Nostell Priory, time being the operative word here!!!!

 Sunny days are here again

We decided to go and take a walk around Nostell priory, a National Trust property not far from our home.  We have been here many times and I used to take my children for picnics in the grounds when they were young.  Surprisingly as it is a very old house they deal very well for those with disabilities and there were certainly lots of mobility scooters and wheelchairs around and also a lift in the house. Most things were easily accessible. 

This house was built sometime in the seventeen hundreds and was owned by the Winn family.  It was built to show off the family's wealth.  The weekend we went was a special one as there was a display of two thousand clocks to remember a very famous clockmaker John Harrison.  John was the son of the estate carpenter and decided to go in for clock making as well as carpentry.  He invented the marine chronometer, a long sought after device for solving the puzzle of calculating longitude whilst at sea.  We owe this man so much as his solution revolutionised navigation and greatly increased the safety of long distance sea travel.  So if any of you love to take cruises then you can take your hat off to this gentleman for all he gave to us.

This house is crammed with Chippendale furniture, so many that we know for a fact there are 120 pieces, a desk alone worth millions all with provenances to prove they are his work and many other pieces believed to be his work but the provenance are lost.  Lots of pieces were also lost in a fire which is so sad  There are 20 pieces dotted around the house which are his works that can actually be sat on today so of course I just had to take my place and sit on a chippendale chair!  

Set in over 300 acres of garden and parkland if like me you love history, love seeing  the places come alive then you will love this place.  

With over 2000 clocks all together this certainly was a slight to see for sure.  They were all working and all set to go off at the same time, what a cacophony of sound that would be, we sadly moved on to another room before that happened.

If you ever decide to go and visit this house then another wonderful place to visit which is very close by is the Wakefield Mining Museum.

Now my children just loved this place when they were young.   Given a helmet to wear with the torch lit brightly on the brim we were ushered into a lift and descended 140 metres underground on a tour led by ex miners to find out just what we owe to the men and children that extracted this coal for us. This is a free museum and so unlike most that your children, or indeed yourself will have been around.  My children remember it well today and remember seeing the horses underground, of course in this instance not real, that spent their entire lives in the darkness.  You will see models of children that had to crawl on their hands and knee into spaces too tiny for men to crawl into and they placed the charges for the explosions needed to loosen the coal.  Many youngsters barely saw daylight as their day began whilst the sun was not up and ended when it had gone down.  They spent most of their lives covered in the coal dust that would have inevitably killed many of them before they reached too old an age as their lungs would clog up with the dust making breathing difficult.  What a world to be born into. 

When I remember this museum and I look at my children who would never have had to do such a terrible task I am so thankful that times have moved us forward with regard to safety issues and the age of the young ones working.  So much to see and do in the towns and villages surrounding me that we are so blessed.

Goodbye Mini

My car has gone for its first M.O.T. and in a couple of weeks it will be sold on to my sister.  We made this decision as we just do not need two cars but still, I will be sad to see this beauty go, a wonderful mini in the orange with the two stripes down the front and the black roof it always looks good and draws peoples eyes to it.  Ah well, my sister will be happy at least.

Brexit

No I do not intend to get into politics here except to say that it is a momentous day as the paper has been signed to trigger this, a day that will go down in history, not only for the UK but worldwide as all look to see what will be on the agenda now for the future of the UK,  I hope it all goes well.

Mothers Day

I hope all of you who are moms enjoyed a card or a treat from your offspring.  I received the biggest bunch of flowers ever, needing five vases in total.  I was shocked when I saw just how many my daughter had bought me.  Her card as usual was full of lovely words and she also wrote some special words of her own, these are to be treasured.  

A picture paints a thousand words.

Somebody on Facebook asked us to show pictures of when we were young. I am rubbish at things like this but I was searching out old pictures and came across one of me aged six years old, the same age as my darling delightful Izzy is now so I compared our faces, do we look alike, not a bit of it.

  

Nobody looking at these would ever put us as sharing  even a single gene  as we are like chalk and cheese. Isn't it lovely to look back on the old pictures of family times, the happy and sad ones we shared.  Life is so much easier now with phones etc to take pictures so easily.  It was a pricy business back in the day so we certainly do not have half as many as we have since the mobile phone and the camera that works digitally.  I am of the era where we took the pictures and then sent off our roll of film to be developed and kept our fingers crossed that they would turn out ok.  Oh the joy when we got them back and sat down to enjoy the memory captured on film, I have many many photo books crammed full with these pictures.  On bad days, meaning bad weather days, I can sit for hours and peruse these books and all of them make me smile.

