Hello ❤️

 It has been a while  and I certainly hadn't meant to step away from this space for so long.  Long Covid is a tricky beast to live with and it doesn't take much to knock me off my limited baseline.  I have missed updating here and checking in on friends so here is a short whistle stop tour of the past ten months:

During the first half of this year as you can see knitting and a bit of crochet featured heavily, sock knitting in particular!  Scrappy socks using left over yarn and birthday socks were made and this was quite an achievement since I struggled to remember how to follow a simple sock pattern!  As my cognitive functioning began to improve other items were made, some baby cardigans for a cousin, a crochet balaclava for Sara and Barbara the emotional support chicken for Pip.

We have another Grand-baby on the way due around Christmas time ❤️

Ben turned 21 in June and amongst other things a walnut and coffee cake was requested.

We visited a local military museum with Pip at the start of the summer break.

The highlight of Pip's summer was visiting Liverpool football stadium and museum.  It was a very challenging drive for me even though it is only just over an hour away, and Pip did her bit by pushing me around in the wheelchair.  It was worth every minute to see that smile on her face.

We are now back to college on Wednesdays which she absolutely loves and her last year of Inter-high and GCSEs with all that entails 😕

It's been a cognitive challenge finding my way around this space and I cannot remember how to reduce photos or put them in a folder 😂, so I guess I've some learning to do!

If you've stopped by here to wave hello then thank you x 

Another Month Almost Over!

 I certainly lose track of the days and had no idea that I've been absent from here for a three week period.  We seem to have had a run of medical appointments which always manage to affect my health because of the additional driving.  I've also had a bit of a blip with regards to my own health and so there has been a ramping up of some of my Long Covid issues including digestive issues, problematic PoTS and swollen glands/sore throat, muscle aches and pains.

The Chancellor's Autumn Budget and the usual Tory attack on chronically sick and disabled people was incredibly worrying, and since we are stuck on 'welfare' it did not bode well.  I was so fed up of the narrative that we should all be working from home that I decided to undertake my own experiment and the results are as follows:

Jeremy Hunt V A Chronically Sick Person:  Just how easy is it to get a work from home job?

After taking my pills washed down with a morning cup of tea I decided to investigate this conundrum.  For clarity which will become obvious later, I was still in my pyjamas and in bed and it was around 8:30 am.

My first task involved a Google search entitled, 'virtual assistant work from home jobs in the UK.'  I chose the first site that was recommended to me which involved Data Annotation.  After setting up a basic profile I was given a series of tasks to complete, which involved looking at social media images and declaring if they were hateful in any way and if not why not.  I also had to find an NPI number for a counsellor in New York and proof read chatbot responses. In addition there was also a short creative writing piece which necessitated a Google search concerning Sam Bankman Fried.  I was quite pleased with my initial response but in hindsight had neglected to include some form of dancing with regards to the octopus!  If I had been an English examiner I would probably have docked some points to reflect that oversight :-). The whole assessment procedure took well over an hour to complete.

I then decided to check my stats using my trusty Garmin Venu watch and the results were illuminating.  My heart rate had increased significantly (over 105 bpm sitting upright with legs elevated) and my Body Battery had begun to tank (starting battery which measures heart rate variability and blood pressure changes had gone from 47 - 22!), bearing in mind I hadn't even moved from my bed! I have conditions that are made worse by exertion of any kind - cognitive, physical or emotional and as a result my health continued to nose dive that day and my heart rate shot up to 127 bpm just moving around the home and my Body Battery eventually dropped to 6, the worst it has been in over six months.

Government ministers are not medically trained and to arbitrarily declare that all chronically sick people are capable of working is erroneous.  For some folk being able to work from home, provided appropriate disability accommodations  are put in place would work just fine.  For others, myself included, we need to be given the time and space to recover fully and then some form of consistent work might be an option in the future.  Forcing people into work when they are unwell is at best unwise and at worst downright dangerous.

