It's been over 9 years since I started my Lemtrada journey it's a marathon not a sprint and in my case it's got a spin off show too now I'm on Ocrevus.
Best decisions I could have made, no regrets, fight for yourself because you're the best person to do it
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I'm starting to lose track of time I think, my once a week 'trip out' to Costco for 16 litres of diet cola and then a quick whizz round Sainsbury's for the shopping seems to mark the passage of time, those Saturday excursions are really the most exciting thing I do now.
It's Monday today so I've worked from home office again - actually I've not done a video from my new location so I might make time to do one tomorrow, hopefully it will be sunny and lovely but right now it grey and windy and absolutely lashing it down outside so I'll wait.
The dogs are still loving this life where the humans are always around to keep them entertained, Murphy cat is getting braver about coming in the house when the dogs are around but his cowardly streak is still very wide.
I've re-done my pink hair, and where it was only lightened last time and was a bit of a 'dipped' look is now properly pink.
It's Friday again, so tonight is poker night with the lads - I managed a respectable 2nd place again last week (vast improvement on the week before where I think I was first or second out) Football is also back here in the UK and tonight Gareth's beloved Tottenham Hotspur are playing Man United (not sure that's going to have a happy ending but on a bright note he's going to properly distracted playing poker so that can only be a good thing)
This weekend will be the usual lot of nothing terribly exciting I suspect but that's okay, there's a rumour going round that the weather is improving again which will be lovely - it's been quite grim for the last week or so.
I hope you're staying safe and sane.
Much love T xx
More video stuff if you're that way inclined - including my change of venue
Apologies for being quiet for a couple of weeks, in these lockdown times, well my life has been even more dull than usual, no nice meals in fancy restaurants, trips the length and breadth of England to visit people, my world has shrunk to our home and my once a week trip to Costco for 16 litres of diet cola.
Things have happened here at home, we had permission from the tenant next door and had a contractor in to bring the hedge in the garden down to an acceptable height and reduce the weight on the other side so it wasn't leaning into their garden.
We've had a big hole filled with water just in front of our driveway from a damaged water pipe for a few weeks now, we had contractors out yesterday to dig down to the pipe, make the repair and fill the hole in.
Michelle is back walking the dogs in the mornings 3 days a week - they absolutely love this, they both get 30 minutes each at the moment individually while they get used to walking with her, the goal in eventually they'll get an hour together once Michelle is confident the little darlings (buggers) will actually behave themselves.
This is how small my world has become, something 'exciting' happened this morning - I 'rescued' Winston from something awful and scary - he'd jumped into the bathtub (don't ask me why this is a fun game) except it had just been used - it was wet and he was trapped in there. Okay I'm sad but here are the pictures just because in his extreme distress at being trapped he also looks dead cute.
It looks like our cleaner can also return in a couple of weeks time - now THIS will make a difference in our lives, not bitching at each other about who should be doing what and when and because V is here we can actually leave the house - TOGETHER - Something we haven't done since March 8th. I have no idea what we will do, where we would go, but to be fair sitting together in the car in the queue at the Costa Drive-Thru would be 'exciting' after this long.
I've had swollen ankles (we think from the heat) I've been in to the doctors for a quick blood test to check thyroid TSH levels and kidney function just incase - my TSH is 1.2 for May - YAY I hear you say - but no - apparently at the ripe old age of 48 and in the menopause 1.2 is 'a bit high' for someone my age just under 1 would be more what I need to be aiming for - who knew it came it an 'age scale' on top of the normal ranges? Not me this is new. I presume that means 'tinkering' with my Levothroxine levels again to try and bring it down a little.
So anyway life goes on, I hope you're making the best you can of this very strange time. Take care xx
There's a gentle breeze blowing in through the open window
Winston and Bella have both had long walks this morning with Michelle (it's great to have her coming round again, the dogs adore her and it gets them to long lead walks they both need)
Gareth is working downstairs in his office
Life is good
There will be fresh home baked cheese scones (that's biscuits to those of you over the pond) for lunch (Yes BreadGod has upgraded to making scones too - I'm hoping his next batch will be plain ones so we can do the whole Afternoon Tea thing with a pot of tea some sandwiches and scones with clotted cream and Raspberry Jam)
Life is good despite C19 and lockdown
Five years ago yesterday I was hooked up to the IV's and my Lemtrada journey started.
