Tuesday, 10 October 2017

From "One Bloody Mess" to "One Muddy Mess'

Well it has been a busy week here with one thing and another.  First of all we have had Izzy spending her days with us as she had a bout of croup.  Silly me did not realise we can catch it so blithely said "of course" when asked if she could come here instead of school.  It was only when it was too late to bother that we discovered that of course we can catch it too.  As the days have passed it seems I have been spared fortunately as I do not think I would have fared well had I come down with this just after my chest infection.  Izzy is well now and back at school, suffering no long term worries after this horrendous illness and I am happy to report neither of us came down with this so all is well.  

As I wrote in a post I have had not one really bad nose bleeds but two, both resulting in the bed having to be stripped right down to the mattress.  How lovely it was then to receive a private message from a ph brother who suggested that I always kept some Tampax ready for such an emergency.  Of course, why didn't I think of this as before whilst in hospital I did have a similar thing inserted in my nose to stop such a bad bleed.  These items are  in fact even handed out to soldiers to use in times of being shot as they will plug a hole to a degree.  Thank you Joseph, I have now added some to my bedside drawer.  Though they can't stop a nose bleed they can save our bedroom looking as if carnage has occurred.

Here is a video of my friend Sarah Marshall as ever raising the awareness for pulmonary hypertension and a really good job she did of it too.

https://www.facebook.com/sarah.marshall.56/videos/10154638778911511/

Her hubby Phil does so much to raise money for our small charity too so this young couple deserve our thanks very much.  A follow on piece on the same tape comes from our own head of the PH Association Iain Armstrong who I really like and hold him in high regard.  Not so much this time though as he went on to say that nowadays with the new meds and better understanding of pulmonary hypertension we could in fact live for eight years after diagnosis.  As I am coming up for my 8th year it was hardly reassuring to either myself or the many others in this position.  I just wish he had chosen his words a little more carefully.  Nevertheless his pride in the ph association as a whole is so obvious to hear and so rightly so.  It is an amazing organisation and we all owe so much to it for all the things they do for us and all the info for us just a phone call away.  Well done Iain.

We went down to our land to visit with our builder who has all the land pegged out now ready for the build to begin.  Talk about a quagmire, there was so much mud even my daughter has stopped foraging on it for the dandelions that fed her rabbits a large part of their diets.   (Of course as these dandelions are dying off I don't feel so guilty we are at last getting our house built at last.}  The digger is going in next week and so it will begin in earnest.  I am so excited that at last we will begin to see this longed for house begin to take shape.  Lets hope the weather is not too bad until the roof is on.  Time will tell.

Above is a picture of just a small muddy section of it that has been dug out ready for the cabin they intend to put on the site.  

We both decided we could do with some time out for good behaviour from our routine everyday stuff so off we went to Liverpool for a coupe of nights.  The object was threefold.  We knew there was an amazing music shop and we needed to discuss certain things that Izzy needed to complement her new piano so she gets the best out of her lessons.  What an amazing shop it was and the gentleman we spoke at length to was so very knowledgable on all aspects of music ( as we would only have expected) that we came away feeling so pleased we had made the journey.  Whilst I was there I also purchased a ukulele for my son's girl Anna as I know she does play a few instruments,  I hope she likes it and gets a lot of enjoyment out of it.

The second reason was to buy some new outfits.  I hate shopping for me and so does my hubby, he hates clothes shopping too but needs must.  Off we went.  He was quite easy to deal with and we were both delighted with his choices.  I on the other hand was getting despondent and also very tired as I tried on outfits.  My legs were getting wobbly and my face was so very red and I was so hot.  Just as I declared NO MORE we hit upon two pairs of trousers I really loved and so quickly following on from that we added four blouses to the pile.  A new pair of boots completed the ensembles and so we could at last make our way back to the hotel for a well deserved rest.

The third reason was something we had meant to do for a long time and never got around to it.  As you know we are members of the National Trust,  an amazing trust that does such a wonderful job taking care of our heritage, all the old houses, castles lands etc.  We must preserve our heritage at all costs so we have had annual subscriptions since we were both quite young.  We had said many times that we really must visit Speke Hall. This hall is not too far from us so quite why we never got around to visiting it is beyond me.  Built in around 1530 on the site of an old farmhouse this magnificent Manor House is such a pleasure to walk around.  With a fascinating history we were blessed to be shown around by our guide Vera who brought the house and previous occupants alive.

