Friday, December 8, 2017

Happy Friday! ❤️

Today has only gone and been a good day! I only went and bought myself a car!! Life was restricted and just a little bit too small b.c (before car) AND THEN, we had a really busy day.....between physio, and the girl calling in to introduce us to our new bit of kit (a standaid) and then a couple of more people, and well anyway, we only had time for a quick trip round the block, so our adventures will have to wait........but the weekend’s coming up, and we have my stepson for the weekend, and a Christmas tree to buy. And my youngest girl is back from uni for the weekend and we have friends coming over for pub grub and scuse me a minute, while I draw breath.

And the wrapping hasn’t started yet.........

So where to go in the car? Maybe a trip up norf to visit my sister, a trip down south to visit my brother. I really want to go and finally see daughter no1’s house, and then go and visit no.2 and see all the changes she has made to her new home.......may even go to Wales, to visit no.4, just because I can.
We haven’t had a car I can get into for MONTHS! So I plan to fill my boots with going out out visiting people and just stuff!

I see Trump is at it again....y’know.....being a Twat. Not that I’m surprised. After all, he’s just playing to his strengths. He’s playing a dangerous game, and one he can’t win without losing a lot of lives. And half/all of the world.

So maybe I should just get on, and seriously fill my boots before I get blown to pieces.

On that note...

HAPPY CHRISTMAS!
Veselé vánoce
Vrolijk kerstfeest
God jul
Рождеством
Buon Natale
メリークリスマス
FELIZ NAVIDAD.
JOYEUX NOEL. 
Frohe Weihnachten!
メリークリスマス
メリークリスマス   
メリークリスマス
Feliz Natal
BMutlu Noeller
Buono Natale
メリークリスマス

Saturday, November 25, 2017

SLEEP! Yes please.

It’s Friday and my girl is home from uni, to go to my other daughters 2nd hen party. Hen party #1 involed a lot to drink, and no old people. We, as the old, refined people are going for a cream tea, which is being gate crashed by the youthful lot as well. Because who doesn’t love a cream tea? I know what I’m wearing too. Sad as I am.

Next Saturday I’m going out to have my first ever try of Ethiopian food. I’m really looking forward to it. And I’m also looking forward to getting to spend some time with someone I don’t get to see enough of anymore. Between us, we have eight kids, so I snapped her hand off when she suggested it.
I’ll let you know what it tastes like, and if I remember to take any photos, I’ll share them too.

Every week I go to a local hospice, and despite the fact that everybody has a gloomy prognosis, people are positive. If I was in their shoes, I can’t promise I’d be the same. They also have a good number of volunteers too. And most of them have been going for years. As soon as you get there  you’re offered tea, and there’s people offering complimentary therapies, hairdressing and a counsellor  too. There’s also a lady that does art. She’s a ceramicist by trade, so we have plenty to talk about. And if you’re religious, there’s someone to talk too. I’m not religious, but I could talk to him all day. He’s interesting and interested.
So, yeah it’s got it all really.

The boys have just headed out to adventure zone, in a bid to wear them out, as they are overflowing with energy. My energy level is a tad on the low side, despite whatever amount of sleep. I’ve bought a book about getting quality sleep and it’s out for delivery today. I’m hoping it has some miracle answers. I can’t remember the last time I woke up feeling refreshed.

Sleep! I’m coming for you now/today/tonight/this weekend.




Friday, November 17, 2017

Russian Roulette.

Today I have the pleasure of the company of The Good Man. Well, that is as soon as he’s home...best get dressed then. Aw but I’ve got to wait for him to help me. Bugger. Might as well go to sleep then.....
My mind is still busy, and rushing around, juggling little people, but it’s not communicating this to my less-than-physical body. It’s a bloody ball ache.
There’s a treatment you can have, HSCT, and so far, it looks good. Really good actually. Wheelchair in, walk out. It costs a pretty penny, and I’m waiting and watching, to see how people fair over time.
As treatment goes, it’s pretty hard core, but so is living with MS. It’s an unreasonable ARSE HOLE. And is determined to rot you away. It’s had my legs. It’s working on my mind. And hands. And oh would you please just F**k OFF! MS does not follow the same course for everyone. There are about a hundred different symptoms, all with a differing severity.

So it really is like playing Russian Roulette.

I would love to learn to shoot, but not on myself. Sorry.

