HERE IS MY LOCKDOWN DAY - how does it compare to yours?

Whilst we are all in the same boat in most respects I do appreciate we have different things going on.  Some of us have children  living with us, maybe parents etc.  I know some live on their own and many have wives, husbands or partners with them. I know some work either from home or out  in the  real world which also makes a difference to how our days pan out.   This of course means lockdown does differ for us in many respects despite all being tied to restrictions.  I decided to write what happens here in lockdown on a typical day.  Yes pretty boring but how does it compare to yours,  

Wake up time 4.45 panicking as my breath had left my body never to return I feared.  I tried to draw more air in but my throat was closed.  In time, actually only seconds though it felt longer I snatched my glass of water from the bedside table and drank,  My throat opened to receive it so I think  the issue was more to do with dehydration rather than my lungs, totally dry throat, I often wake in the night parched despite drinking a glass of water before bed, sometimes two.  I had read somewhere that those with heart issues should always drink a glass of water before bed so i have  since complied with this. (maybe I get up  in my sleep and do mad exercises as when I check out my resting heart rate I am surprised to see that when I am sleeping it is generally in the fat burn zone so I get dehydrated ! )  So there it is, I can’t possibly put weight on while burning up the calories) No point in attempting to go back to sleep so I turned on the tv and watched a programme about how our body works.  What a fascinating programme it was and so interesting to see how our white cells were gobbling up the  baddies that had invaded our system .  Just wish they could gobble up all the stuff making our lungs getting narrower and narrower!  Roll on stem cell in a few years time which could cure pah.   

6.00 and time for my meds.  Whilst it seems a crazy time it works for me as I take water tablets along with the numerous others to keep me alive.  I want my water meds to work before school time and our taxi service for Izzy.  It was then time for the news which is not pleasing right now as the EU want our supply of vaccines despite them saying they were only 8 percent effective and also despite them waiting three months after us to order them ( waiting to see if we grew horns or died of the vaccine). I am not getting into politics here but I was sickened to see the whole sorry mess.  I stayed in bed a while and took the readings from my machines for the studies I am currently on.  The Denervation study will be ending for me in February which I am gutted about though I have been told I can then download an app and read my own pressures.  Then there was nothing for it but to get up, washed and dressed ready to begin another day.  Oh whoopee do!   Oh and nothing yet about my vaccine but not getting down about it. It will happen when it happens.  

Izzy came round to the car at 8.30 put some hand sanitizer on and wearing her mask got into her seat ready for off.  We were waiting with our masks on too and the windows wound down as advised by the government.  A breezy ride to her school to drop her off and we then went to the canal to begin our exercise for the day.  Fortunately the canal was quiet and we managed a nice walk of around 3.5 miles - included in that was a six minutes walk test as part of the study.  Some of this walk took in the river and we were pleased to see that it was not too high after all the rain we had.  Lots of horses had clearly been walking down by the river as far as the levy where they would have gone over the cricket pitch.  Their hoof prints were deep in the mud, a nice clean up job needed on these when they arrived back at the stables.  After our walk it was home for breakfast.  

The day before Izzy had told us that her school pudding was supposed to be a blueberry muffin but there were no blueberries in at all and these were her favourite ones.  I promised her I would make her some so after breakfast I did just that.  Muffins in the oven loaded with fruit but little sugar ( I do my own version of a muffin more healthy using oil, milk and little sugar and fooling the brain to think they have loads of the latter I sprinkle  sugar on top of the uncooked muffin ergo every bite has the sugary topping). I then decided to make a broccoli and Stilton soup as our Sainsbury order was being delivered that evening so I used up the veg I had in the drawer of the fridge. Colin tells me has put put two bunches of my favourite flowers on the list, tulips,  I can’t wait to see them. Deciding to rest awhile I turned towards the door and felt the familiar pop of my nose deciding to bleed.  Fortunately this  was not a bad bleed and was quickly stopped.  I get a lot so have learnt to just accept these bleeds as part of my condition and the meds I take. 