We were captivated as she told us of each and every generation, the good, the bad and the downright awful.  The last occupant Abigail sounded to be delightful in that she took so much care of the surrounding schools, hospitals and homeless etc that I wished I could have shook her hand.  A fair but strict employer she was one that could be talked to and reasoned with.  A very astute lady she was not for letting go all her worldly goods as happened in those days when a woman married.  No way would she hand over all her chattels so she remained unmarried.  Quite a lady before her time though as when a servant got pregnant before wedlock  she allowed them both to marry and stay in her employment.  Not too many would have done that in those days.

Not the same for all the previous occupants who would not have dealt so kindly.  I was pleased though to see that one of its former owners,  a Richard 1V actually married his servant girl and though  his father would not have been too happy they did continue to live in the house until their deaths.

Reputed to be one of the most haunted houses in the UK it has appeared on quite a few television shows and is said to be haunted by different ghostly figures. One of these being the real wife of one of its occupants.  On being told that they were ruined as he had gambled his money away she was reputed to have thrown their infant child out of the window into the moat to meets its grisly death and she threw herself in after said child.  Not a happy ending at all.

We have been incredibly busy, what with the house, Izzy bathrooms and kitchen hunting, hospital visits and much more.  I actually love weeks like this as being the blob in the chair is never my idea of a good time.  Today we had a super visit from our friends that live in Canada.  Friends of over 30 years we quickly picked up from where we left off and there is never an award moment between any of us.  Sadly the visit was not a long one due to commitments on either side but they have promised to come and stay with us when our new house is built.  

As the build is upon us we also decided to get in a dry stone waller to straighten up one of our walls that has, over the course of the hundreds of years got bowed.  Though it will likely stand the test of time of many more years we decided we would get a better edge to our garden if we did this job now.  Living in a county where lots of our walls in the fields and surrounding district are dry stone we were fortunate to find a man who comes highly recommended.  He has said he will do the wall, though not this week.  How fortunate that he can get on with this swiftly due to being retired.  I can't wait to see him in action.

My denervation appointment is due on the 12th of this month, Thursday.  Despite my asking it seems that for the very first time EVER there are none of my ph friends going to be either as a resident or for an appointment.  I needed to ring the hospital today and was alarmed as I could not get a call through, all the lines were blank!  anyway hours later is was resolved so the taxi will arrive around 9.00 and testing here we go.  I shall post how  get on with this, though there is no right heart cath this time or MRI, just the usual ecg, bloods walk test etc.  

So all is well here, though busy.  I trust this finds you all as well as can be.

Much love to you all and again thank you so much for just clicking the like button, comments are super too.

Carole xxx







Monday, 25 September 2017

How can they fail to respond!

Gosh how I just loved this post that was shared by Ashlee Hutchins .  Its made me smile whilst also making my heart break for what is happening here.  Read the words that are written under the illustration.  See how poignant they are and how true that it is what many of us would love to happen to us.  How could anyone not see the sense in this post.  This is one post that blew me away.  I shared it with one group but want it to reach others in the hope that it makes people more aware.


No automatic alt text available.



Give my sight to the man who has never seen a sunrise, a baby's face, or love in the eyes of a woman.
Give my heart to a person whose own heart has caused nothing but endless days of pain.
Give my blood to the teenager who was pulled from the wreckage of his car, so that he might live to see his grandchildren play.
Give my kidneys to one who depends on a machine to exist from week to week.
Take my bones, every muscle, every fiber and nerve in my body and find a way to make a crippled child walk.
If you must bury something, let it be my faults, my weaknesses, and all prejudice against my fellow man.
If, by chance, you wish to remember me, do it with a kind deed or word to someone who needs you. If you do all I have asked, I will live forever. -- Robert N. Test


Anthony Nolan

Bone marrow:- It  brought it home to me that if you are so generous as to sign for organ donation  then why not sign  the Anthony Nolan one.  This is where you send a sample of your blood off to this trust and all details of this are kept on file.  It is worldwide.  If you match somebody who needs a bone marrow transplant you could be invited to donate your blood marrow.  Over 1.000.000 lives have been saved since this trust began back in 1974.  I remember well the parents of Anthony Nolan begging on the tv for people to be generous and see if their blood marrow matched that of their little boy.  Sadly no match was found and he died aged just eight.  Shirley, his mom, campaigned so hard to make his happen as she did not wish for another family to suffer the heartbreak her family did. 

In 2008 this trust set up the first dedicated cord blood bank.  This allows mothers to safely donate blood from their umbilical cord cord and placenta after they give birth, this is rich in stem cells and it is used for lifesaving transplants.  

Knowing how some people are needle phobic they have now achieved another goal.  By sending out "spit" kits it means that you do not even have to have blood taken if you don't wish to.  The kit is sent back and all details are stored in their files, what a great idea.  Just something to think about for those that like to think they can go some way to helping others.  