Yeah, so moving on......let’s talk CHRISTMAS! I only have to get for The Good Man now. And no, not a clue do I have. I took care of the younger bunch of girls and The Good Man took the boys, this lot are too young to be in secret santa. They can choose to join secret santa, or not, when they’re  21.  So Christmas shopping now is really is a breeze. And enjoyable too.

I had a clear out of my bags the other day. There was only one surviving bag, a bottle green Ted Baker one.....I love it, but it doesn’t go with everything, I got a go-with-everything bag. We are in love!❤️ The Good Man didn’t understand my logic here. In fact, I think he thought I was devoid of all logic. But no! I have a keen sense lady logic. And it serves me well.

Daughter no.2 is having her hen party, for the old lady contingent. Cream tea for us all, YUM! The Bride went out with her yoof squad a week or two ago. So now it’s our turn. And I’m really looking forward to it! A little bride present arrived in the post today! It’s really pretty, and I can’t wait to give it to her. She’s come a long way from the little girl that used to spin her pants round on her finger. Well, maybe not.

But that’s between her and the groom.


Sunday, November 5, 2017

#firstworldproblems

Trick or treating was the name of the game tonight. We don’t get many calling here, unlike when we lived in a village. I miss that. Seeing all the kids, most of whom I knew, was generally good too. I say generally........unless you caught them coming round again.......or seeing some of a questionable age.....how old are you now? Seventeen? Bugger off! So, anyway.....back to tonight......I was on door duty tonight and the Good Man was roaming the streets with The Little Man, In search of sweets and chocolate. Both big and little boys were dressed up. And I had a Frankenstein’s monster mask. Which the two little girls, aged about four, and dressed as fairies, did not appreciate. Sorry girls. Have some sweets. Sorry. Next year I’ll bag going out.

Fast forward to a week after trick or treating, to now, and I’m still lounging in bed,
lazy moo. Sort of. I have a love/hate relationship with my bed. I hate that I can’t get in or out without someone helping me. I NEVER would’ve envisioned this life when I was flinging myself around on a trampoline, or when I was riding/falling off of horses. How I am now, was probably natures way of preventing me from killing myself. I got the girls to put their mattresses on the stairs, and get in a sleeping bag, and wheeee down the stairs. I wonder if they remember that?? So yeah, who would’ve seen this life for me?
When I was told I had a rapidly evolving aggressive MS, I didn’t really understand what that meant. It wasn’t explained to me, and as I was still reeling from the diagnosis (in the same meeting ) I didn’t have the wherewithal to question it, what that REALLY meant. I get it now, but then? No. And I had a life to be getting on with.

And I did. For a while anyway. Walking. Driving. Meeting up with friends. Dating (a little bit). Still, anyway, one of my dates became the Mr to my Mrs, and we lived, reasonably happy ever after. Which is the best you can hope for, if you sometimes have views that are opposing forces.....

Being firework night the other night, meant en mass, we wrapped up and headed up the road, to what will be our boys junior school. They put on a pretty spectacular firework display. But the most impressive thing was the way the infants and junior school communicated with each other Re:me. We were met at the school gates, by a lady that lead us round to an area that was marked out for us, where we were off the main pathway, but had a good view (through a tree’s bare branches)but near the hotdog and drinks stand. And then the lady reappeared at the end of the display, to show us the short cut way out.

I hope to be returning to college to do either ceramics again, or sign language. I wish there wasn’t an ‘or’ there, but I can’t afford the moola, or the time,(well I can, but Mr, as my chauffeur cannot). So which will I choose? I miss ceramics, even the messy bits, wearing the clay on my hands, and my face and the scruffy clothing that gets chosen, as if I were decorating. But BSL is a long held dream, The little I know I loved learning and using.
Is that a problem that has earned the name #firstworldproblems?

Friday, October 27, 2017

Remembrance, hooks and having a Local.

Tonight I went out with three friends, to my local pub. And very nice it is too. In the past two months I have been there five times, and Mr Elliott and I have a date night/day to go there too. The Little Man goes back to school next week, so then I guess I’ll be hitting the pub. Make mine a coke, because that’s how I roll......hardcore all the way.  But I tell you what, I am actually quite proud of The George as my local. It is so good to have somewhere nice and welcoming (friendly staff, dogs are welcome and catered for too, water and dog biscuits just inside the door.)

