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

Multiple System Atrophy -highs and lows

on May 3, 2013

Sam, Rhanna and Andy
So after a week of highs and lows and coming to terms about how sad Rhanna really was, we have spent a lot of time speaking, being very honest and taking time to talk about our fears for the future, I think we have reached a point where for at least another amount of time, everything will be okay again.
I’m aware our road has been somewhat rocky lately but there will be days where it’s better, those days will always overshadow the bad!
As a family we can fight this battle together, we can giggle together, laugh out loud at the ridiculous and cry when we need to, I think now we realise that we can do those things and everything will still be the same.
We can never stop hoping, dreaming and trying, we have to focus on the future and try hard to look forward positively, as hard as it is. As best we can, we have to try and not worry every day, when you worry every day you lose perspective and very quickly following that you lose your sanity.
msa collageMSA affects families in every way, everything changes, some of your family accept what can’t be changed, others hit the Internet looking for a cure, some don’t accept it all, the thing is there is no right or wrong on how you deal with it.
Following my blog last week rather than trying to understand that I’m a mummy first and foremost and I will not stand back and let anyone hurt my baby, the person involved in a small way choose to remove me from her Facebook, she’s protecting her family, whether they are right or wrong and that’s fine, I can only hope that somewhere inside she realises that she would have reacted in exactly the same way. 😦
I have made many new friends through MSA and through the trust, it would be amazing to organise some kind of huge get together a conference if you like, I know the benefits would be amazing!
Andy has been busy in the garden trying to getting it looking lovely for summer so I can sit on the recliner and feel the sun…. It’s funny because I tend to listen more now than ever before, everyone should do that at some point, you will be amazed at what you hear.

Sam's dressIt’s hard for me just now as the shops are full of summer clothing things you def cant wear with a supra pubic catheter but after months and I mean months of having to wear fat slippers because of the problems with my feet, Andy solved Sam's shoesthe problem extra wide shoes in a bigger size and Karen from Zuri boutique solved my summer clothes very easily with a maxi dress!!!!!!!
So stuff the lows. Rhanna, Andy and I have had some highs this week… Am clinging onto them… Well, not exactly clinging, cause my hands don’t cling but with wonder web, lol, it’s amazing what you can do. 🙂

Everything came crashing down on me, I felt like I was drowning, school was too tough to cope with exams, friendships lost and watching my mum get worse and there’s nothing you can do to fix it, you’re useless, hopeless and just rubbish. I felt like I was adding to the list of the bad things.
Now I feel a little stupid feeling like that and I should have gone to my friends or my mum, Andy, my granny’s, honestly I have my friends right beside me but I felt alone, Poppy thank you for putting a comment on the blog, I love you totally hehehehehe and Hazel thank you!
Anyway mum and I spent a lot of time talking this week and things are better, I’m not so stressed although I hate to see her suffering and it breaks my heart that one day she won’t be here but I’ve been firmly told to concentrate only the now!
Rhanna in Waterloo RoadYippee, today is the last day of school for exam leave which means I have time to study, spend time with mum and friends and hopefully some more shifts on Waterloo Road, I’m am extra in series nine and so far I’ve done 4 shifts since April on set, I love it everything about it and my mum said it makes her so happy to see me happy.
My Uncle Iain ran the London marathon for MSA, I would like to commit to something like that but I’m definitely not a runner so I’m thinking of something else, all ideas welcomed! I have an idea in my head that maybe will work but once I have it all sorted in my own mind I will speak to the trust first.
I don’t feel 100% yet but I will get there, who am I to complain when sometimes mum can’t even do anything.
Sam wearing the maxi dressMy mum is my perfection, she can’t wait for the sun but then gets so sad because she doesn’t feel pretty, she’s beautiful but because of the catheter bag the clothes she has aren’t any good for this summer, she’s got a very pretty maxi dress though and that made her smile, she’s beautiful, more beautiful when she’s smiling ❤ love you mum to the moon and back again xxxx xxxx xxxx xxxx

Sam, Andy and Rhanna

8 responses to “Multiple System Atrophy -highs and lows

  1. wilma0750 says:

    Thank christ uve not lost ur sense of humour , and uve hit things on the head hen just u be urself and stuff wot others think , wot ur doing for the trust and others is fantastic and dont u forget its wot u an urs think and feel is more important than the little people luv u infinity xxxxxx beannie just u keep doing wot ur doing cos u will get there nae point in worrying a think ur turns cumin an god help them , oh aye before a forget remember the wee auld wumin that drives u here an there when u hit the big time luv u zillions xxxxxxxxxxx

  2. Karin says:

    After reloading the page I see hat I am indeed able to post a comment. Tha)nk you to both of you for, despite the difficulties, you continue to share your story. I think of you often as I continue my walk with Sonja (odd choice of word as she too, can no longer walk). Hugs from the tip of Africa.

  3. Fiona Thomson says:

    So glad you are back on track, xxxx

  4. Heather says:

    Sounds like you guys have had a real tough time. It is so hard to put aside your loved one who is ill with this terrible disease and concentrate on yourself for a little while, I know just where you are coming from Rhanna. I love to read about what kind of week you all have. It gives me great strength to cope with what lies ahead for Mick. Take care, love to you all xxx

  5. Dear Samantha, Andy and Rhanna,
    So pleased things have been sorted out re Rhanna and how she was feeling and that you have all talked a lot and must concentrate on the here and now. The future will take care of itself and Rhanna my darling you are destined for BIG things. You have your mothers spirit, kindness and beauty and will have a wonderful life. Yes Sam oh yes wouldn’t it be wonderful to have a big get together – I have always said that we will have a BIG party one day, in this life or the next and if I don’t get to meet you here I won’t let you get away!! I will be the one tapping you on the shoulder in heaven and saying “Hey remember me, the crazy woman from down south who posted LOADS on your facebook page and wouldn’t leave you alone”. We will have one hell of a time believe me!! But it would be wonderful to try and arrange something to all meet up. Might have to send a few of my persuasive emails out and try and arrange something……….Love, HUGS and our prayers as always to you all, it has been a pleasure to meet you and is an honour to know you and all of your family, darling Wilma included!! I think of her as my surrogate mum/nan and hear my nans voice every time I hear from her!! xxxxxxxxxxx

  6. carolynne wallace says:

    Sam, you are beautiful, inside and out, as is rhanna,. Andy, Well ????, ok him too.
    Big hugs xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

  7. Chelsea brown says:

    Hi Rhanna, what you are doing for your mum is very special and she will be very grateful. My father suffers from MSA so I know what you are going through. I would really love it if we spoke through email or Facebook? If you would be okay with that…. Please add me on Facebook Chelsea Brown, or email me please, I would relly appreciate it. thank you :))

  8. Alison Robertson says:

    What you are going through is so awful. My husband had msa though it was not diagnosed until after death. We were suspicious when parkinson medicine did nothing for him and I felt it was msa after reading about it.Like you he always kept his sense of humour. I admire you so much and my heart aches for your daughter. Keep fighting and enjoy each day as much as you can.

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