Grieving and others expectations

I have amazing friends I am so so lucky the hardest part of this all is telling them exactly how low my current baseline is

 Nobody unless they have gone through this will understand, so I'm grieving for myself I'm also grieving through telling my chums and trying to manage their expectations too. Its so so hard, they don't understand and why should they? This is so extreme, well at the moment anyway. 

I am hopeful for progress. I just really need to pull right back and concentrate on the first stage of stabilising this. I can't do zoom just now I really can't, it takes and enormous amount of energy which I just don't have, if I do a zoom it has to be with my physio that's all I can do

Seeing others upset also just wipes me out completely, having to be strong for them too is impossible just now and managing their expectations around my condition is too much. But I'm also scared they forget me but that's a chance I will have to take

A lot of chums do get it, the gorgeous Jen, Glinda quilts is making my Siblings blocks for me and also sent me this 

It's lipstick from liberty 💕💕💕💕 she said gin probably wasn't the best idea! So sent me a red lippy, oh Jen this was the best, grey Donkey thinks so too 🥰🥰

This screenshot from visible shows how much a zoom can take out of me, the bottom one was.with my physio took 3 points but those are necessary! The second two were the set up for and a half hour with my best chum

My daily budget of energy is 11 points a half hour or even a 15-30 minute zoom call takes almost a third of my daily budget .... that's energy I don't have

My top for anyone who has a chronically ill chum??? Listen to them, if they say they can't do something then accept it and believe that they know their condition best. I know.its hard when you want to DO something but sometimes that something mean doing nothing but waiting and being there for them on the other side

Visible app pacing and resting

One of the best things among many with the visible app is seeing the impact resting has. The way I do it at the moment  is by using the pacing donut which very handily tells you where you are at with the days pacing

This is an example of how I managed to pull back from going over budget 

Each time I saw myself going over I stopped and properly rested,  yoga nidra seems to be the best but I'm using my shakti mat a lot which is the only thing which seems to calm down my racing thoughts 

I've actually ordered more plus the head rolls too I want one on each level so I can get onto it when needed

August furtle

 Well hello August further this was not the furtle post i was expecting to write but here we are! 

I came down with covid in June and diagnosed with long covid two weeks ago. My furtling activities have been very very limited and probably will be for quite a while, but as I say here we are!

I managed to start this embroidery Round the Woodland 

I'll work on this when I can, I wasnt able to make any pouches for Jen, Glinda quilts for her drive for Ukraine but I sent her some fabric and zips and look what she made!

How wonderful,  hopefully a little bit more furtling once I settle down with this, crazy new times!

Visible app

OK I'm going to document this journey, it will have a destination but I dont know quite what that will be yet 🤷‍♀️ and to be honest if I get a bit more than I have now I will be happy 

But first up is my game changer the visible app, OMG what a difference I already feel slightly more in control. Also I can see the impact different activities have and how they impact positively or negatively 

Bit of background,  the visible app gives you a daily budget of points, this is based on your heart rate, for me I have 11 daily points, I try to keep my heart rate below 88 (over that I'm using energy I don't have) I aim to avoid between 82 and 88 if possible and not spend too much time there because that's like putting your foot down on the accelerator and you use up way more energy in this zone

Between 70 and 82 is activity and below 70 is rest this is where you recover and regenerate

I am slowly learning it but it's the first thing which makes me feel in control

This is an example of a days activity

You can see where you are active (blue) over exertion (pink) or resting (white)

You can tag activities and see how they impact your energy budget

You can also see improvements,  I've made some adaptations to my showering and this let's me see what positive impact they have made

Incredible,  Tuesday was a bad day and the shower really took it out of me but today I managed a 0.2 decrease from Monday! If your daily budget is only 11 points then those little wins are actually big wins

First steps with Long covid

 Suffering usually relates to wanting things not to be the way they are. How true. Having a dream a goal is crucial going forward, I am constantly reminded that this is going to take months if not years to get to some level of "recovery" but I need some realistic dreams and goals along the way, intentions that's the way my physio looks at it, intentions

"Let go or be dragged" I saw that on the visible site, very powerful, but how much do I have to let go? A lot as it turns out!!! Hair for a start!! There is no energy to wash it or dry it so odd it's goes!

