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

Friendship and caring

on March 19, 2013

MSA rhanna andy and samSam:
Friendship…what does that mean to you? I think we all have different ideas on what a good friend is, not so long ago I wrote to Ellie (who does the techy stuff on the blog) but I asked her not to post because I was just venting.

Anna and SamBut actually everything I said was true, friendship to me is that you NEVER give up on a friend especially because you may HAVE HAD ENOUGH. I cannot stand with a passion people who claim they are so caring and genuine when in fact they are the complete opposite. My friends, my true friends are often what get me through a day, I know the ones who will keep their promise and look after Rhanna for me.

blogfriendsAndy says all the time that I’m to soft, always prepared to give people the benefit of the doubt. Please believe me I couldn’t take anymore kicks,Rhanna, Hazel and Poppy lies and nasty little comments that are meant to be heard… I firmly believe that what goes around, comes around and the bite you get will be far worse than anything I can say or do. Rhanna has her friends just now who can make me giggle just by being here, I believe them to be true friends for her who will be there when she needs them.

Chris Bell and PaulaAnyway enough of that, my friends and you all know who you are, I love you all very much and am truly thankful for your friendship. One last mention about friends R.I.P Chris Bell, you loved Paula and your girls and for that we loved you, the collection at Chris’ funeral was donated to the the trust £539.
Thank you so much Paula, love you xx

We ended up this week fighting for funding, it takes a huge amount of pride for me to say we needed a little help but I realised that I wasn’t being fair to Andy, we had it all sorted for a few weeks but it appears that honesty doesn’t always pay! I won’t fight anymore because it takes up far to much energy, energy I could be spending with my family and friends.

We actually have a lot more than a lot of people, not monetary value but so much more ❤

I also went to the service this week at church and it was lovely, really lovely and I’m glad I went, I couldn’t give a hoot what anyone else says, it’s the right thing for me and if it provides them with a little gossip, more fool them.

We have little things planned to give us something to look forward to and Rhanna stars her driving lessons next month OMG!!! So it’s been a very mixed week, up and down, confusing and funny, happy and sad… Bring on next week!!! Neuro appts, doc appts, Lots of love Sam xxx

Blue badge renewal, personal care, respite, and strangers – just another week!

“Yes Sir will post your renewal form out” (Aye, right!!!!) A week later I go and pick the form up myself, fill it in, run down to the offices. “Sorry Sir, you need this bit certified.” Run home get it certified run back down to the offices, “Thats perfect Sir, we will get it processed.” (Aye right!!!!) Six days later the post arrives, we need proof of your home address! So this morning back down to the office “That’s perfect Si, we will get that processed’ (We’ll see.)

Personal care,  “No problem Sir, 2 showers a week, if you need more that’s not a problem.” Bill arrives unexpectedly £72!! (Aye, right!!!) Umpteen phone calls later to the social services office, Sam had already cancelled half of her personal care in the last few weeks due to being to poorly, “Sorry Sir, if you cancel you still pay.” Really? “Rules Sir, sorry.”

Respite …too long a story.

Strangers, a lovely man I’ve never met contacted me after reading Sam’s blog, he had lost his wife in 2010 to MSA, I had a lengthy telephone conversation with this man, he shared his experiences, passed on some wonderful advice, hopefully will meet up soon.

Life as a carer, its tough enough looking out for your loved one, making sure you make things as good as they possibly can be for them, trying to get someone to come and sit whilst you try to fill out forms, run up and down to the offices, going round in circles, trying not to lose the plot and someone saying “Sorry Sir, it’s just the rules.”
Remembering the 26 tablets she has to take, remember to find the time to sit and eat! If  it wasn’t so sad I think it would be pretty funny, sadly its not funny, everyone out there who is caring 24/7 should be getting a break, not being wound up!!

Apart from that its been a good week, feeling better after sharing that, lol, love you Sam xxxxxxx

11 responses to “Friendship and caring

  1. wilma0750 says:

    Well hen stuff the lot o they fairweather friends u dont need them in ur life they not worth a second off your time. as you say its been a hellish week for uz the tight fisted social services uz got nowt to thank them for just wonder if they sleep gd on a nite time they should be ashamed . sod them anaw . well tgats me had a wee rant . oh aye an c the folk that pass snidey comments sod them tae . now samantha the time has come for u tae be having a very well earned rest uve dun more than enough fundraising and you really do need to spend your time wi ur wee family luv u infinity xxxxxx andy bet u wish u had a twin sumtimes aw that running abt nae wonder ur knackerd aw the time its defo no fair son shower o pigs them social work dept . am sure we will manage somehow but know this andy ma wee heart hurts fer u xxxx

