Advent

Goodness me where has this year gone?!  As per tradition in this household, it is a mad scramble on the first Sunday of Advent to hoik the advent box from under the eaves, and scurry around finding the wreath candles bought earlier in the year!  Before I share yesterday's photos here is a quick catch up from the previous few weeks:

Dave's Luggie scooter was in the repair shop a few weeks ago which meant our yearly visit to Bents Homes and Gardens, it was also a chance for Dave to snap some Christmassy photos for the family calendar and for Pip to turn mum into a reindeer 😂

 The stove is in but we cannot at the moment use it!  The installer is waiting to receive is accreditation through HETAS and until that happens we are relying on hot water bottles, hats, scarves and blankets - with the occasional input from the central heating system.  Hope that paper work comes through soon!

Ottilie is 16 weeks old.  Poor gal is teething at the moment and is just recovering from a cold.

Milton our adopted cat from next door often pops by to say "Hello."

Whilst Pip was at her monthly young carers session in Fleetwood (a 45 minute drive from here) Dave and I spent a lovely two hours in the library and this stack came home with me.  The two gardening books will help enormously with my permaculture design course.  This month we are working on maps and overlays, which is fascinating and challenging in equal measure 🤪

Dave had his last session in the MSTAT research trial at Preston Hospital.  His baseline score from the initial visit hasn't changed in those three years despite a fractured spine and four months of rehab, which is pretty astounding.

His appointment ran over into the lunch time so we were treated to a lovely lunch - thank goodness I carry emergency back up meds for Pip!!

And now for yesterday's activities:

Turmeric, ginger and cinnamon latte. 

The last few weeks of constantly having to 'do' has really caught up with me and not only are my glands swollen but I had another weird heart episode in the middle of the night.  I think I need to mention it to a doctor as it is the third time it has happened.

The Christmas crockery appeared and we had yummy blueberry pancakes fro lunch that were full of all the good things - walnuts, chia seeds, desiccated coconut plus the usual pancake mix 😋

It was a spur of the moment decision but most definitely the right one and out came the fire pit.  Whilst Ben readied the fire I cut back some of the scraggy looking herbs, Lemon Balm and Thyme which I will dry in the oven today.  It was really lovely to sit by the fire and ponder this upcoming Advent season.  

Happy Monday to you dear friends x 

DPP Day Nineteen ~ Fourth Sunday of Advent

 We've had a challenging week, PoTSwise - it took a little while to collect the new medications and although they do not have the same side effects as the last drug they don't appear to be working as well, so Pip has had several pre fainting episodes this week and has spent a great deal of time lying down on the sofa with her legs elevated.  However she has been settling for the night at a much better time which is much appreciated.

The last few days have been a bit of a blur trying to catch up with outstanding jobs, errands and last minute present wrapping.  To my overseas friends I'm hoping your gifts might arrive around the Feast of the Epiphany!  Today was a trying to catch up on the household chores including the washing of our bedroom curtains - they had not been done since we moved in four years ago and needed a jolly good clean!  Unfortunately the label said hand wash only but they are floor to ceiling heavy curtains, so I figured that surely they would be ok on a delicate wash.  How wrong was I!!  The curtain blackout backing disintegrated in the wash and the curtains are no longer fit for purpose 😳. Thank God for that rather large online store, I was able to purchase a replacement set that can be washed at 30C and they are due on Tuesday - could've done without the additional expense though, ah well 😊

Last minute photos from today:

Dave enjoying a wee dram before bed, surrounding by various posting paraphernalia! 

My University Bear that also doubles as a handy phone stand if I want to watch a youtube video or listen to a podcast. 

 I suppose I should clarify that I never succeeded in finishing my degree due to raising a family and then becoming horrendously poorly.  However I did my best to support Dave in his studies when the girls were older and so he bought me this bear decked out in his college colours, as a thank you for all the support over the four year period.  I often tell folk that I'm a graduate from the University of Life, specialising in chronic illness management!  I reckon I've acquired enough knowledge to write my thesis and upgrade to a PhD 😂

DPP Day Sixteen ~ Film Fest

 No post yesterday as it was utterly bonkers!  I had a WA nutritionist consultation for Pip in the morning, an outside visit from a friend in the afternoon and a diabetes appointment with Ben later on that day.  I was completely wired and wiped out by the end of the day.  The nutritionist chat went really well and thanks to all my efforts Pip's gut score and overall gut ecology is really good.  It looks like one of her recent blood tests has flagged up a hormone problem so with a few tweaks to her diet and additional supplementation I'm hopeful we can make good progress.  Pip has a follow up appointment with our GP on the 23rd (her birthday) but Dr Morgan is really lovely, so I'm sure it will work out fine 😊

This afternoon as planned we joined in with other fellow 'spoonies' and enjoyed just over an hour of pure escapism watching the film 'Elf.'  I very rarely get chance to sit down and watch a film at Christmas time because of being on kitchen duty, it was just the thing to sit down and physically 'slonk on the sofa' as my dear friend Ros says ❤️. We were all set for watching at 2pm and the first few minutes looked promising and then the dialogue switched between Hindi, Polish and Spanish, so much for the free viewing 😂. Needless to say it required a download from that big online store - better late than never!