Because I’m English, can I please be permitted to moan about the weather, and the clocks changing business? Right so, our clocks change at the weekend, they go back an hour. It’s already really dark. And even though this happens EVERY year, it still surprises me. Spring forward, fall back. A handy saying to help you remember what’s going on. Please excuse the Americanism. (Fall=Autumn) So, yeah, it’s dark, and dingy, and raining. On and off. On and off. Like my bobble hat and scarf. BUT I did get a proper grown up coat from Mountain Warehouse. It’s black, so it will go with my heart, ninety percent of my wardrobe, and it’s so very light and so very warm. Excellent purchase, well done.

Talking about excellent purchases, a row of hooks arrived today. And I can’t wait to get them up on the wall! It’s really important to keep the floors clear when you’re in a wheelchair, obstacles like, for example, a pile of your bags can become a death trap. A DEATH TRAP I TELL YOU!! A nod to the Good Man, who has taken on the role of health and safety executive.
Right, I must go and see about getting these hooks on the wall.


In remembrance of Chris.
Thanks for the
memories
and experiences
you provided.

Sunday, October 22, 2017

My MOT. And a list....

Well, that serves me right! Writing a blog, looking online at clothes and shit, texting a couple of people, all with one eye closed (to combat double vision) Anyway, I managed to delete what I’d written, so here I go again......

Yep, MS is stirring up shyte pour moi. It’s latest trick (and a new one on me) is that my left leg feels freezing....it’s not freezing to touch, just to me......y’know? My husband has just got back from the cinema, and he’s venting about the disaster that is Trump and what’s his name over Korea way,
Sum Dum Fuk* or something and anyway, the world goes a bit mental whenever I have a baby, or small child. Gulf Wars 1 and 2, Bosnia and Croatia, Sierra Leon, and Afghanistan, and on and on it goes. We certainly don’t need anyone else to add to that list. The World needs stabilising, but I fear Trump will knock the World off it’s axis.

I have friends visiting me from Canada at the moment. I visited them a few years ago, and it was lush. It was also where I could see the hummingbirds......beautiful little birds, who may hold the key to sorting MS. If their nervous system has a break or a blockage, their nervous system just goes around the break or blockage, and normal service is resumed. Brilliant.

I’ll tell you what’s not brilliant though......the dog’s horrific wind, and one hour spent recently at the doctors.....implant out, coil in, compliments about my cervix, whilst getting a smear, and a flu jab. Still, that’s my yearly MOT done.

The boys have disappeared this morning to sort their suits for daughter number 2’s wedding. It’s the second family wedding, and as we span from Yorkshire down to Devon, we don’t get together too much........and I miss them.

Family:
Synonyms: branch, brand, breed, cast, caste, character, classification, collection, color, degree, denomination, department, description, designation, distinction, division, domain, estate, family, feather, frame, genre, genus, grade, grain, grouping, hierarchy, humor, ilk, kidney, league, make, mold, name, nature, order, origin, property, province, quality, range, rank, rate, school, sect, section, selection, set, source, species, sphere, standing, status, stripe, style, suit, temperament, value, variety

Big thanks to Roget for the fine work. I thank you. Although, why feather? Why kidney? How did they make the list??
Linda? Help?

Saturday, September 30, 2017

See through skirt and a thong....

I have moved away from the town, where I'd lived since I three. I moved around but within the same county. Just moving one county over, gave us much more bang for our money. I really love where we live.

I had thought that one day I'd live by the sea. Or in a different country. But hey ho, wasn't meant to be. I did do a stint in Florida, but at only three months or so, it didn't really count. But y'know, I did normal everyday things there, like food shopping, clothes shopping, visit to the cinema, a stint in
A and E ( this task fell to husband number one) And more unusually Disney World and Busch Gardens. On the water rides here, I got totally soaked, and my outfit went see-through. This, unfortunately, was not lost on passers by. Nor was the fact that I was wearing a thong.
So that was nice.

Anyway, back in rainy cold England, any thongs or otherwise, are buried under jumpers and with a side order of gloves and a scarf. And a bobble hat.
It keeps raining loads, and going out when it's raining, when you're in a wheelchair is rubbish. You can't hold a brolly (both hands busy) and your lap gets soaked. Brilliant.
What is good though, since I've changed to a powered chair, only one thumb is busy so I can hold a brolly! And I'm preserving energy. I'm not sure what for yet.....

Ah yes, the youngest in the family is having a sleepover here tonight. I am her Nanny and the Good Man is her Poppa, and the Little Man is her uncle. You following? Which reminds me...I need to do a family tree. Someone I recently met, looked like I scrambled her brain, so I offered to plot it all down for her. I don't think it's complicated, but I appreciate that other people do. My brother, for example, still can't tell the twins apart. They're not identical either. And we lived with him for a bit. They turned twenty seven this summer.  Twenty seven years and still looking slightly panicked/startled/distressed.

