I cant let them go - the ones we lost in battle to ph.

Having a clear out

I seem to have rather a lot of Facebook friends, some I have no idea of who they are.  I decided to do as many do and delete those that never respond to my posts.  On doing so I inevitably came across quite a few names of the ones we lost to pulmonary hypertension.  My hand hovered over the first one but I just could not bring myself to delete them.  I know they will never answer a private message again, will not post a reply or a question, of course I know all of that.  To delete them seems just one step too far for me.  Each and every one of them fought a hard fight against ph, they suffered tremendously and they sadly lost the battle.  This does not mean the they are gone from my thoughts.  Not a bit of it.  I think of them often and with a deep sorrow.  I did delete some people but not one that was lost to ph.  They sit in my Facebook account and sometimes for those whose accounts have not been deleted I look back and read some of the posts they sent, or blogs written.   I have decided they will stay with me as long as my page is here.  I think it is the least I can do for them, they are not forgotten.

This is a post I wrote March 22nd 2014, shortly after the death of one of our ph friends. I personally met Lynsey and we trialled a drug for ph together, one that has proven to help us in his battle for ph.

Been awake most of the night thinking of Lynsey and thinking of how this disease treats all of us.  We are all fighting this and refusing to let Death in at the door.  We push and push back at him to keep him out but Death gets stronger and stronger as our hearts and lungs get weaker and weaker and one day Death is too strong and beats us down.  Lynsey was a lovely person who fought this disease and laughed until the end.

This was posted three years ago and she is still on my list of Facebook friends  Lynsey Pegram is still missed today and is one of the reasons I just cannot delete the ones we lost in battle.  Her heart went into an unnatural rhythm and she went into theatre to have it shocked back into a normal one, she had been through this before.  Sadly and shocking to the ph world her heart did not recover and she did not come out of the theatre alive.  This is just one of the things we with ph have to deal with, such a  dreadful  disease that throws us curve balls time and time again.  Please be understanding of your ph family, it is such a hard disease to live with daily. 

Away days

We had booked for a two night stay in Castleton where we hoped to visit friends.  Though we did not see all of them we did meet up with two very dear friends we first met whilst on a cruise a few years ago, before I was diagnosed with ph.  How lovely it was to see them working in their garden and the look of surprise on their faces when we just turned up out of the blue.  We had a lovely time and did a lot of talking about when we teamed up on the cruises to do the excursions under our own steam.  We fared so much better than the ones that were herded around like sheep by the course ship operators.  Our talk turned to Herculaneum where we spent a lovely few hours walking around the ancient roman town that was destroyed by volcanic flows in the year 79 AD. We all had as much interest as each other when we were there so we were as excited as children in a sweet shop.  At the end of our cruise we vowed to stay in touch and we have done, meeting each other from time to time.  So this was a lovely start to our away days.

We moved on then to check out where we were staying.  Our accommodation was really nice and very spacious too.  There were two lounges, one small with a log burner and one huge one with, and this was a disappointment, an electric fire.  A tiny kitchenette was just off the bedroom and it was placed in such a position that I could watch Colin make me a lovely treat, a bacon sandwich in the morning whilst I lazed in bed, what a life!   This really is very rare for us to have a bacon butty so believe me I savoured every mouthful.

We needed to take a trip into a nearby town where we knew there was a shop selling the log burner we were having in our new home as the architect required its measurements etc. immediately!   Of course the brochure with the one we wanted was at home in our study and not with us for our away weekend.  Typically he rang us when we were visiting with our friends and said he needed this info immediately before he could get on with more of the design of our chimney breast.  Job done and the said architect furnished with all the information he required  we decided to then go across the country a little and visit Eyam.

For those of you that have not heard about Eyam it has so much history of sacrifice really.  The bubonic plague was rife in London, the year was 1665 and it was killing so many. One would have thought this tiny village, nestled in the heart of the peak district would have been saved.  Sadly this was not the case as in a parcel of cloth sent from London to the tailor in Eyam there lurked a deadly menace, fleas that carried this dreadful disease.  Two clergymen, understanding about how this would spread to the neighbouring villages persuaded Eyam to go into voluntary quarantine, burying their own dead and staying within the confines of their own village.  Such a brave thing for them to do.  Food was brought to the outlying fields and money to pay for the goods was put into containers filled with vinegar to make sure the ones delivering the food were not afflicted with the plague.  In just over a year the village lost a third of its population to this terrible painful death.  Once the plague completed its deadly work there were around 400 villagers left to go back to work and to their trade of lead mining .

