Back in the day…….

Comparing my back in the day days, to these new days, you could say my new life is now unrecognisable. As the one who rarely drank, I was generally the designated driver. Now I rarely go out, as I need to be picked up, dropped off and then collected later. And this has seen my life get so much smaller. I don't really miss going out, but I do miss being part of something bigger than me. I miss my friends. I miss being a friend. And I miss laughing so much, that my face aches, and I'm gasping for breath.

But on the plus side, I get to spend time with The Good Man, and The Little man. Plus, I know all of the characters in Peppa Pig, including their names. And I am now a Lego builder. At present, I might just be an apprentice, but the opportunity to become a Master Builder, is something that I aspire to. And we all need a dream……

What I dream of now, is a house where I can freely come and go without anyone's help. Every time I pull myself up the stairs, with The Good Man working my legs for me (a bit like a puppet master) I think that's one day closer to never having to DO THIS AGAIN!!! I have a handrail either side of the stairs. Think parallel but diagonal monkey bars…….

Anyway, the wallpaper has been chosen, for the walls that are just sprouting out of the ground, as have the tiles for the wheelchair friendly en-suite. Now, apparently, I'm supposed to have a shower wheelchair. But as I'm yet to find one that doesn't look like a white plastic garden chair on roller skates, and that doesn't require someone to push you in to the shower, and pull you out again, I went on a search for something that didn't make me scream, or my eyes bleed. And TAA DAA, I found just the right one….wooden and attractive. Not quite perfect, as they are more expensive than the plastic offerings, and there aren't as many to choose from. I haven't found THE ONE yet…..but I will…..

At the moment, it's due to be ready by the end of May. And I really can't wait! Watch this space!!

                                      

                                              

                                                                    Work in progress.


                                               
             

Feeling lucky. And happy….

Again, I apologise or my lack of writing. This apology is mainly aimed at myself. I'm sorry I lost the writing mojo. But hey hoe…..I'm back now…..So, what's been happening? Actually, quite a lot. Both personally and globally. I love lists, so here goes……

1. We moved house! It's in a different area. The local council have been helpful and inclusive, which is a MASSIVE improvement on the last council. As I type, an extension is being built, to give me easy access, and a downstairs bedroom and shower room. I'm so sad…..I started looking at wallpaper, before the walls were built. Today, I had to choose the glass. Easy you say? I thought glass was glass, but no. It can be obscured in quite a few ways…….who knew??

2. My niece is getting married this summer. This is the girl who made my sister cry and swear when she was little. But it turns out, that she is now a responsible and beautiful, fully fledged grown up. I am beyond excited about this. I get to see all my family, and take part in The Event Of The Year. My extended family are staying at the country pile, that's been chosen as the Wedding venue. I would have loved to stay here too, but it was not meant to be……here's the conversation, that I had with a bright spark that worked at the hotel….

Me…'Hello. I'm calling to book a room with you. Do you, by any chance, have any rooms that are equipped for a wheelchair user?'

I'd looked at their website and it said there would be disabled rooms built this summer.

Sadly not in time for the wedding. But that's ok?

Lady….'Yes, we can cater for wheelchair users. We have an adapted room. The closest one to the top of the stairs, so it's easy to get to.'

Me…'Do you have a lift?'

Lady…'No.'

So that was the end of that conversation. But not before I was told that if I needed the loo, to call for assistance, and a TRACTOR would come and get me. So staying there was a no. BUT………… and  

TAA DAA, my brother in law suggested Centre Parcs, which was perfect! We are making a whole weekend of it. I've bought an outfit for the wedding, and a new swimming costume, (not for the wedding) It's a shame our weekend is going to be broken up to fit in the wedding ;)

3. I have been taken off Tysabri. This was the 4 weekly infusion I had, in the hope it would keep my MS under control a bit. Well, it didn't. And the risk factors were pretty high too. I was willing to take the chance of irreversible risks, dying was one, but the doctors wimped out. And for various reasons, nothing else was a suitable alternative. So yeah, that's pretty scary. To be honest, free styling my decline is not much fun.

4. Terrorist attacks. Again. I don't know enough about this to comment really, so just WHY? 

My head has been full of decorative ideas for the extension, so much so, that I got a a really lovely pedal bin. Well, you've got to start somewhere…..

And Pharrell Williams, on his own, and with Daft Punk, provide me with my internal anthem at the moment…so click on the links above for the music videos.

Be happy 

Be healthy 

Speak soon. And this time, I MEAN IT!

Choices and their consequences….

You know how people surprise you sometimes? Well, yeah, that happened today. And it was my husband that surprised me……

We had just parked up at a retail park, and as my husband got my wheelchair assembled, I was watching an altercation between two men, one being a security guard from the shop we were outside of, and one other man who was acting a little shifty. The younger, shifty one was reluctantly opening his bag, and trying to make a bid for freedom. The older man (the security guard) kept side-stepping and blocking the younger man. I kept the windows and doors closed so the little man didn't have to listen to the choice language. And then, in the blink of an eye it all changed…..the young man I was watching, decided to make a bolt for it, and my husband got in his way and body blocked him. And before I knew it, there were three men restraining the younger man. Who despite being built like a whippet, was putting up a good fight. 

