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