Tuesday, May 31, 2016

Wonky bird.

I had a lot of years walking, and some of those years were in high heels, so I would think, hope, that all that experience would count for something. No? Earlier on I was thinking, 'You know what, I think I could manage a few steps. I mean, really, how hard can it be? Babies do it.' I had, at this point forgotten telling a friend about my slump down a wall and how it took me half an hour to get back up. And that was with help. But then my mind kicked in to remind me that I was being a bit of a dick. So that was nice.

We all have that inner voice, that issues warnings, and it's down to us to listen to it. But we also have an inner voice that whispers encouragement. It's down to us to hear it, and to work out if those whisperings are friend or foe. See above⬆️
In the past, I referred to the early days, pre diagnosis days, as my body whispering to me, that all was not well. A numb face. ALWAYS choosing flats over heels. I didn't listen. Well, not until I gave it no choice but to scream at me. Scream it did, in the form of double vision, numbness all the way from feet to waist, and vomiting, with little warning, so sometimes I was sick in a carrier bag, and sometimes on myself. Just anywhere really. These moments were not my finest moments. Loss of balance when walking, resulted in me bouncing off walls, misjudging doorways (bruised shoulders). Dealing with all this was no walk in the park, especially as I didn't know, at that point, what was going on. And I was training to be a midwife. And, my previous marriage was breaking down like wet sand under my feet . So yeah, there was an awful lot for my inner voice to scream about.
Still, no matter, it all came good. I am now firmly wedged in my new life. The girls are all good, their lives are happy lives. I'm good. A wonky bird, but a happy bird.

Some friends of ours, gave me a gift. A beautiful gift of a wonky bird. I do love birds. Birds symbolise freedom to me. If only I could fly. Can you imagine? How awesome would that be?
In the past, my childhood past, to fly would always be the superhero power that I would choose to have. You can keep your invisibility, X ray vision, and Hulk smash shizzle.
Another friend came round today wearing a beautiful long top/smock that she'd made, and she looked so good! There's nothing that she doesn't know, and she's kind.....always kind. And always brings cake round. So, she's always welcome here.....with or without a cake.

Though preferably with.

Saturday, May 28, 2016

Bruce Wayne anyone??

When I awoke, the house was quiet.......odd, as there should be the noise of 3 boys, big, and little. Consulting my phone, I see that they've gone off to a car boot. I was thinking in halves, one half thinking, 'ooohhhh.....treasure', and the other half thinking/dreading 'I hope they don't bring back other people's crap.' I shouldn't have worried. The Good Man came back empty handed, The Little Man was also empty handed, as so much on display confused him, whilst The Bigger Boy came back with a toy figure, with half a leg missing. Which is ok, because ALL disabilities are welcome here. So whilst they were out I boringly made the most of my time, doing washing, and by making the kitchen sing with happiness, at it's tidied and cleaned surfaces.
And now I find myself turning down an invite to watch Batman, as I need sleep AGAIN! Bloody boring, but needs must and all that, got friends round for dinner tonight, and I have had to cancel once already......
Thanks to Bruce Wayne/Batman, the boys....ALL the boys, are entertained, and I am dozily writing to you lot, and thinking about what to wear tonight.

Several hours later....turns out I didn't need to worry about what to wear, as I'm going nowhere. It's just me, myself and I. And two sleeping boys.. MS has decided to give me a right good slapping. Doesn't it EVER get bored? And to think, that's it.....this is my companion FOREVER, well it just fucks me off no end. The world's worst abusive relationship.

I might go crazy later......a cup of tea, some toast and TV. WILD.
Is this my life? If so, I don't want it. I want my old life back. I want the old me back. I don't like this new me. She's a bit shit.

Right! That's enough mooching.......GET UP you miserable cow. There's tea to be drank and toast to be eaten! And god knows what to watch.....but NOTHING featuring Bruce Wayne. 

Friday, May 20, 2016

Signs of life.

It's three o clock in the morning and despite tiredness that makes me feel like my eyeballs are burning, I can't seem to switch off. I feel like a kid at Christmas. I think what's keeping me awake, is the very real, long time coming, DOWNSTAIRS BEDROOM AND BATHROOM!! I mean, AAAARRRRGGHHHHH!!! So bloody happy!! I can just about get myself down the stairs, so come moving day, I get to sit, watch, point, and make tea, provide snacks and keep little people entertained, and out the way, for fear of getting in the way of a man with a wardrobe. I haven't been able to get downstairs for a couple of days, and I'm assured, I wouldn't want to.....the washing machine, the tumble dryer, the cooker and the fridge freezer are all currently in the dining area......with a table, four chairs, a sofa and a sideboard/cupboardy/blackboard thingy.....so it's pretty cozy in there. But I MUST get downstairs this weekend!