Luckily, the Good Man had done restraint courses in the past, and so that poor lad was going nowhere. Well, not until the police arrived anyway….

And this got me thinking……we are all responsible for our choices, and we have to live with the consequences, be they good, or be they bad. My husband is a bit more of a hippy, and despite getting a fat lip from the little shyte, he was hoping the lad was going to be ok. I was hoping that the lad would learn from this. However, I suspect he won't. I think he may blame anyone else, but himself. If what he was shouting passers by is anything to go by…...

So, back to the festive season……I really can't believe it's nearly Christmas! Despite having a tree in my lounge, and loads of cards about the place, I'm just not getting a Christmas vibe. Maybe when I've done my wrapping whilst listening to a Christmas CD, and drank more Baileys…..

Also, this year we are putting together some essential bits and bobs to pass on to a homeless person. I can't imagine how living like this this would be. At the moment, it's cold, it's dark more than it's light, and more often than not, pissing it down. So, with a roof over my head, and food in the cupboard, I feel pretty blessed.

I doubt I'll write again before the big day…….so, may I wish you all a

                                           

 MERRY CHRISTMAS AND A HAPPY NEW YEAR!!

Be grateful, feel lucky and share.

LOOK WHAT I JUST FOUND!!!

Yeah, so the title of this blog.....Be grateful, feel lucky and share......kind of sums it all up for me. So much so that I don't really feel the need to write this blog post.....ha, not really......so anyway......it goes like this.....

Be grateful.

So I've sort of come full circle here......my first home for myself and my two girls, was a 3 bed roomed semi.....my home now is a three bedroomed semi. And there has been many homes along the way. But where I am now, and my circumstances are a million miles away from my starting point. And for that I'm so grateful. Cos I mean, whilst I really appreciate the help I had to start me off in my first home, I did not appreciate that a man got murdered in his garden in my street, I did not appreciate my girls getting their toys stolen from the garden. And I did not appreciate a lack of sleep the whole time I was there. This was due to not feeling as safe as I did, when I lived with my parents.
But I am grateful for the opportunities I had here. EVERYWHERE was in walking distance! This kept me fit and independent. And I met my very best friend here. And we are still friends now......so much so, she walked me down the aisle to the good man. And friends that guide you through stormy times, that never change, that are always there, and always honest, are priceless. And if they are also willing to inject me in hard to reach places, no matter how dodgy it looks, as I bare my arse in a corridor of a pub, that's hosting a quiz, that I am always wanted at, despite the fact that I can't answer one single question. And this makes me feel loved. And the fact that those people are still around, makes me feel so bloody grateful. You know who you are, and I love you.

And yeah, I do feel lucky! I may have lost some of my physical ability (walking mostly), and I may have lost my first husband, BUT whilst the first loss is more than a bit annoying sometimes I feel lucky, because it could've been, and still could be, so much worse. As for losing the first husband, turns out it wasn't a loss, and it cleared the way for bigger and better things.....

Sharing.......I get to share time with all my girls, their families, my little man, the good man, good friends, and even our hairy dog. I have enough people around me to make me feel grateful and lucky, because of what they share with me....their time......their ideas......their families.........their good times......and bad.

Despite the many difficult circumstances I've faced, it is friends that have made the difference between me sinking or swimming. But I am a strong swimmer, or was, and I didn't get bogged down for too long, thank feck.

And I confess to greed here, because I love it. ALL OF IT!

Today has been one of those days. I'm sure you know what I mean. You know....where stabbing yourself in the face.....repeatedly......is preferable...

So, I write my blog......all good.....and then it bloody well deletes itself. How, I don't know, but there I am, looking at a blank screen. And I can't do anything about it now, as I have an appointment to see the neurologist. So off I go, and only to be told I've reached the end of the line, treatment wise, because the risk of catching death is just too great. Great. So I'm now free-styling my way through this unreasonable, life stealing disease, AND I can't sign into blogger. I am having such a great day. So, fuck it. I'm having buckets of crabbies, chocolate and whatever else takes my fancy at Sainsburys.
Yes, that's right. I'm WILD!

Right, so, I've just got back from the MRI, nothing to show for that little treat, except my bra is now in a bag, and Sainsburys……jellybeans, and a new jumper……a much better goodie bag here. And yes, my bra was still in a bag. Thank goodness I was wearing a coat. Anyway, the good man is out tonight, and the little man is also out, on a sleepover with one of his big sisters. So that leaves me, alone with the TV. Daughter number 4 is here, but if she leaves her room, lap top, or bed, remains to be seen. I won't hold my breath though….