Still, it's amusing watching the panic on his face.

Monday, September 25, 2017

The joy that is MS has totally floored me just lately, but rather than sit on my arse moping, I've indulged in a tiny bit of shopping, and I'm eyeing up some Converse, joined green peace, and signed a VSO Petition, which if you're female, know and care about any females, I would urge you to consider signing too. (Just google VSO, and it will probably pop up)
The little man has just come home from a laser quest party, which he really enjoyed. The Good Man enjoyed it too. Probably because he could destroy the opposing team made up of five and six year olds.
The Little Man has another party this weekend. It's being held at the party boys home, which is the kind of party I did for all my girls. The chocolate game and the flour game were the requested games, and as the girls got older, they still wanted to play those games, even when they were camping in the garden, with teddy bears and a thermos of hot chocolate. There was only one burn casualty due to my daughter thinking she could drink straight from the thermos. She couldn't. But what she could do, was to pretty severely scold her chest. Everybody has that one child. She was mine. I was my mother's. But, y'know, we all survived. And the memories of falling out the loft hatch, or all the way down the stairs in an Ali Baba wash basket are intact. As am I, as are my children. To be honest, one fifth of my lot are cautious. The other four fifths are slightly devil may care in their approach to life.


I need a new wheelchair. I have a powered chair sort of on loan at the moment. The jury is out on it at present....1930's houses can't really cope with accommodating a powered wheelchair. And I can't cope with driving the bloody argumentative thing. And it was so comfy at first, but now I have a numb bum. But I suppose it's a big ask, to request that ANY chair be comfy ALL DAY LONG.
I saw one chair that looked amazeballs. But at ten thousand English Pounds, you'd bloody hope it would be! And, small thing, it matches my leather jacket. 

Friday, September 15, 2017

The little man had his first day back at school, a few weeks ago. My questions, 'Did you have a good day? Was it good to see your friends? What's your new teacher like?' were met with an exasperated 'UGH, I just told Daddy!' Fair enough. He kisses my arm, and he's my friend again, by that I mean I have to accept what I can get and when I can get it.

I was feeling a bit grumpy earlier, and this led me to making arrangements to see friends, a much needed source of amusement/happy chatter. Sometimes you just have to take care of your soul. Y'know?

In other news....I'm pleased to report that I took delivery of my new wheelchair. I am less happy to report that I put a scratch on the new fridge freezer. And put scratches on skirting boards. And I've taken divots out of plaster. I have someone coming out to remove a bar, that's shoulder height, and extends back, about three inches. And it's this that has created the odd divot and the scratch on the fridge freezer. It's not my driving, ok? When the lady that delivered it, said she'll be back in eight weeks to see how I'm getting on, I'll admit that I thought 'Seriously?' And she made me promise not to take it out on the street. I can see why. The thing is so bloody sensitive!! And wide! I can't rest both elbows on the arm rests at the same time. As long as my arse doesn't spill into the back corners of the seat, I'll be ok.

I feel sure that I'll get used to it. And the O.T today showed me a bit of kit called a stand aid and JESUS WEPT, whilst it goes without saying that I'm grateful for these services courtesy of the NHS, I am not grateful to have my home turned into an NHS storeroom.
First it was a walking stick, then one crutch, then two crutches, then a wheelchair, then grab rails (now removed. Mostly.) And now a divot making, skirting board scratching, widearsed electric wheelchair. You know that linear drawing depicting The Evolution of Man? Do that in reverse and what are you depicting? Moi. I merde you not.

And apparently I need to consider getting a profiling bed. I slept on one of these when we went to centre parcs, and it was so comfy, and the source of much amusement for teenaged daughter, although at 19 was an adult. Unbelievably. I think I've mentioned her complaining about adulting before? You know when teenagers take on more and more responsibilities (gradually)? BECAUSE THEY ARE NOW AN ADULT? And more understandably, for my then three year old. Up, down. Up, down, goes the mattress = endless amusement for The Little Man.

So anyway, taking delivery of my new wheelchair and I'm saying, Thank you, Thank you, Thank you, all whilst thinking, Please stop talking. Please. No? Oh. Well, just fuck off then. And take all this shyte with you. No. I didn't mean it. I'm sorry.
Talk about yo yoing emotions. Get a grip woman! This stuff helps to bring personal independence, and as I'm all for that, it just remains for me to say, THANK YOU.

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?

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.