Daughter no4 will inherit our room, and she's twitching like mad for us to get out, so she can get in. Shame then that I forgot to order 2 new beds.......I see a desperate run to IKEA in my very near future......I need to remedy the problem. And hope mini diam bars have the power of forgiveness in their thick chocolate coating.....?? Lift anyone? Preferably in a large vehicle?? Sod it, no I'm getting it delivered. It's £35 but we'd probably spend that on diam bars, biscuits and other random crap, that I would convince myself would be really quite handy, and fuel for god knows how many cars, that we'd still probably struggle to get everything in. We would become that family, that you always see in the car park, trying to get everything in a too small car for the task. And then sitting, squashed, for the journey home, with a bed frame balancing on your head. I mean, you never see, a person EVER leave IKEA with one, ONE, of their paper bags full of stuff, do you? I think all that MDF must go to your head....

Now it's gone four, and the bloody chickens up the road are awake. And they really don't see why they should be the only ones up. They sound like they're doing their best to wake everyone in a two mile radius. And now the garden birds* are joining in. It's still dark, so ssshhhh please. You sound lovely and all that, but really?? Shut. Up.

They're still going for it now, although as it's nearly lunchtime, they're having to compete with traffic and people noise. Still managing to make themselves heard though. Small, but mighty.

The kitchen and bedroom floor is getting finished today, so thankfully we will hopefully get things back in their normal place later. Right then, lazy moo here, needs a shower, and to get dressed. First things first though....I need a bit more sleep. UGH....... I could sleep my life away. In fact, I think I am sleeping it away. Fatigue really does take the piss. No matter how much I sleep, I'm still tired. Always tired. I'm hoping that a bit more sleep will help to extinguish day two of my flaming eyeballs. And maybe, now I no longer have to climb a mountain to go upstairs to bed, I will have a little more energy. I used to go a bit nuts at my girls, if they ever had a red bull, you know, that sickly syrup energy drink, but now I'm thinking, maybe I should get some. Maybe not. I don't need to give the girls any reason to turn the tables back on me!
They would LOVE that though. Should I deny them the joy of bollocking me? With regards to energy drinks, YES. And anyway, they have enough to be going on with.........artwork, framed photos, books, drums,  guitar, flutes, more books and oh, that does sound quite a bit. Never mind. I LOVE everything! I think the girls just dread sifting through everything, when we're dead. But you know what? One of my girls was really quite insistent on me having a clear out, then she said she'd come round and have some of the stuff that I was clearing out! Y'what now? You want some of my stuff? But you said it was crap!

Bugger off darling. I prefer to think of my 'crap' as signs of life.

*I have a brilliant book.....Our Garden Birds by Matt Sewell. 

Sunday, May 15, 2016

In the thick of it.......

Due to a family get together yesterday, I now have a sunburnt face. I thought, and hoped, that it would look better after a nights sleep. But no. As I still look shiny and red, less so, but still.
So, back to yesterday. I made it my job to stress myself out, by doing a head count over and over. The fact that I was counting the heads of the  family males aged 3 to 39, was not lost on me. The ladies, from babies to me, always knew where they were, and they remained in a pack. Except from me. I was always on the edge, counting heads. That last sentence makes me sound like a crazed serial killer, and whilst a family outing can drive you to madness, I've always managed to reign in my inner psycho. 

We went to the cafe whilst we were there, and had one of the big tables that overlooked a huge lake. There was a shop with a dangerous combination of beautiful, breakable items, and things that kids go nuts for. You could also buy duck food, so we did. This was another time where I was watching from a distance, as a high concrete sleeper prevented me from joining my family at the waters edge. So it's lucky that I'm happy to be watching. But, to be honest, I didn't really expect to be excluded at a family park. Because if I can't do it, pushchairs can't either. Anyway......back to the park we go. It's quieter now, so my job of head counting is easier. We split up to go to our respective homes, via different jobs to be done. For us.....shoe buying. Joy of bloody joys. We tried on an incredible amount of shoes, including some Star Wars efforts in 3 sizes too big. But this did provide the 6 year old a chance to exercise his ability at verbal persuasion. And me the chance to exercise my ability to deliver a firm, don't mess with me, yes I know they're your favourite, but they don't fit so NO. 

