A new journey

It’s surprising how quickly something that was completely alien to you becomes the norm

MSA Multiple System Atrophy

Never heard of the thing have you? Well I know all about it now, I’ve spent a week soaking it up like a sponge. This is what Ma has.

It’s quite rare (bloody woman couldn’t just get something normal could she!) it mimics Parkinson’s early on, hence why she’s been treated for that for 2 years now and there’s no cure. It’s terminal.

It’s a strange thing being told this, I think because we don’t know anyone with it, it’s not on the telly, there’s no celebrity raising awareness of it, it’s an unknown entity. And for me certainly that kinda takes away the ‘terminal’ thing.

It’s like the start of a journey, we don’t know how long that journey will be, I’ve read people can live for anything from 3 to 15 years. And what happens during that time varies a lot. Having said that Ma has deteriorated so much in the last year I think we will be at the lower end of time.

Her autonomic functions will stop working, some already have, some are on their way. Blood pressure control, toilet control, swallowing, speech, mobility, vision. Everything we don’t consciously control. It’s a daunting prospect and paints a grim picture.

I don’t think she fully understands yet. The Drs have told her she has this, but have yet to tell her what will happen, what to expect. That will come soon I’m sure.

I’m very aware that people who know me will be not knowing what to say, and I’m also aware that it’s not what people want to hear about all the time, it’s like a big elephant just entered the room and filled all the space.

It’s quite lonely to be fair, I would always talk to Ma when things were tough and I can’t do that this time. Im hoping blogging may fill the void in some way.

We will see

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September Goals Day-1

So here we are again, another month, another blog challenge. The last one was in February.. times flown proper! Feels like only yesterday innit. But actually loads has happened since then.

I remember the last day of that blog challenge I wrote that I had probably revealed too much about myself, personal shazzle. I will keep that in mind this time, but can't promise I can change

Deep breath… Day 1

My goals for September…

  1. Get thinner… not setting an amount, I just need to be lighter than I am cos proper fat fuck right now and hate it. Don't want any of that "you're not fat, you're lovely" crap. I am.. fat… as fuck… end of.
  2. Walk everyday for at least an hour… this will hopefully help with num 1… and I love autumn walks, my favourite time of the year. Fallen leaves, not quite cold but chilly warm evenings, colours! So many colours in autumn. Just a beautiful time
  3. Train Max.. well excited about this, he's so good already, he's not has one shat in the house, I promise not once. Couple of pees cos I forgot to watch him. He sleeps all night, sits on command, comes when called and waits for his dinner. September he is gonna learn what stay means
  4. Tidy me garden.. you know last year I bloody loved doing me garden and this year cos of the caravan I aint hardly touched it. It needs work before winter, got weeds on me weeds I have
  5. Clear out my Twatter of all the dead wood… those pricks who follow and never chat, they can fuck right off. Am a bit off social media just now to be fair. Binned snapchat innit
  6. Complete this Blog every day.. thats well easy, I can talk rubbish all day every day innit

Much luvs 😘

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Rosie’s Rules

Rulenumber1Know yourself

i don't mean love yourself, I actually don't believe in that saying. Some days I love myself, some days I hate myself, sometimes I'm just okay with myself and that's fine
And I think that's much more important . I know how I'll react in a situation, I know my danger signs, I know when I've had enough, I know my triggers.
I know how things affect me, physically and emotionally. What makes me tick.
It's taken along time… almost 45 years, but I'm there. This is what gets me through life, know where you are.

Rule number 2 – Feel

Let yourself feel and know it's okay, be it happiness or sadness, love or anger. At that moment, for that period of time it's what you're meant to feel.
So many people question their feelings or hide them. They try to justify or quantify what it is they are feeling and why.
DON'T just allow yourself to feel!
It's what makes you you innit. Let it happen. Feel it with every inch of you, smile your biggest smile until your face hurts, laugh those belly laughs, cry until your eyes are swollen and you can't see, scream your lungs out cos you're so fucking mad
Because if you don't those feelings fester away and rot your heart
And once you've felt it, let it go. None of those feelings last forever do they, it's the rollercoaster of life. Ride it, with passion.

Rule number 3 – Never lower your standards

I think we all have some kind of standards, be they how we want to be treated, work life, how we are spoken to, family values, how far we will go or how much we will take.
Keep them close and never lower them to fit in, or to please someone else. Let other be accepting of you as you are. You have set them, unknowing maybe, but they are yours, honour them

Rule number 4 – Speak up

Im always very aware I do this, I say things as they are often without thinking. Never to be hurtful, just truthful. It's not always gone right, and it's fucked up a few things but I stand by it.
I think it comes down to the knowing me thing. If I don't say what I think, those thoughts stay in my head and become a worry, or a bad thought. Letting them out, they are then gone aren't they?

It's been a while Blog, lots has been happening good and bad.
I won't leave it so long next time

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Ireland 🇮🇪 

My first trip to Ireland was much awaited, I’ve wanted to go for ages. People saying how beautiful the countryside is, how friendly the people are ..And they are.. from the minute we landed people couldn’t have been nicer. Handing me back my passport at the airport, the guy smiles and says with that gorgeous accent which makes my legs turn to jelly..

