Thursday, 28 June 2018

LIGHTS CAMERA ACTION

An English /American Drama

So much going on around here right now.  If one decides to go for a coffee in our park you are likely to brush up against the likes of Suranne Jones, Game of thrones star Gemma Whelan, Timothy West and Pete Davison to name just a few well known faces.  The reason is that they are filming Gentleman Jack, the real life story of Ann Lister  who lived in Shibden Hall and was a lesbian long before it was acceptable, all kept very quiet in those days.  Ann was a fascinating woman who kept diaries and wrote about her lovers in code.  She was a mountaineer and a traveller who was fortunate to have inherited great wealth from John Lister.  If you are interested in things such as this you can find much about her on google.

There is an enormous marquee on our moor that took days to prepare and many lorries declaring they are tv crew dotted all around.  I love history and as Shibden Hall is in my town and such a lovely place I am so looking forward to watching this  Drama when  it comes to our tv screens later this year.  I do hope others who read this blog look out for it and watch it too.  It is eight series long so for sure my tv planner will be switched to record each one.

Raising Awareness for PH

This is a constant with me. Whenever I can I like to use my backpack given to all here in the U.K. who attended our conference. Bright orange it certainly stands out and the words PH can be clearly seen.  I have had some people ask me what it meant and I am always happy to tell them, to show that there are hidden diseases in the world that are so devastating.  I have also ordered from America a T Shirt with, I b believe, 365 names on it of people like myself who are suffering from ph.  I think this is the second shirt that has gone on sale like this, though of course different names.  I can’t wait to wear mine and as I type this it is winging it’s merry way to me from America.  I would love to hear from those who already own one if you have had any comments when wearing your shirt.

I think one thing that unites us all with ph is that we are tough.  After the initial shock and horror of being diagnosed with a life shortening disease we show the world just how tough we are.  We cope with so much from day to day that a healthy person can have absolutely no comprehension of as we try to hold it all together, to show a different side.  I am proud to belong to groups of my ph brothers and sisters world wide.  We will fight as long as we have breath in our bodies, through all the horrific side effects of the meds just so we can live another day, week, month, year.  There is also the hope that we do not succumb to this disease, that the cure is around the corner. So talking about meds it leads me nicely on to ........

Our admin Nicole Burish

Congratulations to Nicole who has now transitioned over from her pump to oral medication!  I did this seven years ago so I know well her jubilation.  I think it took three days to transition over, she said she suffered a bad headache initially but a small price to pay.  Her aim is the one we all wanted when on the line which was to go into swimming pool or take a deep bath. She will now be able to do all of this without fear of infection travelling down the line to her heart.  Oh and Nicole, the joy of getting rid of all those gloves, the syringes, the lines, the swabs and everything else that goes with the mountain of equipment needed for the line.

It is fair to say that it is not always easy coming off the line and there is a tine needed to get used to the changeover.  Nicole herself as well as the headaches  is suffering pretty badly at the moment with a stomach ache that feels like "her belly is on fire".  She is in touch with her ph team though so they have told her it is to be expected at this stage of transition.  She is a trooper I know and will cope until they subside and her new life begins line free.  Even with the side efforts she has she feels jubilant and can barely believe that after three years she is now unencumbered with the line.  We need to remember that it is thanks to the line that her heart has now reduced in size and her pressures have dropped significantly to allow this.   

So take heart those of you still on pumps, or just beginning your journey with the pump.  It may not necessarily be for ever, nobody can say until they see how your pressures drop etc.  I know that I personally wish Nicole all the best.  Most of all I wish you enjoyment of now being able to do the things you have been excluded from with your son.  Go girl and enjoy.  

Injections.

At last the day  has arrived when I go for my injections into my vertebrae, my hope is that this time it works as the last ones did not at all.  Over time my pain intensified so that it curtailed my every day life to a huge degree.  I hope that now this can change and I can get back to my own normality. Pain, as you all know, is such a terrible thing and of course we are limited in which meds we can take to try to ease  it.  I must confess to overdosing a time or two but hopefully no more, please hope with me that this time the result is a pain free existence for some time to come.

(Home now from my injections.  I told him that the last ones did nothing at all so this time he delved around quite a bit trying to get right into my vertebrae. He said often patients do well with it just running along the top but clearly it does not work for me.  Playing the waiting game now to see how it goes. )

Gutted

Our house  build came to a standstill except for outside works all thanks to one person.  That person is a plasterer who had a few personal issues so we did not see him for two weeks.  In that time works that should have been carried out had to be put on hold.  Joiners could to get on with their work or electricians, nor could any of the plumbers.  We were devastated to go down day by day believing his reassurances that he would be in only to discover he did not make an appearance.  Consequently all internal works stopped. Yesterday we discovered that once again work is going on, he is doing his bit with his uncle ( who owns the plastering company } coming  to help him when it comes to the very difficult parts of the walls and electricians were buzzing around fixing lights to the outside walls. Two people were at the front door erecting our porch so once again we are thankfully on the move.

We had a mishap when the tilers finished tiling the upstairs bathroom and it was awful.  We went in and Colin began to tidy round and saw to his, and my despair, that the stone resin shower tray had a crack in it.  It was not in when it was bought so quite how it happened we have no clue.  It could be down to three services, One thing for sure though we need another one so that is now in hand.  Fortunately  we saw it early on so that the tilers could come back whilst the tiles were setting and take the ones surrounding the shower tray up.  One step forwards two back springs to mind right now.    

Rocks

Izzy found this lovely small stone on the park the other day.  On the back was a few words to say to log onto Facebook and show your stone or rock on a website and then put it somewhere else to see how far your rock travels. Needless to say we are now looking for suitable pebbles or rocks for her to decorate and see how far they go.  I saw one pebble left Huddersfield and ended up in New York so some kind soul obviously travelled with it and placed it to be find across the waters.  I am quite looking forward to finding out the journey of the stones when we get around to doing them. 

We cannot wait until this house is done.  We do not have any free time to go away on holiday as days are spent with Colin running backwards and forwards between the new house and this apartment.  I think he is too meticulous and there is only one decorator he can trust and he is on holiday. He likes his painting to be done "right" .  The preparation takes quite a while before any real painting begins.  Though he tells me that is the most important part and I know that is true.  If it was left up to me it would be a more slap dash affair.  So we wait, whilst all this good weather passes us by. I envy those living at the coast as you will get the breeze we do not here and it is baking.  

So away I go again, a few bits of news but nothing exciting.  Can't wait for the day we get off and do more enjoyable things, it will happen.  To  be honest the first thing i am really looking forward to, and it sounds daft, is the very first time Izzy opens her gate and walks up the path to her second home, ours.  After all it is what this has all been about.  

Please if you can click like or comment so I know I still have you in my corner!  I am aware I do no write as often but can only write when I have at least some small thing to write about.