I think it is safe to say that for 'now' you'll find me by the fire with my knitting and/or a good book, and the usual pacing programme to get through each day x 

This Week

 We've had more rain than sunshine and so warming soups and casseroles have been made:

Lancashire Hot Pot for our tea this evening, followed by home made lemon rice pudding.

Speaking of the rain our garden is looking rather lush and when I checked up on the raised bed, this is what I found this lunch time:

Looks like I'll be making a whole heap of soup, cakes and quiches with this hefty bounty 😂. 

Note to self - remember to check on the courgettes on a regular basis!!

Pip had her monthly physio visit on Friday which was very productive and she has begun a weights based training programme.  Babs her physio started her with 4kg and 8 kg Kettle Bells and then she tried lifting a 15kg weight using the bar with weights either end.  Whilst she was working with the kettle bells she was also doing squats, needless to say her legs were more than a bit sore yesterday!  Thankfully she was feeling much better today and very kindly helped with weeding in between the paving slabs on the patio this afternoon.

A well deserved post work out/break the fast brunch.

The drive home took way longer than expected due to a road traffic accident on the motorway and I was exhausted and struggled to walk from the car to the house.  Driving is really hard on my legs these days and it doesn't take much to set them off.  I declared it a no cook tea so we had a breakfast bowl of cereal, nuts, fruit, flaxseed and nut butter for our tea 😊

I've finished another shawl and this one is for a permaculture friend who is facing a very tricky and challenging operation at the end of August.  This person loves the sea and I though the combination of the plain blue and alternate variegated yarn resembled the waves breaking against the shoreline:

I'm calling this 'The Sea Breeze Shawl.'

A fellow doula friend who has a soft spot for Our Lady shared this on her Instagram this morning and I thought it was so lovely I would share it here:

The large and lovely lessons

You taught with little breath

In the Liturgy of Labour

In the house of Nazareth

Are such fantastic simple things

That mortals may presume

To call the Queen of Seraphim

Our Lady of The Broom

For you who rule the angels

Built up our legacy

By living a life of little things

That we do every day

You cooked, cleaned, washed and mended

Scrubbed the kitchen floor

Teaching a world the woman's way

To worship and adore

How beautifully you taught us

Where all perfection lies

By seeing all salvation in

The work before your eyes

Immensity in little space

The world in the humble room

You swept and kept and cared for

Our Lady of The Broom.

Hope you've had a good week, off to check up on you all ❤️

Saints :: Reading :: Mindful Moments

 Last week saw a mention of two saints, our very own Saint Benedict on the 11th and St Swithin on the 15th.  We inadvertently celebrated St Benedict's Day with drop scones topped with blackcurrant conserve and clotted cream.  Pip was having a particularly bad week health wise, so the scones were made in an effort to provide much needed cheer, and it was only then we realised it was a feast day 😊

Saturday was a very windy, thundery and rainy day and so far the old rhyme is holding true 🙄:

"St Swithin's day if thou dost rain for forty days it will remain,

St Swithin's Day if thou be fair for forty days 'twill rain nae mair."

In order to combat the dreariness of the day I baked an egg free chocolate cake sandwiched together with melted almond butter.  It was really yummy and being egg free meant fewer allergic type reactions for me ❤️

I've so far read three books this month, two were a complete hit and the third admittedly was more for information:

This book was laugh out loud hilarious! A lovely story of friendships forged in the most unlikely of circumstances and the joy all of that brings to an otherwise mundane existence.  The insight into elderly care and the general running of a nursing establishment was spot on, and no wonder why for the author is a qualified GP. 

I've read Marie's first two books a long time ago and it was lovely to find this in our library online catalogue.  The author does a fab documented the daily grind of live aboard life, the unromantic and hidden side - disposing of the Elsan toilet waste, trying to find water when the river is frozen solid and dealing with a dead mouse decomposing in the darkest recesses of the boat, for an animal so small the stench was overwhelming!

