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


on May 28, 2013

Coping? Grief? Loss? Healing? Time? …REALISATION
This, is it. This is my heart and soul and totally honesty about the last few weeks for me, I’m not asking you to read it because it isn’t all Disney and fluffy pink, it’s actually really s***! Does it have a happy ending, well you have to decide whether to read it or not…

I have been constantly unwell, I mean I know I’m already constantly unwell with MSA but this is a different kind of unwell, this was an unwell where I lost my ability to cope with life, everything was impossible, Rhanna and Andy took over everything, I hid away in my bubble only coming out and smiling when I needed to I had no idea what was wrong with me. I’m not normally like this, I can usually pick myself up and get on with it… I have cried, sobbed till I was broken and still couldn’t have answered Andy why. He was asking me what he could do and I was saying nothing, leave me alone, I can work this out.

I look in the mirror and see somebody else staring back at me, a neck collar to stop my head drooping, my stomach swollen, tubes poking out and then little totally skinny legs which really are useless and feet, that I can’t find amazing shoes for.

On and on this went, days of crying, nights of lying awake sobbing, hurting… I don’t mean hurting as in outer pain but hurting so much inside… I thought I had depression, went to my GP and he diagnosed me with the most simple fact REALISATION. Finally I’ve admitted I’m dying (not in a joking manner) which was my usual way but in a punch in the stomach way, and it took my breath away, all of a sudden I felt so lonely and utterly terrified even though I have a wonderful family and friends.

I don’t want to die, I want to stay alive with my family with my most precious daughter Rhanna and the man who found me and made me a better person Andy, please give me time and let me live my life, even if it means living like this. If I could stay like this and not get any worse, then that would be ok, apparently this is me bargaining with god… I’m not bargaining, I’m begging, give me time to see my baby grow, I know that won’t happen and so that’s why I haven’t been on Facebook or answering calls because I was in my bubble and although I’m climbing, well wheeling back out, I still feel like that ugly little person who has MSA.

Doesn’t it make me sound incredibly selfish all of that? I have had so many people do wonderful things for me, I’ve been shown incredible kindness and created many wonderful memories that I hope I take with me when I die, I’m sorry to all the people reading this who think what a cheek after everything we’ve done, please believe me I’m very grateful for every moment, every second you took to make me smile…sometimes REALISATION is a heartbreak.

Sam, Andy and Rhanna<

27 responses to “Realisation…

  1. Judy Green says:

    Dear Sam,I am feeling your pain.But despite your loving family,I can only imagine that dying must be such a lonely journey.None of us are in that place and inspite of all that love,you are the only one who knows what it feels like.
    The only thing I can say is what I know to be true.You made promises to God awhile ago at your baptism,and his promise to you is eternity with Him.Whats more he is the only one who knows your pain as he gave His son Jesus to go through that lonely journey to the cross,because no one could feel or understand what he was feeling.But He didn’t hesitate because he knew his job was to save each one of us.
    So He knows just how you’re feeling,and He loves you and Rhanna.Andy and your mum.put all your fears and concerns into His hands and He will get you all through this.
    Hope this has’t been too “heavy going” to read.Love and prayers,Judy x

  2. illa says:


  3. wilma0750 says:

    Well hen ur the least selfless person that i know and ur entiled to feel the way that u do and sumph theres naebody mair scared fer u than me i think hen i feel everything that u do christ its sair an id luv fer everything to b nice fer u ,but u know hen ur still the same wee lassie inside msa cannae change that thank christ id give anything to make it better hen but am a bit lost as to what to do fer u luv u infinity xxxxx

  4. Jodi Beveridge says:

    Sam you are not one bit selfish. Everyone will be there for you no matter what, I cant be there for you as often as i’d like but i always think about you. You are one strong person, the stongest person thay i know:) The people that truly care for you will be there for you throughout this realisation, but just know we all love you<3

