Tuesday, 21 August 2018
3 years 13 wks
Sometimes you’ve just got to roll with it, and rolling when required is just how it goes these days. Like the acceptance that I was going to need to apply for a blue badge, and that I might not ‘want’ to do it, the acceptance that there was a ‘need’ for it even if it wasn’t all the time.
We went to a Thai Food Fayre on Saturday, not massive a park with some tents and food trucks, we did a couple of laps at best of the event but getting back to the car was so very hard, my legs had turned to water.
That we hadn’t done the weeks shop yet and I now needed to navigate Sainsburys settled in my stomach like a sick dread. Fortunately the shittest scooter in the world wasn’t already out (yes they have 1 and they hide it in a cupboard to discourage people asking for it)
So I’ve left a couple of messages with suppliers to have demonstrations of super lightweight folding power chairs give them a try. I need to understand how the work, how much thy weigh, can I fold and move these beasties unaided, will they fit in the car easily would I need to rearrange the dog crate to fit everything? Important stuff, project manager stuff, risk mitigation and all that.
Randomly, it’s less than a couple of hours since I put my requests through for a demonstration session and one of them has come back to say they have someone in the area today – he can be here within the hour with the model I’m interested in and I hadn’t even got close to finishing typing this update. It’s going to raise some eyebrows at an on-site demo at work with me bombing round the car park LOL …. But hey-ho why the devil not J
I went for my monthly bloods on Friday so results should be available later today or perhaps tomorrow – since it took an extra couple of days for my repeat prescription to be released, there is a chance my thyroid reading might have slipped back to funky world for a short time.
And another random one – power chair demo done – I have the biggest smile on my face, it made life so much easier getting around – going through doors and in lifts would require some practice, but then it’s not for use in the office – it’s about life. It goes nice a fast, I can wheel spin it by turning fast and doing 'do-nuts'. In my head I can hear Comander Worf from Star Trek as he declares 'PREPARE FOR RAMMING SPEED' and yes mentally I have already imagined blasting through the Oracle Shopping centre in Reading at top speed - with a Jousting Pole ......... there is SOOOO much trouble I could get up to :-)
Really expensive, but what price is my freedom worth? The freedom to choose and go where I want when I want, to not have to be the one who has to call it a day because my energy has run out, or just to not go and do something because I don’t want to be a burden on everyone else and take away from their day.
Got another company calling back to arrange a demo of another brand – home one this time – LOL that’ll be interesting as Winston really doesn’t like anything on wheels – push bikes are a particular thing he hates, a wheelchair is just a funky push bike as far as he’s concerned J (he has taken umbrage with a wheelchair in the past) I’m sure he’ll get over it quickly enough, especially when it means he can go on adventures to the pub again.
Apart from the funks motor stuff, life has been quite sane for want of a better word, not my usual mad whirling through a million and one things and reaching the end of the week spent and in need of a good rub down with the sporting life.
AAAAND it’s now Tuesday, I haven’t hit the post button yet, but YAY I now have my blood results, the usual suspects are doing the usual things, but it’s all good JOHHHHH and apparently the cost of power chairs is ‘flexible’ if you challenge them on the cost of the chair, extra batteries etc. J
Haggle boys and girls, challenge the cost and get a deal J
Hope everyone is fighting hard xxx
Monday, 6 August 2018
3yrs 10 weeks
An unexpected trip to the physio this week because I have managed to gimp myself (yes AGAIN I hear you groan) It would seem that I may have managed this by doing Pilates stuff – over extending myself in some exercise’s and my right hip is pretty much shagged if my I try to make any sort of rotating inwards motion – well I fall over in huge amounts of pain.We had awesome tomahawk steak goodness on Saturday followed by a very disappointing chicken dish using an Ina Garten recipe on Sunday - her skillet roast Lemon chicken looks amazing – but taste wise it was nothing special at all – very disappointing that the flavor didn’t live up to the promise of the visual impact of the dish.