Warm love to all [ and my it is warm in the UK right now and fires burning strongly on Saddleworth Moor in Lancashire. the place where the evil Brady and Hindley buried their victims bodies.  } It would be wonderful if because of this the burial place of the last body came to light and he could be laid to rest in a friendlier place.  

Carole xxx

By the way the toe is doing OK ish  Strapped and painful but not as bad as it was.  Happy to feel it begin to heal.  Thank you all for your suggestions and your concerns.  












Sunday, 10 June 2018

THE JOY OF READING POSTS SUCH AS THIS ONE

Anna Caroline Bowen and Hickman Line

It was such a lovely post to see last week after  tests  showed that thanks to her hickman line and the iloprost she was receiving through it her pressures reduced so that instead of the level 4 when diagnosed she is now at level 2!!!!!!!  I wanted to write this so that those facing the trauma of the line can see the generally,,no I can't say for everyone but generally the improvement is really good.  I myself was on the line at level 4 and came off it at level 2 after 12 months, plus the transition over to oral meds.  

I do think that sometimes the thought of the line scares people away from it and I really get that but when we see posts such as these it can make others see that they can have a better life if they trust the specialists.  Once on it  then of course the hope is that the meds, delivered every two minutes close to the heart can have such an amazing effect. Neither Anna nor I can say it is all plain sailing but then it is not with any of the meds cos at the end of the day we do have ph.  I still believe that our specialist doctors know best for us and we should heed their advice as Anna did.  So go well Anna.  She says she feels so much better in herself and can do more so what a result.  As a mom of three, two still at home what a blessing.  Of course she will still have her ph days, who of us can say she will not but the results are in, her pressures are lowered so I am so happy for her and her family.  

Anna says she would be happy to speak to anyone with young children as that seems to be an issue with them and the worry of the line.  If you want to talk to her you can get her on Facebook.  I have said here before that Izzy spent her first fifteen months of life with me having the line in, though for three months it was a line only and no pump!  She used to twirl her fingers through the line, I never had a mishap with her playing with it but  it did transpire on removal that it had been sewn in so tightly it was hard to cut out.   

Anna still has hers so is more up to date with any news about it.  Please please do not hesitate to contact her.  She really wants to help people regarding ph so in actual fact it would make her happy to help you if you are trying to decide whether to go for the line or not, or indeed problems that might occur with the hickman line.  

My Mom

I can't stop thinking about my mom these days and I am wondering if what I said caused her death earlier than it should be.  My mom had dementia, not too bad but there it was.  She was taken into hospital as she really was not well.  She would not eat, she said everything tasted too sweet.  This came from somebody who always had a sweet tooth.  She was so small, so fragile.  I would make her fresh soup each day and take it to her but she said even that was sweet!

We all visited her so she was never short of visitors and we laughed a lot about the things we did as a family when we were younger.  I remember her sitting up in bed saying didn't we have a lot of fun when we were all together".  Though she had previously told her neighbour she had had enough she wanted to die she was really happy in the hospital, surrounded by all her family.

We knew the end could not be too far away.  They talked to us about palliative care, we are not stupid people so we knew what to expect but I think I brought it on sooner and I feel such guilt.  She told me one morning that her foot was very painful.  We could see no reason for it but I asked mom if she wanted to have some painkillers, I was thinking paracetamol etc.  She said yes so away the nurse went to write it down and to get a doctor to agree to it.  Unbeknown to me then they began to give her morphine!  I would not have agreed had I known that.  When I next went to see my mom the following afternoon she was not herself at all acting drugged up, as indeed she was.  Her memory was not good and her speech blurred.  

Shortly after this she was moved into a side room and she deteriorated quickly.  I remember standing with two of my brothers when they wheeled her past us for a shower and she was slumped over in the chair.  I cried and asked if it was wrong to wish for her to die.  meant it in a kindly way, I did not mean I wished her dead were she ok but it was obvious our mom was no coming back to us.  In days she got worse, she just slept.  We all continued to visit to talk to her but in the end the inevitable happened and she died.  Now  feel such guilt.  Had I not asked for an pain meds I truly believe she would have lived a few weeks longer.  I feel  I denied all the family more time with her and I must admit it haunts me,  There is nothing I can do, no going back but the guilt is with me and always will be, sorry mom.  

Feeling pretty good regarding my lungs   

I am trying to come off my gabapentin that was prescribed at the height of my neuropathy when trialling DCA.  I am now on a low dose but it does not help my sleeping at all.  I am regularly awake in the wee small hours of the night and of course our minds go into overdrive.  I keep thinking about  the new house!  Regarding my ph though things are pretty good.  I know my breathing is so much better since my denervation and seems to continue to get better even more so since my last test in January. after the procedure.  I am blowing almost 500 on my peak flow monitor which is pretty good.  I must also confess here that I am taking special note with my sildenifil and ventolin.  In particular with the ventalin i make sure that with each puff I draw it deep into my mouth for the recommended 10 seconds in order for the dose to reach into my lungs as far as it can.  I certainly do feel the benefit of doing this as before I was performing this task very perfunctory and know I did not do the ten seconds advised by my specialist.  Once again it is a case of our specialists can do so much but we must do the rest ourselves so I am taking all their advice seriously. 

I am aware that I was blessed to be given the opportunity to have the denervation and want to do all in my power to show that it was deserved.  It is doubtful now that I will be in a position to trial now as my pressures are pretty good so I will miss that.  I loved taking the meds in the hope that this one was the cure for us all, that the breakthrough had arrived!  I do love hearing about the trials that others are on so please keep us all up to date with how you are doing.  

My spondylitis is still giving me a lot of pain but not as much as at first.  I can at least type so that has to be better.  I am hoping for an appointment at my pain clinic.  Indeed we received a message yesterday advising of an appointment at our local hospital for next Friday but as the pair of us are both waiting for appointments for various things we do not know which appointment it is.  We hope to receive a letter on Monday telling us this or failing that we shall have to do some sleuthing.  If it is me then I really should come off my warfarin five days before so just in case I will stop taking it until we know.  

The house

Well this moves on now at a fast pace I am happy to say.  We have builders, joiners, plasterers etc crawling all over the place.  One result is that when the digger was in digging out for the paths etc we saw this as an opportunity to go in and pull out all the bushes that had been in what was termed by the previous owners as the Secret Garden.  None of the foliage in it would have worked with our terrace and he thought of digging up all those roots was just too much.  In ten minutes he went in and lifted them out and then pulled all the earth we needed shifting into situ.  Well pleased with this.  

We are almost at the end of ordering all things needed now by the builders and fitters  Just the smaller things to think about such as lights etc.  We did worry such a lot over the internal doors and have changed our minds again and gone for something so far away from our normal but feel that with this house they will work very well.  The granite we chose for our kitchen we actually saw in situ last week on a display kitchen and HATED it!  Fortunately we have been able to ring up and sort this out.  Monday we will go over and choose a different one.   So relieved we saw it like this as we would have found it to difficult to live with once competed.  The kitchen was to be delivered next week much to our horror but fortunately there was a mix up in Germany between them and the delivery company so now will be delivered to another address in Manchester.  When we are ready it will be delivered to our new house.  

