Monday, 3 June 2019


Actually managing busy times

Colin had wanted to go and see Kathryn Jenkins at the Barbican in York for a while so though reluctantly (not generally too keen ) I went with him.  We stayed in a hotel at Gillygate, just a short stroll to the Barbican and also to the centre of York.  The weather was kind to us so we left home early determined to stop at the shopping mall on the way in.  I did not buy too much but as we have two holidays coming up I knew I wanted to refresh my wardrobe.  My purse being a bit lighter after this stop we went to have a very pleasant lunch and then onward to the Gillygate and our room.  Once we were settled in we headed for a stroll around York.  Fortunately for me it was a good day considering I have ph and managed it all quite well.  The weather was really lovely and I was enjoying just being alive.  It still surprises me from time to time that I am still here to see and do so much.

The concert I was not looking forward to turned out to be truly fabulous.  For me the highlight was not Kathryn Jenkins, though she was very good and also very glamorous in her very posh frocks.  No it was the Manchester Concert Orchestra that I found truly mind blowing.  The way they all worked together to produce the most incredible music I had heard in a long time was just something else.  No wonder when they all played it almost brought the house down.  

Kathryn turned out to be a very nice, very friendly and very funny young lady.  She talked about her two children and appeared to be a real home body despite having to travel worldwide to deliver her concerts.  Half way through the show she said she wanted to have some fun.. She asked if we would write down any questions to her, even rude ones and she would do her best to answer them after the break.  I wanted Colin to ask her if, as happens often with young groupies where the young girls throw their underwear onto the stage she would be open to having Colin's Calvin Kleins thrown at her. He declined to allow me to put it to her but there were some very saucy questions.  After each question she answered she blew a kiss to the one who wrote it.  I think maybe Colin might have wished he had sent her the question just for the kiss.  He can be a right party pooper can my husband.  

We returned back to our hotel very tired but very happy too.  The following morning we headed back to the centre of York to a fabulous music shop that sells every musical piece of equipment one can imagine,  He bought sone music for his own piano and some cards to help Izzy along with remembering quickly all the notes just by playing fun games.  By this time I was truly shattered and so it was time to head home.   Though we had only been away overnight we had crammed so much into our time that it felt to be a lot longer.  I know we keep promising ourselves more time out but the garden preparation does take a lot out of our spare time and we so want it finished this year.  

My A Team

Well those of you know with pah how our levels in our lungs, or pressures can go up and down in an instant.  Because of this it does dictate how we get on throughout the day.  Pressures up, exercise and tolerance to doing hardly anything is zero.  Then mere thought of getting out and about is too much out of our spectrum when we are at this stage.  Once the pressures drop however life can be so different.  Due to my being on the cardiomems machine I know how pressures change and the extremes of it.   So I was rather concerned as I was not doing much in the way of walking as far as I would have liked, but hey that is the nature of the beast.  Right now though there is a turn around.  I woke up last week feeling really well.  The time was 5.10 in the morning and I wanted to get up and begin the day and so I did. Leaving Colin asleep I got up and went out to collect snails from the garden, they love our foliage and come out in huge numbers, though I am getting these down as I collect them daily and dispose of them. I had plenty of plants that needed to be planted.  Colin does the big ones and I manage the small ones as they do not require too much effort to get them into the ground.  

I so enjoyed being up and out so early. Once Colin surfaced we decided to lay down the membrane for the beds ready for when we lay the bark on top. This took more time than we had thought it would but fortunately my ph stayed  good and  think I was a great asset to getting the job finished.  We now have four beds completed and they do look good if I say so myself. Steps need to be laid now to go from the lower lawn to the top and then we can lay the top soil ready for the turf.  I can't wait to see the lawn down.

Anyway once finished we had promised to see if I could manage a walk.  I always prefer to walk rather than the mobility scooter but sometimes I do not have much option.  Anyway legs it was and we went to a moor about one and a half miles from us.  Our house looks over it.  The weather was fine and the moor was glorious.  Full of bilberry bushes, far superior to any blueberry in my eye we were saying how we would get all the family together to pick them later in the year.  I felt on top of the world and so very grateful to my A Team that I was able to see the moors, walk them and enjoy such precious times with my husband and family.  Filled with emotion I wrote a quick message to one of my specialists thanking them all that I was able to do this almost nine years on from my terrible diagnosis.  I sent a pic of me on Norland Moor too.  I was feeling jubilant and so very very grateful to all who had worked so hard for myself and all the others inflicted with this deadly disease.  We owe so many so much.  He responded saying I was doing all the hard work but really we know this is not true. Without the dedication of all from researchers, all the way through to us getting our meds I would have been dead and gone years ago. I am so very fortunate to have pah now and not fifteen years ago when the outcome may have been so very different. Well no may about it, I know my pulmonary artery was ready to sever so I did not have long left.  Yes I am certainly grateful to all who have anything to do with ph.  What really surprised me though was that Alex then read my pressures from the CardioMEMS that morning. He wrote to tell me that my pressures had been at a staggeringly low 28 that day. True never before or since as the following day it quickly went back up but so fascinating to get such an insight into our pressures like this. It makes us realise just how quickly we change. 