  2. Totally agree with Wilma, Samantha AND Andy you need to take a step back from the fundraising, you need to spend time TOGETHER as a family with whatever time you have left, God willing if our prayers have anything to do with it that will be a very long time!!! You are so inspiring all of you for caring and sharing what you are going through but you are right Sam and Wilma, true friends will always be there and the others are just NOT worth a second thought. We have been amazed but not surprised that out of the 30 people poor Geoff sent his email to only about 6 have donated!! We’ve had plenty of emails with good wishes etc but no one putting their hand in their pocket and these people are VERY WELL paid!! I will certainly be letting them know what I think when Geoff passes away!! Today and tomorrow trying to concentrate on my email to the Health Minister and the Shadow MPs, probably won’t even watch but have to try. Love to you all as always, in our hearts forever xxxxxx

  3. Judy Green says:

    Hi Sam,I’m so sorry you’ve had such difficult week.All these ‘Jobs worth’ people driving Andy up the wall!!I really felt that the money for a shower even if you’re not well enough,is so unfair.I thought Scotland was more generous with health care,but it doesn’t seem to be the case.I suppose it’s the social care angle.would you be able to prove that your needs are nursing care because of the risk that infection would affect your health?Just a thought!

    Although Wilma’s comments also expressed her frustrations I smiled to myself,recalling my year training as a midwife nearly 50years ago in Edinburgh.The words and dialect came flooding back…..Hen!!

    Loved the picture of you 2gorgeous girlies and Andy all dressed up for your fundraiser.So pleased it went so well.And very pleased that you managed to get to church and enjoyed it .Hope you can go again.Brian and I go to our village church and feel very supported by our church family. Love and prayers,Judy

  4. We have a wonderful supportive group of family and friends ….. Today hopefully we found out we getting the finance for Andy and Rhanna which is fab so I want to say a massive thank you to everyone who has helped!! A continued thank you for all your support and for reading the blog, following and forwarding and just for being there! A special thank you to redding church and Mary, lots of love Andy, Sam, & Rhanna xxx

  5. annaw53 says:

    always here for you all massive hugs xxxx

  6. annaw53 says:

    done ever let nyone get you down you have the people in your life that you need the rest can run and jump, xxx

  7. Karin says:

    It is heartwrenching to hear the difficulties and insensitivies that you encounter. Yet it echoes some found in South Africa too. Whilst it leaves me humbling that you have done so much for MSA awareness, my wish is that practical aid will be extended to you, Andy and Rhana so that you can enjoy some simple pleasures in life – as you so deserve to. Love from the tip of Africa. and

  8. May the Lord send His blessings upon your family. May He fill each of you with His strength and peace. May His healing power flow.

  9. Heather Buckel says:

    Love to you Sam, and Andy and of course Rhanna xx The red tape we have to go through as carers is so frustrating and filling out form after form after form is so annoying. I want to spend quality time with my husband Mick not doing admin. God bless you all, cherish each and every precious moment you have. Take are xxx

  10. Jean says:

    So sorry this has been a bad week. All of you deserve peace. I am glad you went to church because it can be up lifting. Spring will,bring sun to shin on you. I think of spring as a new beginning. It snowed here (N H USA) all day. It is beautiful to watch but lots of work to clean up.
    Love to all of you. Praying for better weeks for you.

  11. Janelle Bottle says:

    Hi Sam, Andy & Rhanna
    I have been reading your blog for a while now as I had thought of doing one as well. You are all very courageous for sharing your intimate thoughts and struggles and are to be congratulated for bringing awareness to this horrible disease. I must confess I had not heard of MSA until I was diagnosed with it in July last year, after being sick for a couple of years. I ended up falling and fracturing my ribs due to the loss of balance I was experiencing. Sometimes I tell myself I do not really have it and that it is all just a mistake. I live in Australia and I was caring for my husband who has younger onset Alzheimers Disease. In the past year I have gone from working and being fit and active to having to walk with a stick to keep me upright. By the end of each day my balance is so bad I can barely walk at all and I have Parkinson stiffness and tremors. I read with interest what you wrote this week. Many of the people I thought were true friends have disappeared from my life while some people who I hardly knew have totally suprised me by being absolute Angels. It’s funny how things change. Well thats about all I will say for now except keep blogging and lots of hugs to all of you.Cheers

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