So earlier today, I was comparing and contrasting, my first home with where I am now. On paper it would appear the 2 houses are similar……both 3 bed semis, and sharing the street with nurseries and schools. But that's it. My girls toys were stolen from the garden. A man up the road was murdered in his front garden. And making eye contact, would sometimes be enough to start people shouting at me. 'Sorry. I didn't mean to smile at you.'

Where I am now, smiles, greetings, and offers of help come easily from other people. The woman that blocked our driveway, remains to be the only fly in the ointment here. And I can live with that.

What I am finding hard to live with, is that right now, there is no treatment that I can have. And frankly, I am more than a bit terrified.

Not waving, but drowning.

Light v's dark.

Today has been a bit of a rubbish day. I have a cold, a throat that feels like I've been downing shards of glass and I have face ache. All that can be summed up as a cold, but layer it on top of being spaztastic, and your body gives up a bit. Floored by a cold? Yep. And I feel more than a bit feeble.
Still, on the plus side the little man spent the day at nursery, and the good man was out and about, sorting out horses teeth.
One of my girls came over and hovered, and rearranged my kitchen.....which made me think of my mum, who hoards bloody Tupperware and old margarine pots 'because you never know'......and to be fair she does put them to good use, but a whole cupboard full mum?
Anyway, so back to me.......I've been lolling about in bed and I was thinking about all the many changes of late......
.....a new home😍
.....in a new area.
.....a new nursery for the little man

.......and I also realised that I haven't read for AGES! So I ordered myself a couple of books. From the comfort of my pit. Which is an AMAZING thing to be able to do. Honestly...the generation below won't get how awesome this is!
And staying on the subject of reading, I read to my little man at bedtime. Well, I attempted it, but he wasn't really intrested. But to be fair, I do sound odd, so it could have been that. This is normally a routine that daddy undertakes, and as my little man kept calling me daddy, I realised I need to read to him more. Or it could have been that his sister was here.....the one that throws him about, and he loves her for it.....as soon as he sees her he says 'boing?' and gets himself into position for the attack that he hopes comes.

And I discovered through a group chat on what's app that 3 of my girls had a scary moment a few years ago....icy roads + car + young driver = something may go tits up. Anyway, needless to say they were all fine, but now I'm thinking how I can split them all up.....I mean, you don't put all your eggs in one basket do you? Well, in this case it was 3/4 of my eggs, but still....

Anyway this gave rise to me thinking about the very recent terrorist attacks in Paris. The loss of all those people, are going to be felt so keenly by the families that will forever have a shadow in it, and over it, left by those gone forever. I had never given much thought to weight of shadows.  Most shadows are cast by light playing with the presence of something. But these shadows are created by the loss of someone and I would imagine all light is absent.

Carrying around a shadow created by loss, I imagine is hard work, with the potential to make everything dark and cold. I hope those shadows get filled with love, happy memories, light  and warmth. 

Surprise! Rejection and plans.

It's only 10.30am here, and so far my day has been a mixture of surprise, rejection and plans. Let me break that down,

Surprise = waking up to find yourself wearing pjs that you'd forgotten about. This covers 2 forgetful episodes,

1, I forgot I had them. And I only bought them 2 weeks ago.
2, I forgot what I had chosen to wear to bed last night.

Rejection = little man going to nursery and he's saying 'Bye mummy.'
I say quite reasonably, 'Bye! Have a good time! Can I have a kiss?'
'No mummy. Later.'
Oh.
As sad as this makes me, I will NEVER force this. Children need to know that they can choose who, how and where they kiss or hug anyone. I'm sure most people have a back catalogue of memories of being told to kiss this or that person......usually a relative, sometimes one you rarely see. And this sets bad form.

'Your body isn't yours to decide what to do with.'

Luckily for me, my family, including the extended family, are always a joy to see. Sadly, this isn't the case for everyone, and most victims of abuse will 'blame' a relative, or someone known to the family.

'Give me a kiss.' I curse myself every time I say this, but remember in time to say, 'Ok' when the answer is 'No'

Fair enough.

Plans. We have moved house. About 6 months ago. And really there is very little we would change. BUT THE BATHROOM DOOR IS A MUST!! I can't remember if I already wrote about this, so bare with me, if I'm on repeat......our bathroom is tiny, and the door opened into the bathroom hitting the toilet and the sink, leaving about ten inches for you to squeeze through. Sideways. This would be fine, but not if you have feet, or lady lumps. And if you collapse, your slumped mass of a body prevents anyone opening the door to help you. So yeah, that happened, and The Good Man took the door off.

So today, a couple of good all rounder blokes came round to chat about the best way to get the bathroom door back on. And that will make the teenage daughter VERY HAPPY. But no door HAS sped up her shower time, so I'm ok with no door. As I'm sure the local water supply is equally as happy.
She will most likely drain the resevoir by the end of the year now.

Good to chat to you all again, and I promise to pull my finger out, and write more often.

Xx