Friday, 7 January 2022

Epiphany

 We have decided to keep the tree up until Candlemas, I think we did the same last year!  I'm just not ready to let go of its comforting presence and it is so cheery to look at too:















Where The Map Begins ~ A Blessing for Epiphany


This is not any map you know,

Forget Longitude, 

Forget Latitude,

Do not think of distance or of plotting the most direct route,

Astrolabe, sextant, compass

these will not help here.


This is the map that begins with a star,

This is the chart that starts with a fire,

With blazing,

with ancient light

that has outlasted

generations, empires,

cultures and wars.


Look starward once

and then look away,

Close your eyes and see how the map begins to blossom

behind your lids,

how it constellates

its lines stretching out

from where you stand.


You cannot see it all,

cannot divine the way

it will turn and spiral

cannot perceive how the road you walk

will lead you finally inside,

through the labyrinth

of your own heart

and belly

and lungs.


But you step out

and you will know

what the wise who travelled this path before you knew,

the treasure in this map

is buried not at journey's end

but at its beginning.


Jan Richardson, 'Circle of Grace, A Book of Blessings for Each Season.'


I love that the treasure is found at the beginning of the journey and not at the end, that gives me a sense of hope and very much ties in with a Benedictine philosophy that, 'each day we begin again' and listen with the ear of our heart to your words O Lord.


I will not lie, I'm struggling with awful inflammation in my low spine and at one point it became too painful to even sit.  I have some pretty strong anti- inflammatory medication that has begun to take down the swelling and the gentle walking is helping to try and shift everything into place.  I also have an Osteopath appointment next week, Praise God!  However, if I'm not careful pain can really start to drag me down, so having these challenges such as an outdoor hour keep me focused and distracted. Seeing the little shapes being coloured in on the nature mandala wheel is also a real encouragement to keep going. 


Since the 2nd of January I have so far clocked up a total of seven hours outside, which is no mean feat for someone with a chronic health condition.  It has not all been plain sailing and there have been times when I have wanted to stay huddled next to the fire, but every time I have ignored that inclination my spirits have lifted for being in nature.  This morning I took a very slow walk to the nearby river and I sat on the bench to soak up the sounds, finish my prayers and just be in God's presence:












In addition to the challenges we also have a joy jar on the table with squares of paper and a pencil and it is openly available for folk to add something that brought them joy that day.  I'm hoping by the end of the year it will be full of such moments that we can share and reflect upon.


Whilst I was on my walk Pip was busy turning this masterpiece into thank you cards for family and friends:






Monday, 3 January 2022

Christmas Week and New Year

Ben travelled back with Mum H on the 27th and so  we decided to be brave and take Pip out for lunch on the 30th as we figured it would be crazy come New Year's Eve.   In fact it was positively heaving at our chosen venue, however thanks to be God, we had a table at the far side and were sheltered by a huge Christmas tree.  I was so relieved we were not seated in the main part of the restaurant it resembled a rugby scrum 🙄. Despite the nagging Covid worry rambling around in my brain we all enjoyed our meal:


Pip taking a photo of her food to show Ben as he'd been out for lunch with Nanna earlier in the week - she had Chicken Caesar Salad.



Dave had Tuna Nicoise.



Mine was goats cheese and beetroot salad and sweet potato fries.  It was utterly delicious but I no longer seem to be able to tolerate any dairy including goats cheese/milk which is a shame. 


On New Year's Eve we had a visit from some friends, it was lovely to catch up with them and the kids had a fab time.  By the end of their stay I wasn't feeling too great (not Covid just a usual chronic health crash) and in truth I just wanted to go to bed but had promised to make dessert for our New Year's Day family meal and so I set too in making keto friendly Boston Cream Cake. To my surprise and delight it was a real winner 😊


Gluten free, dairy free and very low carb Keto cake.


I've not had a word of the year for several years but felt called to have one this time round and my word this year is 'Faith.'  My faith has most definitely been tested this two years and not entirely due to Covid!!  I haven't lost my faith in fact I'm incredibly grateful to have a real person who is so much bigger than me and knows every hair on my head that I can turn to.  What I have missed is living the liturgical year and feeling safe enough to attend mass in person, assuming we are well enough to attend in the first place.  My hope and prayer is that this year we will live out our faith more liturgically.