I LOVE it 😊😊

Going to keep it come what may! I'm looking back and seeing all my walks around the lanes, how I missed them, this is what I want to get back to, I don't actually need anything else. My itch to get out and about has been scratched

Meet grey Donkey!!! Scoobs as you would expect is being utterly wonderful he knows I miss the donkeys so look he said I'd you can't go to the donkeys they can come to you ❤️❤️❤️💕

Grey Donkey goes everywhere with me, when I need to stop to get HR down he sits with me until its down, he has some chums, wisteria card and glacial snail card, they are from a wonderful chum who gets it just totally gets it

This is going to be a long long journey with no indication of what's at the end but I'm here for it and will donmy best along the way

 I have never quitter down any of my previous journeys, cancer, rheumatoid arthritis, lipidema, but I think I need to journal this, I learned a lot of lessons from the previous journeys I'm keen to see what i learn from this

And here are the real donkeys Scoobs taking his "interim Donkey reporter" role very seriously 🤣🤣

A Hug a cookie and a juice box

OK I wasnt going to do this but then decided I do love looking back and really remembering how things were.

So let's have posts dedicated to retirement and especially at this point my first dance with covid amd Long covid, the title is taken from one of my favourite threads accounts - and mayhem ensued. He signs off each of his sketches he's with "have a hug a cookie and a juice box" it's just lovely, he pierces the MAGA crew mercilessly but also with some compassion I feel. I'm really enjoying threads at the moment very much like twitter in the early days.

Instagram feels stale and a but echoey just now

I'm going to start a list like I did when I had chemo, I can still see the wee book I wrote it in, it was a William Morris notebook it was my Tyoona juice and treats book, after Rosie and cheeto on IG, things to look forward too, things to tick off 

I'm completely reshaping retirement and it's not all bad, I love my house why would I spend most of my week away from it? I want it to be clean and tidy and well looked after it's been my haven and sanctuary more than once it deserves to be looked after.

Today I cut ties with training and with TT, I will miss training and my frites after but not TT, they were taking the piss they really were. I'm sad in many ways but also quite excited, this is giving me the chance to shape my retirement having learned the lessons of the last two years, thats actually quite powerful. 

These are some dreams some hopes, who knows they may happen they may not? But nice to think about 

Adventures with Scoobs any adventure with him

Steak frites with Jacky plus prosecco natch!

Sunrise dook with selkies

Coffee with Andy

Kaleidoscope with Kim

Bonnybridge weekend plus Kaleidoscope with Irene 

Mowgli with Wendy

FOQ 2024

People are so kind and I'm so lucky to have such great chums. I had to miss this years FOQ because I was still completely floored by covid and I mean completely wiped out. But some wonderful chums old and new made sure I didnt feel too left out. Carolyn so kindly offered to get a picture for me

The green and pink one is mine made from Lucy Engles fabric and a 70s shirt Scoobs worse in the pandemic. Below is the full quilt

Not only did Carolyn take these pictures but she made sure I got a sticker and she bought be a badge too! How sweet and generous 

I was super gutted not to go because chum Sheena had a booth because of her Diploma course. Ruth and I were going to help her set up, lots of planning zooms! But sadly that was not to be for me, but Sheena had  great time and her booth looked brilliant 

But Ruth and Sheena made sure I didn't feel left out and sent on this care package 🥰 lots of things I love but most of all I love my chums and am so grateful for them 

July seasons

So here is July! goodness even more of difference! Berries on the Rowan, Which is lovely, so good to see the change, also I'm glad I chose the garden this year! Stuck indoors after Covid 🤦‍♀️ I wouldn't have been able to carry on with this if I had chosen another location

But also the garden means so much to me just now so it is lovely to see it bloom and grow over the months 

January

February

March

April

May

June

July

Car picnics

Scoobs mooted a date night! But I said I xant get out if the car? No worries says Scoobs we can have date night IN the car 🤣🤣🤣🤣

I need to be gluten free now, these veggie dippers from Macdonalds were fab 😊

we ate them in the Kelpies car park, loved seeing these two again 

We drove back via the donkeys paddock, but nae Donkeys ☹️

But they were in the field !!!!

Oh my heart was so happy to see these boys again 🥰🥰🥰🥰

And they remembered me 🥰🥰🥰🥰

Get stitch done times 2!

 

And here is the finished version! Surprisingly quick to stitch and finish and such a satisfying make
So satisfying  went straight onto another one! These 2 have been printed out on solvy waiting to be done for months if not over a year!

These will go into my embroidery book for 2024 but I'm calling them a fettle finish now as the embroidery book itself is another fettle finish... I may be subject categorising a leeetle bit too much 🤣🤣🤣 Covid has a lot to answer for 🤦‍♀️