I've watched/listened to several of Gez's youtube videos and so was looking forward to reading this book but in truth felt overwhelmed with all the scientific and patient led information, my brain just does not cope with swathes of info these days!  As a result I didn't finish reading, I think though it is meant to be a book that you dip in and out of.

I've just completed my eight week mindfulness course and it has been very helpful, lots of information and tips to apply in every day living.  If I have a day that is fairly predictable and home based, then I do try to tag my mindfulness sessions during my rest times in the day. 

 However it has come in really handy when a stressful situation has occurred, like Sunday for instance when we found that we had a flat tyre coming out of the garden centre. In the past I would have been quite stressed and quickly adopting a negative mindset ( our brains are wired with a negativity bias!) but this time I used the breath as my anchor whilst sitting quietly and I quickly reframed my negative thoughts with positive aspects of the situation.  In the end it all turned out fine 😊

The only time that I find being mindful a real challenge is when the dysautonomia symptoms are very challenging.  Despite taking medication to slow things down, the past few days have been quite tricky with the chest pains, feeling out of breath and elevated heart rate - due in part to doing too much such as driving, being on my feet or attempting to sort some things in the house. It's during these moments that I seek solace in reading/knitting as a distraction and the warmth from a hot water bottle on my chest is a comfort too.

Mindful veg chopping

Speaking of knitting, I finished the pink and green shawl for my poorly friend and have cast on another one for a friend whose birthday is in September.  It's so good to be knitting again ❤️

Snapshots

 I've had a bit more brain band-with these past few days, so have managed to plan food for the next day as well as following a couple of recipes.  I still cannot remember conversations that I've had earlier in the day which at times proves to be interesting 😂

Bolognese with Polenta Topping.

Rhubarb and Apple Crumble with Dairy Free Ice Cream.

I made enough crumble on Monday to serve two days, so we are having the other portion for dessert this evening.

Pip is in the throes of studying for end of year tests and so life is a bit full on for her at the moment.  We have been looking at different study techniques and learned about 'The Feynman Technique' today:

In her hurry to get sorted this morning poor Wilbur was left on guard duty in the bathroom:

We have an epic drive to Manchester tomorrow for a specialist appointment for Pip, it's just over an hours drive but we plan on breaking the journey for a rest stop for me and please God all will go well ❤️

A Long Covid Crash

 On Monday 22nd May I had an appointment with the Long Covid Service which necessitated a 45 minute one way drive and a 90 minute appointment.  By the time the appointment was over the muscle tremors and pain in my legs were horrendous and I struggled to drive the car home.

That appointment could have been conducted via a video call, for the healthcare worker went through the answers I had given via an online questionnaire a few days earlier. There was nowhere for me to lie down and being upright for that amount of time caused blood pooling in my legs and feet. In addition the ventilation in that room was very poor and the whole hospital department was full of air fresheners, which exacerbated the MCAS problems.

As a result of that appointment I spent the remainder of the week pretty much stuck in bed - as soon as I attempted to walk just a few steps the tremors and spasms would kick in, followed by horrendous nerve pain and blood pooling in my legs.  Every time I moved it felt like I was wading through treacle :-(

Despite all of that I did manage to be as productive and purposeful as I could and the 'Bed-Kitchen' was swiftly put into use 😁. I did a lot of the food prep and Dave and Pip were the Gofers.

Whilst all of this was going on I also had an issue with my wisdom tooth - I was having intermittent pain in that tooth and on Friday evening it split in half right through the nerve 😳. I must admit for a good minute or so the pain was horrendous and then good old adrenaline kicked in to counteract some of the discomfort!  Thankfully I was able to access an emergency dental appointment on Saturday morning, which did necessitate a 40 minute drive and so the remainder of the day was spent horizontal trying to counteract a crazy heart rate from being upright and having a medical procedure.