  5. Our dear darling Samantha, I write this of course with tears running down our faces as I read it out to Geoff. I cannot pretend to imagine knowing what it feels like to know you are going to die so I will not lie to you. I can only imagine what you are feeling and how Rhanna is feeling seeing her darling mum going through this and for Andy of course the love of his life struggling to stay alive. I only saw my dear mum cry once when she was dying and that was when the nurse asked her what she was going to miss. And she cried and said she had always been here for me and Geoff and the boys to help us and how were we going to cope without her. I of course assured her she had done her bit and we would carry on and cope fine. And even though my heart was breaking in two we did carry on and we did fine. My mums faith was never dented for a minute. She knew where she was going and even though she fought to the end she accepted her lot. I feel that from that point on she realised that yes we would cope without her and life would continue. And this is what we now pray for you Samantha. And that is acceptance. Rhanna is a beautiful young woman and yes it is wicked you will not be here to see her achieve everything in her life. And leaving Andy when he “found you” and made you whole is soul destroying. But I am totally convinced of 2 things and that are that Rhanna and Andy will be just fine. You have a truly wonderful family around you and they will make it there mission to care for Rhanna and Andy. The 2nd thing is where you are going. As I’ve said to you many times I now truly believe that you and everyone travelling this awful journey of life with MSA is walking the path Jesus Christ took on his way to the cross. The day you were baptised you were placing your life in his hands and he will NEVER let you down. Give all your worries to him and he will willingly take them from you, he is with you every step of the way and when he meets you as he surely will you will feel love like you have never experienced before. God bless you Samantha. You will be in our hearts forever, and remember the angel story I told you? Well don’t you forget it. You will never leave Rhanna for a second xxxxx

    • Thank you so much sweetheart! Getting baptised was one of the most positive things I’ve done and I find peace through that…..I’m finding my strength again and climbing back out this hole, love you both very much xxx

  6. Pam Bower says:

    Dear Sam, It’s not selfish to be scared for yourself and for your family. I wish I could just hug you. Hold on to the love you share with your family and closest friends. They are most important. A million kisses. xxxxxxxxx

  7. annaw53 says:

    here for you always, never feel alone xxxxxxxxxxxxxxxxxxxxxxxxx

  8. Fiona Thomson says:

    Sam I want to give you a huge cuddle and I wish I could make things better for you. You aré a truly amazing lady with an amazing family, they will be with you always. Xxxxx

    • Francine Martin says:

      Dear Sam, You have touched my Spirit in a Major way long before your body has let you down from the MSA. When I see your picture, it is as if I am looking at the most pure person I have ever seen, a real Angel on Earth. Sam don’t feel guilty for any of your feelings, they are yours to feel because you are the one going through the journey MSA has put you on, you are human & these feelings of yours are normal for one that is fighting the dreadful life destroying MSA. You are a Champion, a Mighty Warrior, You are Fighting the Good Fight with all of your Strength & Love with Dignity & Inspiration to others. Even if the MSA causes your human body to stop working & causes the end of your Life on this Earth, Sam…You still Win…Heaven will be Your Eternal Home & when our time comes, we will meet You again…I am one of Your MSA Family Menbers & I Love You very much ❤

    • Thank you Fiona, I’m being old home baking helps lol, love Sam x

  9. Lois Sparbel says:

    Sam – I have been struggling with the realization of MSA and death. Please know that you are not alone in this dark place. I don’t know how long it takes to find my way out, but I guess there is no other option. I think of MSA as dying by half an inch each day. You are in my prayers, and thank you for sharing your experience, I don’t feel so alone now.

  10. debi holcomb mckinney says:

    Dear Sam, You are not selfish at all…just realizing for the first time what’s really happening. That you can’t change things and that’s got to be very scary. I wish that we were close in location so that I could help you…so that I could spend some time with Rhanna, get to know her. I, too, have MSA, but I’m at the beginning of it. I lost my mother when I was 17 but wasn’t allowed to be around her for the last few months before she passed away. I’m really glad that Rhanna and Andy are with you and that you’re all able to share this. You have so many people who love you. I know that you might feel alone on the inside but you have so much love surrounding you…know that the angels surround you and God loves you more than anything. Sending you big soft hugs.