Sad really

When we lived in Spain and as my condition, though not diagnosed deteriorated I spent rather a lot of time researching my family tree.  nice and sedentary though the stress did get to me I must admit.  One thing was missing when I finished it was our family crest.  There are many family crests for just one name and it takes lots of research to find the one that really is yours.  In this regard my brother, sadly deceased, did the hard work and bought one for my mom and dad.  Framed and on the wall it was proudly looked at often by all of us, in particular as it said my grandfather 17 times removed was "a good friend to Charles 1st"  Quite why none of us asked to take a copy I just don't know but we didn't.  

After the death of my mom and before I was invited to the house, I did not have a key, this crest disappeared.  I asked a family member who knew who had it if I could just borrow it to take a copy.  Well how pathetic is it that this has not materialised.  All I wanted was a copy.  I took years researching the family tree and some of the family benefited by using my site to move on with their own research.  As I am trying to add photographs and places etc to the tree I feel it is sad that I am to be denied just a copy of what was not even theirs in the first place.  Pathetic really.  

Piano time

As Izzy has begun to learn to play the piano we were asked to provide her with one for home.  A rather expensive piece of kit  this, she should have taken up the triangle, three of us shared the cost.  With bated breath we awaited its arrival.  The stand was bought and ready, the seat in place and all that was missing was the keyboard.  It arrived and my did it look big!  All unpacked and placed on its stand and plugged in Colin began to test the keys.  He did learn piano as a teenager so has way more idea than I do about these things.  Though we did have a piano as a child my sister dropped some money down the keys so she destroyed the whole key board getting out her money!  That was the end of any hopes I might have had for learning to play the piano!

It was discovered that the last four keys on the key board did not play correctly so it has to go back.  What a huge disappointment, in particular as this was part of her birthday present too.  We are hoping it gets collected today and another is sent out to us quickly.  I know Izzy and her attention span.  She really needs this to push her on further. One hour lesson at school is not enough if she is really interested in mastering the art of piano. 

Well you could have told us.

In Leeds on Saturday with Izzy buying her a  new winter school coat we discussed the state of the new house, or lack of it with my son.  Though we were reliably informed that the build would take place at the end of this month or beginning of next we had no firm date.  Then Izzy piped up that they had "put some wood in".  On talking to my daughter it transpires that indeed yes, a start, albeit a small one has been made.  The site is all staked out now so we can see exactly where our house will sit on the land.  I was shocked as to how much of the land is taken up with the house, though we always knew it would but I really can't see" things in my head, I need to physically see them.  It is not a particularly big house rather the land is rather small.  Now I need to write a letter to all residents telling them where we are up to and giving our telephone number if there are any issues they wish for us to resolve whilst the building work is going on.    

Autumn

I love this time of the year.  The weather is crisp and I love the nights coming in earlier.  I can't cope with the heat since I got ph so it suits me right down to the ground.  We have already begun to get things booked into our calendars that really work the best in the autumn.  One of these is being a National Trust cooking on a camp fire where we will take Izzy.  This is being held at one of our favourite places,  Hardcastle Crags.  Two of our friends will also take their grandchildren and we should have so much fun.  It is no secret that we love open fires outside, the best place for them when it is chilly all around  and you get toasted as you sit close enough to stay warm but not too close you scorch.   Yes we have had many fires ourselves outside but as this is being held in such a wonderland and it will be lit up with fairy lights for the kids etc it should be a great evening out.   

Why Why Why !!!!!!!

I watched the news with horror today to see that though there is a government ban on children under 18 being allowed to be sold knives etc there are still many shops selling knives, cleavers, daggers etc. to just such people.  Whilst the news was saying this was happening in London it will be in many places.  When we look around at the heartbreak that is caused many times by children fighting, maiming and killing with these implements why are these shopkeepers doing it, and as if is known that they are being sold illegally what are they doing to the people selling them these weapons.  To be honest I think we are never going to get on top of all the hatred out there now.  Though I hoped for a safer place for Izzy to grow up in I fear this will not happen in my time for sure.  It seems to me the world has gone mad.  

It is a lovely day outside today, a day when we would have gone searching for conkers when we were young and when my children were young too.  Conkers have been banned now in schools and I don't mind that but I do recall all the pleasure we had with them when we were young.  Yes we might have had a banged knuckle or two when having conker fights but for sure there were no deaths that I recall or no stitches needed to stop guts spilling out when we "fought" our opponent.  Oh happy bygone days!!!