This week has so far been a bit more stable and I seem to be back to a baseline of being more upright around the home with plenty of sofa moments or outside on the zero gravity recliner in between.  I did also offer some constructive feedback to the Long Covid Service which was taken on board, and as a result of my being so unwell, I am now assigned one-to-one access with an Occupational Therapist via online appointments.

The Bed-Kitchen in action, adopting the 'problem is the solution' permaculture principle!  

We also had 'Bed-Picnics' and Pip quite enjoyed sitting at the end of the bed with her tray 😊

Head Nurse Poppy was not far from my side, she has been a constant companion since this Covid debacle.

Pip single handedly ran the home - fetching and carrying, making drinks, helping with meals, sorting out the laundry, all whilst dealing with her own health issues and trying to study for end of year exams.

On Sunday I finally made it to the back door and Dave and I enjoyed some breakfast in the sunshine.

On Monday in between resting in the recliner, I managed to sit by the raised bed and plant out a courgette plant.  Micro actions consistently done propel us forward and this recent crash has made me appreciate the premise for my Permaculture Design - a disability friendly garden ❤️

I have continued reading throughout the month of May.  I enjoyed all three of these books, although don't ask me for a thorough review - thanks to brain fog and memory issues, I frequently forget what I have read.  It's not unusual for me to read the same thing over several times 🤪

 Frances Brody is my favourite crime writer and not one of her books has ever failed to disappoint. This book, her most recent was gifted to me by a long standing Green Parent friend, we 'met' on the Forum when our kids were small.  

 If you haven't heard of Raynor Winn or read any of her works (Landlines is her third) I would highly recommend you do so.  Her first book The Salt Path was written amidst the backdrop of homelessness and a diagnosis of a very serious degenerative brain disease for her husband, Moth.  With very little money in their pockets and a rucksack on their backs they decided to walk  the 630 miles of the sea-swept South West Coast Path, from Somerset to Dorset, via Devon and Cornwall.  That path changed their lives in ways they could never have imagined.

The last book 'Afloat' is another story of life changing moments born through adversity and crisis.  I have my Dad's wanderlust spirit but sadly not the health to carry such adventures through, but I do love reading other people's stories, especially if they also charter a significant life change amidst it all.  I think it's the humanity portrayed within those tales that provide a comfort to my soul.

Well, I've managed to make a May posting on the very last day of the month, I wonder what June will hold?  Sending hugs if you need them xx 

Time Flies …

It’s nearly two months since I posted.  Most days I’m in survival mode with the occasional glimmer of feeling well enough to undertake a half hour of sitting down gardening, or cook a meal sitting down with rest breaks in between, but most days you will find me on the sofa 🙄  My heart rate still isn’t right and I’m now dealing with another long covid complication called Mast Cell Activation Syndrome or MCAS for short.  This means I don’t tolerate eating a lot of foods containing histamine and certain cleaning smells can have me feeling like I’m short of breath.  

Despite life in the mundane slow lane I have been taking photos so here is a rough round up of the past six weeks or so:

Books Galore

Permaculture and Nature Therapy

The garden has been a valuable healing space, on good days I’ve eaten breakfast outside, photographed flowers, learned to love weeds (a real sign of resilience and my watch word this year 🙂) and adopted slow solutions in tackling my Permaculture Design Certificate- not giving up!

Painting the compost bin and fence panel was a joint effort family affair.  The other panels will be painted at some point. 

Out in my PJs on a Saturday morning moving buckets to collect extra water using the permaculture principle of ‘use and value resources.’ 

Meditative sky watching. 

Planting a variety of free seeds gifted by a friend, some have already begun to germinate.

Dave tying in the Egremont Russet apple tree. 

A whiskey barrel plant guild - food to eat, food for pollinators and nitrogen fixing plants. In the barrel there is a variety of flowers, tomato plants, lettuce and beetroot seeds and I’m hoping to plant some beans for nitrogen. 

Tulips in the front garden. 

Sorry for my absence to anyone who stops by here on a regular basis, I do hope you are well and hopefully I'll manage to pop by more frequently xx