Sunday, November 27, 2016

It's Sunday here. The Little Man is playing at his friends. The Good Man is taking his boy home, which all in all, takes about two hours. And I am sitting on my arse again. All I had to do was stay in my wheelchair. Could I manage that? No. Turns out my transferring is not so hot. I'd made myself a drink, and managed to bring it back to the bedroom, without spillage. Ate a pear. Ate a satsuma. Binned the pith, skin and cores. Then fatigue hit me, like a smack in the face with a tennis racquet. So I decided to go back to bed. Good idea. Turns out I was asking too much, and despite determination, I slumped to the floor. Which gave me the opportunity to respond to the WHY? and HOW? questions about this situation. The WHY? is answered quite simply. BASTARD MS that's why. It means that even with my feet flat on the floor, I can't push myself back. So looking and acting like a melting candle, I end up on the floor. And I'm dead chuffed I somehow managed to avoid scrapping my spine against the bed. Whoo hoo! Go me!
Yep, so I'm siting on a hard floor (great for the wheelchair, but rubbish for my arse.)It's cold and it's dark. And that applies to the room, but also how I feel about MS, and also how I feel about my body. My body is an arsehole, that lets me down. Just because I found transferring easy yesterday, does NOT mean I can do it today. And tomorrow, I'll do it perfectly. Maybe. MAKE YOUR FUCKING MIND UP MS! IM FED UP OF NOT KNOWING WHERE I STAND WITH YOU(so to speak)
So the Good Man will get some hoist practice in, when he returns.
I was going to get dressed, and just generally try and look like I'd polished the turd, to a suitable standard. But no. Oh well, never mind. I haven't hurt myself, I'm just cold (despite a blanket) oooh, I've just realised I can reach my bobble hat AND it matches the blanket! Uh oh....the bobble hat is  just out of reach. That's annoying. Never mind. I'll hook it with a coat hanger. TAA DAA!! Success! I can understand how that bloke cut his arm off in that film, 127 hours. If you haven't seen it, please watch it.
And I need to face the FACT that, despite being a grown up, I cannot be left alone. Well, that's what I'll be told. And I agree. Partly. Everyone needs time on their own. I enjoy my own company. Mostly. But I admit that sometimes I'm a bit of a twat. MS is an unreasonable, life stealing C**T. You try living with it. No? Please? Cos I'm done. I'm not ready to check in to Dignitas just yet, but come on!! Where's the fun in this?? I can't even put my own pants on FFS! I remember the days of searching, trying and buying some nice underwear as The Good Man and I were going away and you know......
 Sorry girls........? But anyway.....the cavalry arrived at the same ish time. Girlie number four was attempting to get me in the hoist. She was calm, careful and methodical. Between us we were getting there. Then the Good Man came home with the Little Man, and an impromptu training session began. And I was back in a warm bed in no time. With a flapjack from The little Man. And with a numb bum. But no bobble hat.

My family is pretty awesome. You are brilliant collectively, and individually, and I thank you for being there, and helping me to cope with all MS chucks at me/us. 

Wednesday, November 23, 2016


Obama=Yes Trump=No

So, 2.30am here, and obviously I'm not asleep. I've just been for a wee AGAIN, only this time, I had to wake The Good Man, and ask him to accompany me, like the grown up I am. The reason for needing his help, was because my legs are failing me. They failed me a long time time ago, with regards to walking but now they're failing me when it comes to the twenty seconds worth of standing, needed for transferring. My arms, and hands, keen to join in, keep dropping things. And it's all a bit shit. However, my friend gave me some jewellery that she needs fixing, so my hands will get a bit of a workout......silver v's pliers. My silversmithing kit needs an airing, and I'm actually looking forward to sorting her necklace. First things first though. My tool box is either a,in the loft (I pity the person who decided to put it there......DO NOT PUT MY THINGS OUT OF MY REACH. Or b, it's in the shed. Newly laid turf and a wheelchair go together like mustard and ice cream. The grass is safe though, as I can't get on it, or to the shed. AGAIN, DO NOT PUT MY THINGS OUT OF MY REACH. The Good Man is just that, a good man, so I know he would not have meant to upset me, but AAARRRRGGGHH, and deep cleansing breath. My tool box will have to live under the bed. I will have to make room somehow......which is probably why it ended up in the shed/loft in the first place.

This evening I watched Barrack Obama giving out awards and all I could think was how do you go from Obama to Trump?? That is not a straight line connecting those dots. So what I reckon is that Trump will realise quite quickly that he's out of his depth, and not do a full term, OR he'll get assassinated. Whatever, he's going to undo an awful lot of good work by Obama. TWAT. 

