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