Flu

Am I scared about the flu heading our way from Australia, you can bet your bottom dollar I am.  I had flu once in my life and the memory is still strong in me today.  The experience was so dark and horrible and yes, scary even though I was a healthy girl in my twenties.  How much more worried am I now I am older and severely compromised.  I will definitely be using my antibacterial spray more than ever when leaving the house and asking those that come to our home to use it on our doorstep.  Do I think I am taking it too far, no I don't so please, anyone reading my blog take extra special care, remember a dose of flue can kill even the hardiest person.  My friend died from flu when he was 32 and a vey nice strapping lad he was.  Sadly he died over the Christmas period as his body just could not cope, his organs shut down one by one.  He left behind two young children.  There is no flu jab for this one at all and they are anticipating many deaths.  Just take extra special care please.    

All for now.  I need to go and see my butcher.  We are having friends for dinner on Friday and I need to order my meat.  We are cooking a Jamie Oliver main course, one that looks really nice.  Colin will deal with that whilst I shall be in charge of the starter and the dessert. I always look forward to seeing theses particular friends so I know we will have a lovely evening.  

Go well everyone.  Thank you once again for reading my blog.  Thank you for liking it or for any comments, these are so gratefully received!!!


Warm love  Carole xxx



Thursday, 14 September 2017

We can't cut and run

Seeing a post a few days ago by somebody who is so fed up she has even contemplated suicide made me think of just how far we have come.  You wouldn't give in if you were in a race and we cannot either.  Most of use are doing way better than we ever expected since we have been on our meds.  For a lot of us our pressures have reduced and kept us here whilst waiting the cure.  We just can't give in to it.  Have your bad days, have your weepy days and duvet days ( I had a duvet day yesterday ) but then pick yourself up and do the best that you can.  Enjoy the good times.  See a doctor if you feel you might have depression but please, please never give in to ph.  Don't let it beat us.

Jane Jellyfish Davis

The funeral was held earlier this week for this amazing woman.  Sadly due to different circumstances most of us did not attend.  We were so fortunate then that Victoria Mayhew was able to go.  She had a brainwave of an idea and bought a card.  She then posted it on Facebook and asked if any of us would like to put something on this.  Once we had posted back to Victoria just what we wished to say she wrote it down for us and put our names with it.  She was then able to hand the card over at the funeral.  Such a beautiful thing to do.

It looked like her funeral was a really lovely one with a beautiful carriage to carry Jane in.  Many many balloons were released to fly away in memory of her.   I wonder what passers by thought was happening when they saw so many floating merrily across the sky. Fly high Jane.   Our thoughts are with the family.

YES at last a medicine dedicated for children!


How long have people been waiting for this medicine.  There has never been one just for children and I believe they had to take the ones for us, though in a lesser portion.  I am sure many parents will be so pleased.  This goes to prove that once again we are moving on with ph.  Once again the researchers keep working away for each and everyone of us.  Their goal is to cure but in the meantime to keep us as well as can be until that momentous day arrives.  I was so pleased to read this.

Since writing this it appears all is not how it appeared. It seems that the FDA have approved bosentan for children and not a dedicated one.  So sad about this but nonetheless another therapy to help.  

It breaks my heart when I see children carrying their backpacks to school with either their oxygen  or their pumps if on a hickman line.  Nevertheless these children just get on with it.  To them for many it is just the norm, the good days and the bad days.  I can't wait for the cure so that these children grow up in a world where ph means nothing to them.

How very bizarre

When we were in Scotland we bought two pirates for the memory cabinet that is on the wall in the study.  Now this display cabinet is rarely opened,  We open it if we have a new memory and occasionally we do allow Izzy to climb up on the step ladder and rummage around with the things.  A few days ago she asked us what had happened to the girl pirates arm and sword.  How aware are children as we had not noticed at all.  When we looked sure enough her arm had dropped off.  We assumed that it would be nestled on the base of another shelf but we looked and looked to no avail.  It has vanished.  Nobody else even really sees this cabinet of memories as it is in the study.  certainly we have not had anyone in the house who would even be bothered so where is it?  It remains a mystery but we decided, with the blessing of Izzy to take out the third pirate we got from her own memory box and replace it with the broken one, along with an explanation for future reference and we put the whole one  one in  our cabinet to sit proudly side by side with her mate.  If anyone has an explanation as to how an arm and a sword could just disappear from a closed display cabinet with a catch hard to open please do tell.  Until then it will remain a mystery.  