“Thank you Debi, enjoy your stay”

Beats the grunt or nod you usually get at airports innit 

I loved this trip, it had everything I ever hoped for. The heady bustle of Dublin, full of life, character and business. People everywhere, noise, traffic, music. Drinking in Temple Bar, Guinness! shopping.. it really was an invasion of senses. We spent our first and last days in Dublin, both were fun, we laughed a lot 

And then further south. The breathtaking scenery, everything so green! Lakes clear as glass and mountains as far as I could see. We walked miles through idyllic countryside. Cute little villages that seemed to be from years gone by. Beaches as stunning as any I’ve seen abroad. We saw castles, cathedrals, the zoo! 

Then the cottage, literally in the middle of nowhere. I loved our time here. The owner left fresh duck eggs for us each day and home and scones. It was quaint and delightful. The woody smell of smoke from the fire, craggy bare stone walls glistening granite. 

And peace 

Although it was fully equipped we sat in silence mostly, reading, sometimes chatting,  often drinking. It’s a long time since we have had times like that. Nothing to do, no jobs to finish, no people to visit, no planning to do. Just time for us 

Ireland you have been wonderfully charming, I hope to visit you again soon 


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It’s okay to feel 

Feels like I haven’t written here in ages innit. 

I’ve been sad today, like proper sad. So sad I’ve been crying and I never cry.. well not in front of people. 

I blogged back in Feb about losing a friend, a RL friend. Not losing them to death or anything, just, you know losing them. Today it hit me like a sledgehammer again. My heart is paining. 

And when you feel like that, you need the person you’re closest to, and its them not being there that’s making you feel so bad. A viscous circle. And it makes you feel lonely and vulnerable,  

I don’t want anyone feeling sorry for me, I’m not looking for sympathy.  I just want to someone to tell me that’s it’s okay to feel this way. That they get it. But the person who would get it, who would understand, isn’t here. 

People say (with the best intentions) 

Snap out of it

Be happy again

Think good things 

Blah fucking blah 

And you know what I don’t want to. It’s painful and it’s okay to admit that somethings are painful. It’s okay to be sad and to cry. It’s not self indulgent, it’s not wallowing in misery. It’s allowing yourself to feel and fuck me if we lose the ability to do that what hope is there. 

Everyone loves the happy you,  isnt that what they say? It’s only those who truly care that love the you that feels too. 

Tomorrow no doubt will feel better, but today I miss them. My whole being misses them and right now, that’s okay. 

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Rollercoaster Ride

It’s funny how much your mood changes in one day.. sometimes it feels like a rollercoaster innit 

This morning was grim.. proper fucking shite. I had to take Ma to the Dr. I hadn’t seen her in a couple of weeks cos she had that radioactive thing and was kinda in isolation. When I got there she looked so much more frailer, thinner, weaker than I remember. She’d fainted at the weekend and banged her head as she’d fallen, big bruises. Her voice was weak and she was so breathless.  My heart broke *insert crying face*

Her new gp is nice and thankfully listens to her. Ma got upset cos she hates feeling so ill, that made me cry and then I got a bit mardy. I told the dr I wanted to see some things happening, nothing seems to be getting done that kinda thing. I think she realised I meant it….she typed a lot *insert mardy face*

Then we had lunch, Ma had to leave hers cos she can’t fucking chew or swallow properly, that made me sad again. So When I left her I was feeling quite tearful and pretty fucking meh *insert miserable sad face*

It’s such a beautiful day so I went for a walk to find some peace in me head. It worked. I can’t believe how lucky I am living here. The most glorious country views in every direction. *insert sunglasses face*

While I was out I had a message from my daughter in law (married to the son that hates me) saying the grandchild want to see me this weekend. *insert smiley happy face *

I decided to push my luck and asked if they could stay with me for the whole day *insert nervous face* she said she would be happy for them to and they would love it but she would have to check with their dad. 

So now I’m waiting to hear if my son will let them.. which is a massive massive thing for me. I’ve never had them on own yet  I’m already planning the day. Even if he says no this time I know it won’t be long til he says they can. Giant steps have been made. 

Anyone who has an easy, unemotional, life’s a beeeze kinda life… is proper lucky innit ✌️

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So in RL imagine you have a group of people you kinda like, you chat with, you have a laugh with. They all kinda know each other, not closely, just a bit. One of them falls out with another, maybe there was a row, maybe hurting, maybe upset. You get told stuff, stuff one of the people has said, done to the other person. 

What do you do? 

You talk, you find out what’s happened, you listen to both people. Don’t you? 

You don’t just fuck them off out of it. You don’t get all the other people in this group to hate on them. Do you? At work? In the pub? 

Why the shitting fuck does that happen on twatter. It drives me fucking insane. This fucking gang bitching. People jumping in on hate campaigns against people they …

A) actually liked but decided to believe one person and now don’t like 

B) don’t actually know anything about but want to feel included so join in

Don’t fucking do it. Don’t screenshot your rows and tweet them to gain support. Don’t go out of your way to tell everyone how much you fucking hate this person. Don’t tell people who they should and shouldn’t follow. 

And don’t judge people based on others opinions. Make your own.. informed decisions about the people you follow. Don’t just go with the crowd, or the popular twats, or the ones who shout the loudest. 

I would be without a very very close friend who is extremely special to me had I not heeded my own advice. I could have just listened to the one sided bitchiing, blocked them and they would be gone. 

Thank fuck I’m wiser than I look innit. 

Shame on you if you are a sheep 

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