I wasn't scared, I was excited, it was empowering to be taking back control of my immune system from the MonSter, to stop being it's victim and kick it's arse.
5 years later I'm still excited, I still want to kick it's arse, Lemtrada did everything it promised to do and more. Most of the improvements I experienced are still holding strong. The weak legs and the numb arm came back but that's old stuff 'grumbling' and Mr N and I have a plan to put the brakes on that with Ocrevus later this year (C19 Permitting)
I was going to try and do a video today for the vLog thingy but we have 2 nice men in the garden with chainsaws and hedge cutters chopping the hedges down to a manageable height (not the usual short back and sides and a flat-top - we're talking a good 3 feet height reduction overall) they're making fantastic progress, but I struggle to talk loud enough for the sound to be good under normal circumstances without the rattle of chainsaws in the background.
We've discovered we missed a couple of series of BlindSpot the TV show so the evenings have been partially used binge watching 3 or 4 episodes an evening for the last few days, we will probably catch up to 'real time' somewhere late next week I think then have to watch like 'muggles' going forwards. The joys of changing the sky box and losing all our series links so we can binge watch the stuff we forgot to re-add as we rediscover it.
Lunch today will be authentic Spanish Croquetta's with some aioli to dip them in - sangria in the sunshine on a work day sadly isn't acceptable at lunch so I'll just imagine that part.
I guess that's as much news as I have really, we're just doing our thing, staying home, staying safe and taking care of ourselves and each other.
I hope you're okay, that life although strange is being kind to you. I'm here if you need to talk to a slightly nuts middle aged bird.
Take care, stay safe, keep fighting, contact free social distancing germ free virtual hugs and all that.
xxx
Ohh ... the one video I did make yesterday ... Winston and Bella doing the 'Leave It' challenge
Has anyone else had a 'slight problem' with a rampaging online shopping addiction?
I saw an internet picture saying that the checkout button was not a replacement for mental wellness and had a good giggle about it, but looking back over the last 2 months, it's me - go on laugh, you're allowed, I'm laughing too even if my bank balance is weeping a little.
Don't get me wrong, the things I've ordered have all been beneficial to my mental well being, Wagyu beef, Iberico secreto, 10kg of Bread Flour for Gareth (who I now refer to as 'Bread God'), Portuguese Armaguinia, French Creme De Pamplemouse Rose, and a much more obvious pink hair dye. Lots of lovely things to BBQ and what at 48 is probably considered a mid life crisis hair change
My 'acquired brother' Steph said my hair looks like Bagpuss now ---- for those unfamiliar with the old British children TV show this is what Bagpuss looks like ....
For obvious reasons, once lockdown and social distancing rules permit I will be hunting my much loved acquired brother down to give him the slap he so clearly deserves. :-) Love you little brother but you know there's a law which says big sisters have to mete out punishments
Bread God has been cooking up a storm (hence the massive bag of flour) and I'm sure that, the good food and not being able to just get out and about is probably taking it's toll on my already considerably sized bottom and thighs but like the true coward I am - the scales are being ruthlessly ignored.
Tomorrow is the delayed May Bank Holiday here in the UK (Delayed from Monday to double up with VE Day - bizarre decision when we could have just had an extra one for VE Day) so today is 'Fake Friday' I'm looking forward to a lovely long weekend in the sunshine with Bread God and the dogs.
Stay Home, Stay Safe, Stay Well and here is this weeks Video Blog if you're that way inclined
Oh my - I've shown myself to be spectacularly crap at publishing updates whilst locked up at home without things to do outside. I don't even have a defence, I did start a post and forgot to publish it (and I've just read it back and it was rubbish anyway so maybe you all got a break)
There's not really any defence though is there, because you only have to read below to realise that at any time I could have got off my lazy arse, wandered up to my office and popped a few words down ....
So we're now half way through week 8 of operation 'Stay Home, Stay Safe'
We have 2 good friends who've had Covid and recovered, we know a few more who've lost family members to it through our extended family of football fans who are members of the forum we own.
