myfamilyandmsa

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

MSA – when is enough, enough?

on March 30, 2013

Sam an d Rhanna at the fundraiser
Sam:
When is enough, enough? I want to keep fighting this awful disease with every breath I take but it’s so hard!Sam and Andy
We went away for a couple of days with my mum and Ali and I totally messed that up by sleeping at least… erm, 80% of the time. The times when I was awake were fab, mum thought she turned into the birdman of Alcatraz constantly spotting new birds and feeding them!

We played the chase and guess who won? Yes ME hehe Alister! Accept defeat like a man! Rhanna stayed at home and I think she appreciated the break, that’s her on Easter hols now so hopefully things pick up and we can do nice things together.

I have the MRSA bug back so perhaps that’s why I’m sleeping so much and the pain is indescribable, I don’t normally,spend my time moaning and I’m scared that this is just a further advancement of MSA? I hope it isn’t, I hope it’s just because of the MRSA bug. I’m sorry that my blog is a little depressing this week, my problems are no more significant to someone else going through something, I just hate the thought of constant pain or sleep. It’s a bit of a circle really, you take the painkillers which make you sleep, you wake, take the painkillers, fall asleep and on it goes…..

I am also getting so confused about things? Do others feel like that, it’s weird because in my mind it is very logical but when I say it, it sounds ridiculous!

Then my phone died, talking about losing a best friend! It was beginning to get harder to use so we were going to change to the iPhone 4, then I can connect to my keyboard.
Aarrrgghhhh so annoying cause my trade in has gone! So this week has been full of bumpy potholes, tears, laughter, and hugs.
It’s had it’s great moments with friends and ermmm, wine oops! And great moments with family what better medicine can there be than that? xxx

Rhanna:
Hi everyone, well that’s my drama exam sat, only another 4 to go 😦 Mum, Andy, Granny and Grandad went away for couple of days to celebrate grandads birthday which was in feb but that’s ok, he’s 109 now!!!! Hehehe I’m kidding he just looks that age, he’s actually 70.
My other granny and grandad went up to see them and the all had a meal which mum said was really lovely but she missed me 😮 I bet after two weeks off school she won’t miss me so much.

Poor mum has been proper poorly and has that bug MRSA again. She’s really tired and sore though and sleeping lots.

It’s my birthday in a few weeks and I know what I will be wishing for when I blow out my candle. I hate to see mum trying so hard to be ok when she obviously isn’t and now she starts to say things that makes no sense at all, we all started laughing but then last night I thought oh my god mum must be so hurt we laughed, but we aren’t laughing at you mum, we love you way to much to ever to do that. I think it’s because we don’t know how to react and I’m sorry if we have made you feel bad.

I know you weren’t very happy about me writing to that person and I’m sorry for that too; but sometimes mum you need to just accept people want to help without wanting anything back, actually that’s you!
That’s who you are, always willing to give where you can, love you mum to the moon and back again xxxx xxxx xxxx xxxx

Advertisements

4 responses to “MSA – when is enough, enough?

  1. wilma0750 says:

    Samantha we so did have a lovely time away me an the wee birds had a lovely time think they gonna miss me lol just a shame ali an andy get to the golf oops . and dae u know what hen so what if u slept a lot if it helps then am happy an u got to admit its funny when ur haen a wee gab tae ursell lol , joking aside tho we did have a nice time an u shoodnt have any regrets bt it xxxx it would b lovely if that bloody infection would clear up an give u a bit off space maybe u get lucky at the respite xxxxxx

    • Sam says:

      Awww mum I had lovely time, just felt bit,guilty,at sleeping do much, Andy and ail,get game of golf another time, another place, hopefully. Your wee birdies be looking for,you,but at a least andy left half a baguette lol….. Love you sooooo much xxxxx

  2. Judy Green says:

    Dear Sam,I’m pleased you managed to get away and have time together with your Mum and Ali.What a shame that wretched bug came back.I reckon that has caused the sleepiness and the muddled feeling ,so it should’nt last.Just stop apologising….I’m sure you’ve got nothing to be sorry for!

    There’s been lots of stuff on Facebook publicising MSA.,which has been helped by you and your lovely family’s efforts .That was a great picture of Rhanna and the giraffe !!
    Hope you all have a nice relaxing Easter weekend.Never forget ,that’s how much God loves us

    Love and prayers,Judy

  3. Heather Buckel says:

    It was good to read that you did manage to get away and although you slept a lot Sam, it probably did you all the world of good just to have a change is scenery xx

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: