COMING OUT OF LOCKDOWN

At last we have a date!  To be honest as a clinically extremely vulnerable person I admit I will be very nervous but we have to get on with our lives.  We have had 12 months up to press with three more to go  - who could ever have known when it all began it would last so long,  With a life limiting illness we could have thought  it a waste of our  lives but we didn’t.  It gave us a chance to catch up with jobs, speak to friends on the telephone, try lots of different recipes, learn to grow  fruit and veg in our newish garden and not to feel guilty for wearing lots of pyjamas!  Life will change again and hopefully if we are all careful, taking precautions when outside we just might come out of this on top.  Thank  goodness for the vaccines.  

Talking about the said jabs at the phlebotomy department today the nurse using the vacuum to take my full blood tests said she had forgotten how to do them as she had been away for three weeks,  I asked holiday or COVID and she told me that her husband, son and daughter and grandson all living in the same house came down with COVID but she did not.  Five weeks ago she was given her vaccine ( she had the Pfizer but I think they are both great ) and she did not get COVID.  She put it down to her having had the vaccine and the family not and I agree.  I was so pleased to hear this and it gave me so much hope for the future, not just for me personally but for mankind the world over.  We cannot be free of the pandemic until the world has the vaccine with regular top ups as with the flu jab.  As a country we are doing well in the injection take ups but we are just a small part of this horror and we need the small countries as well as large ones having the same opportunities as us to get theirs done,  I hope humanity pulls it socks up and makes sure injections are available for everyone whether a rich or a poor country. 

We both had our first injection at our local hospital and to be honest it was so smooth and easy.  We were met just outside the door of the venue and given forms to fill in and then very quickly shown into  our own little booth to have our jabs.  We were both given the Pfizer one and after a fifteen minute wait afterwards we left to go on a walk.  We had no side effects, not even a sore arm and we felt so much relief that we have begun the process to hopefully be safe.  I pray it goes well for everyone else and that we can begin to feel peace again.  

I woke up in the middle of the night about three days after having my jab.  I was clearly coming  down with a cold and in the morning I could not taste or smell.  Colin joked I had COVID though it’s not a joke COVID is it,  but I was not alarmed as I have done all in my power to stay safe and a cold DOES stop sense of taste and smell.  Three days later all ok and just a runny nose now and hopefully my immune system is working to fight the baddies now. 

Pushing back the heart rate 

Since I had my ferrinject infusion I have been able to once again take up walking, a passion of mine.  I hate it when I can’t get out and about walking along the tow paths of the canal or the river.    Because of my chips inserted into my body monitoring just about everything I do for a study I have been so pleased but also shocked as to how much benefit I see after a walk.  It wasn’t so long ago that my heart rate seemed to be in either fat burn zone or so often cardio even when doing nothing.  I was told how important it was to try to exercise five times a week.  When checking all my stats I see my heart rate has dropped thank goodness and mostly my heart rate shows a lot of more normal readings, and quite a lot of fat burn zone but very little cardio,  I know we need cardio too but I was scared when mine was in it just heading to the loo.  Now it goes into it when I am walking up a hill.  Yes I do hills again!  I won’t kid you that they are enormous ones cos they are not but before we would not go where I would have to walk up one, now I actually like to push myself so I can read my stats afterwards.  The power of walking!  As my doctor said it is like another medicine for us with ph.  So I pack a couple of small oranges and a few almonds and off I go. This  morning my Fitbit did not show my heart beat went above normal at all in my sleep when it always used to, it just stayed in the green so I am pleased.  

I have been watching a baby cormorant on the river.  When we first saw it it truly was a butter ball round squat and fat so it actually looked like a penguin sitting in a branch.  We saw it’s mother taking off after feeding it and we have not seen her again but we have seen a change in her baby.  Instead of  the butterball we now see a sleek bird developing daily, how quickly it changes from day to day.  A couple of times we did not see it and thought it had flown away to pastures new but no ..... going the following day it would be back just sitting on its own perch in the middle of the river.  I guess it won’t be long before it leaves us but it has been lovely to feel the anticipation walking along the river of wondering if it would still be there. 

Dogs!!!