Just too much

Stress that is.  How many times are we told that we need to try not to stress out, stress can be a killer for us.  Some people I know do not give a fig and have caused a great deal of stress.  The person who began the whole thing who used to reckon she loved me showed her true colours.  Mind I really should have known as through all the months in total I have been in hospital they only ever bothered to come and visit once and that was at my local hospital whilst waiting to be transferred to Sheffield.  I suppose I should have taken it as a measure of how they felt about me then but I didn't.  Anyway through a silly thing that happened, a joke thing said about a recipe of all things she shut me off, taking with her my brother.  This caused endless stress though I tried to reconnect with them they have refused to meet with me halfway.  So the end of that as I decided to shut them out of my head and move on.  

I do wonder sometimes that as I am still alive they do not realise quite how poorly we are with ph.  Maybe they think I am partly cured!!!!  Until then we go along with all the pain, the lethargy, the sickness that comes with ph.  I will not give up the fight though,  I will just do what it takes to keep strong and stress free.  

Sign the form please!

This week is the one where we try our best to make people aware of how important it is for them to sign the organ donation forms.  Not only that but to tell your family as we know there are times when families in their understandable grief just won't allow this to happen despite the wish of their loved ones.  Remember one day it could be you or a family member that needs this gift of an organ.  Please be aware of this and take a loving step to sign the organ donation form if you have not done so.  The only cure for us with ph is organ donation and I have friends waiting for this gift of life and all the while organs that could have saved them are burnt or  buried.  Many illnesses mean organ donation is the only cure for them.  Please please sign the forms.  

So all for now, I have written this blog twice as I lost the first one!  We are going down to the land to try to tidy it up a bit as hedges have grown a lot recently.

Try to stay as well as can be.  Again thank you so much for clicking the like button on my blog and I absolutely love a comment or two.  

Warm love to you all

Carole xxx




Saturday, 2 September 2017

What a cold does to us


Just too many deaths

These last few days have been very painful.  First we heard of the death of a friend (not ph related) at the age of just 60.  Though I am not sure of all the details it appears to be something to do with his heart.  His wife is asking for donations for a defibrillator so maybe if there had been one close to hand he could have been saved.  Sadly due to lack of oxygen his family were told that there was nothing that could be done, though they got his heart beating again he was brain dead.  He died peacefully a few days later.  Today is the day of his funeral so I will go and pay my respects.  So sad for a family to lose a loved one so suddenly.  One day he went to work and he never returned home.  

The next death was our own Jane Jellyfish Davis who fought hard her battle with ph and other illnesses.  Sadly he kidneys could not take the strain any more and I believe this was the cause of her death.  She had been in and out of hospital so many times and kept fighting back with a great spirt.  She will be remembered as well for her jams and chutneys of which she made  many.  Rest easy now Jane, you will be missed by so many of us.

The third death was yesterday (Wednesday) and it was the expected, though sad death of my godmother.  She died in Whitby surrounded by her family who told me her death was a peaceful one.  I am so thankful that I had managed to see her just two weeks ago, I knew the end could not be far off even then.  Her biggest fear was that she would end up in a nursing home and I am so thankful that she did not, just one night in her local hospital.  There will be a small funeral for her in Whitby and then a small memorial for her back here where her ashes will be laid to rest along side her beloved Ken, my godfather.  

The is the end of an era for us as a family and we will never return to Whitby without carrying them in our hearts.

Leeds girls day out

No not a rowdy set of girls “doing the bars” but a day out for just Izzy and I.  Grandma and granddaughter time together.  Though I was very nervous about how I would cope it actually turned out really well.  We went in on the train and Izzy loved it.  She told me it had been a while since we had been on a train so it was still a “fun” thing to do for her.  Our goal was to go to the Trinity Center and buy her she new lego ready for her holiday with grandad in York.  There is always something going on in this center and this day was no different.  This time there was a slide, not any slide but one that was enclosed and twisty.  At the top was a wind tunnel where there were lots of leaflets blowing around.  the object was for Izzy to catch one ad then she was to be allowed down the slide.  At the bottom was a lovely setting, it was as if she was on a beach with deckchairs and swimming things all around. They were promoting a new French Restaurant.  

As it was too early for lunch we did what we had set out to do, chose new lego, went to TK Max where she eyed up two dolls so much that of course I fell soft and bought them for her.  We both tried on boots and trainers, though left without any.  I must confess to laying down on the enormous seats they have for the customers to try their shoes on.  Nobody was about and my body was telling me I just needed to do this.  After a short rest we decided it was time for a real rest in the shape of going  to lunch.