There is not a lot we can do there right now so we intend to work out how best to fit out wardrobe which is very big so we have a lot of scope to deal with it on that front.  Here is a picture from the dining room window, excuse all the builders mess but the views are stunning so we can't wait to get in.

Izzy

So proud of this little girl who is doing so well at her piano lessons that her parents have decided to send her for some private ones.  How I hope this is a talent that grows with her and not a flash in the pan, would love to play the piano myself.   She had a fall three weeks ago after her swimming lesson and though grandad brushed all the dirt off her as soon as he could and her mommy washed her well when she was home she still must have had some dirt hidden deep in her thumb,  This caused her a lot of pain and though it was bathed often in TCP  it continued to be a problem.  It is beginning to get better after being given two lots of meds by the doctors which is a relief to me as i know sepsis can enter the body by something like this.  She gets excited whenever she sees changes to the house and is looking forward to her bedroom being decorated. 

I am so sorry for not  being  around for some time but I know you understand how it is.  Pain is an evil thing and I just found it hard to cope with it. Thank you so much for not abandoning me, I had so many messages, both private and public and also long telephone calls, it was very kind of you to continue to ask how I was feeling.

I send warm love to you all and once again hope you are all doing as well as can be.  The weather is glorious here so I am going to take a shower and go and sit in the park. 

Carole xxx 


Monday, 14 May 2018

PH THE SEARCH GOES ON

Seminar for new insights into pulmonary arterial hypertension

How I would have loved to attend this particular seminar.  It is being held at the Royal Brompton and Professor Martin Wilkins from the Imperial in London along with Stephen Wort from the Royal Brompton are talking about all their ideas for new treatments and of course their hope to find us a cure.  I was fortunate to be in the care of Martin Wilkins for the DCA trial and I know well his commitment to bringing us all a cure for our shocking disease.  Sadly we have decided it will be just too much.  A trip to London from where we live is not just a couple of hours car ride.  It would also mean staying over in a hotel and we just cannot afford the time as our house continues to take that up well enough.  The parking sounds a nightmare at the hospital and the trains and tubes can be very tiring so we have decided to give it a miss.

I am reliably told that there are still lots of ideas in the pipeline and this debate is how to prioritise them.  I hope if anyone one of my ph family attends they will be kind enough to give us a brief synompsis of how it went and of any new ideas.  As ever so many are working hard for us to bring an end to this disease and I will always have hope until all the breath has left my body.  Never say never.

Link to Latest PH News


My little red rooster mask saved the day

OK so it makes people turn and stare, it makes Colin laugh but do I care, not a jot.  My red rooster mask as Colin calls it came in very handy last week when I went down to the new house.  As they were still plaster boarding the air was thick with the dust from where they were cutting it.  As soon as I stepped foot into the house I did an about turn and left to get my mask from the car.  What a blessing. It  meant I could go around the house, stay whilst discussing ideas and thoughts with the builders and still leave whilst I could breath.  I have never been so happy to look so daft before as this mask saved lots of further complications with any lungs.  So smile, or laugh or even ridicule, these masks are here to stay and another order will be made soon for a new supply.

Debate over children

In the UK I have seen a few articles over whether grandparents should be paid to take care of their grandchildren.  As ever there were for and against on this one.  I do "get" both sides of the argument but for me personally the reward is enough to see Izzy growing, being included in all aspects of her life and us helping to shape her future..  I am blessed to have watched her grow into the lovely delightful, funny confidant girl I see for two days each week and her sleepovers.  I think an occasional bunch of flowers is nice, just so you know that your efforts are appreciated and for me that is enough.

When I was down at the new house on Saturday she came out of hers holding a card she had made for me.  It was so sweet, a get well card.  I said how nice it was but said I am not poorly now though Izzy,  am better.  She smiled sweetly and told me to save it for when i was next ill!!!

I was sad to note that there is still bullying going on in playgrounds for children with red hair.  Quite why people bully over this I have no idea as red hair is stunning.  We have a grandson with the red hair and I also had a friend who had beautiful red hair.  We went on a cruise and often people remarked on how lovely the colour was.  How sad to see that children are bullied over such a detail.  Bullying can destroy a life, sometimes even leading to suicide as we see is happening more and more nowadays.  Beautiful lives gone in an instant, all that potential lost because of some sad person or people being awful to them.  It hurts me to read this and I wish we could stop it but I do not see how.  I pray Izzy never gets bullied and continues to have a happy school life ahead of her.

The house

Well what can I say!!  Colin works so incredibly hard on this.  This weekend he was digging trenches ready for the gas service to be fitted.  It was made particularly hard as the trench had been dug previously by him but as ever builders rubbish and been thrown into it, big lumps of concrete and bags of sand etc.  Where cement and sand had lain together as it rained of course it turned it into a solid immovable mass that had to be pick axed into pieces before being taken out.  I hope today things come to fruition and he can complete it to the satisfaction of the gas board and then that is another job put to bed.  Izzy came out to help him with a fishing net and her gardening gloves on, yes very helpful Izzy.

We haver chosen and ordered all the new electrical equipment for the house except for the extractor.  We do not seem to agree on the style of this one so we will keep looking.  The doors, oh those internal doors - we need twelve and it has been a nightmare choosing them,  do we go for a nice grey colour as this seems to be the trend, doors with strips of aluminium in them are also all the range now.  We have oak doors here and so want a change so they were out.  Think of the painting if we go for white doors, the list goes on.  At last we decided on a really lovely door, yes white but a little different and we are having them pre finished.  This means six or seven coats of paint are applied in the factory and the result is a door so smooth that can take knocks more than if we painted them twice.  We think it is worth the money as the thought of all the work getting these doors to a lovely sheen would be a nightmare.  Oh to be young again when things like this were not of any real consequence, we had the stamina to do anything.

A plasterer arrived to check out the house and to give the builder a quote.  It was gratifying to see him stay and look at the views from the various windows and tell us how lovely it was.  It makes me more determined than ever to get into this house and enjoy all that it has to offer.

Karma - for sure

The day has been so gorgeous I decided to go and see what was happening on the canal.  Lot of boats but not many people walking at all which surprised me.  All was still and peaceful for a while until I heard a lot of shouting behind me.  I turned in surprise as they were shouting so loud to see two men on bikes racing each other on the side of the canal!!  Sheer lunacy.  Well I was not going into the brink for sure over these two lunatics so i moved closer to the verge and away from the canal side.  With shock as they came by the side of me I heard a squeal and a clang and clatter and one of the bikes, along with its owner went head first into the canal.  How on earth his companion managed to not follow him is a surprise as he was right on the edge.  In an instant the one in the canal was cursing and attempting to get out of the water whilst his friend laid his bike down to help him.  What did surprise me was their ages.  They could not have been less than 30 year old each, maybe more.  Now maybe stupidity can be expected in the young who have not been taught better but the sheer madness of these two was beyond me.  I left them to it and continued.


Not too far on from this I looked into the canal to see a baby pigeon flapping its wings and wandering all over the water.  It clearly could not fly out so obviously something was wrong.  A couple were headed my way so I told them of my dilemma.  I clearly could not leave this bird to die, it was in distress.  They agreed and we three waited until it flapped its way to the side where the young man carefully reached down and lifted it from the water.  What an awful sight.  It had obviously been badly hurt, attacked by a crow maybe but anyway all its head was in a terrible state.  There was no way the bird was coming back from this but I have to confess I could not ring its neck, not even to stop its distress and neither could the other two.  Awful though it sounds we left it settled on the verge in the hope that its end came soon or somebody else saw the state and could do the deed.  Goodness I do not kill spiders, I lift them carefully and take them outside.  This has left a sour taste in my mouth I confess and I hate my cowardice but there it is, I am being honest.  Poor baby bird.  

Hope you are all taking advantage of the good weather we are having as I believe it is going to change by around Thursday.  I intend to make the most of getting out while I can though the heat really gets too much for me.  I just do what I can then hoe to rest.  Enjoy it doing what you can.

So all for now and I love you all and leave you and say many many thanks for bothering to read my rambles and for the comments and the likes.  

Warm love

Carole xxx



Saturday, 28 April 2018

SAD DEATHS OF TWO MUCH LOVED PH BROTHERS

Goodbye our ph brothers

We lost Glenn Shakotko and Pete Duffy recently. They both suffered from pulmonary hypertension. Once again it sent much sadness around our communities and much hurt was felt by the many that knew and loved these men.  So once again we all live with the horror of losing more and more of our ph family whilst waiting for a cure.  I KNOW they are working hard for us but a cure even if it came tomorrow is too late for our ph brothers and sisters lost to ph.

I never knew Glenn but I do know by the shock waves that went across our community that he was a very popular man in the world of ph.  I believe he had fought for 15 years this terrible condition.  He did not let it stop him though and he lived his life to the full, I know he was an amazing shoulder to cry on for many of his ph friends.  Apparently he was always happy to talk and to give advice to anyone that needed him.  So why must we keep enduring these losses, all good people, ones who make a difference.

Pete Duffy

Now Pete was one of our own here in the UK and he lived not too far away from me. We talked often,  sometimes by telephone but mostly on our forums in the long dark lonely hours of the night when all kinds of demons come out of the closet, scurry into our heads and make us have a need for somebody facing the same issues.  How many times would we open our computers in the early hours to see Pete "talking" to other ph friends.  Often he would tell us he was feeling hungry!  So would begin conversations with some of our other ph brothers and sisters who could not sleep.  Pete would often worry about his two precious girls, he was so very proud of them and feared leaving them without a dad.  Suffering with other issues Pete struggled for quite a while before his body said it was enough, it was time to leave this earth.  His loss will be felt by many on our forums here in the UK and further afield by those that were friends with him.  

So what kind of low life are you.

Some low life went into our new house and cut out all the electricity cables, likely for the very small amount of copper in them.  At best they would not have been paid more than £10, though the cost of new undamaged cables is of course expensive.  They would have had to take time to strip it and then take it to a place that buys copper.  Hardly seems worth the effort for them though of course it took our electrician hours to put all the cable in place. 

After they had completed their theft one of them then decided to poo in the jumper left by one of the builders.  No doubt their small mind thought of how funny this was!  Now all the work needs to be redone again taking time and money to get it back to where it was before.  { the builder said he had heard all the poo jokes ever written since this incident} !!

A lesson learnt but too late.  The builders had been told time and time again to secure the house.  Our windows were in but we did get the fact that they wanted to leave the doors until last as lots of going in and out with work tools  would be going on in the house and they wanted no damage.  They were supposed to block off all the entrances with wood, keeping only a small wooden door for the builders to get in an out.  Maybe they were too intent on doing the jobs inside the house but it has cost the building company dearly.   On the positive side the wooden doors have been fitted all around now which leaves a secure house as long as nobody leaves a window open.

We are led to believe it was kids, the height they cut the wires was not too high, no ladders were used, though there were plenty around.  A professional thief would not have left a scrap of wiring in the place.  I hope this is not a portent for things to come.  The area is a very good one with beautiful houses, I pray we are not seen as an easy target right now.  For us it has not cost anything. the onus is on the builder to insure the property whilst it is being built.  I hope we do not encounter another incident such as this again.

Getting better

Life has been pretty awful for the last two or three weeks.  After my trip and overnight stay at the hospital I hoped all would soon be over but no, I was slammed with an almighty chest infection.  I took my emergency antibiotics but they were having no effect really.  A visit to the doctor and he gave me some different ones that make me feel pretty bad, cause sickness etc BUT they are working well with my infection.  Only another three days to go on them thank goodness.  

It is rare I get scared with illnesses and my ph but I admit that this time I actually did.  Being immobile in bed, too much effort to do anything but to try to get breath into my lungs made my mind wander to a dark place.  I could not get out of bed without help, could not wash etc and the effort of holding anything was too much so not even all you guys on Facebook to connect with!   I ate the bare minimum which concerned Colin but the effort it took was not worth it to me.  

I thought about death, I admit it.  I did wonder if this was going to be my end. I know chest infections can mean the end for us so of course this came into my mind.  I wondered who would miss me, the family and friends who I no longer connect with, would they miss me when it was too late?  I worried about Izzy.  Would she remember me, had we done enough for things to stick in her little brain that there would always be a small part of it reserved for me.  Of course my children came into my head, thick with a headache so bad I felt I could scream.  Would they ever really know the depth of my love for them.  I wondered f they would still miss me years later as I miss my own parents.  I wondered if I would die without them by my side, without that final hug or touch of a comforting hand. 

Strangely enough I was not scared of death, in fact at times as my compromised lungs were screaming for the next intake of breath that barely touched them I would have welcomed it.  It just seemed too hard to keep going.  But bodies are remarkable things and the healing properties it contains gradually made little dents into my fluid filled lungs, daily I could feel myself improving, though only marginally at first until I woke today feeling a lot brighter.  Yesterday though I was hit with a sickness bug!!!  Well not a bug as it did not last long but boy did it slam me.  I barely made it to the loo where I was left on the floor a shaky mess.  I could not stand up afterwards despite trying so hard.  I think my body had needed time to recover from my infection and this last assault was just too much.  Fortunately I had my phone with me so I rang Colin and asked him to come home.  In minutes he arrived and helped me to my feet and to my bed....... again! 

We will now see what today brings.  I am up, though not yet dressed but obviously fit enough to be typing this.  My next task will be to order all the new electrical equipment for our new home.  I know that we will not need to take delivery until the time is right but this is a job I want putting to bed so to speak.  It is a job I can take care of as Colin has to deal with so many.  

Today the last of our holes for the air intake system we will be using will be completed.  In around one week all the scaffolding will be removed from around the house as all works will be internal only.  

I know the plans have been sent off to whoever it is that deals with our underfloor heating and I know the final level of the said floors.  Plumbers have put  in essential pipework etc and the house is so fully lagged you would not find an inch of space to add more, even the garage is fully insulated with this space age stuff they are using.  Our bifold doors came yesterday and were fitted and I am told they look really lovely.  Holes have been cut into the walls to enable us to have the fire we struggled to find a solutions for before in a sealed house, we found one!!  So daily an army of men go to work on bringing this house to completion.  One thing if any burglars try to get into the house again they will be in for a nasty shock now as the builders have fitted temporarily devices that would take pictures of them and alert the authorities.  Wish it had been done sooner but I feel a bit more reassured now.  

Once it is finished I intend to have all the new gadgets that show if anyone is lurking around your property wherever we are.  I have no reason to think it will be needed, the area is a good sound one, the thieves likely being opportunist kids, but the truth is nowadays nowhere is safe.  How sad that we live in a world where people steal and destroy others peoples property.  

Malham 

I want to escape!!!  I think both of us could do with time out.  As May day is coming up we want to avoid that like the plaque, too many people around to be able to have a nice peaceful time.  I have been looking at places we have been to before and really enjoyed.  I always remember Malham and the peace of this place with so much of interest surrounding it.  Malham is a village set in the Yorkshire Dales.  Rolling hills greet you and limestone landscapes surround you here.  Yet there is so much to do if you want to explore.  For those who enjoyed Harry Potter the cliff just half a mile away from the centre was the backdrop for the Deathly Hallows.  Just over a mile away is Janet's Foss,  a truly wonderful waterfall reputed to be the home (behind the falls) of the Queen of Fairies.  So for the whimsical ones such a lovely place to visit.  The pool was originally used to dip sheep in many years ago but now many a travel weary walker has stopped to take a refreshing dip here. 

For walkers who enjoy a scramble my husband and I walked through Gordale Scar and enjoyed such a beautiful valley and limestone ravines, well worth the scramble at the end.  To top off the wonderful place there is a glacial lake called Malham Tarn. I have eaten a few picnics sitting by the side of this tarn in my time.   This tarn was the inspiration for the book The Water Babies. A Fairy Tale for a Land Baby.  This is the highest lake in England being 1,237 feet above sea level and only one of the eight upland alkaline lakes in Europe.  

So you can see why I simply must go back and hopefully this coming week.  I know I cannot explore it all as fully as I have in the past but I intend to see and do as much as I can.  The last time we stayed we resided in a lovely hotel called Beck Hall and I want to go there again.  The history of this place is so sweet.  It nestles by the side of the river and it used to be a wayfarers hostel back in the 1920s.  Years have rolled by and now this quaint cottage has grown to become a truly lovely place that has the most beautiful rooms and an amazing menu to enjoy after a day seeing the sights surrounding the area.  If anyone fancies going here that owns a dog then know that it is a dog friendly hotel.  Why I love this place is that it is set in such beautiful surroundings and if it is not a day to explore due to ph the gardens themselves are so lovely to try to meander around.  sit and listen to the river tumbling over rocks while you rest a while.  Go and try it, you will not be disappointed.  

So hopefully when Colin returns today I will be in a position to know if it is feasible, if we can go away in the next few days or if the house will once more demand his attention.  He is thinking not but  the house keeps throwing us a curve ball!  We shall see.  

Tour de Yorkshire

This bike race begins on the 3rd to the 6th May, with the final stage passing within 200m of our home.  Colin will go to take pictures of them departing from our famous Piece Hall, newly renovated and attracting lots of visitors it is a perfect place from which to start  I wish them all a great race and a safe outcome.  Watch it if you get a chance, we have lots of hills around here to test them and the most amazing countryside.  

Izzy

She has won another award from school and so wants granddad to go and see her receive it.  Though I would love to go I think I need a day or two to come around from my illness so i will spend the day pottering and dealing with kitchen stuff as I said earlier.  Izzy is upset already at the thought of leaving her teacher behind when she moves up a class, she declared him to be funny too, something she believes her next teacher is not known for!!  So already the dread of a new class is looming for her.  I know she will be ok when the time comes, children are naturally  resilient and she will forge ahead when the time comes.

In the meantime she continues to be very happy in our company and enjoys staying over with us but the most heartwarming words were spoken by her a few days ago.  My daughter rang to say that neither her or Chris  would be home when Izzy arrived there from swimming so would Colin use his key to go in and, of course, sit with her until one of them returned from work.    Izzy rang me and said "grandma I am home and neither of my parents are here".  Of course she was fine with granddad but was just making a statement BUT what a statement.  She did not say mommy is not here, or Chris is not here but BUT that neither of her parents were there.  My heart soared as it means the three are now family.  Chris is no longer the outsider with her but has become her parent!  His hard work at showing her he loves her has paid off,  so this family unit is now strong.  She tells me she loves Chris and I can see it when I see them together.  I am happy!!

Enough from me now, I must away to attend electrical things!!  I hope you are all doing ok.  Enjoy the May Day for those in the UK,  I have not looked to how the weather will be but whatever your plans enjoy them.

Thank you for reading and for those that advised me on various things through this recent illness your help, as always, was invaluable.  

Warm love

Carole xxx




Monday, 16 April 2018

RESUSCITATION - TO HOME THANKFULLY

Thank you all for your well wishes after my weekend spent in my local hospital.  I was very touched once I arrived home and read them all.

I am ok.  I need a little rest before I get back to my normal ish self!  We know well with ph the blips we encounter along the way and this was one of those, though very scary at the time.

As with most of our turns they arrive without warning, mine certainly did.    Colin was talking to me in the car and the sound of his voice was getting unbearable as my head was ready to explode.  I felt sick and my heart hurt and also down my left arm and shoulder.  I must have been squirming in my seat and Colin looked over at me and said my face was vey red with traces of grey. We were on our way to an office to sign some papers and I thought by the time we arrived I would feel a little better. .  

By the time we arrived at the office my legs just did not want to walk.  I sort of shuffled in and sat down as soon as I could.  A drink of fruit tea was given and I thought I would soon come around.  No chance.  However I am not one to give in so insisted we went to look at a form of security we were going to get for the house after we had signed the documents at this office.   I really should not have bothered as I could barely stand straight, I kept bumping into Colin as I swayed whilst standing.  We aborted that job but Colin had to practically carry me to the car and I could not get in my seat myself, my legs were turning to jelly.  Once in I actually asked to be taken to hospital.  I hate this as I knew it meant the end of any hopes of a holiday abroad for a whole year.  We are always asked if I have had any unplanned hospital visits in the past year, planned ones are ok but unplanned means they really will either bump up the insurance or not insure at all.