Now before you dog owners switch off please read what I have to say.  I am allergic to dogs but appreciate the love that people have for them.  My daughter had a beautiful dog but I could not be around him without my chest tightening up.  Walking on the tow path of the canals and the river I come across many dogs and smile at them as they walk by.  I have admired them and tell their owners what beautiful dogs they have and I mean it.  Most people are respectful of others walking too and if their dog is boisterous they keep them on a lead, most do not need to.  Yesterday was not a good day for me walking due to an irresponsible dog owner.  Walking on the riverside I saw two women walking towards me with a big black dog walking in front of them.  They were too busy talking to each other to bother with the dog.  Seeing me he ran towards me and was jumping up and down on me.  I was scared as I had been bitten by a dog before.  I stood still and shouted NO NO NO but the dog ignored my calls and carried on.  I could have been pushed over very easily. The two women walking did not even try to stop the dog, did not call it back at all.  One just told me if I did not like dogs I should stay away from canals and river beds. I was flabbergasted and said actually I am a human being and this is exactly where I need to walk.  She would have had me walk on the roads and breath in all the pollution from the cars.  I was so upset by this encounter and cut my walk short.  Today walking my same route I actually carried a stick with me in the hope that if they were walking with their dog and saw me they might actually decide to bother with the dog and call it back thinking I might hit the dog with the stick,  The stick was actually for them!!!  I know of people’s love of their animals but this does not mean they should be allowed to harm anybody. Sadly I did not see them but I was prepared to show them the stick and tell them that I had done research and that if I felt threatened  by a dog  I could defend myself.  I doubt I could have done it but it may have made them more wary and they might take more notice of their dog when outside.  As Colin said it is not the dogs at fault but irresponsible dog owners who seem to think that as they love their dogs and are happy to have muddy paws all over their coats and faces licked by the same mouth that had just licked it’s own bum we all feel the same.  Well I don’t.  I feel sure that most dog lovers on here are responsible when out with their dogs,  sadly not everyone is.  

Stepping out

I have been doing pretty well doing anything from 15000 steps up to 20000 steps a day.  I am so chuffed and when my P. A.I  part of my fitness plan tells me I have done well and rest for two days as I deserve it I am ready to do it!  Sometimes  it is hard getting going but I think of the benefits and just go for it.  It makes it easier to do it as I am out anyway getting Izzy to school so the battle is halfway done, getting up and dressed and out by 8.30. 

Loss of a friend. 

Sadly we lost a friend recently.  She was the one who comforted me in Spain when I was given my diagnosis.  It was hard not being able to go and visit when she was near the end and I do know friends that ignored the rules and did.  I can’t say I blame them but knowing that this particular friend saw quite a lot of people towards the end it was just too risky for me to go and anyway we have abided by the rules for so long and so been protected we just could not risk it.  I feel bad for her though that the last year of her life was one living under such restrictions.  So very sad.  Towards the end she was in such pain and the end came when the carers turned her and broke her leg,  I think it was full of bone cancer.  Throughout this Covid we will likely all have lost somebody and she is the first and the last I will mention but I am very upset I could not give her the comfort she gave me except for on the phone.  May she rest in peace. 

Back to the garden

A friend bought us new plants for our garden so in the next day or two I will go out and plant them ready for a nice display later in the year.  Colin is going to dig over the veg patches though I have asked him not to dig in any fresh compost yet as we are not ready for planting veg out this year so early.  I am not even sure what veg I want to plant. The beans were too prolific last year, we ate them at every meal and the veg that is a cross between cauliflower and broccoli  ( romenesco) just took over we were giving it away to everybody.  I think we will do different ones this year.  We did add another apple tree and a conference pear tree last year so it will be interesting to see how well they do this year.  The garden kept us sane last year throughout lockdown but we need to take care once we are out of it that the garden does not take over our lives, we have a life outside of these walls and gardens and at last we can join it.  I will still enjoy watching things grow though and seeing how wonderful nature is.  Our crocuses are blooming in the garden and the tulips growing nicely.  This does mean though that there will be lots of lawn to be cut!  Ah well we can’t have it all to easy.  

Boring jobs

Today I was exhausted after my walk so after a simple meal of avocado prawns and salad was an easy and not taxing lunch. I decided to rest on the bed.  It didn’t take long before I was bored so I decided to pull the drawers out of beside cabinets and sort everything out.  After that it was onto my medicines, there are so many in so many different boxes so I checked everything and put in a pile anything that I was not able to take.  Our meds do change often with pah and sometimes some need to be returned to the chemist.   On then to our cutlery drawer which is a huge one and I took everything out to clean it and put it back.  There was hardly any need as only saw two crumbs but I know it is all done and disinfected now.  Colin then rang to say he had a flat tyre and was taking it to Kwik fit to get a speedy repair as Izzy needed collecting from school.  Thank goodness I was not driving it when it happened.  I hate anything to do with cars except for driving them.  

Izzy 

She has got another rabbit.  Sadly one died last year leaving Bluebell on her own.  Rabbits are social creatures so they just bought another one they have named Copper.  It is a harlequin rabbit and quite cute,  So far though they cannot be put together as the big rabbit would quite likely kill the small one judging by what we see when they try.  Hopefully in time they will blend together.  We shall see.  

She told me that they lost their internet for three hours yesterday and her parents were trying to sort it out so she did all the housework!  When she told me what she had done I was flabbergasted as it was so much, we reckon if we asked her mom it would not be quite the same tale!  Izzy tends to exaggerate somewhat. 

Watching

Escape to the chateau.  What an amazing series.  To see two people turn around this huge chateau that was derelict has been a joy to see,  In fact it was watching this series that prompted me to buy wallpaper with birds on as the french had on their chateau walls.  So pretty.  Gradually they did manage to get some jobs done by some tradesmen but oh my goodness the work. It makes us tired to just see all they have done and still have to do.  They have made a truly marvellous job of it.  Now run as an events venue a friend of ours got married here and said it was absolutely magnificent.  

Holiday

No not for us yet as such.  Certainly no going abroad but we do look forward to heading off in the motor home as we can be totally on our own.  We don’t need to use facilities or eat out if we are nervous. Danielle and Chris are looking to hire a motor home for two weeks and are happy for us to join them.  We won’t get in their hair but it will be nice to see them from time to time.  Let’s hope we can manage to get two bookings together later in the year. 

Right, time for bed.  Walking and cleaning day tomorrow so need my beauty sleep for sure,  Hopefully we will soon be able to have our cleaner back and what a red letter day that will be.  Take care everyone and thank you for reading.

Warm love

Carole xxx

Walk finished and I did 20000 steps which is 8.34 miles or 13.45 kilometres. So thrilled.

( since writing this and not being published I did manage to do some gardening and also plant out 20 new ones.  Left me totally drained with only 5300 steps as not a walking day.  Don’t think digging and bending over are good for me at all.  

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 

I’M STILL STANDING

My hospital visit 

My health had been suffering the last few weeks and I was hoping this was just a ph blip, it happens.  I noticed a change when we had snow a couple or three weeks ago.  

A walk around the reservoir with Colin and Izzy to make a snowman was so hard.  My feet were so difficult to lift and my breathing was very laboured. I thought it was the cold despite my wearing a mask and carried on.  Snowman built and pictures taken I was more than happy to get back to the car.  Izzy and granddad were very pleased to have built the snowman and many pics were taken. Who knows when we will get snow again. This was the last time I have done anything significant  due to my deteriorating condition. I kept expecting to wake to a better day but it was not to be as the following paragraph will explain why.  

We were surprised last week on going into the bedroom to see my heart monitor flashing like mad.  This meant that something had been flagged up in Sheffield on their monitors and they needed me to give myself an ECG!  This is very simple to do due to my having the chip in my chest.  The ECG seemed to go for a long time and just as I was beginning to think it was a blip in the machine when I got the  tick on the screen which showed it was done and all data was being downloaded and sending off to the correct person to read these results.  Both Colin and I knew this meant something was going on apart from the regular palpitations I often have - it was a first for me in two years, not the normal one of just a brief touch to my chip and the reassuring blip the data had been sent.  Thank goodness for this chip and the ease of taking and relaying results to my specialist.  We heard nothing more about it then but I was in touch with my hospital due to having water retention around my trunk and wrists and thighs.  On top of that my breathing was dreadful (still is) which meant I could not walk far and standing up to brush my teeth sent my heart rate up to 127 bpm which I knew was not a good sign.  An appointment was made for me to attend a clinic on Friday in Sheffield and we were both relieved as we hoped to find some answers.  

There were just three of us in the clinic though all the beds on the wards were full.  More or less as soon as I sat down I was greeted by the lovely medics Jen and Alex.  They asked what had been happening and then I was informed that my ecg had shown “ two unusual things” on it and they were going to see if a heart specialist could put any light onto it.  They did ask if I had noticed anything different and all i could say was the vein in the right side of my neck was more jumpy than usual.  I had had a few pains in my chest but generally I try to dismiss them as muscular spasms!  I was also told that the pressures had risen in my lung, - again thank goodness for the chip in my pulmonary artery which pulled this up.  These chips have to be the way of the future.  Of course whilst they cannot stop deteriorating conditions they may catch a problem before it gets too far.  

It was clear to them that I was struggling trying to breath.  They did note from my Fitbit results -  which they can see at any time through the powers of computers - that my pressures were rising when I was NOT walking but the problem was I just felt too poorly to walk!  Catch 22 for sure.  So yes, I know the huge importance of exercise which for me is a good walk helps our pressures but with breathing difficulties it is very hard to walk. 

Jen and Alex left after virtual hugs all round and another ECG was done on the ward.  I wish I had remembered to ask the doctor I saw later if that too showed unusual data but I forgot, Colin would have remembered but as he was not allowed in this was a question that did not get addressed.  I also did my walk test but not for long as my legs began to wobble.  The results later showed no rise or fall in blood pressure or in my oxygen levels where normally oxygen might drop to 72 percent,  I was not surprised as I had put no effort into this walk as I just felt too breathless to be dealing with it right then and only did a few steps. Time then for my consultation with my doctor. 

