Tuesday, 19 May 2020

5 years ago yesterday this all 'began'


  • The sun is shining
  • 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


Thursday, 7 May 2020

4+11+2 - Quarantine continues and online shopping addiction

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

Wednesday, 29 April 2020

4+11+1

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



Much love

Friday, 3 April 2020

4+10+2 A week in lockdown and my trip 'OUTSIDE'

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

Monday, 30 March 2020

I finally did it - Video published on You(look awful) Tube


  • So it's early morning
  • I'm only on my second cup of coffee
  • I've been up and Working From Home Office since 07:30am
  • I have what can only be described as 'Iso-hair' - I look like I've been dragged through a hedge backwards - twice
  • I have no makeup on so my complexion looks like pizza
  • I haven't turned the light on in the office because:
    • I'm northern and we don't spend money necessarily
    • it helps tone down 'pizza face'
  • I didn't give this any thought other than 'fuckit lets just get on with it now'
So yes I'm middle aged, fat, I have wonky eyes and a today the complexion of pizza and shit hair.

Actually my timing is absolutely dreadful, I mean really what was I thinking - well it's done now.

Enjoy - even if it's only that you pity me or take one look and think 'yay well my life doesn't suck so much'

Virtual love and hugs all round




Friday, 27 March 2020

4+10 Blood Results and living the Iso Life

So here we go 4 years and 10 months blood results. I have to say at this time it's really bloody reassuring to get my lymphocyte counts and find out that the little darlings aren't breeding like crazy to try and fight off 'the beast'

I've effectively quarantined myself voluntarily. I have left the house to go to K9 with Gareth and the dogs, but I take a folding chair and touch nothing, we're there alone and it's perfect for us. I've driven to the shops with Gareth in the car and let him go in for supplies needed on the day (no panic shopping) and the only trip 'around a store' was a quick nip round Costco last Saturday to pick up a nice big monitor to plug my laptop into so I'm not hunched over squinting at the teeny tiny laptop screen. With Social Distancing outside only 100 people allowed in at once and Bob as a 'protective device' it was actually the most pleasant trip round the store we've ever had on a Saturday and me using a doggy 'poop bag' on my hand to enter my pin into the chip and pin machine had people laughing.

The little bedroom at home is now cleaned out properly and it's my home office now so I can actually walk away from work and close the door on it rather than using the lounge and just moving further down the sofa at the end of the day.

As everyone else seems to be doing, all this extra time at home means I also have some time to do some 'house jobs' - you know all those things you look at and think 'must get on with that when I have time' - well now I do. I'm a dab hand with plaster so I've filled in some of the bits that Bella(end) has chewed over the last couple of years so we can paint them over.

Working from home full time is 'different' for want of a better way of describing it. Fortunately I have gareth and the furballs to keep me company, I think everyone at work has been introduced to them all over the last couple of weeks at one time or another.

My hours working from home seem to have gone a bit tits up .... I'm falling asleep in the evening at 8pm and waking up at 5am ..... not impressed with that. I'm starting tot hink it has a lot to do with my office being upstairs and I'm up and down the stairs about 20 tmes a day now which in terms of excercise I think is a bit of a shock to the system. I'm not going to swap offices with Gareth though I'll keep doing this because the alternative is that wierd Joe bloke on the internet doing 'morning PE' and theres just something about him that makes me want to put my foot through the screen (which would just make me fall over trying)

Anyway here we go bloods for the month. Naughty Thyroid is playing nicely again, usual wibble on the monocytes but it's now on;y 0.01 over max so it's getting better, Neutrophils are way back in the normal range too.

So it's all good here, virtual love and hugs to you, stay in, stay safe, be happy

Love
T

Sunday, 22 March 2020

4+10 and a bit - isolating and exploding toilets

The 12 weeks was announced by government on Monday with MS listed as one of the conditions that should go into hibernation. 

Strangely I’m seeing a lot of questions from people who heard the announcements, read the information on the government notifications and are still making comments like ‘I’ve called my MS nurse to check but he/she hasn’t called me back yet’ or even better ‘I’m waiting for a letter to confirm’ - perhaps my tolerance is a little low right now but I do wonder why they think the NHS has time to print and post a bunch of letters when every nurse I know is working flat out trying to help take care of people in the hospitals?

Bloods on Friday went as planned, there was a lady demanding to see her doctor face to face because she needed her medicine adjusting and she didn’t want it done as a telephone consultation - she had herself so wound up she was on the brink of a panic attack and couldn’t breathe 

Anyway I will call on Monday to see if there’s any results but I guess they’re not priority right now and rightly so -  it might be a while or not at all - they’re not making appointments for more so it looks like the last 2 months of my 5 years of testing might not happen - a shame because my 5 year results tracking spreadsheet will never be completely filled. 

Anyway yesterday morning was a catastrophe - at 8am I went to the bathroom sat down on the loo and the water inlet pipe snapped - a fountain of water shooting across the bathroom. Gareth ran down and turned the water off at the mains shut off and we had to have an emergency plumber out. The dogs and I social distanced ourselves in the back garden while he isolated to toilet properly - he’s got to come back on Monday to repair it properly and overall a bill of nearly £300 😢😢

We knew the toilet was moving a little - replacing it was part of the work we were getting done which sadly won’t be happening for a long time now. 

I now have a lovely new big monitor in my newly cleared out home office so I have a proper working space for the next few months (its been my office for years I just haven’t used it so it became the room where technology goes to die - 2 X-Boxes, 5 keyboards, 6 mouses. 2 gamer headphones and numerous unidentifiable bits of computer innards were sent to the dump) - sadly our cleaner won’t see the fruits of my labour for a long time, she’s a health care worker so she’s saying she won’t come near me for my safety. 

I’m hoping the recovered verses died numbers will start to improve over the next couple of weeks. It seems it can take 10-21 days to recover and test negative which is obviously a far longer timeframe than it is for a vulnerable person to die when covid develops into pneumonia. 

A lot of our restaurants have converted completely to takeaway and delivery businesses now so they can continue in some form. We have a wholesale greengrocer a couple of miles away which usually supplies all the local schools, business catering, restaurants and hotels - they’re now doing veg boxes - delivery for those that can’t go out for a small fee and collection for those who can. Gareth collects ours tomorrow. 

All good here (exploding toilets aside)

The sun is shining in March in England rather than it pissing it down - fickle weather choosing the one year when we can’t go out to be nice 

Stay home, stay safe and stay in touch xx