Two people affected by this terrible disease were young lovers living across the river from each other.  One in the disease riddled village and the one in the opposite one disease free.   They dare not meet up close, they dare not touch for fear they would contaminate the other with this dreadful disease.  They met like this for many weeks in secret with just the river to keep them apart until one day the boy turned up at the usual place to realise she was not there and would never be coming again, she had lost her life to the plague.

We went on to visit the Manor House, built just 6 years after the plague by the wealthy landowner who gifted  this to his daughter on her marriage.  It has been owned by the family every since.  Though this place looks stark on the outside as you can see by the picture trust me there is much to see inside, again history very much in the making.  As we went into the old wash house we saw a plaque that told us that a servant girl named Sarah Marsh had committed suicide by throwing herself down the well in the centre of this room.  Though the well is now grated off it still looks a dank and forbidding place and one can only wonder what terrible thing had happened for this young girl to feel her life was worthless and that this is the way it must end.

Sadly we never managed to get into the village completely to see the church and the gravestones and to read the story of Eyam as I began to feel pretty unwell, (curse you ph!) but this is a place I really need to explore to its fullest on a good ph day.  I am so looking froward to visiting the museum that must tell so many things about the courage of this small community who stood firm in the face of so much adversity. It deserves its place in the history of the Dales.

We again went back to our place of abode via a small winding narrow road.  It was very spooky as the day was dark and wet, the trees stood tall and menacing on each side of the road, skeletal like and their branches were reaching across the road as if trying to seek an embrace from the other.  I couldn't help thinking of the lovers who met across the river!  When the spring really kicks in and the foliage arrives this bleak sight will be quite different, full of beautiful colours and creating a canopy above the road with the sunlight dappling through, for now though it was just creepy.

On our return home I asked Colin to stop and please take me a picture of one of the views, of Winnats Pass.

How anyone cannot be moved when travelling the road of this pass would be beyond my comprehension.  The hills towering above us as we drove along it is truly spectacular.  I loved seeing the sheep quietly grazing on the hills that looked almost sheer, it seemed a fete in itself for a sheep to even be able to stay sure footed on these hills yet there they were happily grazing away.  This picture cannnot do it justice and you will need to look online to capture the sheer height and beauty of these hills.

I have always lived surrounded by hills, I could never live where it is flat, each to his own etc but for me I need to see nature at its best surrounding me all around, to see the houses nestled on the hills that seem like they are about to fall down at any moment.  I live in a valley where everywhere I look we have hills all around us as we nestle here but the hills as we drive through Winnats Pass are so close and tower above us on each side looking so majestic, there are hill after hill and each so beautiful and just the one road leading through them all.  If anybody reading my blog is not too far and never been to Castleton and the Hope Valley I think I can safely say you would enjoy all that that it offers from its own tiny village to the surrounding treats such as Speedwell Cavern where, after descending a flight of steps, you sit in a boat that takes you underground to an amazing cavern, and on to Peak Cavern called by the locals Devils Arse!  These are a couple of the delights surrounding this very special place, Chatsworth House, the home of the Duke and Duchess of Devonshire and Bakewell, the place where the original  bakewell pudding was made are just a few of them.  Please go if you are able.  

Treasure box of memories again.

Mothers day is coming up, I no longer have a mom, not one living.  She, along with my dad, brother, nephew and grandparents aunts and uncles etc have died.  As I walk around the shops how I would love to be able to go about choosing a treat to let my mom know just how much I loved her.  I have instead though the memory box of treasures of each and every one of my loved ones gone that I can open at will and take out just what I need to remember the happy, and sometimes sad times we all shared.  This box will be with me forever and as it is all I have left of each of them I treasure it so much, filled to the brim, a never ending box of the most wonderful delights.  I still wish though I could show mum in person how very dear she was to me.

One memory of mothers day is of my daughter.  I was very poorly, not being home long after being diagnosed with ph.  I was not able to go out but I would sit at my window and watch the people in the park opposite. On this particular day I heard the sound of the huge, heavy latch being drawn on our gate and looked down to see such a lovely sight.  It was my daughter Danielle walking along the path with her very straight back and a beam on her face.  In her hands I could see she was holding flowers she was bringing to me for mothers day.  The sight of her smile knowing she was coming to see me and knowing how I would love to see both her and her gift have stayed with me and still bring a smile to my face.  This now sits in my treasure chest of memories along with the very real home made mothers day cards written and drawn  by both my children when they were young.

OK, I need to get on with my day as I am sure you do too.  Tale care each and every one of you.  I see my readers and followers are growing daily which pleases me so very much that you care to read the ramblings of mine.  I love the comments, again they continue to grow with each blog and I am so grateful for each and every one of them as it shows you really do read them and not just ignore the blog.

Much love to each and every one of you reading this.  Please click like if you feel like it, again it means such a lot to me.

Carole xxx