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

Thursday 19 March 2020

12 weeks lockdown - ooooof thanks Covid-19

Over the last 5 years I think we've established pretty well that I'm a socially backwards person, it’s not that I don’t play well with others, it’s more that I don’t know how to play with them. There are sectors of society I can interact comfortably with and others that I don’t so much as actively avoid the world because that would imply I thought about it and chose not to …. It seriously doesn’t even occur  to me

Today is day 3 with 81 days to go …. ¼ of a year and oh my but I just want to go get a Costa drive thru pick up a cup of the hard stuff and then perhaps wander around Wellington Farm Shop and spend way too much on random stuff. Even the MS Therapy Centre is not open for the next month for my weekend Oxygen Therapy.

My only trip outside this week will be for my monthly bloods are at 8:35am tomorrow – I have to leave the house and go to the surgery for that (a doctors surgery is what you guys call a clinic – not surgery as in chopping into people) All our Doctors’ appointments are telephone only now but the nurse appointments for bloods are still in person – I’m the first appointment of the day and there’s going to be worst case 1 other person there as there are 2 nurses so pretty safe since I intend to touch nothing and not go near anybody at all.

I do have a safe place to ‘go out’ with the dogs, we’ve used a secure dog walking park for the last few years and because it’s private hire there’s nobody else there. There are disposable gloves to use letting yourself in and out so we don’t have to touch the locks, Gareth still isn’t overly happy at the prospect of me going so I haven’t been yet to reduce his concern.

Gareth was a soldier, he did tours in Iraq and Afghan he had rockets fired at him, was threatened with guns, and in his words ‘this scares him more because it’s the people he loves who are at the most risk'. He’s being so great about it but with his worries about his Dad (he is SPMS and VERY prone to picking up bugs) and his mum is a smoker and often recovering from a cold or coming down with one because she’s picked them up from his dad and his grandmother who’s elderly and frail.
The last thing I want to do is give him more anxieties about me.

The supermarket shelves are blitzed of everything and anything its like the post Zombie Apocalyptic scenes from 28 Days Later. My nod to ‘stockpiling’ was that on my last Ocado home delivery I ordered 2 chorizo’s, some milk powder and 2 lots of bread flour (Gareth is great at making bread – which is just as well because there’s none in the shops) we have plenty of stuff to keep us going, there’s no real need for anything other than the odd bottle of wine.

This is going to be life changing for everyone, nothing will be the same going forwards. Homes, families, finances, business is all going to be changed, the potential mental health repercussions of distancing, isolation and bereavement will reach far into the future. I’m hoping that as a species us humans can deal with this in a more dignified and caring manner going forwards than some have so far.

Blimey I’m dark today …. Time to stop that and lighten up, the good thing about working from home is that my ‘background noise’ of choice today is back to back to back episodes of Pitbulls and Parolee’s – lovely fluffies and happy endings – how can that be wrong.

Oh and since we all have so much time on our hands now we’re working from home, not commuting a very lovely lady in Texas called Amy has started a blog – a new Lemmie in a Covid-19 world, new fears, new challenges as well as the same old crap that we MS’ers we all put up with on this journey. Take a moment to have a read, perhaps say hi so she knows you’re not a robot that would be lovely – the more people who ‘Pay it Forward’ with their experiences the better. https://amyhsroad.blogspot.com

So anyway I’ll leave you with one last thought as Korona-geddon continues ….. as usual as per my slightly sick and twisted sense of humour  ….. well please take this in the spirit it’s meant and hopefully it will make you smile xxx
Irelands response to Social Separation
Doing Cannibalism the right way
 
 

Sunday 15 March 2020

4+10 - work, work and more work and Covid-19 and the menopause LOL

Sorry I’ve been quiet, it’s been frantic with work for the last couple of weeks, just one of those times when everything happens all at once and you spend your time bombing around like a scalded cat.

 So the whole world is now fighting Covid-19, the elderly, the physically frail and those with pre-existing medical problems particularly those which have treatments that have an impact upon immune function are in the high risk categories.

