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.