I had only met this particular doctor once when admitted in July so though he was very nice we did not have the rapport that grows over the years with my regular specialists.  He was very polite though and told me what I already knew - that I was monitored on just about everything remotely which was a great thing but obviously the machines cannot let them know how I am feeling, We discussed my breathing issues and I asked if I could be low on ferinject.  He said he was wondering that himself as my body is clearly struggling to get oxygenated blood around my body and it could be the result of low ferinject that coats my red blood cells to hopefully help move the blood flow.  More blood tests are scheduled and an overnight stay sometime in the new year to monitor me is on the cards.  He sorted out the infusion and after I had it I was allowed to go home with no real answers but things ongoing for me.  These ferinject infusions can take up to three weeks to show any signs of improvement due to our red blood cells only being replaced one percent per day. Still we remain hopeful. Right now I may be down but I am NOT out and will continue in my belief that I will improve, that my doctors will find a way to help me, I simply will not allow myself to give in. 

Oh and I STILL have water retention despite being at a very low weight so goodness knows quite what I will weigh if eventually we do manage to get rid of it all. I dread to think.  He did ask about my appetite and I said that whilst it is ok I don’t always manage to finish a meal due to total fatigue and breathlessness. 

This morning I made homemade broccoli and blue cheese soup as very easy to get down and enough calories to help my weight rather than the salads and fruit I so love for lunch.   Might be bad for me but if I need to try to stop my weight loss some things must change,  

COVID

I have been watching the news reports about Christmas and the changes that have been made due to the latest rises in the numbers of cases and the new strain of the virus that has materialised.  My heart goes out to those that had planned lovely days with family after the heartache of the last eight months.  Quite how it will work I do not know, they can’t knock on the door of all householders to make sure no breach of the rules,  We are not seeing anyone as I said before except for a brief drink under my families gazebo next door, then home to an easy but delightful meal for us of halibut steaks with small potatoes, loads of veg and a sauce of anchovies and capers etc.  I do not have a huge appetite and quite frankly looking at all the food eaten on Christmas Day actually curbs my appetite even more so we are really looking forward to our lovely simple meal - then a little time with the family in the open air wearing masks and back to maybe watch a movie or two.  

We are currently watching "The Long Way Up" featuring Ewan McGregor and Charley Boorman riding electric Harley Davison motorbikes from Tierra del Fuego at the bottom of South America up to Los Angeles, a ride in excess of 13000 miles, so if we are not caught up by then we shall finish seeing them complete their challenge,  This is a very enjoyable thing to watch in front of a roaring fire and the weather can do whatever it likes, we shall be very cosy,  

(Gosh just watching the rules for the Christmas period will be a nightmare for many.  I am not sure if my hairdresser will still be allowed to stay open now or not,  I have an appointment booked for first thing on the 22nd December and I really need this mop of mine cutting. )

My heart is breaking for families affected by these new changes and I just wish we could get this virus under control.  If all followed the rules who knows, maybe we could have curbed it but sadly we see so many who take a great delight in doing whatever they wish and not bothering to wear masks, no social distancing etc.  It makes my blood boil to see these protests going on etc. about their human rights, what about the rights of the ones they may so easily pass on the virus!  We MUST work together to beat this. We have followed the rules even to the extent of not even driving up my friends drive to deliver a cake!  Problem solved as she can drive up our road and take said cake from a wall outside   Food bought in, plans made and then all to be dashed for so many   I understand the reasoning behind these rules but it does not stop me from feeling for loving families so looking forward to these few days snatched away.  How can a loving parent choose between which family to share the day with, son and his wife and kids or daughter and her family etc, which set of grandparents!  Nightmare.  We personally will be fine but heartbreaking for many others. 

Well I must leave this here and get this blog out as there are many lovely people asking what went on yesterday.  So much easier and more detail to do it this way.  

Please have as good a holiday as you can and think about those who have lost loved ones.  The chairs around the table will be empty of many this year due to deaths or the recent restrictions.  We need to think about them and if somebody you know is affected maybe a phone call might go down well so they won’t feel so alone.  Such a sad time instead of a merry one.

Please take care.

Warm love to all.