This French place that had been promoted at the Trinity Center was really lovely.  I was presented with a glass of bubbly and we were seated where  we could watch the world go by .  Izzy was given a drink and we were also presented with some gorgeous garlic bread which we both ravenously tucked into.  This was all for free as it was part of the promotion for their new place.  I then decided to order from the menu and we both enjoyed our main courses, though as Izzy has four loose teeth it was not easy for her to eat chicken without the fear of losing one of her teeth.  Fortunately she did not.  After a gorgeous dessert and such a long rest we both decided we needed to head for home.  A smooth journey back and a taxi to our house and I flopped onto the bed.  I was absolutely shattered but she was happy to lay by the side of me and play with her new dolls.  We both agreed grandma and grandaughter days should be on the cards more often.

Right now she is away in York with her granddad. My friend Lucy is here with me so I certainly do not have time to get bored.  I did go to York with them and spent a few hours before catching a train back home.  We went to the Jorvik Center and I was surprised at the questions she asked the archeologist about the dig and the things they had found.  The shrinking violet has gone to be replaced by a very confident little girl who is quite happy to step forward and discuss things of interest.  She loves skeletons in particular and took a great deal of interest in examining the bones to look for signs of arthritis etc  One of the bodies had an extra tooth so she was amazed by this!

Onward to Barley Hall a reconstructed medieval townhouse.  This was originally built around 1360 by the monks of Nostell Priory.  Once again she was blown over by the history of the place and we must have spent over two hours in the few rooms there are.  In the end she was so reluctant to leave but I had to go for my train so I left her there with grandad.  As she was so interested in history and digs etc it was decided she would go on an archeological dig in York too.  Of course this was designed so that he children did “find” things” but I think this is a wonderful idea as it piques their interest even more.  It would not surprise me at all if this child later in life goes on to do something in the world of archaeology as she has shown over the years a great love of finding out and wanting to learn more about our past.  or maybe she could become an historian, time will tell.  

York Maze



A day was spent in the York Maze.  Izzy loves this place and for those of you with children, or indeed without this place is amazing {excuse the pun}   From the house of confusion to the pig races and the maze itself, soon to be removed to begin new growth for next years maze there is so much to do.  This is such a fun day out for the whole family.  The maze easily copes with wheelchairs and mobility scooters too so nobody needs to feel they will be excluded.  The Maze is only open from July to September when the crop is harvested so please check with their website if planning a trip. 

It is  just a cold!!!!!........ or not.

It was nothing more than that, I had a simple cold but in the world of ph it means so very much more.  It means legs that shake so bad they feel there is not enough strength to hold you up,  it means the wheeze in our chest that makes us wonder if it is going to “settle” and give us an infection.  It means keeping a careful eye on it ready to take the antibiotics if it does take a turn for the worst, though hoping they are not needed.  So a simple cold to many is nothing more than that.  to us it could end up with a stay in the hospital.  I have been admitted numerous times with a cold that turned bad.  I felt this was “just a cold” and I believed I was on the mend.  The tissue mountain became less daily, the vic was not being used as much and I could now risk clean sheets that would not be covered in the smelly stuff. 

Well I was so wrong on that score for sure.  The cold that I felt was disappearing came back with a vengeance and slammed me with such a wheeze, not able to breath properly and a feeling of such constraint in my chest.  I rang the doctor who asked me to go in for them to listen to my chest.  thank goodness I did.  I saw Dr Davis who is the doctor who knows my ph specialist personally.  He listened to my chest and stepped back in horror.  He said my lungs were really bad so antibiotics it is once again.  He also took a blood test to check for pneumonia, though I am sure I do not have that.  The speed of which a simple cold turns bad is alarming.  I shall be resting for the next couple of days.   

Time out

Thank you for all the lovely comments on my post when I said I would be returning to Facebook after taking time out for a couple of weeks to share in taking care of  Izzy who was spending her days with us.  It felt so good to spend time doing crafts and things with her without checking  the computer to see if there were new ones who wanted to join the Pulmonary Arterial Hypertension Support Site.  It was time well spent as I have returned feeling much better and more refreshed.  Whilst social media has a very definite place in our world today I do believe that time spent away from it can also be very beneficial.  I know quite a few people who have posted in the past that they are just taking time away from the computer.  I can't believe it does any harm at all.  It certainly worked for me and I feel so much more focused. 

The wanderers return

Colin and Izzy arrived home yesterday.  We are still clearing away all the things they both brought back from their trip to York.  This apartment is too small for all of this, roll on the new house.  Izzy was full of all she had seen and done in York and is looking forward to her next trip.  Her grandad is looking forward to a rest!  I am sorting out things to take to our local charity shop so a trip there will be needed today.  Other than that nothing is on the cards for me but to rest.  


