Saturday, August 5, 2017

Swimming, tubing and dating.

I feel completely floored by MS today. I haven't yet managed to even sit up, let alone get up. I can tell   MS to do one. It's not welcome here. But it just laughs in my face, as it carries on being destructive. ARSEHOLE.
My upper body strength has always been good, and self propelling whenever I'm in my wheelchair, has helped to maintain this. But I'm starting to lose the strength and my grip. And frankly, that's terrifying. I had to ask my friend to push me the other day, and I felt like I was going to burst into flames. She's an easy person to ask for help, but still, it does not come easy.
The saying 'use it or lose it,' does not apply here......it's more 'used it and lose it', Blimey, I swam to France and halfway back again. (In a pool I mean, it's A LOT of miles to swim, and there's too many stories of dead animals floating from the people who've swam the channel proper! Mostly sheep. And a dog.) And now I can't swim! I've lost the ability to float. HOW? Really. HOW? Being able to float is something that just happens. So I guess loosing it just happens too.

Remember my hole punched belly? It's almost healed and it does make having a wee SO EASY! Good decision well made!
Well, until I think about beach holidays. I've still got a length of tubing to incorporate into sunny days clothing. It's about eight or nine inches long and about five millimetres in diameter, so not so bulky that it prevents me doubling it over, and putting it in the top of my knickers.
I am thankful that I'm not trying to mesh together the supra pubic catheter and a new relationship! Can you imagine a newly met beau furtling around in your lady garden, and they come across something that normally shouldn't be there......garden hose? Yeah, so see? I guess you'd talk about it early doors, preferably before you're getting it on.

So there you have it, dating advice from me to you. If you're attempting to date whilst you have a chronic condition, be honest and upfront about it. If they leg it, they're not worth it. But generally,
on the whole, people don't scare so easily. Between husband one and two I dated a handful of people, and introducing MS was fine.

Wednesday, July 26, 2017

Milk bottle accessory du jour, friends and date night.

Taa Daa! Brilliant. I'm having a relapse, therefore, I request drugs. Several phone calls to MS nurses, and so far, zilch. They don't call you to see if you're ok, so it's up to you to let them know of any problems. You could, either,

A, retreat to a corner, and quietly and privately, wait for the problem to pass.

Or B, call for help. Over and over, until you get it. Be the squeaky wheel until you get the oil/drugs.

According to the ms society, relapses can last for days weeks or months. Mmmm vague or what? I put it to you MS that I have several plans, in the near future, and I would rather be left alone to enjoy them. OK? You've had my driving AND my walking. You are NOT having my time with friends, or The Good Man. Or The Little Man. IT'S THE SUMMER HOLIDAYS! Do one.

Some people have a mild form of ms, but my form is aggressive. And unusually for secondary progressive, according to the neurologist, and my MRI results, I still have the delight of relapses. Whatever! Yes! You can use me for medical students to study. Just give me the drugs! Please!
Now yeah?

Yeah, so that's where I am at the moment. With a right eye working independently of the left. Beautiful!!

Talking of beautiful, my Supra Pubic is healing nicely. And it has made a huge difference to me, both mentally and physically. For one thing, and it is a small thing, I'm not scouting for toilets whenever I go out. I just go out. Like the olden days. Well, not quite. My new accessory du jour, is a used milk bottle. It's light and has a lid, so if I can't get to a loo, I have a back up plan. Brilliant! And my bladder is allowed to be a bladder i.e. Fill up, empty, fill up, empty again and again, Despite being told it was ok, to have bags and tubes attached to allow free drainage I just always felt it was unhealthy. I had a vision in my head of my bladder being like an unused balloon, shoved into a drawer and forgotten, until it stuck together, and was no longer useful as a balloon. And it is discrete.....(well that looks all wrong. Oi! Paterson, spell check?)

So that's where I am, at the moment (she says, forever hopeful this MS bollocks will pass....)
amazing accessories, a hole punched pubic area, plans with friends and a date night booked with
The Good Man.....it's been eight years since our first date❤️

Speak soon Xx

Tuesday, July 18, 2017

Meet ups and living it large. Well, a little bit bigger.....

Here we go, another day on my own. As someone who was always out with friends or at the gym or swimming, it's safe to say, this life is unrecognisable. And I don't like it much. I'm alway here. And as such, my beautiful home, has started to feel like a prison. Or maybe that's because I'm watching an awful lot of  'Orange is the New Black.'  Anyway, life has become small. I need to sort that. But not walking or driving, leaves me thinking 'HOW?!'
Where I live is great in so many ways, friendly and helpful people, a park behind my house, school a spit and hit it distance, a small supermarket two minutes away, a bigger one ten minutes away and whilst this is very convenient, supermarkets do not a life make.

So anyhoo, my poor brain cell has been going crazy, thinking about what I can do, and so far, I've come up with nada. So any suggestions will be gratefully received.
I'm in my bedroom at the minute, with the skylight open a bit, and some jolly bloke is whistling Teddy Bears Picnic. In the rain.

My number 4 girl is starting to stress about the cost of moving to a new area to go to University. The grown up world can be a bit shyte at first. I can tell her she'll settle into the rhythm of a life governed by bills, and deadlines.  She's not daft, so I know she will adjust. She has transferable skills. So could easily earn some money but, it's just a bit of a slap in the face. Welcome to the grown up world. You will be fine bunny! You may have to say 'No' to a few things. And that's all being a grown up is. A balancing act. And you will make friends for life!

*I've sorted a few meet ups! Here's to life getting bigger again! ❤️






Friday, July 7, 2017

Bras, pants, socks and ants.