Poor Bella (endery) is still in the throws of her first season, poor Winston still seems the think that there might be something to be gained by trying to hump the ‘head end’ rather than the back end – which of course he’s far too short to reach anyway. Poor Bella keeps demonstrating on HIM what she wants him to do which makes him quite nervous. All in all it’s a bit of a Carry On sketch of a season because you just wouldn’t make this stuff up.Work stuff is as mad as ever, we have invented 2 new status’ for projects outside the traditional RED AMBER GREEN
My colleagues and I have now invented 2 stages above RED for future reference (should you need it) the status above RED is Nuclear Sun Black – which for obvious reasons is – well it’s blackAbove Nuclear Sun Black there is a subsequent stage of alert which we will refer to in future as Armageddon – for color reference Armageddon will be shown as Armageddon this color is more commonly known as turd brown J This accurately reflects the true nature of ‘the shit has hit the fan’ status that sometimes things end up in.
In some ways I use the same rating system for MS in both how I feel and what an activity will do to me.
· Green is for nice relaxing stuff that’s going to be lovely and good for me.
o Relaxing, cooking, sitting on a bench at the dog park in the shade enjoying the breeze and fresh air, long lie in’s and unplanned naps on the sofa with dog snuggles
· Amber is for things that are going to take a toll on me and sap my energy which ‘may’ make things difficult later in the day
o Work (LOL) doing the shopping, having to chase a disobedient beagle around the dog park because she’s pretending to be deaf and won’t come back to me, Pilates J
· Red is for things that I know will exact a big price later down the line and require planning and a lot of Green time to recover from.
o Going to the good food show at the NEC walking 5 miles with shopping bags and properly breaking myself,
· Nuclear Sun Black is for some of the deep hitting personal situations we’ve had
o losing people the emotional and physical toll that takes at times of stress, the things you can’t plan for that you just have to roll with.
· Armageddon turd brown I guess I have yet to work out what that would be. I can’t plan for it I don’t know what would trigger this state of shit hit the fan MS reaction. Quite frankly the longer I remain completely and utterly oblivious of what would cause this state of play the better JRandomly the term Armageddon also reminds me of one of those classic pieces of internet hall of fame things. An American Radio show – a number of years ago and a story involving A hamster and the Safe Word – Armageddon J This should be easy to find searching google for the words ‘Radio Show Hamster Armageddon’ – be warned this should NEVER be done on a work machine or in a public place without headphones – or even in a public place because people are going to think you’ve had a mental break or something J
So the use of the word makes me smile despite the circumstances JSo Pilates last night ….. this time carefully with some modified exercise’s thanks to the lovely Dan at Berkshire Physiotherapy Centre – I have instructions not to over extend to only do level 1 & 2 exercises – just because I can bend a long way I must not and that I’m to not overdo things – on a bright note my 8-10 reps of by exercises that I have to do 3 times a day – I get the day off J Yay J Last night was on the hilariously called foam rollers – which are more like concrete drain pipes. Gareth had a major service incident at work and ducked this week so I was on my own for the first time.
I think when you finally roll off the ‘foam’ roller – which in my case is a slightly less graceful dismount than a sack of potatoes falling off a shelf onto the floor J my back and shoulders feel soooooo good, like all the niggly bits have been rollered out of them – or it could just be that they’re incredibly grateful for no longer being on the pipe of torture JBugger It’s Monday – That Means it’s week 11 and I didn’t get round to posting this last week (really sorry – let’s just put it down to middle aged brain)
So another weekend – yummy Vietnamese food on Saturday at Pho in Reading – there’s just something about eating a Vietnamese Pho (Pronounced Fuh) that makes me feel like I’ve done something good for my body, broth, herbs, poached chicken, spring onions, beansprouts, chilli – it actually feels like I’m doing something good for my body.Some dog walks, an awesome Tomahawk on Sunday – with enough left overs for a couple of days lunches for me – right up to the moment when Gareth turned his back on the bloody Whippet and the thieving little cow bag had the big lump of ribeye steak in her mouth and she was off down the garden like Usain Bolt with a big fuck off grin on her face chewing as she ran.
Needless to say my lunch plans have changed for the early part of the week JAppendix to my earlier Status comments we now need to include a ‘Brown Smoke’ event:
This is when notifications are released about things in Armageddon – when they die this is communicated by ‘Brown Smoke’ (think the different colour of smokes during the choosing of a new Pope)Brown Smoke signifies a decision has been made
A bit like Julius Caesar and the ‘Thumbs Down’ for the losing gladiator decisionBrown Smoke – very apt
I’ll stop now, much love from me xx