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! ❤️