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

MSA, carers, and auctions

on August 22, 2013

Sam CrawfordSam:
This hasn’t been my strongest week, all kinds of problems with my bladder and bowels (the subject no one ever wants to talk about). I have tablets for one thing then tablets to counteract the side effects of the other tablets and in a week I take over 100 tablets, the pains I have are indescribable…

None of those tablets help me as much as Andy does, helping me get dressed on the days when I feel like it, feeding me without making me incapable and protecting me from the ignorance of others. I cant believe in a year how much ours lives have changed but you have to try and get up and continue to smile….

I sleep mostly leaving Andy kind of alone in the sense of the word, you know what I mean, I’m there but I’m not? He makes me smile when he walks in the room and I love him more than I can explain.

Rhanna who is without a doubt my reason for fighting this horrible disease has taken to coming in to my room in the morning and just spending half an hour or so with me just yapping about nothing but its magical! We don’t really talk about anything but its one of my favourite things now. We’ve had the great district nurses in and my wonderful GP trying to make things as comfortable as possible, hopefully things will be better soon.

You know all the tablets in the world don’t make up for care you get from family and friends, I’m also very lucky to have carers come into to help with washing etc and one of my carers who is slightly bonkers  is no longer just a carer to me but a friend who makes me feel better about myself.

Carers are so incredibly important and undeniably under rated, without help from them it doesn’t bare to think about the amount of people who be suffering in a horrible silence with no help from anyone. The carers that come into our house often work 12 hour shifts and all the time with a smile and a way to make you laugh. Without them people like me would be stripped of my dignity, that’s how much my carers mean to me and in a very short time you learn you can imagetrust them not to turn away in disgust if you haven’t managed a few days without days them.
I’m very very lucky because I have Andy, Rhanna and the rest of my family but its not their job to do all my personal things so to the carers I have coming in your not just my carers but my angels, I’m sure no one will mind if I singled out Fiona Ure who is on holiday in her “boat” thank you from the bottom of my heart for making me see that getting carers in was never about admitting defeat its about accepting care.

Carers allowance is a pathetic rate and Andy and I obviously don’t have as much as many but we have each other and Rhanna and Andy’s kids, even Rhanna’s friends who would help at the drop of a hat. The “official carers” that come in get paid very little for their job, you can only assume they do the job because they have heaters big enough to care.

I said to Andy tonight I wish we could go back a few years if only just to show him how very much I love him and walk hand in hand.

Sam's mumMum and Rhanna are going away for a short holiday in October and please believe me no one needs more than her, it breaks my heart to look at her and see what I’m putting her through, what I’m putting everyone through I suppose but I don’t have the ability to stop the bloody thing…

I can still do loads for myself but I dread the day I can’t, the day I’m not me anymore because I can’t think of looking in the eyes of my loved ones Andy, Rhanna,my parents, Andy’s parents, my sisters and seeing only sadness there, I don’t want to lose my smile.

I feel I’ve ranted about carers and lack of care they get, Andy has been nominated and shortlisted for the Big hearted Scotland award for carer of the year, he has already won in my eyes, there’s very few with a heart like Andy’s so I suppose really this week is bout saying thank you, thank you to everyone who takes the time to email me, I always welcome and write back, thank you to the very wonderful angel who fixes the blog! Thank you to my carers especially Fiona with her odd little ways and infectious laugh, and lastly thank you to my family and friends, without you I’m nothing so there you go, I adore you all!

I must must must mention our auction site on my Facebook page, its there every week but we have a the most amazing prize on the site it’s from two very wonderful people Alex & Tanya who own a classic car company ….this really is amazing so please get behind us and do us proud….right are you ready ? They have kindly donated one days car hire with the choice of a MORGAN a TR6 a CATERHAM or the MGB, you can see more about the cars on their website which is caledonian classics they are also on Facebook as well.

I can tell you from experience because I did this for Andy’s 50th and we had the most wonderful day. These people have only came into our lives because of booking one of their cars and I promise you, you would extremely hard pushed to find a nicer couple, I will get pictures up on my Facebook ASAP but meantime please take a look… They also offer B&B if you a bit further afield, what better excuse to come for a visit!!

Lots of love everyone, Rhanna isn’t writing this week but she will be back next week. xxx

Sam, Andy and Rhanna

One response to “MSA, carers, and auctions

  1. Illa. says:

    God bless you ,wishing you happiness , have a good bank holiday ! You are surrounded with love ,be strong and positive god is big….I am from Persia lived in your country for a long time may be more English than Persian ,I have a strong faith .if ever I win the lottery you are in my list ! Nice first class holiday for all of you .i love all people any nationality and respect everyone’s religion .god bless illa .

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