All The Little Man wants for Christmas is a Batman helicopter boat. I don't know if this exists or not or if it's just a combination of things that he feels Batman would appreciate. Thankfully, I have time to explore all things Batman. I shall report back my findings. His big sister got so frustrated with me one yeaone year. All she wanted was a superpamplayban. And I didn't understand what she was saying, which didn't help her frustration. Or mine. Several weeks later, with the help of a tv advert, I realised she was saying Super Pound Play Van. Obviously. And TAA DAA! I got the last one in Toys R Us, and I felt victorious and triumphant, and basically so fucking happy!! Happy Christmas to me!! I'm so sorry. I didn't mean to use the C word. Not yet anyway.

My husband just returned from the shop, with two advent calendars. I was alerted that he'd returned, when my 19 year old daughter was having a strop. 'WHY HAVENT I GOT ONE? I WANT ONE!'
Yes but you're 19. But thinking about it, I'D like one. So I'll be going shopping for advent calendars then.....

Sunday, November 20, 2016

Shoe box happiness......and spine scraping sadness.

It's that time of year, where primary school children are asked if they could fill a shoe box with toys and personal care items. These boxes are then collected, and distributed to children, in need of such things. Where these children are, I don't know. They could be home or abroad, I don't know, and I don't care. A child in need is a child in need, wherever they may be. I love putting a shoe box gift together. This year, I'll be doing it for a boy the same age as the little man. He'll come with me to the shops, and help choose items to go in the box. The learning to give lesson, and understanding that every one's life/home is not the same as yours, is invaluable. There's a great deal of luck involved, in how your life unfolds.

So, the next day......the little man and I, go to Sainsbury's, with daughter number 3. And it turned out that the little man was extremely tired. He had a bit of a melt down......seeing bits and bobs that he loved, go in the trolley, but they weren't for him? WHAT? We still don't have a shoe box either. Here's hoping I can get one tomorrow.......and that it doesn't start another melt down.
Thinking about it, the invaluable lesson can wait a year or two.......and just start with drip feeds.
Shoe box found, wrapped, no more melt downs. Mission complete. Well nearly. We just need to drop it off down the road, at the starting point of it's journey.

Earlier today, I did one of my 'specials.' Y'know...where I end up on my arse, on the floor. It was another slow motion slump. I was aiming for the wheelchair. Missed. Slumped. On my way to the floor, I scraped a big chunk of my spine over the wooden side of the bed. And you know how I said a couple of blogs ago, that slumping to the floor, and being on my own, were connected? Well, yep, you guessed it, I was on my own. Luckily, this time, my phone was in reach. I called The Good Man, and he was able to come home. He was nearby, and able to come home within 15 minutes or so. Why does this happen when I'm in the house on my own?? It's not like I need help transferring. Well not 80-90% of the time.

The rain is really going for it tonight....plump rain drops beat the skylight above my head like tiny angry fists. And not for the first time, I feel more than grateful for my home. 

Tuesday, November 15, 2016

First off, let me apologise for not writing for bloody ages. I would like to credit my absence, to something amazing, but no. I've just been slack. My youngest daughter was brutal with me today, telling me I do nothing with my life, and whilst her delivery needs work, she may have had a point. So, I can't go back to the things I loved, so I need to move forward, with something new. The only thing I can think of that stirs a desire in me to learn, is sign language. I've wanted to learn this for ages. There used to be a beautiful old building near where I used to live called The Deaf Centre. I used to walk past it regularly. Until one day, it was razed to the ground, and replaced by flats. So that was an opportunity lost. Fast forward a few years, actually, LOADS of years, and I'm at a local park, with the good man, the little man and the dog. A family passes us by, and the little girl in the group, signs 'dog'. I was so bloody pleased that I knew what she was signing, and being a great conversationalist, I signed back, 'Good. Yes. Dog.' I was beaming my best smile, and hoping I didn't come across as odd......but the little girl looked happy with my effort.
So at the moment, I know dog, good, thank you and bullshit. I used to know the names of all the family members, like sister, brother, auntie and so on, but I fear they got swept away, on a tide of grey matter, as MS dissolved parts of my brain. You know, this whole ms thing is odd. For example, I remember clearly the happenings pre MS, but since MS it's clear that MS is busy digging pot holes in my brain, ready and waiting to usher through, any thought that I may wish to re-visit. But tough tits, say goodbye to your memories.
So my conversation skills are slightly stunted, so I dunno how I'll remember what I'll learn, but I won't know until I try. I'm hoping the physical movement aspect, will add another layer, making it harder to forget. Well, here's hoping!
Watch this space....