As Colin was taking me into hospital in a wheelchair I said I thought I was going to faint.  I felt so bad.  Once in a room with somebody taking notes I just felt myself going. Before I knew it I heard the man saying crash and without ado I was wheeled around to Resuscitation.  They got me onto a trolley and wired me up to all the monitors.  The problem was they do not have a clue about ipah and tried to give me nitroglycerin, a definite no no for me.  Then this doctor ( who appeared to have no empathy for anyone in these bays ) said I must have 100mgs of Viagara, Once again I refused as I had only had one an hour before.  The next thing they tried to give me was warfarin.  I explained that I already take 5 megs daily so he went away and came back with something else   Called Gopa something or other.  I just took it, I was beginning to give in.  I had already told them  I was not to take opiates as I was intolerant so he said I could have morphine!!!  Again  I refused.  My oxygen level kept dropping and the beeps kept going off  They lowered my bed head and raised my feet.  After 2 E.C.G's , an X Ray etc they could not see what the problem was.  I tried to tell them it was my pah playing up.  What could they do though, nothing really.  They could not make any sense of my blood pressures as they kept rising high then dropping really low. 

I think what happened was my levels in my lungs must have risen sharply and suddenly to a degree that my body just could not cope with it.  This happens with us, we know that and even our specialists have no idea quite why they go up and down as they do.  Generally we cope with it ourselves but as this was particularly bad we felt the safest place to be was in the hospital.  They were reluctant to ring my specialist hospital, quite why I do not know but there it was  We must have asked them three times at least but our words well on deaf ears.  

In time I was taken to the coronary care ward and put in a room on my own.  My arm began to bleed badly where my catheter was as by this time I was way overloaded with warfarin and the other drug that acts the same.  There I stayed.  At 9.00 pm a nurse came in with 100mgs of sildenafil.  I refused as I had my own but she tried to get me to take hers and not mine.  I explained that I cannot take that particular brand. 

Back in 1989 British Pfizer scientists created a drug called sildenifil citrate as they believed it would be good for controlling high blood pressure.  They coated this compound and marketed it under the name Viagara.  Once the patent ran out, or in this case a deal was made with other companies to make this drug then other generic brands became available called sildenafil.  All well and good and a very good cheap option for the NHS saving over 10 million pounds a year when those taking Viagara were put onto the sildenafil pill instead.  Sadly the coating used by the generic forms made me very poorly so I had to be put back onto the original pill, the one made by the scientists who created it and called it Viagara. My local  hospital had the generic ones and anyway I always take my own.  I think I was an enigma to the staff as they were batting in the dark with an illness not known to them  I did have a couple of doctors come in and ask if they could listen to my heart as they had never heard a second heart sound as ours has. 

A very restless night with them coming in and taking bloods etc and another tussle in the morning when I had to refuse their meds in favour of my own.  I know it is absolutely not their fault, but I was feeling frustrated as they would not ring Sheffield!  In the afternoon a consultant cardiologist came in to see me.  He was really nice and was shocked he said when he learned what they had given me down in resuscitation.  It was no surprise to him then to see the state of my cath site due to being overloaded with meds for my blood.   He listened to my heart, checked my ankles, which were still slim so not water logged and of course as always looked at the right side of my neck.  He expected it to be bulging etc but it was not. 

He admitted he was at a loss as to what to do to help me.  He wanted me to stay in another day as my colour was still high and my legs very weak and wobbly.  Colin and I talked and decided we understood pah better than them and now the crisis was over we could deal with it at home and at rest.  Though the doctor  agreed that we knew better how to cope with it than they ever would ( and this episode absolutely showed us we were right  ) but said at least if anything went wrong I was in the right place in the hospital.   I did not say it but I thought differently.  Had I taken all the drugs they tried to give me in resuscitation I think  would be dead or in a very poor place right now.  

I understand what they were doing was the correct thing for somebody having a heart attack, but not for me.  They did their best, their intentions were good but my faith was lost.  Had they made a phone call to Sheffield as we asked I would have more reassured that they would listen to others that knew my illness better than they did.  We promised if I felt bad again I would go straight back and we went home and I went straight to bed.  

I had a good nights sleep and I feel I am coming round again,  not well enough for a walk yet, staying put at home is my only activity for the day but I do feel relief that this crisis is over.  

Hopefully tomorrow we will be going to a granite factory where we can choose the piece we want for our new kitchen.  It all seems overwhelming does the house right now, maybe that is what tipped me over the edge so I have enlisted my daughter to look out lights, pendants etc we need for all the rooms.  It sends my stress levels too high which we know is really not good for us.   Anyway she has really good taste so I know  I will not be disappointed.  

So that is all for now, just wanted to update you all and to again thank you so much for messages of well wishes and support, it means such a lot.  Colin was astounded to see all the messages but I said that is what we do, we support each other! After all we are a rare breed and nobody knows better than us all the vagaries that come with our very rare condition.   

Love to all

Carole xxx

Wednesday, 11 April 2018

THIS IS ALL MY FAULT. I am an idiot.

I cannot believe my stupidity that brought  me to how I am right now.   Something so very simple has knocked me off my axis and flat onto the floor.  I deserve this as I knew the rules about ph, knew what we could and could not do safely.  So why did I disregard them and think I knew better, that all would be good.  The only good thing about any of it  is that I thought I was doing good, believed I was helping my friend.  So now I pay the price and am waiting until my PAH stabilises  ( hopefully).

I have an iRobot vacuum cleaner.  I call him Robert and he has done an amazing job for me over the last thirteen years, working really well with very little maintenance.  His battery needed changing, a cost of £40 so I decided to have an upgrade of him and get one of the newer models.  I was telling my friend this and she asked that I give her my old model,  of course she would pay for the battery.  My new iRobot arrived as did the new battery for my old faithful one.  I changed the battery and cleaned Robert so he was sparkling and ready to hand him over to my friend.  She was too busy  to help me as she had a crisis on, and as Colin was very busy in our new house I decided that as I had been doing so well with walking etc I could do it.  I could bag up Robert and all his paraphernalia into two bags and take him to his new home.  She lives opposite us virtually in the park and up three lots of stairs.

The stairs would have been ok but the weight of Robert was not doing me any good.  I could feel myself getting palpatations as I climbed each stair and halfway I truly thought I would faint.  I could barely see, my vision kept going odd on me.  On reaching the top floor and her house I threw myself onto the sofa.  She was very busy trying to sort out a scam from Talk Talk so I just sat until I felt I could get myself home.  My bed was an absolute MUST place to be and there I stayed until Colin arrived home. As I told him what I had done he was rightly cross.  He would have carried it over himself later.  I truly believed I would feel better today but I really do not.  My legs are very shaky and my head very swimmy. My hope is that I have not put too much strain on my heart that it has caused irreparable damage,  Time will tell but I know for a fact I will never make that mistake again.  My life is more important than getting a vac to an elderly neighbour.  I will learn to say no.  My specialists know much more than I do about the can and cannot of ph.  I have learnt a valuable lesson.  No matter how well I feel I am doing I must still obey the rules of ph, I am not invincible.