Jesus wept. I thought, l thought that I'd sort out my bra, pants and socks drawer. Well, here I am an hour or two later and it's still not bloody well done. AND I thought my underwear and things fitted in without too much of a fight, and then I saw a pile of bras patiently waiting on the bed and AAAARRRRGGHHH! Why do I do this to myself? Because I am a muppet.


I did have a mini break though to read and reply to text messages and to eat an ice cream. And to write a blog. Still, I can see the top of my drawers again. So I must be winning.....Although daughter number three will tell you differently. The Good Man was on the phone to her, and the phone gets passed to me, so she can tell me she's coming over to sort out 'all my shit' I think she meant 'my nice stuff.' Well she will probably have a meltdown, as I have moved four tubes and two pots from inside the drawers to on top my newly tided drawers. Well, y'know, its good quality stuff and they will never get used unless they're in my eyeline. So yeah, she may have something to say about that. And as all the girls agree on this, I suppose they may have a point. Maybe. But please don't tell them I said that.


Moving on....we have a rather large colony of ants and flying ants in the garden. Oh sweet joy. I was feeling a bit bad about wishing them dead, but then a flying ant hit me in the mouth, so I got over it. Game on you little shytes. But then, we have already used two different ant killers AND boiling water, and whilst there is still work to be done, their number has reduced. Did you know there's such a thing as National Flying Ant day? I kid you not.

What is Flying Ant Day and why does it occur?

National Flying Ant Day is when male and female ants sprout wings and venture out of their nests on a "nuptial flight", seeking ants from other colonies to mate with.
According to the Society of Biology , nuptial flight is an important phase in the reproduction of the ant species. During the flight, virgin queens mate with males and then land to start a new colony.

So it's all so the ants can get their legs over. 
I just hope they meet me and my kettle AFTER they've had sex. Only they call it nuptial flight. Well, they don't call it that, being non speaking, n all that, but insect people...entomologists do. It sounds beautiful.....nuptial flight. Wish I could claim it for me, but I can't fly sadly. 
If I could morph into ANYTHING, it would be a hummingbird. They can fly, but they can't walk. Still, they're one up on me, and I'd gladly swap.
Talk soon peeps.
Over and out. ❤️

Tuesday, July 4, 2017

Having your abdominal wall pierced, (not pierced like body jewellery pierced, but pierced like stabbed) and a tube threaded into it, is part annoying and part brilliant. Annoying because it's still so sore, and because I am still adjusting me and my wardrobe to such an accessory. Because at the end of the tube, there is still a bag of my piss. And this is the hardest look, courtesy of MS I've had to rock yet. And I've had a few......

Part annoying...

1. Walking stick.

2. Crutches.

3. Wheelchair.

4. Cannula x lots.

5. Eyepatch.

I could cope with ALL of them, but this one literally takes the piss.

Part brilliant.....

I never have to worry about accessing a toilet AGAIN! Unless I need a poo, that is, but I'm not a daily pooer...........catastrophe awaits! Should you poo every day? So I looked it up on an NHS website. I'm that interesting.....anyway, there is a huge range of 'normal' from several times a day to a couple of times a week. So I just need to plot my individual poo map, so I know when it's safe for me to go out to play......like I said, I'm that interesting.

Part annoying.....

Nothing really. I just have to wait for it to heal. Then there'll be no more dressings stuck to my skin and pubes.
Ed Sheeran is so annoying. Especially when you've just listened to him, repeatedly, whilst The Good Man is on hold to somewhere and decides to put his phone on speaker. I think I may be out of the Ed Sheeran average age bracket for a fan. I'm ok with that. Because he. Is. ANNOYING.

Today is daughter number 4's birthday. So I best say adios, and go and clean and tart myself up. The Little Man is excited as he chose her birthday cake and he is looking forward to it, just a bit. Daughter number four complained that we didn't have the required number of candles, as we only bought a single pack of ten. Yep. Older than ten, (twenty) but still likes a good whinge on occasion.

HAPPY BIRTHDAY GORGEOUS GIRL!

Saturday, July 1, 2017

Water fights and BBQs

It's a Saturday, so the Little Man had a school friend round. They're playing in the garden, mostly with the water pistols. So The Good Man joins in and accidentally shoots the neighbour as she is mowing her lawn. To know my husband, is to know these accidental happenings. The Little Man is enjoying just wearing a T-Shirt. To know the Little Man is to know that for him, wearing clothing = to be overdressed.

I'm on countdown for going into hospital again. Just the one night this time. I think I can handle that.....and life after should be easier. And there's a Starbucks there too. That should help with the healing process.

Today's shopping experience comes courtesy of the need for a new charger for my iphone, and the desire/need for a denim jacket. Did you know you can get a denim jacket for £400, if you so choose, or if you're a bit stoopid? Needless to say, I may well be stoopid on occasion, but not THIS occasion. I could be loaded, and I'd struggle spending £400 on something I could get for £40, or less.

Do you know what? I've just realised I haven't read a good GOOD book in so long. For me, there needs to be blood and a body or two. I need to head to amazon....give me a min....


Book ordered, so excuse me if I disappear for while. Normal service will be resumed shortly.......
As it's tomorrow that I'm going to hospital, I thought I'd say something about it to The Little Man......his attitude was like 'Yeah, whatever.....' However, The Good Man said, 'Babe, I was going to tell him nearer the time!' And he's looking at me through the steam from his baked potato, like he married a monster...and I say, 'Nearer than tomorrow?'

I've just got home from 'my sleepover at hospital' as daughter number four phrased it to the Little Man. He accepted this with good grace/hint of boredom. Tomorrow we're having people over for a BBQ, to celebrate daughter number four's birthday. That's the plan anyway, but the rain/thunderstorm may have other ideas. We shall see.......

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?