Resting in bed I caught up with some admin of the pah group I am part of and also read Facebook messages etc,  After a short rest I returned to the kitchen and enjoyed the soup and a gorgeous muffin.  Colin was talking on the phone to my son about various things so I headed into the lounge to do exercises for my bad back.  They are good but I do struggle to get off the floor afterwards.  I then caught up with the journal I write for Izzy as it was long overdue and made pizza dough for dinner,  We had decided we wanted something simple and tasty and as this is so easy and my son loves them we agreed that Colin would put the toppings on when the time was right and make a salad. Though my son does not live with us he does live next door with my daughter and her family whilst COVID is going on.  I always include him in our evening meal.  He comes to the utility room door and takes his tray of food back to his room and eats.  We can’t have him eat with us due to COVID and as my daughter and son in law are first line and so at any time could have COVID he does not mix with them either.  It works for us all.  

A couple of jobs needed doing so I pulled out all the things under the sink cupboard.  I took up the old lining paper and made it all fresh with new. I say it needed doing but it didn’t really I just needed to find something to do.  Colin and I sorted out the cupboard that houses all our Klik containers and disposable ones too making a good job and more room to see what we have. 

Time to collect Izzy from school so suitably masked off we went.  We were a few minutes early so just sat and caught up with the news on our phones.  Then came the kicks in my lung.  I hate these.  They began around a year ago when walking in Coniston.  As we were walking along a path back to our motor home I felt a huge pain in my right lung like I had been kicked.  I turned around to see who had kicked me and of course nobody was there.  A few seconds later the kick like pain came again and a few seconds later a third time,  the pain was so hard and unexpected I shouted out with the shock of it.  Ever since maybe once every three weeks I suffer these.  Never found out why or what they mean but believe me they HURT.  Does anyone else with ipah suffer these, would be interested to see.  

Izzy delivered safely home and with a box of muffins so a happy girl I finished her journal and went for another lie down.  Yes I have quite a few of these.  Not sure what is happening with me at the moment but my chest has been feeling very constricted, like a very tight  band has been placed around my upper chest ( I suppose something like in the old days when they strapped up those who had broken ribs) and this makes my breathing more difficult.  My heart feels heavy too, it’s difficult to describe exactly but feel sure lots of you will know.  Because of this I do rest rather a lot.  

So it was that I was resting while Colin was putting delicious toppings on the pizzas.  Passata sauce with herbs, cheddar and mozzarella cheese, jalapeños, black olives and pepperoni, fabulous combination it was too.  Just as he shouted they were two minutes of coming out of the oven I asked him if he would squeeze half a lemon over my salad,  shock horror he had forgotten the salad so this had to quickly be rectified, can’t have pizza without salad in our house.  There it was, easy dinner sorted.  Not our usual kind of dinner but it was enjoyed by us all anyway.  

I was exhausted and stayed in bed after dinner and Colin came to sit with me whilst we caught up with an episode of Escape to the chateau ( the work all these owners do to their derelict run down chateaus is remarkable and they are turned into magnificent homes that generate money by holding functions etc.). It is tiring to watch them.  Then an episode of Ben Fogle and his real life journeys to see how some people opt out of traditional life and how they live,  Quite mind boggling some of them.  

and so to bed ............

Settled for the night with my drinks of  water I wait to take my evening meds. I always hope for a good night but these rarely happen as pain keeps me awake or wakes me up way too early but waking up is a bonus, the opposite would be to NOT waking up and I am not ready for that yet. 

So right now life is pretty much the same as for all in the UK and indeed worldwide as life is not as it should be,  We should be out enjoying seeing friends and family, having pleasant meals out in nice restaurants or holidaying in lovely places.  Alas not to be but we hope if we stick to the rules, obey restrictions and try to keep ourselves as safe as we can there will come and end to all off this, 

In the meantime our hearts go out to those who have not made it through due to COVID or other illnesses,  Many families are devastated right now and I am just so thankful that despite difficulties, illnesses  etc we are still here to tell the tale, still here to bake the muffins and clean out the cupboards.  