St Lucia almond and spiced biscuit.

'Is Pip going to share I wonder?" 

Yes she did!  Two for her and the remaining two for Dad ❤️

DPP Day 12-14 ~ A Brief Hiatus

 There was a bit of radio silence wasn't there?  When Dave had his Covid booster I thought I had the better deal at the hairdresser, well it turns out he had the better deal!  I had my Covid Booster last Thursday and whereas he had Pfizer I was stuck with the Moderna and it did not go well, hence the radio silence 😂. Don't get me wrong I'm grateful for the opportunity to have the vaccine, I just wish I wasn't wiped out and poorly after each jab, ah well.

We have correctly identified that it is in fact the Ivabradine drug that has been causing a lot of Pip's stomach issues and her consultant has advised switching to a low dose beta blocker to reduce her heart rate.  We are currently awaiting a prescription and she had her first collapse (at home) yesterday lunchtime, not fun.  Today has been a bit better since we adopted the tactic of her lying down with her feet elevated in between her online lessons.  Needless to say we are not venturing far and to be honest wouldn't want to with the rapid spread of this Omicron variant.  Thankfully we had an online home delivery yesterday and next week I've arranged for an Aldi click and collect.

Despite the sickness we've been grateful for the spells of sunshine in between the storms of life and last night I actually managed to be in bed and asleep by 10:30pm which is nothing short of a miracle 😂. Thanks also to the wonders of an online chronic illness community, we are once more joining in with Anna and other fellow ME people to watch Elf on Thursday afternoon, I'll have to make some savoury popcorn to share.  

Pictures from the last few days:

Day Twelve - a belated St Nicholas present a new Christmas mug for me ❤️. 

Dave has the papa gnome mug and the kids both received a gnome breakfast set of bowl and mug, I'll have to take a picture 😊. I knitted whilst keeping Pip company as she watched "Match of The Day."  We've managed to find a cheap way for her to watch her favourite team Liverpool compete in Premier League Matches, she is one happy bunny!

Day Thirteen - St Lucy Day.  I managed to adapt a recipe for St Lucy biscuits that involved switching regular flour for almond flour and using the tiniest bit of xylitol to add just a hint of sweetness, they turned out remarkably well.

Day Fourteen - this is the first time I have sat outside in nearly a fortnight!  When you're in the thick of daily chronic illness management the days often drag but when you look back you realise how times has sped by.  It was lovely just to breath the fresh air, listen to the blackbird chattering and be with my own thoughts.  I'm hoping and praying that we have turned a corner because my goodness I'm really shattered.

Stay Safe, Be Blessed x 

DPP Day Eight ~ A Light In The Darkness

 We have had a tricky 24 hours with a GI flare up for Pip, largely I suspect down to regular milk in a take out latte. 

 We cut out dairy over three weeks ago to deal with another issue and now it looks like it is actually trigger towards the abdominal issues.  Over the past few weeks I have felt like I'm shooting in the dark as I support her through these very challenging days but when I look back I can see that we are slowly make some in roads and Please God it will turn out good.

DPP Day Six and Seven: St Nicholas :: Doula Work

 The Tomten put in their annual appearance for St Nicholas Day:

A warm beanie for Ben with a rechargeable integrated head light, great for work given the current weather!

A Pokemon squishy character for Pip.

It was Mum's last morning with us until she returns in two weeks time for Pip's birthday and Christmas.  I made a yummy polenta bolognese bake for lunch which meant reduced washing up at tea time!

The sauce had the added flavour of smoked paprika and the polenta mix was made with milk, a stock cube and dairy free cheese in the mix and then sprinkled on the top - it was really good.

For the first time in aeons we actually managed to play a family board game after tea - Carcassone is an all round favourite:

Today has been a work day for me and I successfully completed my online safeguarding course (not a great subject to undertake but needs must 😕) and submitted my final written piece on continuous professional development.  All that remains is for me to submit two videos:

One outlining the various stages of labour including a demonstration of a baby descending through the pelvis in the second stage of labour - for this I need to purchase a doll and pelvis! 