( Two days later and I feel ok  I actually walked to our new house so I managed to get my steps in, feeling thankful)

Izzy

I took her to see an eye specialist as she seems to be leaning closer over her books wherever we read.  As I had my first pair off glasses quite young I am aware that even young children need eye tests early.  I have since had my own eyes lasered so have no need of them but she just might have.  Izzy was very nervous but she need not have been  The specialist has a girl of his own aged 7 so knew well how to put her mind at rest.  She did really well and at the end of the appointment he told me that her eyes were good, in his words they were 20/20 or even better if that was possible.  Now how can you get better than 20/20 I just do not know but anyway we all left feeling grateful that she is O.K. though she was a little sad as she quite fancied glasses!  So different to my day when we had the awful national health ones thrust at us until such a time as parents could afford something better.  

Her usual holiday in the motor home came to a disastrous ending after just one night.  Sadly all the rain meant the sites were getting very boggy and the first morning there was a knock on the door and a kindly warden told them that they were evacuating the site, all had to leave as the rains continued to creep up ever nearer.  Home they came, van unpacked again and as Colin was telling me all that had gone on, how hard he had tried to get another site Izzy just ran over to him, threw her arms around his waist and said "never mind granddad you did your best"  I am so thankful she accepts things easily.  Right now she is in Centre Parks with her Nana Joy and Harrison  being thoroughly spoilt and having a super time.  

She has been thrilled to see that the nesting box she made herself last year with granddad is now in use.  There is a family of Blue Tits using the box, the mother is in and out so there is much to look forward to when the eggs hatch and the babies appear.  We love her to appreciate nature but the cherry on the cake was that it was the box SHE made for her garden.  Still not got around to helping her to make a nesting box for a hedgehog but I think it will have to wait until the house is ready now.

House News 

Well this is really moving quickly now.  Upstairs electrics all in, all the insulation and windows are fitted and now they are plaster boarding the second floor.  Colin is very busy with the air control system and he has worn his thumbs down almost to the bone with the concrete.  His drill was not up to the job of some of the work so I treated him to a new one, a stronger, more robust that will easily go through the walls like butter.  He thinks a couple more days and his job will be done.  I know he will feel relief as this is a job never attempted before, very new to him and he has had to feel his way carefully so as not to upset the balance of the eco part of the walls.  I feel a little guilty as today is his birthday and he is working hard and getting very dirty doing this job but it as to be done.   It is not something I could help him with either which makes the guilt even worse but there it is, soon be over and our new house will all have clean air in each and every room on the hour every hour. 

When you get taken short!!!

Most of us with ph take some form of diuretic as our bodies struggle to do the jobs normally taken for granted.  Our organs are all compromised so we accept we need help to cope with certain functions.  I take 4mgs of frusemide daily to help my body expel fluids and it works really well.  On the days I intend to be busy in the mornings I leave it and take it later in the day.  However some days I forget this rule and take a tablet then pay the price, needing to keep running to the loo.  So this made me smile the other day as I was walking on the canal to my church.  Sitting nicely at the side of the canal some wag had placed a toilet in all its glory!  Now it will not stay there for so long as we have amazing people that keep our river and canal clean and neat.  For me though it brought a smile to my face as right as that moment I was just thinking I could do with spending a penny!  I think that the ducks and geese would not bother me whilst doing it but the thought of the walkers and cyclists definitely put me off the idea of making use of the facilities!!  I waited until I reached church.

PH News

I know I bang on about trying to exercise when you can, hard with ph I know BUT the benefits of managing to do some has been proven.  I also take a turmeric capsule that contains the curcumins that we need to help with our joints.  Like most patients my joints did suffer badly but I needed to share this with you.  Once taking the turmeric for the last two months I have felt such a benefit.  I take just one a day as this particular tablet tells me to take, I have LAMBERTS  High Potency but I am sure that any health food store can direct you to other brands.  Along with that I take Vitamin D as this is vital to help our hearts I believe.  I take it in liquid form, two drops daily giving me the correct dose.  

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Anyway I digress this was to direct you to the Pulmonary Hypertension News Weekly Digest and an article that shows patients with PAH outcomes are linked to exercise.  Do not throw the book at me if exercise is totally out of your wave length, I get it.  I still have my duvet days, my days where lifting a cup is too hard but when I feel up to it I like nothing more than to walk, even in the rain with my face lifted up to feel the rain on my face.  I love knowing that my heart, which is a muscle of course is being worked.  My core is benefitting too and all my body feels so much better when I have managed to get this exercise in.  Walking with sticks {poles} might be helpful and we are told that you actually burn more calories using sticks as you are pumping your body more.  

To be honest the calories burned do not matter to me cos I need to confess I eat more when I arrive home!  It is just the sheer exhilaration of doing something that is helping my heart and as talked about in the Digest it leads to better outcomes for us all.  I walk on my own but I also have a friend who, if he is not too busy walks with me.  It always makes the walks so much easier and the steps just melt away.  It is also a good indicator of how you are doing as you should be able to walk and talk at the same time.  

Keith Andacky who was the first patient to have Denervation in the U.S.A.  has had his four week check up.  All appears to be going  well and he is already walking a little further than his test pre denervation.  I am sure we all wish for him to continue from strength to strength.  The more people with this procedure that do well it seems likely that in time it can be offered to many PAH patients.. I know for sure I have benefitted greatly thanks to this and I hope the same goes for anyone else who has either had it or is heading that way.    Always lovely to have a new option on the books so to speak.  

So there you have it  Up to date again.  Once again thank you for reading.  I almost thought about leaving Facebook because of all the mess they are in due to sharing our details to others.  I came within a hairs breadth of clicking off but then I thought of the benefits I derive from it, the PH Sites I am on, all the friends I have made and the fact that I would not be able to blog either so I changed my mind.  I do know that Facebook really needs to get its act together now though as it would not take much for us to just leave.  We need protection.  

Warm love to each and every one of you, go well 

Carole xxx



Tuesday, 27 March 2018

IF THIS STORY OF A YOUNG MAN DOES NOT MOVE YOU THEN NOTHING WILL

Opening my Facebook page this morning I saw the blog below shared by our Lyz Clements  It is written by Rob Scott, no I never heard of him either but boy, what an inspirational post.  A post that might, just might for those of you not on the donor list move you to getting yourself on it.  


Rob is speaking from the heart after a liver transplant.  I guess that what he has written is how most people would feel post transplant and would like to express their eternal gratitude for the gift of life to the family of the one who so unselfishly signed the donation register and the family that let it go ahead..  All Rob knows is the age of the young man that died and helped others to live, he was just 21.

As most of you on the ph website know Lyz herself was a recipient of lungs and is doing so well thanks to her gift.  When she posted this story her heart must have been full with the knowledge that she was given such a chance at life. So please read it, think on it and if you have not yet gone that extra mile and signed the donor register then please do so.  This might have been a blog written by a member of your family.  See how heartfelt Rob is about his donor.  This blog by Rob needs to be shared so I am doing my bit to spread the word.