Carole xxx

Count Your Blessings

Do you ever look at your partner, wife hubby etc and REALLY see them.  So often life takes over and we take for granted our life and how it has panned out but SOMETIMES I feel sure you must do what I do and really take a look at what you have to be thankful for.  We are blessed that we have had Colin in our lives for 23 years.  He took on me and my two kids and he has been a rock, the glue that keeps everything together, he keeps all the saucers spinning at once. Unlike me he is steady and gentle while I am or was the fiery one.  I jump without thinking things through where he weighs up all the options and ALWAYS comes up with the correct solution.  I never thought I would be the one that needed caring for but then again who does.  He has taken it all on the chin and supported not only me in my fight but my family too.  I just hope the rock does not crack but I don’t think it will somehow.  I certainly was fortunate one when we met.  Yes we have had sticky patches but pulled through it together.  I am just feeling very blessed this evening. 

Here we go again in lockdown wondering how to fill our days.  Day five of lockdown and today I feel pretty good,  After a few bad days I am contemplating going out for a walk.  I have prepared a chilli beef lasagne (very hot) with a sour cream and cheese topping,  a salad to take away some of the heat and an everyday fruit cake.  Clearly I needed to stand for quite some time to prep for these and I still feel not too bad.  Why is this - one day we can and one day we can’t.  It’s no surprise really that those without ph think we are putting it on.  I can assure you all that we are not.  We would like nothing more than to go to sleep expecting a decent day to carry out our plans but this is just not in our remit.  We cannot make plans so we must grab each opportunity to do what we can on our decent days.  One day we will have a cure but not sure how much of my lungs will still be usable by then! 

Present from Colin - a cushion with a cut out for my coccyx!  Very welcome.  This means I can now sit down and be more comfortable than before.  My poor coccyx would scream in pain if I sat down for more than a few minutes but I feel much better now.  Now I do not have to spend so much time lying down on the bed unless of course ph forces it.   I never thought I would be so delighted to have a cushion for a gift but my oh my I really am.  So until I get some fat on my body I can now join Colin in the lounge at night and not be a “  Billy no mates “   in my bedroom.  

I read that the government is now sending the extremely vulnerable ones four months supply of vitamin d as there is a belief that it helps our systems maybe build a resistance against COVID.  I think most of us already take VIT D, VIT C and magnesium so maybe that is why those  that do catch COVID seem to do OK.  It is already in their bodies.  I have asked my family to please take Vit D, my daughter is asthmatic and works with the public every day.  My son in law works every day too with people.  I do get worried for their safety.  My stepson seemed fine when he had a positive test, he just could not smell or taste for a few days and my grandson - though feeling unwell when his dad tested positive -  was told not to take the test.  We do not know if he had it or a cold but all is well and now back to everyday life.  My daughter in law is a teacher so clearly around loads of people. Life must go on.  

As usual Colin keeps very busy. He is putting chicken wire on our steps in the garden.  He made them from the slices of the trees that were taken down here so we could build.  They look really good and rustic but with the leaves now falling like mad they did become slippy.  He has done one set in the side garden and is now working on the ones leading to the bottom garden.  It looks just fine and now I have no fears of slipping.  He has swept the lawn with his trusty besom brush and no leaves now until they next fall! 

He cannot bear to sit still so must always have a project on the go.  In his spare time he is either cycling or playing his organ which he loves. If he can’t get out he is like a caged bear.  I don’t seem to have the patience any more  for projects.  I can tidy a cupboard or a drawer etc when the mood takes me but can’t sit and draw or paint etc.  Whilst I used to spend hours doing my family tree I have forgotten quite how to do it now with my rubbish brain but anyway getting back to 1534 is pretty good I think with a huge possibility of it being 1200 and something. I do not want to extend the range so think I have done enough. 

Despite having a slot at Sainsbury for online shopping it has locked us out!  Now I thought it was me getting something wrong as usual but even Colin can’t get us back in.  We have tried to change the password to see if it helps but so far nothing. My card is an ancient one and I have been trying for years to get a replacement and though they say yes it will be sent out so far nothing has happened. This could  mean that tomorrow instead of our slot we organised last week we now have to go and shop ourselves.  On the plus side I believe the vulnerable do not have to queue now. ( just imagine the comments going to the front of the queue)  I think I will skip that and just manage with my own store cupboard and freezer until and if we get back to being able to get deliveries direct.  If we really do need to shop ourselves at least we will get our choice of things  and not what Sainsbury staff see as a good option.  Sometimes they are really laughable!  

I have been badgering Izzy to empty her money box to count it and see how much she has towards a premium bond. I believe the minimum bond now is £100.  She has around three now and if she does not count out and exchange soon she will miss out on a month of being in the draw.  Not sure if she is anywhere near though.  She has to work for her money and did quite well when she lived here. She would tidy her room, stack dishwasher when it worked, even steam mop the floors, help me get in the bath etc so it was not easy money, it could be tough.   Sometimes she could earn quite a bit but other times there did not seem to be many jobs for her.  Of course now she does not live with us there are no jobs so would prefer to get on with it to see where we are up to.  Anyway it is her money so if she misses an opportunity then so be it.  