The other demonstrating positioning of a baby in regards to breastfeeding using a breastfeeding aid AKA a knitted boob!  My crafting skills have come in handy in this regard 😂 

During my work break I treated myself to some knitting time.  Mum H treated me to some West Yorkshire Spinners Yarn in the Zandra Rhodes design and colour-way Forest Stripes.

DPP Day Five ~ A Birthday

 On this second Sunday of Advent we also celebrated Mum H birthday.  A lovely roast dinner for tea and a birthday ring of candles to provide some birthday cheer:

St Nicholas ready in waiting for tomorrow ☺️

We attended evening mass which starts at six so by the time we arrived home it was after half past seven, we were definitely ready for our meal by then!

The sun beginning to set earlier in the day, taken from the upstairs bathroom window.

DPP Day Four - Saturday Snippets

 I did take a photo yesterday but the day ran away with me, what with a GP appointment for Pip just to check everything was OK and we were on the right track, thankfully we were and she is much improved, thank God :-)

We have had pretty heavy rain and blustery winds today, it felt dark all day for sure.  Still I picked up the camera and enjoyed finding items to photograph:

It's Mum H birthday tomorrow and she is staying with us until Monday.  One of her nieces sent this bouquet as a gift 😊

Shiny Cutlery.

Blue amongst the bubbles.

A beaded curtain of jewels.

Our Lady of Walsingham keeps me company in the kitchen.

DPP Day Two ~ A Yarn Bomb Walk

 This afternoon we took a very short walk around the block and enjoyed the seasonal felt, fabric and fiber creations:

Poor Pip within an hour and a half of this short saunter she was dealing with awful abdominal pain, likely caused by blood pooling in her abdomen due to the PoTS.  When she was walking she was complaining of vision issues and feeling really dizzy.  This afternoon has been spent on the sofa dealing with a fast heart rate, pre-syncope (fainting) symptoms and sporadic gut ache 😭. In addition she has flushing in her face if she eats certain foods which indicates Mast Cell Activation Syndrome, another condition linked to the PoTs and suspected EDS.  Really wish I could make her life better right now ❤️

DPP 2021 Day One ~ Poppy and Pip

 

You might have heard of baby wearing well what about cat wearing?!! 😻

" When you've finished snapping a zillion photos, I'd really like my tea!"

I think we can definitely say that Poppy is long suffering for sure 😂

Cannot believe it, it's the first of December, goodness me where has the year gone?  We celebrated the start of the month with a Covid booster for Dave and a hair cut for me, I think I got the better deal!  I'm still taking part in the morning light challenge so here is my blue sky photo from this morning:

This afternoon we also had a visit from a fellow Sue Ryder 'inmate' and it was lovely to meet up.  Dave and Ian reminisced and caught up on all the news from other fellow SR friends - they have a designated WA group for that cohort and it is a fairly lively chatting place.

Snow Days

 We had a sprinkle of snow yesterday and thanks to below freezing temperatures it lingered until late morning today.

"Snow is falling all around us children playing, having fun". That ear worm of a Christmas tune has been buzzing in my head, yep even the garden centre was playing Christmas music in its outside area!

Drippity, drop this morning but golly it was very cold!

Yesterday's rose with a sprinkling of snow dust.

We had our last trip to Wigan this week to collect Dave's repaired Luggie and I quickly popped in to Bents craft zone for some much needed yarn for Pip's pom pom garland.  I do believe that using the camera and catching some outside time even in the freezing cold will help my mental well being for sure.  Pip is struggling with some pretty awful PoTs/EDS symptoms at the moment, I don't think a day goes by where she is not in pain and as a parent it is quite distressing to see.  She is so good about doing all the right things: taking medication, eating a particular diet, drinking loads, exercising on the recumbent bike and trying to get out for a daily walk and still things go wrong.  It really makes me feel quite sad but she is so good about her difficulties and usually says, 'At least I'm not like some poor kid really ill with cancer.'  This evening I read her a story from her childhood entitled, 'Beware the Bears' followed by our beginning of Advent must have, 'Merry Christmas Strega Nona.'  We also prayed the third decade of the Joyful Mysteried, The Birth of Jesus and thanked Him for coming into this world as our Saviour and Friend - He above all knows what it is like to suffer and grieve.  Sometimes it is just a case of asking Him to help us bear the load of our own cross and to remind ourselves that this too shall pass.