So this is a boring blog really but at least you know I am still around

Much love to you all and thank you so much for taking the time to read.

Carole xxxx 





Saturday, 19 August 2017

A tale of joy and woe.

My blog is quite late I know and I have been a bit quiet on Facebook recently.  The reason has been the pain in my back and ankle.  It really got to me the pain  necessitating in ending our holiday two weeks early as I said in my last blog.  I was given pills for the pain and anti sickness pills too but they have made me feel pretty poorly.  Isn't it awful that the tablets to help us to cope with pain make us feel so bad!  My mouth also tasted bad due to these pain meds  all the time so even with mouthwash I had a pretty awful taste going on.  All appetite left me though that is no bad thing, good for the waistline. 

My ph seems to be in a good place at the moment.  I know this can change to the bad at anytime but being an optimist rather than a pessimist I just look forward to the good days and push the bad ones behind me.  I truly believe the denervation I had has helped me with this.  Time rolls  by  day by day and before I realise it I have had more good days than bad and if the pain in my back would leave me I would  be content.  

I have seen a sports therapist to help with the problem with my ankle and though the work she did on it was pretty painful  it does feel easier and not as “locked” as it was so I am still hoping to manage it without having a cast put on. 

Royal Yacht Britannia 

I forgot to mention that when we were touring Scotland and were in Edinburgh we decided to take a tour around the Royal Yacht  Britannia.  What an eye opener it was for me as my expectations were of a ship so much grander inside  than the one I saw.  I am not decrying the Yacht, it it beautiful but I expected the Royal bedrooms to be very elegant and ornate.  Not so at all.  

The Queens own bedroom had a single bed in it and bedside tables and a dressing table.  A door led to a wardrobe for clothes.  All very tiny, very compact.  The en suite was no larger than ours where I expected so much more.  

Another door in the room led through to the Dukes own bedroom, a mirror image of hers just slightly more masculine.  Whilst the Queen  had her sheets stitched with her own personal logo the Duke did not.  The bedroom where the later royals honeymooned, two of them being Charles and Diana had a double bed, not king and again was quite sparse.  Believe me I have cruised many times and would have considered myself to have been short changed had I been given a cabin such as these. It transpires that Diana spent much of her spare time on a deck a few floors below with the staff singing and enjoying listening to their tales, so much so that here were still plenty of memorabilia about her in the crews lounge bar.   

The Queen had a lovely lounge where all the family would meet for drinks before dinner, sherry was the favourite choice.  This lounge contained a piano that was used often.  Many jigsaws were in this room and board games that the family enjoyed.  When this Yacht was being built the Queen requested a real fire that burnt logs!  It was quickly pointed out to her that this was a definite no no and so a dreadful electric fire was installed instead.  For those disabled  there  was a lift between decks.  

The dining room though was a feast for the eyes.  Very ornately set table that could hold sixty I believe with gifts from other heads of state decorating the walls and  cabinets. The room the Queen breakfasted in was really  small, smaller than an average conservatory, though it sort of narrowed and then went around to another of similar size, all being part of the same which made the whole space bigger.   It led out onto a deck where the family could take the sun. Though not what I expected it was fascinating to go around and made for a very enjoyable morning. 

Back again!

This blog is going to be jumping around I fear as I keep remembering things I want to tell you.  One of those things is that the gypsy camp returned, though only for three days.  This time they decided to enclose the grammar school that is situated at the top of the moor.  It was fortunate that the school was closed for the holidays as the playground was used by them as a place to “lob” (throw) in their children's dirty nappies over the wall.  Fortunately the caretaker dealt with  this once they were forced to move on.  Though I did not encounter them this time my niece Sally and her friend had a sad time  with them.  Whilst walking the dog, on a leash, across the Moor they were shocked to see some of the gypsy cars being used to “spin” round and round the grass for fun, thereby churning up all the grass.  A bonfire had been lit in the middle of their camp which in turn would cause damage to the grass.  As this  site is a play area for the many games such as football, rugger etc this was so sad as once they left much work would need to have been done to restore it fit for use.  As Sally and her friend proceeded down the middle of this Moor they were confronted by a boy, likely around 15 she thinks who called her and her  friend whores!  Sally told her friend, a woman of around 45 who suffers from epilepsy not to take any notice, not to react but to keep on walking.  Sally was so worried all  the confrontation would cause her friend to fit, fortunately it did not,  This appears to have enraged the youth who decided to take his anger at being ignored out on my nieces dog.  He kicked it!  How Sally kept her temper I do not know but I think she knew it would be futile to argue and so they both continued to walk on.   At this the youth decided to do one more last desperate act to try to intimidate. he dropped his trousers in front of them.  To the credit of Sally and her friend they just kept on walking!  The youth decided he was beaten I think as nothing more from him was forthcoming. Though they only stayed three days, being moved on swiftly by the police it cost money to once again sort out the Moor.  A garage just around the corner from them was broken into and a large garden had its vegetable and fruit produce stolen.  Once again we can't know it was them but it follows a pattern.  So in only a matter of weeks they have been here twice,  beginning to really get concerned.  