In addition to spiritual matters I've decided to have a go at three rather broad year long challenges - de-cluttering 2022 things in 2022, 1000 hours outside and adopting some of the #Home Front Solutions adopted by women and families during the second world war.  I always do better when I have a focus and even if I don't complete all the challenges it's the trying that counts!  I'm also a visual person and had a lot of fun decluttering some magazines, cutting out relevant pictures and making a vision board for 2022:



I love the phrase 'put a pause in your day' a reminder to sit down with a cup of tea and recharge and most importantly to spend time with God.  I've welcomed the return of alfresco breakfast and coffee time with God for the last few mornings:

Outdoor Hours Chart.



Welcome blue skies this morning.




Yesterday's breakfast on a rather damp and dreary day ❤️






Tuesday, 28 December 2021

Christmas 2021

 Merry Christmas one and all 😊. Pip's health continued to hold and we have had a lovely few days.  We spent Christmas day at home and travelled to Grange over Sands on Boxing Day to see Sara, Tom and Oliver.  Pip had a visit from one of her 808 friends today, they both did lateral flow tests which were negative 😊


When I was at Booths on Christmas Eve purchasing a few last minute items I saw this mug and thought that would be brill for Mum H!  How right I was 😂








A Poppy Present!













The Keto Yorkshire Puddings were a real hit, they are made with coconut flour, tapioca flour, xantham gum, psyllium husk, four eggs and dairy free milk.  Mum H said, 'they tasted as good as regular Yorkshire Puddings.'



All in all it was a lovely day ❤️

Thursday, 23 December 2021

DPP Day Twenty Three ~ Thirteen Today

 Yesterday was a really challenging day and Pip was anxious that some of the birthday plans would have to change but that was not the case!  A real answer to prayer ❤️.  She had a short period in the afternoon when she was struggling to remain upright but that was just at the end of The Harry Potter Escape Room Game and then it was time to watch the film, "A Boy Called Christmas". Would definitely recommend watching it if you get the chance 😊

We also had some other rather unusual answers to prayer.  Our GP follow up this morning highlighted some abnormal blood test results which necessitate a referral to a paediatric endocrinologist.  We seem to be collecting consultants and assorted conditions at the moment and as much as I would rather this wasn't the case, it does at least explain why other certain health issues have been happening.  In addition Pip's cardiologist rang to enquire how things were progressing with the drug change and I was able to explain that things have not been great at all.  As a result we agreed to trial one dose of the ivabradine first thing followed by propanalol for the remainder of the day.  He is also going to speak to her paediatrician and request IV Saline once a week as this makes a significant difference to many PoTs patients.  With all of these medical issues I really felt as if God was saying, 'I've got your back, I know it's hard but things will come good.'

Here are the photos from today:


Super happy to be thirteen ❤️






Not quite x marks the spot as Pip was born in the dining room in the old house!  However we were in the dining room and next to the table where she was born 😊. Normally we try to have a photo at her time of birth 8:39am but we are all exhausted so the photos was taken an hour late.


Pip love, loves football and her favourite team is Liverpool.  She was made up with scarf that we had bought her and her play therapist/counsellor gifted her a Liverpool shirt which she is going to frame and put on her bedroom wall.






As usual Pip's best friend Beth came to spend the day with us and both girls had a really lovely time:



Enjoying a lunch of sausage baps and vegetable sticks.





Working through the clues.


Me helping out as by this time Pip was definitely feeling off.






A rather unwell Pip glad to be sitting down with her legs elevated.  The girls are holding their prize, another dog themed Christmas decoration - although Beth has told me that she keep hers up all through the year ❤️







Making origami stars.





As per tradition they both get to blow out the candles ❤️


Low carb chocolate, caramel brownie birthday cake.  It's the first time I've made it and it was a real hit.


 A final end of day treat hanging out with her school friend Anna from InterHigh.  They are both Minecraft gaming fans and Anna had designed a birthday world for Pip complete with balloons, games, food and a spa!  They video/audio chat on discord as their virtual characters work on building a project.

I'm so glad that we got to make some special memories today it has really warmed my heart and I now feel that I can breathe easy for the time being.




Sunday, 19 December 2021

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 😂

Thursday, 16 December 2021

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 ❤️


Tuesday, 14 December 2021

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