Colin has just begun the process so he can bake sourdough for tomorrows lunch and this is always a treat and so delicious,  So I will leave you now and hope your day is a happy one.  

Tons of love to you all. 

Carole xx

THE LYING DIRTY CHEATING SCUMBAG!

I have just watched a programme that has so sickened me.  It was about a woman named Nicole who lied and cheated her family, friends and strangers out of thousands of pounds.  How she did this was to set up a Go Fund Me Page and said she was very poorly with a rare form of cancer and needed treatment not available in this country,  She was so convincing that when the fraud team arrived at her parents house her parents and her son were so sure she was seriously ill,  they really believed that she was at deaths door and even the fraud team wondered if they had indeed got it wrong. She had hurt her family in her greed to get money. It made me so angry that somebody could be so greedy, uncaring of the pain to her family and of the many that sent her money.  Fortunately she was found guilty of fraud but what a sickening story.  When she told her family she was dying of this cancer she said the only help available to her was at a clinic in Spain.  The Go Fund me page was set up  and lovely caring people ( mostly strangers ) sent her money to help her to try to get a cure . Where did the money  go.  Well she was a gambler and it went on her addiction plus posh holidays abroad, fine clothes etc.  

As I am a person with a life shortening illness and being so well treated by the NHS here in the UK I was horrified to see that she even actually used treatment she had in our hospitals to bait her trap.  She had been in hospital to have a gall bladder operation and pictures were taken of her looking poorly in her hospital bed.  She used these pictures to say she was in Spain where she had to go for this special treatment costing around ten to twelve thousand pounds a month.  She needed months and months of treatment so clearly wanted the kind and caring people to pay for it.  We are a very caring nation and the money flooded in to her page. Fortunately there are fraud teams out there whose roll is to investigate these go fund me pages.  Many are found to be fraudulent but sadly also many go unnoticed whilst  the greedy people just rake in the money. 

This programme made me feel crazy and angry.  It is people like these that stop the ones really in need of help on go fund me pages to be taken seriously.  I for one rarely give to go fund me ones.  Unless I know it is an honest person I would not give as trying to find the truth is beyond my capabilities.  This is such a shame as the innocent are being punished by the greedy and guilty ones. Not sure of her punishment but she sure would have lost her friends who gave to her page. Her son and parents will also look at her differently from now on.  

It’s not been a fun year has it.  

As we moved out of 2020 and into 2021 I feel sure we all are all hoping for a better year - an end to this constant worry of COVID - a disease that seems not content to killing and isolating many but that also appears to keep changing its patterns and adding new strains into the mix.  It has and still is a terrible time for us all to endure, young and old alike.  All we can do now is hope that we are still here to get to the end of this terrible disease and begin to live a full life again.  Sadly it seems we are quite a way off this yet but each and every day brings us closer and closer to this goal.

The government are discussing whether or not  police, teachers and shop workers, army etc should get their vaccines sooner than was first discussed.  For me this is a no brainier.  These people are in the front line too, seeing so many children or customers  or heads of departments etc.  Of course NHS had to be first without a doubt but without shops, or certainly food shopping where the heck would we be,  Teachers too.  There are still children that need to attend school as parents working on the front line so let’s give them their vaccinations,  I am shielding so would happily give mine to any one of the above to go before me in the queue.  Anybody whose work brings them into contact daily with lots of people are a threat to passing on the virus. So let’s get police, teachers and those working in shops or with lots of people vaccinated so they are safe and unlikely to infect those not vaccinated. I just can’t wait to see and end to all of this.

On the COVID front I am happy to see that my friends George and Nicola Gaskin and their daughter are all recovered from their COVID.  I was very worried about them all but in particular for George who is very vulnerable indeed.  Each day I would look for updates and be fearful when there were none ( though I did get updates sometimes from them by messenger) but always dreaded worse news.  So thankful they beat this and hope they soon get their strength back. George is back joking on Facebook so it’s looking good. 