What if?

Let us play pretend now and let us be totally honest with ourselves.  Set the scene.  You have been given two weeks to live, you do NOT feel poorly in any way so can be free to move around at will.  Money is not an issue, you have more than enough to do what you want to do so the question is - what will you do with your time?

A new day is not promised to any of us.  There is no certainly of a future, but of course we have the hope.  One can be fit and healthy and in a second that is gone, as is shown by the above written by Rob.  I suppose what I am trying to say is we must live life to the full always, never put off until tomorrow and all that stuff.  

I think I would hire a cruise liner and staff etc and pack it with all the people I love first and foremost, then follow that up with anyone I have liked in my life and entertainers galore to keep everyone amused.   With no thoughts for anyone about housework, or jobs etc all concentration would be on enjoying life to the full for all of us.  We could sail the seas within limits to places we have never been to before and enjoy all the new sights  and sounds  and smells of the different lands and the diverse cultures.   I wonder what you would do.  It would be lovely to get some comments back on this one.  

Newbies

I see lots of newly diagnosed people with ph feeling terrified of what the future holds.  How well do I know the feeling, been there done that!  I remember every missed heartbeat and the feeling that this had to be the end.  Every time my legs gave in then there was the sense that I would never walk again.    The pulling into my lungs the precious air I needed to survive.  Of course you are scared but......

Remember many of us here have been diagnosed for quite a few years.  The medicines are helping us and more are being developed.  We are moving on so fast in the world of ph.  OK granted it may not be as quick as you would hope but believe me in terms of new meds we are doing so well now.  Give them a chance, do not give in and above all else fight. Our illness is rare and misunderstood by many doctors.  Our specialist ph doctors are the ones with the answers so if you are in doubt about any treatment given by your local GP then check with your ph team.  There are many support groups out there now for people living with ph, join the ones appropriate to your form of ph and ask questions.  Somebody is always listening and will be happy to talk to you, you do not walk alone.  

DPD

My trusty robot vacuum is not performing very well, poor Robert but he is 13 years old.  He does a bit of a job when I turn him on but he quickly tires and cannot find his way back to his base to recharge.  I know I can buy another battery for him but there are more updated versions out now and I decided to go for it.  I found the one I wanted, paid my money and waited for delivery.  Delivery day was Saturday, oh bummer, but non the less I waited in most of the day until around 3.00 I received a message saying he would be delivered now on Monday.  Obviously the courier had more orders than he could cope with.   I did not worry and responded to the message asking that I be informed within an hour of its arrival this time in order I did not waste yet another day.  

At the allotted time I waited and sure enough the ring came on my intercom saying the carrier was here with my parcel.  All was not as I thought it would be however as he had a parcel for me that was not the one I had been tracking.  When I told him this he said he had another one for me on the van, oh good my new iRobot.  He quickly disappeared and I waited and  waited and waited.  After 20 minutes I realised he was not returning, he had done a runner!  I rang his depot and discovered he had left my parcel on the floor when he unloaded it to put in more parcels.  Now anyone can make a mistake, I can accept that but to be so cowardly as to run leaving me on my own doorstep for 20 minutes is not acceptable in my book.  Of course I rang both the company I ordered Robert from and the carrier company.  All will be sorted but what really riled me was that later in the day I received yet another message from the carrier company to say that at 11.45 they tried to deliver my parcel but I was not in!!!!  Things like this are not good for my stress levels.  If only he had told me the truth, I am a reasonable person, I have made many mistakes in my life.  I would not have done anything else but wait until the following day for delivery.  Instead by his actions he has heaped on his own head a telling off by the carrier company.  I think he deserves it for running away instead of explaining the circumstances.  So today I will collect my new iRobot from a shop that accepts deliveries, I will collect it at my own convenience.  I hope to never set eyes on the driver Malcolm again, if I do he will get a piece of my mind.  

Don't worry about Robert, he will get a second chance of life, I will replace his battery and pass him on to a friend that struggles to push a vacuum cleaner around so he will not end up on a rubbish dump, it is the least he deserves after all the hard work he has done for me over the years.  

House news.

It is certainly moving on. The electrician has been working putting in the wiring upstairs and the guys are quickly following it up with lagging.  Well the first lot of lagging as there is more to come  in an eco house.  I have walked the upstairs room three times now and just love the design.  Yesterday we talked to a joiner about the roof as the difficulty in an eco house is getting lights into the roof spaces, not easy but we are working round all the issues.  Some windows are in, some are not as they are not quite ready for them.

It is lovely now that things are coming together.  We received a call from our tile retailer updating us on where our tiles are now, on the seas coming to us fortunately.  Our bathroom is safe and is in storage, still not got around to picking things out for the upstairs one yet but all is in hand.  We know where the loo etc is to be placed so all piping is ready for when things should be fitted.  

It is all still very messy and still no plaster board up yet which will transform the place but my sense of excitement grows whenever I enter it, my imagination can now take over and in my minds eye I am turning a house into a home.  I spend time looking at colour schemes, internal doors, lighting etc. It still seems far off until we move in but the reality is now the roof is on things are moving at breakneck speed.  

Izzy

Izzy won an award at school again last Friday.  Though we warned her it was unlikely we could attend the church to see her presented with her certificate hope always looms large in her mind.  I decided that no matter what I really needed to go and Colin decided that he would go, though he would be late and would stand at the back of the church.  I saw her walk in and her eyes scanned the adults sitting in the rows and her face lit up when she saw me.  She actually had a seat right in front of me so when I looked behind and saw Colin had arrived I was able to give her a nudge.  Well talk about then the sunshine came out.  How her face shone, she gave him the biggest beam she reserves for him and once again all was well in her world.

Her weekend was very busy as parents and grandad and the two children went to see Dancing On Ice.  Most agreed it was not as good as previous years but I think they still enjoyed it.  Sunday was to be a day at Alton Towers with friends.  I know how she would love that as it is one of her favourite places.

I have been getting her goody bag ready for when she goes away with her grandad next week.  She always gets two new videos so that they can both curl up at night after busy days and watch half one night and half the next. I do not buy expensive ones, often I get them from a charity shop of get the ones that are two for £6.  I bought her a new card game, a couple of very tiny bags of sweeties, and I mean tiny.  I put  in a drink for the journey and a couple of pieces of fruit.  When she comes here she can see the bag hanging on the door of the cloakroom but she cannot reach it.  She touches the bottom of it with her outstretched hand and wonders what it holds.  She loves me passing it to her when she is in the motor home and strapped in ready for off.  Then the much longed for bag is handed over and her exploration of it begins.  Then I return to our place, a friend comes to stay with me and peace reigns again in our home! 

Well now you are up to date with the goings on here, much work to be done as busy times ahead.  I hope this blog leaves you all well and I send much love to you all.

Please please take the time to comment or like the blog if you do.  It makes it worth while writing to you all, it helps me to feel a connection no matter where you are in the world.  

Warm love

Carole xxx