School holidays are here again for two weeks.  Of course we have Izzy but Colin also takes her away in the motor home for a few days too.  This gives me time to see my friends and do my own thing.  This year he is taking her to Flamingo Land.  I used to take mine here when they were small.  I know she has never been so feel sure she will just love it.  Izzy makes me smile as she asks me every day if I am having a fat day or a thin one.  Now I never have really thin ones, I weigh just over nine stone so thin I am not but what she means by this is this.  If my pressures are up in my lungs then generally, though not always I have more water retention so hence it is a fat day as my belly needs to get rid of all this.  My kidneys are sluggish due to lack of oxygen so everything is slower to work.   Now on a thin day my pressures are lower so my water retention is not too bad.  So this is just how she understands how much I can deal with from day to day.

This however I feel has caused a strain on some of our neighbours who live close by.  Izzy and their children played well, running from garden to garden without a care in the world.  We had no issue with them coming in and out of our house to collect games etc as long as their parents approved.   All went well until one morning when I was talking to Colin just as the neighbour was passing on the road.  I remarked that at least I was not fat, meaning it meant I could get on with the jobs that needed to be done.  Now as soon as I said it I knew what I had done  Though I had never talked to this particular lady,- she always seemed reluctant to engage in any talk - I knew she must have thought I was making reference to her! I would never make remarks such as his , never make a personal remark at all but I just knew........  What could I do.  I could not run after her and explain my remark, I just had to let it stay. However not so long after the children were no longer allowed in our garden and indeed not even allowed to play with Izzy.  I was so gutted as they are lovely children, well mannered and nice to talk to.  Izzy enjoyed so much having friends to play with and all was gone by one throw away remark not meant for her at all. This week has been the beginning of a thaw where one of the children can go into Izzy's garden to play.  I hope this continues. My guilt is still huge.  

Javea again

So we booked another holliday in Javea for later in the year.  This time one of our friends, actually the one who introduced us is coming with us.  He spent many holidays in Javea when we lived  there and had missed it so much we decided to see if he wanted to join us.  Well there was no need to think he would take some persuading, he didn't at all and now is counting the days until we go. We are heading back to the same apartment we rented last time we went as it was so perfectly placed. I know we will still go up to see the Villa we had built as we have friends live close by and walk in the woods again down to the golf course. Already so many plans I just hope nothing happens to spoil them. As my consultant said take as many holidays as you can, make as many memories as you are able and so we intend to do just that. 

And another .....

We did another walk, this time at Midgley and boy what a lovely time we had.  The history of this moor fascinated me and the names,  Churnmilk Joan, Millers Grave etc were all too tempting to leave alone.     The milkmaid was reputed to have frozen to death on the moor so the huge stone was placed there in memory of her. Walkers throw coins onto the top of the 7 foot stone, no idea why but it seems to be done by many.   The Millers Grave is reputed to be the grave of a miller who committed suicide and the church would not allow his body to lay in their cemetery so he was laid to rest on the moors.  Not sure as to the accuracy of these tales but if you are interested then google Midgley Moor where there are a lot of interesting facts and info.  There are shooting butts to walk around,  not sure if they are still used come the glorious 12th August plus huge monoliths to discover.  Plenty of cairns are to be seen and I always add my stone to each one as I pass.  

The weather is a perfect drying day so I am gong to go and hang out the washing.  I don't know why i get so much satisfaction out of such a small task but there it is.  After that we need to go shopping so that the intrepid travellers have all that they need.  Izzy is beyond excited and is happy to do any chore we give her so anxious is she to get them all done so the motor hoe can be packed up and ready to go.  

Whilst they are away I will spend a day with my son and explain to him how to use a carpet cleaner U am taking over.  He will do the hard work and I will do the explaining.  Then hopefully we shall go out and have a little lunch together.  It is always nice to catch up with him and spend some quality time.  

I also need to make up Izzy a goody bag today.  She always takes one with her.  With tiny surprises in it this is a big part of her going away.  It might just be a piece of fruit and a drink plus a few craft things to enjoy doing once they are ensconced.  I do not spend much but the pleasure is in the anticipation.  

Right I must love you and leave you all.  Izzy is playing the piano, rather well I must say as I type this.  She has come on so well with her tuition at school and with her granddad helping her when she gets over to ours.  She does do some practicing on her own piano too with her mom.  Maybe we might have a famous pianist on our hands in he future - LOL .

Take care all of you, sorry this blog was so long in the making but I will try to do better.  

Ahh I think I hear something outside.  With any luck it may be our bark being delivered.  

Love to all.

Carole xxxxx

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