SNOW

How lovely to see the snow last week but my the disruption it caused.  My daughter was stuck for hours trying to get to work and in the end had to abandon her journey and return home.  School for Izzy was cancelled for two days.  We only received this notification just before Izzy was due to leave for school so we had a dilemma.  Clearly she could not be left home alone so grandad decided he would take her walking in the snow, both masked up.  What a delightful time they had,  Though the snow was too crunchy or powdery to make snowmen they found lots to do and returned home freezing cold but laughing and happy,  Hot chocolate was the order of the day on their return and we just had to hope that the cold air killed off any virus that Izzy could be harbouring unbeknown to us.  The following day was fine as Chris was working from home so we were left out of the equation.

Her school along with government guidelines sent out letters to parents attending school to really think if their child could not be taught at home.  We were dreading this.  Had they deemed that they could not offer her a place what were we to do.  Anyway we were fortunate that her parents jobs meant that her entitlement to schooling was good and true and she retained her place, though sadly her two best friends did not.  So now where there were 12 at the beginning of this reduced to ten then another reduction  it has hopefully finished at just seven children in her class.  The sad thing is she has gone from the happy girl loving to attend school to now being a sad little girl who attends without her friends.  There is nothing we can do about this and just hope that she adjusts as it appears that schools may be closed until after the Easter holidays. 

AMAZON

I am joining the group of Amazon shoppers.  Never thought I would but what can one do in these trying times.  It amazes me how we can find anything online through Amazon.  Colin has bought lots of things for his new bike and garage things ( men’s things he would say ) though many women also buy bike equipment and tools too.  I have bought a few things - one being a dye to dye my sons very expensive top that he dropped something on a long time ago and rather than deal with the stain it just got pushed to the back on his cupboard.  He showed me the top and told me how he loved it and could I get rid of the stain.  Despite many stain removal hacks it was not to be so I decided to dye it black.  Amazon delivered the said dye the day after ordering it and now the top looks great!  So pleased to have rescued this and so pleased we have Amazon cos no way would I have touted the high street looking for this dye. Another thing I ordered was a door draught stopper.   ( LOL. When I wrote door stopper and checked it said daughter stopper!  Danielle would not have been amused) This house is an echo one so we are tight and cosy EXCEPT for the integral garage door.  We do get a draught when the wind is really bad and it needs stopping.  Still waiting for delivery so hoping it works. It astounds me that anything one looks for can be found so easily.  Thank goodness for Amazon in these lock down days but hoping we all begin to shop again on the high street when Covid hits the deck. 

HOLIDAYS

We had been thinking we would be booking holidays this year but have now decided to just hang on.  We will likely if things improve later in the year to drive to Spain and bypass the dreaded airports and the need to fly disabled - I hate this- so when and if we do go this will be the way to do it.  If we go for a month it makes it a decent holiday.  We will need to wait until school is up and running as Izzy will need before and after school care too.  Though we do much in the care of Izzy, she is such a delight to us we are also aware of my illness and time is pressing.  This will be the only time we will have ever been away from her for so long and we are so thankful that we have FaceTime so we can keep engaged with her.  We will have to apply for new passports too soon and hoping we get the blue ones now we are out of the EU. 

Being good but sometimes so hard. 

We are abiding by all the government rules totally but oh how I wish there were circumstances where we could bypass.   We have a dear friend, one of a group that spent lots of happy times together.  Sadly she is losing her fight to cancer after a very brave battle indeed.  We are not allowed to go into her garden so can’t even stand at a window and talk to her.  This is such a sad time for so many people.  I hope I can eventually get to see her and give her a huge hug.  So many people are in this position now where they can’t be with their loved ones.  All we can do is stay safe and listen to the rules.  

My son has had to go over to Leeds to sort out his apartment.  Sadly his tenant from Kuwait had to return home due to COVID and the University not open. I hope he can fill it again soon but with these COVID times it may well be it is not rented out for months.  Such difficult times that touch so many  things

Right enough now as I need to catch up with Izzys blog.  Again difficult as we are not doing much to write down for her and nor is she but there it is.  The good days will return when we will will all join the real world again.  It can’t come soon enough for us.  

Warm love to you all. Stay safe and if you care to comment I will say a huge thank you here and now.

Carole xxx