  11. Heather Buckel says:

    Dear Sam, please don’t feel that you are being selfish. Anyone would want to choose life over the alternative. From what I have read from you since December when my husband was diagnosed with MSA, you are the most selfless person that I know. Who doesn’t want to see their child/children grow into adults with families of their own. I am sat here with tears running down my cheeks and would do anything to take the pain, fear and distress away from you if I could. Don’t give up, you are a very strong person who just need a bit of respite from the pressures of living. Take care, I am praying for you every day. Xxxxx

  12. Liebet Marie Jooste says:

    I lost my beautiful Mom on the 4th of March this year to MSA. We walked a very intimate road together for 5 years and it was beautiful and heartbreaking at the same time. She would have turned 62 on the 12th of April. I know that I will never really know what she herself went through, and the thought of what she must have gone through just breaks my heart again and again. I wish you so much love and peace and beautiful times. Liebet (South Africa)

  13. Angie Armitage says:

    Sam   Our heart go out to you and your family. Your post is so honest.   I care for my husband Eric and he has just been in our local hospice for some rehabilitation – and when I was back at home – REALISATION as you say hit me like a thunderbolt – about Eric not being in our home and my life when he is not in our home – I fully understand what you say (even though mines is from his wife’s point of view) – you are one hell of a brave a lady as is my husband Eric.   You have to let your battle gear slip sometimes – you and your family are amazing and do so much for everyone else fighting this battle…… you are not alone……… hundrends of us out here are praying for the very best days for you.   Love, Light & Peace   Angie Armitage


  14. Wendy says:

    How can you apologise? Why? You are at a heartbreaking point in your life, you are leaving behind your loved ones and how else would you cope? I am so sorry for you and your family. I had never heard of MSA prior to reading your story online and it’s obviously a devastating condition. I wish there was a cure, I wish there was an answer for you. Take the time you need to grieve, love your husband and daughter, cry when you need to, laugh when you can. Many are caring about you all.

    Wendy (Colorado, USA)

  15. Ana Castillo-Thomas says:

    I visit your blog from time to time with the understandig of what you are going through because my husband has MSA. This last entry touch me deeply and made me feel sad. May this realisation help you to accept our impermanence on earth and prepare you wholehearted to take one day at time with peace of mind.

  16. Tanya says:

    Dear Sam:
    I understand the feeling. I get it in cycles so to speak. I understand the fact that I am dying an untimely death and cry and bargain, and sort of let go and then I find peace. But some time later….here I go again. Last week I had the suprapubic catheter placed and while I was in hospital I got this crazy idea. I have three girls and a boy the eldest 14 and the youngest 6. I decided I wanted a symbol of me being there with them in the toughest times so I decide to buy them…..handkerchiefs. Sound Crazy? Probably. But I imagined the girls on their wedding day, a day I will surely miss and I guess they might cry a bit. So would´t it be nice to have a beautiful embroidered handkerchief to wipe out those tears? if I were alive I would dry them myself, but as that seems improbable, the best I can do is get them something to remember them I will always be there. I don´t think you are selfish to be sad. And the people who have been there for you won´t feel “betrayed or disappointed” by your unhappiness. They are probably very sad too. And when we all try to smile all day and look only at the bright side of things sometimes we miss the chance to talk about the fact that you and those around you are all grieving. Sometimes sharing our sadness makes us feel closer to each other. Go figure. I have never met you, and yet I often think about you and feel sad that you are ill and you have such a great husband and a beautiful daughter who will miss you terribly. Our stories ARE sad, and deserve to be cried upon. And sometimes being this an adult onset illness makes it harder, because I think: (probably not very nice of me) this si not supposed to happen so soon! other patients have grandchildren, but my youngest is just about to finish kindergarden! They NEED me, I should get a better prognosis. But this MSA thing just doesn´t work that way. I am very sorry that you are going to die although I have no idea when that might happen. I am also very sad I am also going to die. Who will die first? No idea. And our stories are very, very sad indeed. I am very happy though that you are being able to climb out of that sadness as this roller coaster of emotions can make you very tired. Living this way is hard, so every now and then, our heavy hearts have to get washed so they can shine again. And the heart is usually washed with tears. There is almost no way around it. But your beautiful heart is beginning to shine again, and that is good. Sometime in the future it will need some washing and you will do some crying. It is not a shameful thing. It is just another thing we have to get used to. All my love and hugs to you.

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