I did finally get a telephone appointment call from the Neurology team at Charring Cross, Ocrevus is still in the works but it's going to be a while, I have a face to face appointment scheduled now for June 30th at St Mary's (9am again but at least I can get to St Mary's) for next steps. To be fair I'm less concerned about Ocrevus now given that it keeps T cells suppressed and all the information that seems to be emerging about the severity of the pneumonia that is taking so many who contract it is a direct result of hyperactive T-Cells .... so having less of the wee bastids in the first place could really only be a bonus in that situation.
What else have we been up to well we ordered Indian food for delivery on Friday, we have had 4 BBQ's in a week, the dogs loved the 'weeks holiday' at home where they got to go to K9 for 11 days in a row. We're not plotting to bash each other over the head and bury each other under the patio. The sun shone beautifully during our holiday then buggered off on Monday for back to work making us feel a little less sad about the working thing.
Ohhh and I came 2nd last week in the Friday night Poker Tournament that we have with some of the other members of our football forum which is a distinct improvement on the 2 weeks before it when I came last and last but one - actually won $10.40 this week which put me back up to my starting balance (we're not exactly big spenders with a $3.50 buy in)
Amazon prime have just delivered a small number of surgical face masks to us and we had gloves arrive a couple of weeks back - with the very small number of trips we make outside they should probably last us a number of months at least. Once the peak of this is done and we try to return to normality I think wearing both of these things will be a normal part of daily life for a long time going forward.
Having these things like the home made AntiBac gel isn't part of some master plan to get out and do stuff, it's about being prepared should we need to.
I've been surprised to discover that actually being unable to just go out and have some time alone has been the hard part of this for me. I've always needed that 'on my own time' even when we've had friends or family time, I need to get away and let my brain decompress. Except now I have nowhere to go or more to the point it's not essential travel and I shouldn't be.
I've just been out for my monthly trip to the chemist to pick up my thyroid meds. Quick buzz up the road in Bob (which can't get into the chemist because of the door frame being too high) everything brought out to me, checked NHS exemption card from a distance no mask or gloves required, quick wash up and antibac when I got home just in case and now back to work (glamorous lunchtime for me)
All things considered life is good, I need to socially distance myself from Cadbury's buttons and the fridge I think and possibly from the drinks cabinet as I had a couple of hangovers last week while I was 'on holiday' and didn't like them one bit, they certainly were not offset by an awesome night out and great memories, just by reading and relaxing.
I hope everyone is staying home, staying safe and taking care of themselves and each other.
Here's this weeks Video update to go with the Blog
Yes you read that right I left the house - alone - twice
The first trip was an emergency trip to the opticians after my reading glasses exploded (damn things have been taking lessons from the toilet in the ensuite) a long queue outside our local Asda (the opticians is in the same building but not an Asda one) with appropriate social distancing and a hilarious lady in her 70's who when asked was she struggling with queuing with her walking stick burst out laughing and told me she was clearly more up to it than me since I was in a wheelchair .... some shocked inhales from those around us before they realised I was laughing my ass off and giving a social distance high five to the lady and conceding that she won.
The second trip was around Sainsbury's yesterday in Bob with a trolly and much distancing and hygiene practiced. I was complimented on my 'double wide vehicle' driving skills picked up only necessary quantities of essential items (yes in this house a bottle of Black Cow Vodka is an essential item)
My neurologist appointment hasn't happened, more about that in the latest VLOG (or is it Vlog ... vLog ??? I don't know - the video thingy) - I've tried to be a little less quiet on this one (let me know if it's better please)
It's also become very clear to me watching it back there are some things I need to address or acknowledge
My eyes really are VERY wonky aren't they 48 years and I finally realise just how wonky they are and no amount of makeup (even if I knew HOW to use it will help with this)
In this light I seem to have a faint 'moustache' ...... this I can deal with even in lockdown .... I have a cream for that and one of those vicious rotating hair grabbing machines
Oh but I'm fat ..... there's now an under the desk cycle contraption being delivered by Argos on Tuesday - might as well make working from home work for me
Yes that poor bear with his head hanging open has been like that for over a week and I need to fix his face
Ohhh and the sun has come out so I'm going to pop downstairs and hang the washing out on the line
VLOG thingy is here :
Stay in
Stay healthy
Protect the lives of yourself and others
To those out keeping our countries around the world functioning, in shops selling food, deliveries, medicine, policing, transportation, farming and the many other essential services ... THANK YOU, BLESS YOU and YOU ARE HERO'S
