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

Not all superheroes wear capes

on October 8, 2013

 Light a candle for MSA
I lost a battle this week, one that has been going on for quite sometime, but alas I don’t have the fight anymore, I’ve agreed to a hospital bed. This is the bit where I say what I haven’t even said to Andy, I’m so utterly terrified that this could be the end of our marriage as we know it and we become “friends” …what I know is this is an embarrassing subject but no-one talks about it and how many people married 7 years are still “at it” all the time.
I don’t think it’s Andy I think it’s me but I miss the closeness of just a cuddle but he’s scared he might hurt me, my skin breaks if you look at it just now!

There is no explaining to you how much I love this man, the fear of leaving him hurts me much more than the fear of dying does, same with Rhanna. But I miss him, sitting on the couch beside him, holding hands, having a carry on and just loving him, something I thinks he’s more scared off admitting? So here’s hoping this bloody single bed sleeps two and we can have fun with the electric buttons hehehehehe.

I have sores on my b. u .m I don’t why I said it like that instead of just the typical Scottish way of saying ‘ave got sares on ma bum’ I also have one in my thigh from lying foolishly In that direction for a stupid length of time, anyway they are sore and the carers from “allied Healthcare” senior carers, I add! Marionanne pulled the whole dressing off after two, not three…two! The agony I was in, the truth is though that she probably saved me from getting an awful infection as the dressing that been put on was way too small!
Just prior to that,  I’m not even going to tell you about that, Fiona running up my path and almost knocking herself out! Buy a sports bra missus, hehe.
I jest about these people but without them I wouldn’t be able to cope the way I do, even just shedding a tear or the way they really are with you, which is caring I really do think I’d be lost now.

Today is world MSA day (3rd October) where everyone comes together lights a candle and donates what they can, we did what we could and have a family charity event tomorrow. I’m not a silly young girl with dreams of cures and magic cream but I do know now that MSA sufferers/family/friends and carers don’t need capes to be superheroes.

Fiona and 'Amy'Well the charity night ended up being a great giggle with Fiona, one of my carers was up on the dance floor like she was 18 and dancing round her handbag only she took the whole dance floor as her own with my very dear friend Lynn from the Ochils coffee mill, they definitely showed the kids how it’s done lol, the video is on Andy’s Facebook and you tube!!!!

Rhanna did her first proper tribute act at the charity night as Amy Winehouse and she was amazing, totally incredible, she has the nicest set of friends and she was definitely on her platform, happy, relaxed and like any other 17 year old.

Andy in a lotusThen on Sunday Andy had his super car experience that Emma bought last Christmas and he loved it! He spoke to the guys there and “Hamish” took me around the track going faster and faster every lap, it felt amazing, it felt free, it felt exciting and for those small minutes Andy became even more important to me even more than my superhero because he helped me feel like I could achieve anything.

So although now I’m totally exhausted and sleeping more than normal, we had a great weekend as a family. Oh and just lastly our nephew and his girlfriend had a little baby boy, welcome to the family baby Flynn lots of love your great auntie Sam xxxx

I don’t know where to start…this week has been awesome we went to see seven brides for seven brothers but I was meant to go with mum and Andy but mum was ill so I ended up “with a sore leg” in the wheelchair so we still got to go, the show was amazing but oh my god wheelchairs are not comfy.

Mum has been poorly much all this year every time she picks up a little she falls back down again, I don’t know if she sees it or not but I try not to worry because she believes so much in positivity.

Sam and Rhanna and friendsAnother World MSA DAY and we all lit our candles and said our little prayers to whoever might be listening and tomorrow we have disco party thing, we are hoping mum understands this was meant to be for her but we wait and see, mum believes strongly in friendship and she loves the friends I have now and says I’ve relished and changed beyond all recognition of the girl I used to be! Oh, oh, oh I passed my theory test just got to pass driving test now and erm my coordination isn’t the best, sometimes I even trip over my own feet hehehehehe .
Andy and 'Amy'
Am doing Amy Winehouse at tomorrow’s thing so please keep your fingers crossed for me that I don’t crash out!!! Hehe!

I did it! I did my Amy tribute and it went good, I have to say thank you to my auntie Becky and my friends Hazel, Poppy, Emma and Laura and Rachel and everyone else, I love you all!

Mum woke up at 3 on Saturday, got up at 6 and was sleeping again before X-factor, it’s so different from last year when we had our munchies and we sat and watched Saturday night tv, somehow this Saturday made it all the more obvious and I found that really hard, I hate really hate what it’s doing to her!