Tuesday

As my godmother is so poorly and close to death we decided to arrange another visit, the last one was four weeks ago to see her.  This coincided with my brother and his family taking  their holiday where my godmother  lives, Whitby. As we have Izzy for most of the school holidays we decided to stay over in a lovely hotel and let Izzy enjoy playing in the sand and our families meeting up with each other.  

And then came the sunshine 

Though the time didn't begin in the best way it ended really well.  As there had been an issue on Facebook with a fellow ph members  account being suspended  and my advising people to block this man it created a huge hullabaloo and something well meaning  turned into a nightmare.  This of course had the effect of the stress pushing up my ph, not just for me but by the gentleman on the other side of all of this. It was so hard leaving the house to go away as Colin had to deal with everything, I felt so very poorly.  He asked if we should cancel and for a second the idea of staying in bed and blocking out the world appealed so much but  Izzy was so excited and there was also my godmother to consider.  I sat in the car with a sick bowl in one hand and a tissue in the other.  It was a hard journey to make knowing all this mess needed to be sorted .  Anyway by the time we arrived, though I felt very depressed with all of this I tried to get in the mood for Izzy.  

As always spending time with Izzy cleared my mood and I realised that more than likely I needed “time out”.  By Thursday the issue was resolved well from my side and I am hoping it either is or is getting  resolved for Buster. 

Our room was lovely and Izzy loved the huge bathroom we had.  We had a king size bed and the bed for Izzy looked so inviting I wanted to lay down on the big, marshmallowy mound of duvet and snowy white pillows and rest all day,  forget it all,  Facebook and everything.  

Izzy decided the beach was where she wanted to go as she wanted to “build the biggest sandcastle ever” so off we went.  With me ensconced in a deckchair grandad and granddaughter began to build. It was decided their spades were not big enough so off I was sent to find the largest ones I could find.  Job done and they proceeded to try to dig down to Australia. 

Little children around came to look so we gave them the small spades and they “helped” too! 😎🤠😄.  Then came their swim in the North Sea.  Do not compare this sea to the warmth of the Atlantic.  Ours is cold, grey and miserable.  Nonetheless Izzy insisted so off they both went.  I expected them back in minutes with Izzy declaring it was too cold.  Not so, she loved it and was in around 20 minutes.  I was shocked but pleased.  

We met up with my family for a short time and I arranged with my brother to visit our godmother the following day. After spending a lovely time together it was time for bed, Izzy being upset as she had seen a skeleton  riding a bike and a man popping up from a well to say  boo!   She really is soft this girl but she is my joy, the sunshine in my life that always warms my heart.  

On our return home I decided to take  some well needed time out from Facebook and so to that  end I will be enjoying more precious time with Izzy.  This is very important as she has reliably informed me that neither of us will be at her wedding, she is not quite 7.  When I asked why not she tells me we are both too old!  She said by the time she gets married we will be old and  stooped and have grey hair, though if we really want to attend we may do if we use a walking stick and I wear a flowery dress!  
In the meantime the pah site is left in the very capable hands of Paul, Nicole and Lyz who will, continue to keep up the support and help new members to find their way.
Thursday 

We spent a very busy day, leaving me exhausted but happy. Izzy has some gorgeous new patent  leather Clarks’ winter boots ready for her return to school.  We also bought her a purple bike with little hints of green and gold for her birthday.  Seems silly to wait another five weeks when she can have the chance of using  it in our park opposite, through the school holidays.  No stabilisers so could prove interesting!  

So I will get this  posted in the morning,  It is 4:29 am here, a time when I am often awake trying to give encouragement to newbies in the group. As I have left that for now what better way than to get the blog completed. 

In the meantime I leave the group in the very capable hands of Paul, Lyz and Nicole who will continue to accept  new members into the group and be there for any of you who needs a shoulder to cry on or any advice  they can give.  

Stay well and keep up the hope for a cure,  I pray my next trial, hopefully at the beginning of 2018 will be the one we have all been waiting for.  One day it will come.  

As ever thank you for reading, liking, sharing and commenting. 

Warm love to all

Carole xxxx