanna, you are a young lady wiser than your years and are quite correct, the government should look on their own doorstep first.
    As for a trailer, we could always make something, or borrow Anna’s horsebox !! lol
    Glad you are all a bit more settled, and as always sending my love t you all, Fiona xxxxx

  8. debi holcomb mckinney says:

    So glad that you had a good rest. That’s so important for all of you….time to reconnect and relax. Seems like we all get bogged down with the day to day problems we face these days; it’s hard to face everything when we’re bombarded with it constantly. I’m glad that you’re all together and that you have each other to lean on.

    Rhanna, I’m so happy that your testing is over….YAY!!! You are a wise young woman.

    Love each other. Take time to enjoy each second. Sending all good things your way 🙂

  9. Chris Kerss says:

    So pleased you were able to take a holiday. Sadly I am not able to do that with my dad, he has been bedridden since his diagnosis of MSA. I am riding up to Scotland this week to raise money for MSA Trust and won’t be that far away from you. I will think of you all. Take care and stay strong it’s not always easy I know, but you can do it. Well done Rhanna for completing your exams. 🙂 Bless you all. Chris xx

  10. joyce wilkinson says:

    So glad you had a lovely time as a family. Am well jell about the lights. Good to see your spirits lifted. Take care and enjoy each other. X

  11. Lois Sparbel says:

    It’s really a relief to hear of your battle with MSA, at least I know I’m not totally alone even if you are in another country. Unfortunately I have no support, no caretaker or family member to help me.. I don’t know what will eventually happen but God will be with me anyway. Keep writing.

  12. Jean Ramsey says:

    Your blogs makes me smile, think, learn and sometimes sad. But, I am glad you write the truth becaue we need to know how you and your family are doing. Dealing with MSA is sometimes lonely. Thank you for your message. Hope you have a good week. Love to all of you.

  13. Caroline McIlwraith. says:

    Hello, you wont remember me but I met you briefly when I was at your fundraising event in West Lothian a few months back. Great to near you had a lovely time in Skye, mit is a beautiful place. As it happens I have a box trailer I am looking to move on, feel free to email me if you are interested. Caroline.

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