My daughter and partner just had a lawn laid yesterday. After months of work their garden looks great.  We well remembered the foxes that ripped up our lawn in the night of the day it had been laid so we were very nervous for them.  We made sure the gate was securely locked etc.  They have high fences to protect their rabbit so all we could do was wait and see and hope. The relief today when we looked and saw all is well with their garden. We knew the foxes had been in ours as their prints were in our veg patch but it looks like their garden is safe.  We are just a thoroughfare for the foxes on their way about their business now our grass is established.  Nothing fun for them to play with now. 

The issues we had in my last blog I will address.  Firstly the car.   The quote was £180 which actually shocked us as well as the person who bumped it and her partner.  We sent them the quote and as it is our choice to have the repair done by this company well established and with full guarantees and kite marked approval etc. we did say we would go half.  So far not heard anything back but we did say nothing could be done for a month so we are not sure if they will pay up or not, we shall see.  

Not heard anything more from AEG.  Though we had decided ourself we did not want one of their discounted machines they could have got back to us and answered our queries. I think they see us as just old codgers.  The girl was very cross when Colin said he felt we were being discriminated against.  That word sets people’s nerves on edge.  We just felt that what difference did it make if we chose and paid for the machine and handed it to the kitchen fitter or the kitchen place bought and fit the machine himself.  Because we did the former it invalidated our guarantee!      We have had no communication with them since then, we are ignored.  So we were surprised to receive one of those surveys about how well did they do.  Colin being very fair told them he had no issues with the repairmen but plenty of issues with after care. They asked him if they could ring to discuss and issues and were told yes.  Not had a word from them.  My guess is they looked back at our complaint and decided not to bother to ring.  Shame on you AEG.  You will never have another penny of our money.  After all this I was told that as we live in an area with extremely soft water we do not even need salt which is what ruined our machine in the first  place.  We have no issues with calc at all here.  I shall remember when we do manage to replace ours.  In the meantime the repair is on Colins list! 

Colonoscopy have sent me a letter to say they are ringing me on August 23 2021 to discuss my procedure!  Yippee, almost another year to go.  Can’t get my head around what will happen if life is still the same with COVID, another  years  delay and worry perhaps  -  we shall see.  Will I even be alive then.  Remember on my last visit to my hospital I was told I should not really be alive  now. We well know this and that my heart has deteriorated even more but I am blessed that the meds do still help as they do not work for all and many lose their lives. If I  am spared and still around will this procedure go ahead or not,  We just have to wait and see. Now please don’t get me wrong here.  I have every sympathy with the NHS dealing with COVID.  It must be shocking but we must get back to some kind of normality dealing with procedures or there will be more deaths, more depression from those concerned about their issues etc.

Going out for a walk now then back for lunch. 🚶🏻‍♂️🚶🏻‍♂️🚶🏻‍♂️🚶🏻‍♂️🚶🏻‍♂️. 

Lunch over, ham salad sandwich.  The walk was so lovely and so easy as my lungs decided to give me a break and work!  When poor Colin got in for his lunch he had been bitten all over his ankles by little flies buzzing around the compost bin.  Generally he is not bothered by mosquitoes etc when we are abroad but these little varmits have certainly done their damage.  Job done now though and tomorrow he will be on to knocking  more jobs off his to do list.

I will just give him another job and ask him to post this blog for me!  Hoping you all keep well.  Stay away from COVID for sure.  

Warm love to all as ever.

Carole xxx

As it happened he did not have time to post this yesterday, he does keep busy.  This morning he was getting ready to go on a long bike ride so I was taking Izzy to school.  I was rushing around trying to do too many things.  I got my meat and onions cooking away ready to bake a pie for dinner and I went to put my pastry in the fridge to relax as you do.  I was busy watching the clock, moving things around in the fridge and planning ahead when wham ......... a whole tub of blueberries hit the floor rolling everywhere.  I was so cross with myself.  The drying up still needed to be done from breakfast and everywhere I looked I saw blueberries.  I knew I had no chance of picking them up and getting Izzy to school.  Colin walked into the kitchen and saw the chaos and told me to just go, he would sort it, what a diamond.  

Took Izzy to school and I decided to park the car on the canal and take a walk.  I walked for five miles which was good and had the pleasant surprise of meeting my brother on the canal walking his dog.  I have not seen him for almost a year so it was a lovely surprise and I was shocked to see how like my dad he has become.  Odd that I did not see it before. A very good looking guy indeed.  He was able to let me know about one of my other brothers fighting cancer.  I was so scared they would have stopped treatment through all of this mess but thankfully not.  He says my brother is doing ok so I pray that he knocks this cancer for a six.  I was able to tell Stephen, the brother I just saw on the canal to buy VIT D and he assured me he would.  Now I am home and am having a rest before I do anything else.  I think I deserve it.  

