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

Go on….GUESS!! Where do you think I am………?

So yep…..I'm still in hospital! I've been moved around a bit, and this is the 3rd bed I've been in. I'm in a four bed ward, and initially I had it to myself, but now there are three of us. And as much as I hate to admit this, I have settled into the rhythm of being in hospital. I know the staff. I know the menus. I think I even know the stock that the shops carry. But to be fair, there are only two shops. And, fantastically, the whole place is completely accessible, I can wheel around to my hearts content, all be it crashing through the doorways.

Some good has come out of this enforced hospital stay……

1, I am having physiotherapy three times a week…..

2, My brother came to visit. And as we had dinner, I realised this was the first time in ages that we had been alone together. The last time would have been pre kids and pre partners, so about 25 years.  

3, The Good Man has had some breathing space. This means sleeping in the middle of the bed, and watching whatever he pleases on the TV, without me rolling my eyes.

4, My sister also came to see me when I was on a day visit home. It's always good to see her, especially if she sews up the rip in my dress, caused by not quite stretching over my tit.


And now for the bad……….

5, I am ONLY having physiotherapy three times a week…….


But that's it. I am so blessed that this fantastic hospital is only twenty minutes away from home. I hope to leave later this week……in time for the little man's third birthday.


But this whole thing has got me thinking, and not for the first time, about how lucky we are, when we are born, raised and live within a country that provides free health care. And bloody good health care it is too. And to know that it is under threat really pisses me off. And to also know that the threat comes from within, from home grown Tory wankers pisses me off even more.


So, what to do? I don't know the answer to this I'm afraid. All I know is that I feel pretty helpless, and worried. Being worried is not enough. I, we, need to effect some kind of forward thinking change for the greater good of the whole country…...


If you have any suggestions, please leave me a note…...                          

Yeah.....I went AWOL for a while.....sorry.

Long time, no words. And by long time, I mean 5 months. 5 bloody months! Surely I could have found something to write about in that time, but no. I mean, things happened but I had lost the ability to assemble my words.

As I write this, I'm in hospital. Have been all week. And will be for the next two or three. There are  both good and bad things about this……...

GOOD......
I have my own room and my own bathroom.

The food is not so bad.

The staff are great. Mostly.

There's a Starbucks on the ground floor of the hospital.

I'm starting intensive physiotherapy whilst I'm here.

AND they aren't crazy about children visiting on the ward, so I've been given a pass to go out……as long as I come back in the evening………so this means I SEE MY LITTLE MAN TOMORROW!!

BAD........
I miss my room, and everything in it. Especially the good man. Especially at bed time. I swear his arms are therapeutic. In fact, I miss my whole home. And everything/everyone in it. And the dog.

The drinks. How can tea taste SO BAD?

One nurse kept moving my wheelchair away from my bed, and therefore, out of reach. Because 'I was at risk from falls.' So when I said 'What if I need a wee?'  'Oh just do it in the bed. We can clean that up, I just don't want you to fall.'
And this shows you how crap I was feeling because I didn't chew her bloody face off whilst challenging her thinking.....
'So you think it's ok for me to sit in my own piss? That's bad for my skin, bad for my feelings of self worth, and BAD, SO BAD, because it's totally unnecessary. AND I won't fall if I'm in my wheelchair AND YES, I do transfer just fine....THANKS FOR FUCKING ASKING!!

There's a Starbucks. It's going to take ALL my money.

Physio.....nothing bad about it. Except the mirror at the end of the parallel bars, so I can see how wonky I am. And also how fat/old/tired I look. And how badly my hair needs doing.

I haven't seen my little man since I've been here. And that hurts. Really hurts, like a punch in the throat.


But on balance, the good out weighs the bad.

Win some, lose some.

The last few months have been difficult due to MS dealing me a crappy hand. My days have been filled with sleep, whenever possible, and dealing with the symptoms of MS……

1. First up…..My legs are incredibly stiff and sore, so sore that the muscles feel tightly tightly wound into knotted little balls. It's painful and uncomfortable, and sometimes I just don't know what to do with myself. And, I am sporting some large, but inexplicable bruises. Which looks delightful.

2. Non restorative sleep. Now this is one hell of a ball ache….always knackered, despite sleep…….and always feeling like I'm missing out, which of course, I am.

3. And I've fallen over. twice. Once, I was alone in the bedroom. I fell backwards and hit the bedside unit. This wasn't too bad as a fall, as I did bend my legs, so it was more of a 1950's graceful actress faint. The bedside unit remained intact too. And I was dead chuffed about that, as it's an old cheese cupboard and pretty gorgeous.
The second time was one of those slow motion thingies, BUT. YOU. CAN'T. DO. ANYTHING. TO.  CHANGE. IT. I'd stood up out of my wheelchair to put my coat on. One arm in. No bother…..all good. So I go to put the next arm in. It's partially in (think T-Rex….) and I start to lose my balance. I can't save myself, due to one arm being stuck in a sleeve, and I fall straight back, no bending of the knees. and smack the back of my head on the arm of the sofa. And that REALLY hurt! And, to add insult to bloody injury, I couldn't get up. Luckily, people were here to help me< but I felt like a right twat, and my head REALLY hurt.

4. Cog fog. This is when you can't remember shit…..and it makes for a crazy time…..ask any of my family. Except the good man actually. He doesn't get frustrated with me over this. At the moment…. ;)

5. Independence to shower and get dressed…..sometimes this is no bother, and sometimes I struggle like mad, and just can't manage it. This I find really tricky to deal with, as it seems too big of an assault on my independence. And it makes me feel more than a bit grim.


So yeah, I've had that little lot going on, and a myriad of other issues too, and I've had a blank mind, which has been represented by a blank page. Or rather, a blank screen.
But now, I'm back, and this is my 100th post, and I hope/plan to maintain writing my words.

Xx

Sayings that hit the spot…..

I recently stumbled on to two sayings that I hadn't heard before, but they really made think, and I feel at ease with their punchy to the point kind of way…..….

So the first one was,

'Beauty and Ugliness.'

I have this is SPADES……the ugliness that has intruded into my life, and has altered and changed so VERY much and has bought so many changes. I have lost so much, but it has also allowed me to have the BEAUTY of time with my boy, and my growing, ever changing family. And I'm here.

The second one was,

'A strong back, and a soft front.'

Oh to master this one……well, I think my back is pretty strong, but it could be stronger still, and to have a soft front would, I think make you approachable. And again, I'm not too bad here (you have to ask my family for confirmation of this, or otherwise here….) but I could be better! The right combination here is essential! Can you imagine the potential mess right there, just waiting for you to cock up. Ugh, the beauty of having a family, or people in your life……you never stop learning.

And I guess that's the thing….you can always learn. You can always teach. But you never stand still. You know stuff, but you don't know it all. Never will. Understand that, and life will be peachy.