The excitement of yesterday has of course meant that I need to run command centre from my pit, as I'm good for nothing today. Except bedtime stories that is. I really can't wait to move into my bedroom downstairs. No matter how bad I get, I'll still be in the thick of family life, and that has its own healing powers. 

There's only a week to go until that win win situation.

Friday, May 13, 2016

Nearly there!!

I really thought I was done with getting new symptoms, but no. This morning I woke up to my left hand feeling like a fizzy glass of coke or appletiser......whichever floats your boat, but do you get what I mean? Feeling like it's fizzing. As symptoms go this is not the worst......quite pleasant actually.

So last night I met up with a friend that I've known since before MS. She treats me the same as she's always done, which I know is hard for people to do. Because I'm not the same PHYSICALLY, but MENTALLY, I am. And the physical can be all people see, and so they take their lead from that, which is ok. But it's not ok to forget the person that I am. Everybody changes, and we generally roll with the punches that that delivers. Hard, I know, but just don't forget who I am. I am not my wheelchair. Don't let that be all you see. Especially as last night with my friend who led to a bit of internet shopping, and I have a bit, my first ever bit, of Bobbi Brown coming my way. So please notice my slightly rosy cheeks, and kissable lips. Although the lips remain for The Good Man ONLY!!

So, extension update.....the bathroom is done! The bedroom just needs the flooring, which will be done next week. So next weekend is the moving in and I can't wait!! I pity the girls boyfriends as they've been roped in to help. The garden is another story. It's been a building site for a couple of months, and when it's been cleared, I think it'll need a bit of love. That's where my green fingered sister comes in handy. There's a big concrete sectional shed to get rid off. Despite it's usefulness, it's got to go, as it's hideous. Garages and sheds attract crap that really should be binned. Ask the green fingered sister, who has a double garage full with her husband's 'treasure.'

In other news.........I have a private appointment with a neurologist to see if I can be referred to Kings hospital for HSCT. This treatment can stabilise your disease progression, and in some cases, it reverses the disease. Some people have wheeled themselves in, and 3 weeks later have walked out. A bit wobbly, and sometimes with a stick or crutch, but still, WALKING! If there's one thing I miss, it's walking.

The world is set up for walking people. From putting a step or two here, and displaying things high and too close together for me to reach or negotiate, ARRRRGGGHHH! I can't stand up unaided let alone walk. So yeah, I miss walking.

So the extension is very nearly done, and I will be able to exit and enter the house ON MY OWN!!!! Did I already say that? If so, apologies, but I'm so bloody excited!!!

I'll love you and leave you, as I have my own crap to sort out, and I'm not bunging it in the delightful shed. I will, however, make use of the skip in the front garden. An equally delightful feature as the shed, but I'll make use of it before it goes. Thinking about it, the skip's presence indicates that there's more work to be done, so when it leaves, carrying some of my crap, it'll be because we are done! And I can't wait for that moment!

Monday, May 9, 2016

Be your own hero/heroine.

Today has been one of those days. Y'know....the sort that drags......but then, suddenly, the hours pass, and you forget about being stuck in the shower, and having to make your escape by lassoing a foot. Which, by the way, you congratulate yourself for. 
The builders are still working their magic and beautiful magic it is too. Nearly nearly all done. 
It's really hot here, but I'm cocooned from the sun's glare, as I'm stuck in the shower and upstairs in my moderately insulated home. 
My husband returns from working outside all day with a glow that won't let him feel the benefit of being inside. My little man delivers an ice cream to me, and I'm suddenly struck by how grown up he looks. Which inspires me to get back to the task of thinking/inquiring about his 4th birthday. 
I'm finally feeling the benefit of the pain killers I took earlier, to lessen the feeling of my brain trying to escape through a temple. My left temple, you understand, and not a place of worship. Although, that does sound like a 1950's sci fri/horror film. I could be the heroine, in a twin set and pearls, clutching my face in a wide eyed horror. 
So, anyway, back in the real world, where I'm still the heroine of my own story, escaping one shower at a time. 
I will live to roll again!