Wednesday 23 June 2021

Steroids gone from my system and a week of good times

 It seems very odd to be writing about actually doing things again. After 15 months of Covid times where everything has been so 'distanced' being able to spend time with Gareths mum and Dad, see friends and go out for a meal I guess this is a new type of 'normal'

We are still incredibly cautious, lateral flow testing before meeting up with people, still not hugging or shaking hands but just being able to sit and talk is so lovely.

As always my post treatment experience is very much a case of 'nothing to see here' I feel the same as I always do. I'm living life as I always do and doing everything that I'm allowed to do (covid regulations permitting)

Something I've realised I didn't mention in previous posts before I had my 2nd dose - the 'crap gap' you hear people refer to on Facebook groups - those few weeks in the lead up to your next round of treatment where it's like someone took your batteries out - I DIDN'T HAVE THAT - everything was so normal I didn't even think about it until now (it's only reading comments about it this morning that made me think about it) I guess the point I'm taking a long time to get round to is that whilst it does happen sometimes, it also doesn't happen a lot of the time too and those of us who it's all okay for really should make the effort to shout louder about the positive experiences.

Human nature I guess that people are more motivated to post things when they're having a negative experience than they are when it's all just rather 'beige' and normal - How many different ways can you say 'yeah it's all good' without looking like you're trying to convince people a little too hard or just a lunatic who can sometimes be found barking at lamp posts 😂

We now have a new quote to get the ensuite finally sorted (the shower hasn't been usable since January 2019 so we've been using the one over the bath in the main bathroom - not exactly safe for me on my wobbly legs 😆) The next installation slot is October 

    - seems a long way off right ? 

    - Not as far as January the year before last 😂😂

I can live with that.

I now have 2 electric wheelchairs for a while, one belongs to someone I know and I've borrowed / buying  it for Claire to use for her hospital trips and fun trips out with the girls. Silly thing is for her it is too big and heavy for her parents cars so she'll probably use my Bob and I'll use the other one for a while.

My friends wedding last week was lovely, a great time as had by all and the Bride looked stunning and the groom scrubbed up really nicely for the occasion.

Apart from that all rather beige in my world.

Hope you're well

T

xxx


Tuesday 15 June 2021

Finally able to see Friends & Family (Epic) Middle Aged Menopause and heat (not so epic)

 

Good grief but I'm British and getting old

The temperature pops over 20 degrees and my ankles have swollen up, I'm sweating like Jimmy Carr in the tax office (apologies to those not familiar with the English tax avoiding comedian) 

It's been so glorious here all week, the BBQ's have both been used many times and Sunday it was finally time for us to reconnect with the friends we haven't seen in person for 18 months.

Preparations for meeting: 

  • We have all had at least 1 vaccination (me both) 
  • we all did lateral flow Covid tests that morning, all negative. 
  • We elbow bumped, 
  • we all stayed out in the garden in the fresh air
  • we stayed 1 metre apart 
and it was wonderful (the not hugging each other was hard but we were good)

It felt so damn normal and we've all missed it so much 

What else ...... you know what it all doesn't matter.

We have Gareth's mum and Dad coming this weekend - he hasn't seen them in person since the Christmas before last so that's going to really emotional and we will manage with the same preps as last weekend - gotta stay out in the air and keep our hands to ourselves.

I can cope with that - I'm happy with that 

Steroids from round 2 of O are now out of my system I think and life is great.

Hope you're having some awesomeness of your own 

T

xx

Tuesday 1 June 2021

Holiday, another round of O, sunshine and the great outside

 We completed everything on that massive list.

Our week away in Watchet was lovely, the weather held (mostly) and we got to eat cake at Houndville with our friends who own the house we stayed in. Bella learnt that she's not always the fastest dog in the park when their saluki/collie cross left her in the dust at zoomies 

Gareth got the Ox-AZ vaccine before we left and it was okay, bit sniffly on the following day, lots of water and a paracetamol sorted him out.

My car no longer has the scratches that Gareth put down the side of it and thanks to the valet guy no longer smells of dog and is sparkly and clean.

I had round 2 of Ocrevus last week and smashed it. For once the sight of the blood pressure machine didn't make it go through the roof, I managed to pee on command into the teenie tiny pot and I was home before 4:30 (I've never managed to leave there before 5pm so being able to get home at a respectable time was awesome)

I've had my 2nd week of oxygen at pressure and oh boy does it make a huge difference to everything.

I even managed to walk around Costco at the weekend - I got quite emotional when we got back to the car. It's been so long since that was possible and it could just be the steroid effects but thats okay, I did it and if I build up some strength this might become the norm again.

We got out for dinner over the long weekend at a lovely restaurant near home, it felt 'real' and 'normal' to be inside a restaurant with other people, yes the staff were all wearing masks and there were some rules in place but good grief it was a joy to do it. 

I'm also ramping up activities to get the en-suite sorted out so that I don't have to play 'will I fall and kill myself trying to get in and out of the bath' in the other bathroom for a shower - a game I do not enjoy.

Got to get Gareth up in the loft too, there's a leak up there somewhere dripping onto the bathroom ceiling in the other bathroom (possibly need to replace the boiler - which will be a massive ouchie if it needs to be done)

The sun has come out here in Berkshire and it's glorious the BBQ has been used a couple of times this week to great results (Tomohawk steak and piri piri chicken) and more to come later in the week.

Loving life right now. Hope you're well 

xx

Life MS and other things.

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