I’m really sorry but I just want to leave it here this week but I’ll write again later on, love you mum all the way to the moon and back again, Rhanna xxxx xxxx xxxx xxxx
Sam in the Porsche


4 responses to “Not all superheroes wear capes

  1. says:

    It is so wonderful all the things you guys are busy with…that car ride sounds like an amazing experience Sam! I remember my Mom loved just riding around sometimes…to get out and move and see things:) So can just imagine what that special speed car ride did for your senses and soul! Rhanna, it hurts to see the changes happen I know. By the sound of it you are taking in all the moments you can with your Mom and that is wonderful! Sam, about the hospital bed..I’m thinking of you facing that specific fear you have…yet I am also glad you will be more comfortable now! I lay with my Mom on her hospital bed and it was very cosy xx

  2. Lana Schimpf says:

    Just a quick thought..I don’t know if you know or not but my sweet husband, Larry, went to be with our Lord and Savior on Sept. 6th. I miss him much. Your bed conversation reminded me of the good things! Larry was in a hospital bed at night for over 4 yrs. I slept on a daybed next to him. Remember the hospital bed is on wheels 🙂 I would roll him next to me many a night so we could cuddle, and so I could reach out and touch him. I needed him near. Yes the control on the bed makes for a few giggles, watch that the caregiver is not laying on the control…The first reason Larry went to the hospital bed was because some nights he would have nightmares and would fight, but it was me that got hit, not fun. He would tell me of dogs chasing him and sometimes he thought he was caught under the covers and would fight to get them off..sooo the bed was important for that. Later we added an air pressure mattress because of skin issues and also to keep his lungs clear. That worked great. Some things for the skin that did not work where the pressure pads that the nurses wanted to put on him, when they removed them skin came off with them. So I didn’t let them put them on anymore…they were horrible…I did always keep Larry’s skin dry and I used a medicated powder on his creases. He did not have anymore skin issues. I hope this helps. I will try to stay in touch. Remember to move, move, move it keeps the lungs clear and the skin good…Every little wiggle counts. In Christ I am Lana

  3. Our darling Samantha our heart breaks for you, you are so so young to be going through this evil disease and even though we have had 35 years together and I know how fortunate we are to have had that time and will be eternally grateful to God I cannot begin to imagine how you feel having found your superhero and will not be with him for that length of time. Geoff now has the hospital bed and the air mattress arrived today and I, like you have cried buckets over the “end” of things as they were.. At the moment until we get my bed ordered I am either sleeping on the sofa in the lounge or when I’m that exhausted have gone upstairs reluctantly to bed. I lay in bed when I’m in it and cry buckets because as you say just the cuddles/giggles and messing about are gone, even though we are a lot older than you!!! It is the end of an era and because we live in a house and Geoff is downstairs and I am upstairs I fear he will never again be able to come into “our” room. Just a little thing but it sure brings it home to you how things have changed. Geoff now has a sore on his back but as yet thank God it isn’t too bad but will no doubt worsen. This is one hell of a disease and to say I hate it must be the understatement of the century. No one on this earth understands just how this destroys life only the people living it and caring for those living with it. All I can say as always is try and live each day and find the “joy”, I find that very very hard at the moment but it is all we have and the only silver lining as I always say are the people like you our darling “brightest star” that make this journey that much easier, having been allowed to share in your life and your suffering we feel very honoured indeed. Am so so sorry for all you are going through and of course darling Andy and Rhanna and we send you our love, hugs and prayers as always, you will be in our hearts forever xxxxxxxxxxxxxxxxxxxxxxxxx

  4. Judy Green says:

    Dear Sam,I can only echo the things said in the previous replies.I’m so sorry to hear about your pressure sores.I trust you have the best pressure relief mattress and that the district nurse is treating your sores and getting advice from the local Tissue viability specialist.PLEASE keep off your bum as much as should spend the afternoon on the bed so as to relieve the pressure and turn from side to side 2 hourly and at night.My mum(92) has Alzheimer’s and is cared for in our local residential home and has been bed bound for 2years.She is free of bedsores despite her inability to move unaided,thanks to the vigilance of the care staff .I don’t know what your diet is like but you may need some food supplements and plenty of fluids,which I’m sure you have because of the supra pubic!!

    Sorry about the rant ,but as an ex district nurse I know how these wretched p.sores can take hold.Youve got enough to cope with without them.Hope you sleep well in your new bed !!

    Love and prayers,Judy

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