Oh and just received my FOURTH notification that I am extremely vulnerable and what I must do.  How much money does it cost to send all these out and what FOUR whilst I know some have not received theirs at all yet. 

I will end this blog as I began it.  There are so many issues in the world, illnesses within us or our families, politics going wild, viruses worldwide etc but let’s just stop for ONE minute and count our blessings.   I think we will be surprised that in a world seemingly gone mad we still have much to be thankful for. 

Carole xxx

Covid Strikes Again

Here we go again

Once more my colonoscopy has been delayed,  I was expecting a call for my pre op this morning and sure enough the said call arrived,  The conversation did not go the way I expected it though, in fact far from it.  With a cheery voice the lady on the other end on the phone said “ I was going to ring you about your pre op but yippee you don’t need one”. When I asked why I was told my colonoscopy had been cancelled now for the fourth time!  Another year to wait.  Now I know they are not the most pleasant of procedures but I am used to them, take no sedation and am quite an easy patient. Well another year of worry ahead for me.  Let’s just hope that they do not cancel this one in a years time,  In the meantime I pray that I do not end up with cancer as a casualty of COVID and all restrictions on procedures.  There was a reason I was told I must have one yearly so why it has changed is beyond me.  Next year let’s hope there are no repercussions from this.  

Soft grandad 

Izzy had a scooter here from when she was about four years old,  She is now ten and she has had her big scooter for years now too,  So many times we have looked at her baby scooter and so many times wanted to take it to a charity shop,  Each time we suggest it we are told emphatically by Izzy “ NO, I love my scooter, “ so there it sits in the garage, taking up precious space close to my mobility scooter,  On a tip run today Colin said he had put the scooter in the car and would place it where others can forage at the tip and take if they so wish.  Job done I assumed until he came home a few minutes ago.  When I asked if the scooter was gone I was shocked to be told no,  Puzzled I asked why and was told that he picked it up out of the boot but just could not bear to see it go himself!  He has decided to make some sort of feature of it in our garden, quite what I have no idea but what a soft grandad he is,  He said he could not stand to see her face when she realised it had gone plus the many memories of her scooting on it.  Let’s hope this is not a pattern and we end up with numerous bikes, scooters etc.  It would be different if it was a dolls house.  We could add to it and make it a miniature village with all her LOL dolls living in it!  

Grassington

Yes our holiday break as a family came off and it was a huge success for most, sadly not for me as I was clearly not well in myself and just wanted to be home.  So with a heavy heart on day three of the break, first thing in the morning I headed home leaving the family to continue on enjoying their time.  Colin took them all to Linton Falls, and to climb and crawl through a cave.  Social distancing went well even in the caves as they were well set up for it.  No way could I have coped with either days activities and though our motor home is so cosy to me it made sense to get home whilst my blood pressure was not too bad rather than wait and it may then be way too low to risk driving,  I was only home alone three days when it was the end of their break away.  All had a great time and can’t wait to do it again,  Of course now COVID lockdown is here again so I doubt anything will happen until next year for away days.  

I could scream

Our dishwasher broke, not quite two years old.  Repair man came out and said we needed a new salt container and another repair man would fit it.  The other repair guy however said we needed a new machine as there were three pin prick holes where salt had corroded and water managed to find its way into the motor,  We were shocked but we were covered as the warranty said it was covered from two years of the machine being fitted into a new house, we had bought this specifically for this house and our builder confirmed the date we moved in, we proved this also with rates bills.  So we were shocked to receive a letter from AEG telling us they were sorry our machine had broken down after two years, actually just less and they would offer us a new machine at a discounted price.  When we asked why they were not abiding by their terms and conditions all went quiet,  A further few e mails and calls and we were told that as we had bought the machine ourselves and handed it to the kitchen fitter rather than the fitter buying it we were only covered for twelve months!  Disgusted we decided they could keep their discounted new machine, I didn’t rate it anyway and we decided to search for another one,  This is actually easier said than done as the one we really liked and we know from talking to our family next door that it is rated very highly by them as they have it , plus it has A+++ rating is out of stock anywhere in the vicinity to us and we cannot have it.  This will be due to COVID and the factories having been closed for so long,  Ever resourceful Colin has a plan.  Rather than buy one we don’t want now we will push ours on until the one we really want comes back into stock.  An order has been placed for some kind of specialist putty used in circumstances such as these and he will repair the two pin prick holes in the hope it sees us through until our new one can be sourced.  This specialist putty has been recommended by others suffering the same issue with the salt corroding the metal.  For sure when we buy our new one I shall follow my son in laws advice and buy my salt from Lidl as is comes in balls rather than granules so no chance of leaving a grain or two behind after filling the salt pot to corrode the metal. 

