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

MSA…doesn’t show kindness

on March 7, 2013

MSA rhanna andy and 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 đŸ˜€
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

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

8 responses to “MSA…doesn’t show kindness

  1. Jean Ramsey says:

    Thank you for allowing me (and others) to read about you and your family dealing with MSA. I fell for the first time Christmas 2011 and have been dealing with the disease and with a disease causing me to loose my vision. I feel your pain and share your tears and pray that God will help you through this. You are helping so many patients and their families. May God Bless you and your family.

  2. Karen Hennessey says:

    Knowing exactly how you both feel. My mum and I are going through the exact same thing. Mines in a care home now unfortunately but its he best place for her. Like you she avoids the hospital at all costs. Enjoy your holiday

  3. says:

    Hi Sam, Andy and Rhanna, I just love to read your blog it gives me great strength and I hope that my Mick will be as strong as you are Sam when this horrible disease really gets hold of him.

    So sorry to read that you are in terrible pain at the moment Sam. Hope you enjoy your respite it will do you all good.
    Take care and love to you all, Heather x x x
    Sent from my BlackBerry® wireless device

  4. Such true, MSA is not kind. I love seeing your two perspectives.

  5. Liebet says:

    My Mom had MSA for 5 and a half years. On monday evening (4th of March) she passed away in her own bed surrounded by us. She would have turned 62 on April 12. What a terrible disease, what a painful loss. I wish you and your family strength, endurance and many many loving moments together. These are very difficult but precious times you are facing together. Liebet (South Africa)

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: