Thursday, June 22, 2017

Due to the sun, that we love, but equally complain about, I've just ordered a garden parasol. NOTHING has made me feel more like a grown up. I've spent the day in bed, lolling around, trying to get the air moving, with windows and doors open. I also, like a grown up, ate an ice cream whilst lying on the bed.
The dog has been padding around, trying to get settled. On the bed, off the bed, in and out the garden and emptying his water bowl. The freedom to move around in response to the environment.

My brother and his wife and kids have buggered   off to Devon! Not for a holiday, BUT TO LIVE! I thought I would be the one to move to Devon/Cornwall. I shall try to be pleased for them, as I make use of their place, as my holiday home near the sea. I suppose I still have time on my side....I might make a move there to a sheltered accommodation type thing.....

Today the air is moving!! We have a breeze!! So it was ice creams and the park after school. One of the Little Man's friend from school was there, and they were both still rocking the pirate look, from their pirate treasure trip to Coombe Abbey.

It's now the next day, and I am one of those people that complain about the sun, well the heat it produces. It's so clammy.
I go into hospital on Monday and all I can think about is the air con. I'm going for a small operation. Operation is too big a word for it, but I feel like a pillock calling it a 'procedure'. So that's where I'll be come Tuesday and Wednesday......after the month I spent there, it feels all familiar, funnily enough.

Later that same day........I feel like I've been hit full force in the face with the knowledge that I have MS. The reason for my spack attack? Going to hospital on Tuesday to get a supra pubic catheter fitted. I mean, it really under lines the fact that all is not well with me. I'd had a few clues to this over the last few years......

*Unable to train to be a midwife any longer.

*Can't swim anymore.

*Start walking with a stick.

*No longer able to drive.

*Walk with crutches.

*Can no longer walk.

*Buy a really good wheelchair. This is Bad/Good.

*Buy a scooter that's not fucking burgundy. Again.....Bad/Good.

And then we move, and life becomes easier. A house I can get in and out of for a start.

So why do I feel so lost?

Monday, June 19, 2017

Ugh!

I am SO battered at the moment, and I can hardly keep my eyes open. Which is really helpful as we hurtle towards Father's Day. Still, thanks to the almighty internet I do have one offering for the Good Man. And I have more gifts in mind, but it requires me to be up, showered, dressed, and out. An easy everyday kind of thing, that is now an absolute ball ache. The almighty internet also provided me with a new dress, some joggers (my first ever pair) and a t-shirt for the little man.
Also though, my mind is on the awful tower block fire in London. I keep thinking of those people who have lost their lives, or their homes, or their family members or friends. I can't imagine what they must be going through, and if they'll ever recover. Can you imagine?? And unbelievably, it was the stage for a political battle. Thankfully, JC won. And thankfully, May didn't. I'm sure she has a long long long to do list, in response to this tragedy, but I'm afraid  don't see her as anything other than robotic and unfeeling.
So, tomorrow is Friday and as such, The Good Man is around. What to do?? Craziness abounds......we both want to go to a garden centre. On the list are purple sprouting brocolli and strawberries, plus other stuff I've forgotten, so far we have peas and carrots growing.....I say 'we' but I had nothing to do with it. I might make a request for some tomatoes.

Monday, June 12, 2017

Burn bright like a hoo haa....

After 4 weeks in hospital, it feels so good to be home. Well, apart from the fact that I came home with an in dwelling catheter. My lady garden feels as though it has a bonfire smouldering in it. Nice.  But I'm getting a supra pubic catheter fitted, which I can't wait for. It should see the return of some independence and confidence.
Today, also saw me join the Labour Party. As someone who has regularly used the NHS, I felt I should get behind the party that doesn't want to sell it off. This country wasn't overflowing with cash when the NHS was set up in 1948, not long after the Second World War. It was set up by Aneurin Bevan, The Minister of Health.

It had three core principles;

• It be free at the point of delivery.
 •It meets the need of everyone.
• It's based on clinical need, not the ability to pay.

Right, I'm off to the shower to douse the flames burning bright in my hoo haa, so I will love you and leave you.
Talk soon.


Sunday, May 7, 2017

Badger badgers and rabbit poo.

Right, so I've got to go into hospital next week, for intensive physio with the aim of getting a few steps out of me. If I can pull it off, I can get on Lemtrada. This drug is pretty hardcore, so fingers crossed. I can have bilateral assistance from parallel bars as I attempt to 'walk'.  Olympic gymnastic hopefuls can sleep easy. Rio it won't be. The hardest bit will be getting my feet to part with the floor. And as I have no balance, I'm hoping not to fall flat on my face. I've even got some new pjs. Quite excited about that (the pjs), and that I may achieve 'walking'. If I do manage it = a green light for the quality drugs. And I will be escaping from hospital for one night only, to see Russell Brand on tour, NOT personally, you understand. Anyway, I'm not too hopeful of this walking challenge being achieved, but hey, I've got to give it my best shot.

The little man and the good man have just got back from mini beast hunting in the woods. The highlight of his trip was all about the rabbit poo. A life with boys, is different to a life with girls. Mostly. Although 'rescuing' frogs from drains featured quite regularly, in our girly days. As did feeding badgers peanuts (this was me). Until my neighbour asked me to stop as the badger was filling their drain with crap. He had a lovely story about badgers. He used to work at a place that was in the middle of fields, and one evening he heard a squealing screaming noise, that he went on to investigate........only to find a badger peeling a hedgehog alive. Nice. So envisioning me or my girls getting eaten, I promised to stop. It's that kind of sacrifice that enabled my girls to stay alive. My girlie quota has gone from four down to one, and she's off to university soon. And then what?
The female to male quota will be 1:2.5 the .5 being the neutered dog.
Our dog, the .5, is called Badger. Please don't confuse him with hedgehog peeling badgers they are viscous, my dog is not. He's lovely.


Wednesday, May 3, 2017

Jesca, Guy, Jack and Sarah.

For Jack....Thank you for your friendship.

Well, what to say? I've started to go into the garden at night to fully appreciate where I live. I live in the old village part of a not so slowly growing area not so built up to interrupt my star gazing evenings. There's one star that glows and glistens, quite apart from the others. I wonder what the view from there to us looks like, and I remember Carl Sagan's video called The Pale Blue Dot. It's beautiful.

I have also been introduced Jesca Hoop by Sarah Scott. High five to you beautiful lady. I thank you.
AND she's only gone and done a collaboration with Guy Garvey of Elbow, Jesca that is, not Sarah. I LOVE him!! As my girls will confirm.

My internet wandering, rewards me with Jonathan Pie, a book, and a marvel super hero towel for the Little Man's swimming lessons.
I love the internet, and how easy it makes things, which is much appreciated by my non driving and non walking self. For my sins, I confess to also liking videos of spot picking. I recommend Dr Sandra Lee, for any other weirdos with the same.......what? Fetish?

Today I went to try out a new wheelchair and oh my goodness, it was awesome and I can't wait to get it! It's smaller than mine, and much more comfortable too! And as it's powered, easier too. I've become quite familiar over time in what I need and what's available. For example, the one I tried today is unable to fold, and it's too heavy to lift and bung in the boot, so that has a knock on effect on what kind of car we have.

It's not easy, this blog writing. Always having to think of something to say? The Good Man just reminded me of our looming date night.......We are off to see Russell Brand. Funny AND smart......my kind of man.....But ssshhhhh, don't tell The Good Man ;-) We may even have time to go to Wagamama's. Should be a good night.

Click here to watch The Pale Blue Dot.
https://m.youtube.com/watch?v=4PN5JJDh78I








Saturday, April 1, 2017

My poor wee head is frazzled from thinking about what to write. So far.....nada. My friend is over tomorrow, and I'm hoping she can take me to get a laundry bin. Because I'm that exciting. And some plants for the garden. Because I'm that old. Anyway, my friend has been in Los Angeles since she was last here....so that will give us something to talk about. At great length. And the Good Man is getting the Little Man from school! So I've got ALL DAY!! Which is good as I can't shop under pressure. And there's serious consideration when undertaking a task of this magnitude. Ooh and I wanted to get some plants too. See? I've got to THAT age. Next stop. Betterware catalogue. I used to have fun with the catalogue. I'd cut it up and rearrange with my own description for the neck massager that was clearly a vibrator. Toilet bowl light. Which could be quite handy, if you live with a toddler or a drunkard. My friends boyfriend would pee on her clothes in the wardrobe, (mistaking it for the toilet) They're not together anymore.
It's the next day, and I didn't buy any plants. So maybe I'm not THAT old! Who am I kidding? I'm planning another outing.......
Anyway, it's two days later, and I still haven't got any plants, and the laundry bin task has been hijacked by daughter no.3, as she is determined to get a cheap but decent one. So can you imagine the inevitable excitement, whilst waiting for the laundry bin to arrive? Because so far, I feel robbed of ten whole English pounds, that I handed over happily to no3.
Today the Good Man is taking the Little Man to a party and a new ice cream parlour in town. Meanwhile, I'm in bed playing host to the unreasonable ARSEHOLE, that is MS.

I am fed up of missing out. I don't want this life. I just want to be able to walk. I know the score, I can  want all I want. MS does not respond to the screams in my head.

Monday, March 20, 2017

The 'C' Word.

I haven't written for a few weeks, and my absence has made me realise, that writing also takes care of my mental health. How long have I been doing this blog? Four years, or there abouts. Anyway, I'm hardly quick off the block, at realising this. The last week or two have been hard to work through, with MS throwing it's weight around, and reminding me who's in charge.* On the one hand, I have an amazing family and a lovely home. I never thought that when I was a teenage single mum, that I would EVER own my own my own home. It was truly unthinkable. But, here I am, and I'm loving it. So, I need to keep that in mind.
So, that good stuff on one hand. And on the other hand, stuff that tips the balance, because this stuff is ALL DAY, EVERY DAY. And sometimes I just want a break. Breathing space, y'know?

Tonight I had some breathing space whilst watching 'The C word.' Sheridan Smith was playing a young newly wed who was diagnosed with breast cancer, and she played it brilliantly. I think that parallels can be drawn between illnesses and diseases, whatever their name, certainly emotionally anyway. And dealing with loss is a familiar theme also. Despite the heavy topic covered, there were moments of laughter, tenderness and joy. Real joy.
And that, ladies and gents of Facebook/Internet is my attempt at a review.
I can't remember if I mentioned that my husband's back is rubbish, due to a few battered discs, courtesy of a horse getting in a strop with him years ago. Anyway, the damage caused is appeased by regular sports massages, and maintained by yoga. Every so often it reappears, but this time it was pretty horrific. Thank goodness I have equipment around, that he could make use of, and we could fight over.
Still, he's back on his feet now and the homeostasis of our home has returned. I'm a better patient than I am a carer. And I'm a pretty crap patient.

The Good Man didn't get that name for nothing, and I'd like to thank him. Thank him for all that he is, and all that he does.




* Not me.

Friday, February 3, 2017

I have been cleaning and tidying up, for what seems like ALL DAY. Why/how can a clean and tidied kitchen go from pristine to bomb site in no time at all?? Or from one nameless person making some toast?? Spring clean? Dunno, but I smell of bleach, and it's over powering my perfume......

The Little Man has been awarded a tificate by his teacher, for good, consistent learning. The certificate is proudly displayed on the fridge. He's been discussing the chance of a sleepover with his friend Isaac. The chances are good, just wait a week or two........

I had physio today, and whilst she was pleased with me, it's a maintance rather than an improvement she's after. I still can't put my own bloody socks on though which is frustrating to say least! AND I can't paint my toe nails either, but luckily, one of my girls is a nail technician. Unluckily, when she gets home, the last thing she wants to do, is paint more nails. Luckily, she's pliable if the right bribe is offered......watch this space to see her demands....

Later that week........we had a family outing to Build a Bear in Milton Keynes. We are now the proud owners of a Chewbacca and a Paw Patrol character, and as awful as that sounds, spare a thought for my daughter who is now sharing her home with a rather bright piccachoo. Still, happy faces all round, until The Little Man got hit by an awful cold mid pizza, in Pizza Hut. In need of calpol and bed, we left for home without visiting the Lego shop and I only got a passing glance at Gap. I hate Milton Keynes. As far as wheelchair compatibility goes, it's excellent. But the people?? Not so much. They seem robotic, and they will not deviate from their course. They walk straight at you. The temptation to run them over is getting too much to ignore.....

It's the next day and The Little Man has had a pyjama day, as he's had a day off school. It looks like he'll be off tomorrow too, as he feels a bit boiling. This, despite being fully loaded with calpol. And yes, he did share his germs. But it was a day or two before we realised. First the Good Man, And then me........joy of joys, 10/10 to tissues softer than sandpaper with cooling and unblocking menthol. Don't wipe your arse or hoo haa with them though.

Tuesday, January 17, 2017

Lego mugs and grassy knolls.

Today has seen daughter no.4 growling at me to get out of my pit. It worked. I sorted out my drawers,  inside and on top. And I discovered stuff I had no need for, so binned that little lot. And realised I need a black bra. So I'm taking my lady lumps shopping later on this week.

I received a parcel in the post today. A Christmas present for the three boys that I ordered in the middle of November. Still, better late than never. We now have three Lego build on brick mugs, complete with a tiny pile of Lego, fighting for space in the cupboard. Daughter no.4 growled at me again, as I hadn't bought her one......fair point, because I wish I had one too......

MS is giving me a bit of a kicking at the moment. I went to my grandson's fifth birthday party yesterday, and watched as twenty odd kids, ran around like crazy fools. Just to be clear, the kids weren't odd. My rough estimate at the number of children was. Ok? But my point was, busy one day, knackered the next. Which is an absolute ball ache, when you're trying to have a life. I have an iPhone and I honestly don't know what I'd do without it, especially on days like today. It keeps me connected, not just with friends and family, but with the world too. Like for example all things Trump. Is that the biggest hairsprayed flick/combover ever seen outside the seventies? The man is ridiculous, and vain. And he's in charge of one of the worlds super powers, and I don't know about you lot, but I find that disturbing. Still, it's a few more days before he becomes the president proper, so anything could happen. Meet me on the grassy knoll, anyone??

It's now the next day, and daughter no.4 was at it again this morning......she cushioned the blow of finding myself upright and in the wheelchair, with a slice of toast and a cuppa. I'm showered, dressed and apologising to my bed to my bed and the dog for abandoning them earlier, but I'm back now, so I'm forgiven. But seriously, fatigue is hellish to live with. It takes over, and leaves you no longer fit for the purpose of living. I feel like all my bones have disappeared, leaving behind a skin bag of fat and muscle, puddled on the floor. I get so the only thing I can do is sleep, which would be ok if it charged me up to go again, but the sleep is non-restorative. Adopt a sarcastic tone, and say, 'Fucking marvellous.'

I hope to say that again, but with an impressed tone as I try on bras, and find, 'The One.'


Thursday, January 5, 2017

MINDFULNESS.

So, here we are, in 2017. A new year always brings chatter of resolutions. I prefer to take things up, rather than give them up. This increases your chance of success at sticking to them too. This year I decided that I'd make more of an effort with wearing make up, doing my hair, just generally make more of an effort. And so far, it's not going too well......I've mostly been stuck in bed, and I don't need make up for that. I do however, need pjs. I make an effort with pjs. The other day I sorted my pj pile with this resolution in mind. choosing nice matching ones, and generally clearing out non matching or non fitting ones. It's funny init, how what we wear, and how we present ourselves, really influences the people we meet. Back when I was training to be a midwife, I sometimes had to swing by the local supermarket, in my oh so flattering uniform, and the reaction I got from people was very different to the reaction I got when I was in my decorating gear. BUT the creme de la creme came when I was out with the Good Man, and I was in my wheelchair, and we bumped into someone he knew. He introduced me, and the silly twat of a woman, clocking the wheelchair, said, 'oh he's good isn't he, being with you?' To which I replied, 'No actually, I'm good being with him.'
But I tell you what gets The Gold Star. I had a bloke come round to give me a price for doing a job. We were chatting in the garden, when he asked me what was wrong with me. I told him I had MS, and he said, ' Oh I knew a bloke that had that. He died.' He didn't get the job. Anyone with MS reading this, in case you don't know, YOU DON'T DIE FROM MS. OK.

Yeah, so my resolution is to make more of a effort with my hair and make up. I don't wear much make up anyway. Just a little blusher and mascara, so it's no biggie timewise or effort wise. So I should be able to stick to that. And bloody hell! Just brushing my hair would be a start! As I wrote that I felt a knot at the back of my head. Right, ok then, I'll start right now on brushing/doing my hair then! Two minutes later......silky smooth wisps of hair. (I haven't got the thickest hair.)
Anyway, I am aware that it might seem like I'm rambling. But I'm not. New Years resolutions, and not acting like at twat require the same thing. MINDFULNESS.  What you set for yourself as a New Years Resolution needs to be workable i.e don't say you're going out running everyday if you've just had a baby. Your tits will feel like they may rip off your chest, and your insides WILL fall out of your slightly distressed still bleeding vagina. Instead say you'll jog up the stairs, every time you go up them, or that you'll do pelvic floor exercises whenever you clean your teeth.

And yeah, be mindful of what you say. Words can cause distress or upset. And also reveal you as a bit of a twat. Basically, be nice. Or shut up. Better yet, go home. Silently.