myfamilyandmsa

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

MSA, carers, and auctions

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

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Holidays, exam results, appointments and catching up.

Sam:
So it’s been almost a month since my birthday and what a wonderful magical time I had. I received 136 birthday cards and to those 136 people thank you so much, it meant the world to me but meant a whole more to Rhanna because it showed her in times of adversity people always come together to help and support. image-11

I would love to tell you that since my birthday I’ve been wonderfully well but that would be wishful thinking, I’m only awake now for very short periods of the days and fall asleep as though like hypnosis! As Andy is helping me to eat I fall asleep, I try watch my favourite programme, I fall asleep, 5 minutes in the car I fall asleep and its always a hit or a miss when visitors are here because regardless of how hard I try sleep will undoubtedly beat me…very rude!!!

It’s very hard sometimes to write about what your inner most thoughts are because you know your parents, family and friends will read it and of course you spend all your time telling them your ok.

I had an appointment with the hospital last week and the doctors were trying to figure out the spasms, the pain and the lack of motor skills. I sat and said I’ve accepted that I’m going to die but I can’t accept that I’m going to leave my family and friends. You know you get people who say that “I heard somebody lived 10 years” I bloody hate those statements, who would want to live ten years with so little ability, I realise that I bet a lot of you think that’s selfish but aside from what it would do to the person with it, the carer loses their lives as well.

Rhanna has been on summer holidays so we have had great times, even if it was just watching a film eating food we shouldn’t be lol. We went to the safari park with Rhanna and Poppy, it was brilliant, my party with Rhanna’s friends Hazel and Jaynah. In a small way it was so good for me to see her with people who will stay by her side. She’s been busy doing shifts with Waterloo Road and is has got a small part in a series coming up on the BBC called Shetland, she has changed so much in such a short time, its amazing but my baby has grown into a wonderful young lady.

I’m in the process of building a website (says 5 minutes) on it DON’T BELIEVE IT lol!! It’s for MSA more and auction site as opposed to using my Facebook all the time but Rhanna has done a page explaining MSA for the younger families who sadly became affected with this disease. We had the wonderful opportunity of catching up with Katie Rigg who gave us some great ideas and was as always just amazing!!

I do have the most wonderful news…we have a thing in Scotland every year called The Big Hearted Scotland Awards and Andy has been nominated for the big hearted carer award!!!!!!! Can you imagine that, all the people that were nominated and my amazing incredible hubby made the shortlist, he’s already my hero, I don’t need him to have an award to prove that, without him I have no idea how would any of us would cope.

The other thing I’m so incredibly proud of is that Rhanna passed all her exams, maybe this time she can get the cards lol, she worked so hard during a time where we all just found out and my baby was falling apart so to pass and with flying colours is the best thing that could ever have happened…so sometimes just know when you truly want success, you’ll never give up on it. No matter how bad the situation may get.

Talk to you next week 🙂

Sam & RhannaRhanna:
OH MY GOD thank you so much to the god of exams because I passed…yippee. I know I could have done better but with everything that was going on I cant believe it! My mum who always says she’s proud of me and was over the moon and if she could be jumping up and down she would be hehe.

We haven’t written on the blog and it actually feels quite odd because it really makes you see how quickly things change in such a short time, mum sleeps all the time and I worry so much about her even though she says I’m not to, I’ve been doing stuff with friends to and I’m really very grateful to two special friends, Hazel and Poppy.

2Rhanna and hazel      Rhanna and Poppy      Rhanna and Emma

I love all my friends although I like to keep a small circle you know you can trust forever and ever and then the same again hehe. My mum is like that too, she has lots of friends but only a couple of special friends.

Andy has been nominated for an award for carer of the year, mum said it should split between us hehe. We have been doing lots of things together which has been lovely and I have been busy with Waterloo Road and filming a series called Shetland with Douglas Hensall, its very exciting, just a bit part but everyone has to climb that step one at a time as mum says all the time!

Who knows Hollywood could beckon hehehe, I’d give it all back all my hopes and dreams if it meant mum getting better, she says watching me live my life and following my dreams is what her dream is anyway if that makes sense hehe, mum and Andy gave me a card for passing my exams and my first bouquet of flowers ever and money to do something.

None of that made me feel as good as my mums cuddle although when I woke up this morning and my room smelt lovely it was pretty amazing!
love you all the way to the moon and back again mum xxxx xxxx xxxx xxxx

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