Yikes - somebody bumped our new car!  

Yesterday driving to collect something Colin pulled up at the traffic lights only for the car behind to keep going, right into the back of our lovely new car.  For a second I was not sure it was a bump, our car stops automatically if we get too close to anyone or anything and if somebody walks in front or behind it too closely- a great safety measure.  I thought this was what had happened but no, it seemed the lady behind us sped up thinking we were going to go through the lights.  She was so devastated and shook up we asked her to calm down, not to worry as it is only a piece of metal and it could be sorted.  It turns out I used to be in productions with the said lady at the Thespians Theatre.   Bless her she was hurrying to work.  It is just another thing to deal with and I pray we can sort it without using insurance as she really does not wish to go down that route. Could do without this right now but it will get sorted. So our car now needs to be looked at by two or three people for quotes.  What a time for this to happen. Still I have no doubt it can all be settled amicably ASAP. 

Pah

I just seem to lurch from one issue to another.  I will hopefully get my weight sorted out shortly with the drinks they can provide so I stop losing weight but in order to supply these I needed a blood test.  Due to my blood pressure dropping way too low we are also hoping to lower my ph medicines, For either of these things or happen  I first needed a blood tests.  One for a renal function test which should have been done three weeks ago.  The blood lady came to do it  with a blood for for a liver function test,  I told her it was a renal function one needed and her retort was “they are the same thing”. Now I was pretty sure liver and renal are not the same but decided she must know more than me.  Said test done and sent off I waited until I got the results, which were normal and informed my PH A Team.  Of course it was NOT what they needed so I have had to have my renal test done.  Now awaiting results so we can sort out my meds.  

A talk with Alex, part of my A Team

Due to issues as already mentioned I had a long talk with Alex today,  He told me to come off the spiroconlactose that just does not help me at all.  My muscles scream and my hands are clubbing.  It is awful for me.  So tomorrow I will not take that med again.  Then once results of renal test come back he hopes to slightly reduce my 100 x 3 times daily of viagara to see if that helps my blood pressure, oh I do hope so. So much to discuss.  He is ringing Colin towards the end of the week to discuss with him too. 

One thing that we have heard of before  and is very interesting is that he has known two patients with ph that got Covid and did very well.  He is convinced that because we take the meds and our lungs are already compromised the Covid does not seem to hit us the same way as with others.  We already struggle to breath so maybe too a layman it will be like being slammed with ph for a while, very scary all in one shot.  Who knows but it was intriguing anyway. 

My beautiful walk

Two days ago I felt well enough to go for a walk.  It was spitting with rain but I was snug in all my winter gear.  I walked on the canal listening to music through my headphones and walked back on the banks of the river.  How happy was I was to still be here ten years after diagnosis and able to enjoy such simple pleasures as walking in the rain in the beautiful country side. 

Once again I owe so much to my A Team and this is the time to raise awareness for ph,  I pray nobody you know ever gets it but if you are aware there is such a disease if you know somebody suffering with asthma that NEVER feels better even with the sprays or shortness of breath, or ohhhhhh too many things to list just check out pah.  Of course this does not apply to my ph friends who read this as of course they know all there is to know about their own form of this disease.  So this week is where we make it clear to all we know that WE ARE AWARE THAT WE ARE RARE.  I wish it was not so but there it is  Once again  I AM AWARE THAT I AM RARE.  For anyone wishing to feel for just a short time how we feel ALL the time try out this for size.  Pit a straw in your mouth.  Without letting it drop and breathing through the straw go about your daily business.  It won’t be long I can assure you that you spit out the straw,  Oh how I wish we could expand our lungs so easily.  So remember there are many hidden diseases and have patience, kindness and understanding for those that are suffering one of them.  

Last visit hopefully 

This is to my sons apartment to fit new blinds for the student renting it out for twelve months,  I needed to have new ones measured and made.  They have arrived and look well so tomorrow will be fitting day and hopefully we will be free of doing all the jobs we have had to do to ensure it looked it’s very best. 

The lady that bumped our car yesterday has arrived with a guy to take a look at the damage.  We do need to give her a chance but I feel that we will end up taking it to the proper repair shop for our car.  We do not want it to be visible and it needs to be repaired and look as new again.   I won’t tell you what her hubby ( partner ) said ( swearing) when he saw the damage as it is not bad at all but nevertheless it is damaged and we want it looking right.  I hope we do not have any issues with this.  We just don’t need it. 

I will go and see what is being said then get on with dinner.  A  cottage pie with loads of veg today.  We need it in this weather.  

Take care, keep well and warm love to you all. 

Carole xx