The natural response this this situation for those of us with MS who’ve had this treatment is as expected FUUCK

Then i thought about the last 5 years, the gallons of antibac, using scarfs so I don’t actually touch stuff, that as I’ve waxed lyrical in here, my life is quite dull, I’m a crap friend who doesn’t socialise anywhere near as much as I should (the less kind would say I’m an antisocial cow)

The rules are to practice excellent hygiene, wash hands regularly, don’t touch things, don’t get to close to other people, don’t touch people ......

I’ve been training for this Covid-19 shit for 5 years - I’m Jedi Master level at this game it’s the most natural thing in the world for me to live like this.

The rest of the world is now faced with having to live like we’ve had to and it’s gone completely and utterly mad.

Clearing the shelves in supermarkets stocking up on Zombie Apocalyptic quantities of pasta, rice, lentils, beans and toilet roll is bloody insane it’s like half the country have had a collective mental break. What happened to ‘in a world where you can be anything Be Kind’

When you’re facing an elderly person on a budget who lives week to week on a budget and CAN’T stock pile looking heartbroken and confused because they only needed 1 roll of toilet roll for the week and the shelves are empty and they can’t just jump in the car and pop to somewhere else to get what they need because selfish thoughtless bastards have blitzed the place of everything like a plague of locusts  - it makes me angry.

I’m not expecting my meeting about Ocrevus to happen on April 1st, even if it does I would err on the side of caution and hold off on it for the foreseeable future. I’m fine with that, I’m NEDA and if unlikely as it is I relapsed well it’s certainly better than compromising myself.

I’m concerned for the elderly in our area and community for my Aunt and Gareths family. So I’m going to do what I can to help in a safe way, ride this out and reassess later down the line.

Oh and hilariously ..... I saw the doc on Monday ....
 I’m officially in the menopause and on HRT - sadly the tablet type not the happy patch on your arse that makes you feel like a teenager again.
YAY I’m an old fart 😂😂😂

Stay well, stay vigilant, stay healthy and stay calm
You’ve got this
xxxx

Monday 2 March 2020

4+9+2 - Dull, miserable and birthdays

We got the quote back from the tiler and it’s not too scary, we’ve been and looked at some lovely tiles so we have a good idea of how many vital organs we’re going to need to sell off in order to get the en-suite done – new bathrooms seem to be eye wateringly expensive.
The dogs have new dog beds, and last night for the first time in 2 years Gareth and I actually had the bed to ourselves *faints*, Bella seems to be coming back to herself after the loss of Amber and but she and Winston seem to be a little more balanced.

Yet another storm over the weekend Jorge …. Maybe it’s because it’s my birthday tomorrow but I’m nostalgically looking back thinking ‘remember the days when we just had bad weather’ …. It didn’t have names (well not ones you’d use in polite conversation) it was just how this time of year was each and every year and we just got on with it. K9 was closed on Saturday (in case Jorge blew down trees) and then the sun shone for most of the day with the occasional torrential downpour, some sleet, hailstones and yes some snow too ….. all in the space of an hour.
So yes it’s my birthday tomorrow and for some reason, this year it’s making me incredibly low and sad. Perhaps it’s because 5 years ago it was the last time I spoke to my brother on my birthday, or 7 years ago, my mum, 17 years ago my dad. I’m being silly, but this year it just feels even more lonely than ever. The postman won’t bring a bunch of cards, there won’t be phone calls, no Mum’s madcap surprise visits where I’d get a phone call saying ‘guess where I am’ and she’d be in the pub near my home or outside work at lunch time.

It’s just a day like no different to any other and tomorrow I’m going to spend the day home alone with the dogs.
Good grief I’m a miserable bitch this week.

We’re going out for Argentine Steak tomorrow evening YUM
So what else has been going on?

Not much really, chilling, being boring and middle aged
– my hair is finally growing back after I had it all so brutally cut short last year

Boring right?
I think I’ll just stop here and hope that I’m not such a dull whiny little bitch next week.
xxx

Life MS and other things.

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