At last

For the first time in weeks I have been told I do not have to visit my warfarin clinic for TWO whole weeks.  I generally go weekly.  As it is only around the corner it is no hardship but still to think I can miss a week, bliss.

This week was a bit odd.  All the computers were down, there was no water in the machine to allow us a drink and there was somebody that fainted!  The call came out "water please quickly" from behind the curtain and another voice from in the waiting room where I was shouted that there was none.  This necessitated a quick run to the nearest tap as opposed to the machine and I assume it was given to somebody and all was well.  I did see a girl come out from behind the curtain a few minutes later with a sheepish look on her face and a word to her friend who stood up from the waiting room to greet her that she just went over all funny and fell over!  All seemed to be well and I am sure this department has many people who faint at the sight of a needle.  

Denervation news

I have still not heard back about my MRI which I am a bit sad about, I would have loved to have heard something.  However I know this is a very busy research facility so I do understand and just think that I can hang on another two months when I have another MRI.  How do I feel?  Well much better to be honest and I actually have great hopes for this procedure.  In myself I feel stronger and  my legs have stopped the wobble they always had.  I am not saying I am ditching my mobility scooter, that would be madness as I know  I do still have my bad ph days but they do not  somehow seem as bad as they were and I am still feeling positive about this. Keep watching as I will post updates as and when I have any news.  

Right, I am about to order my new disabled persons railcard which expires at the end of the month, we don't often go on trains but it is still beneficial to have occasionally.  We got the original one when I was trialling DCA and had to go down to the Imperial College for some of the tests.  It saved heaps of money having this card and I am hoping that if I improve we can take more train journeys.  

New £1 coin

I tried to get some of these from my bank yesterday only to be told they do not have any   The closest place to us that have been allocated any is Leeds, not far away, my son lives in the centre.  I thought that I would like a few brand spanking new ones as we are about to take away all the old ones belonging to Izzy.  Never mind, they will come this way in the next few days I am sure.  They say they will be difficult to copy, what is the betting it won't  take long at all.  These forgers are very clever people and will quickly get the measure of them.

I am going now to begin my day.  I hope it clears up as I want to collect Izzy on my scooter seeing as how my car is at the garage.  I hope it does not rain, not a pleasant experience sitting on a mobility scooter with the rain pouring down I can assure you.

Haver a good day, thank you again for the comments, the likes and the shares.  You are stars when you bother to do that, you really are.

Warm love to you all

Carole xxx

    

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

I have a chance of dying today

I woke to a new day and thought about what I hope to achieve . 

http://johnpavlovitz.com/2016/02/29/on-the-day-i-die/

I also remembered a post (above) from a year ago that made me think about life and death so yes, I may well die today and so may you.  This post from the past brought it home to me just how we should view each day.  None of us are assured of tomorrow, though of course we have the hope.  I am not talking about the cloud that hangs over all of us with ph but everyone, the healthy and the sick.  The gentleman that wrote the attached said it all and it should make us view differently how we go about our day and how we should treat others.  It may well be that someone close to you does not have a "tomorrow " and the words in the poem say it exactly how it is,  He also ends with words similar to some I have used before about dealing with death but then putting it aside as now we live.  Something I so agree with.

On the subject of death I read in a paper that scientists have discovered that in some people even up to ten minutes  after death there is still some brain activity.  Not enough to go about life, of course without a heart beat that would be impossible but the kind of activity we have when we sleep.  They say that maybe this is why people who have "died" on the table and are brought back to life experience the dreams of meeting loved ones etc, of walking down corridors.  How I hope that this does not deter people from donating organs.  It may well make people stop and think when the reality is this person is still clinically dead and cannot sustain life,  We shall see if there is any comeback to them publishing this information.  

Cured of Pulmonary hypertension 

Yes how lovely it was to read that one of our ph sisters  has been dismissed from Royal Hallamshire as she no longer has ph!!!!  One can only imagine the jubilation on hearing this news at their house.  Rita Miller had an endarterectomy a few years ago.  Her operation was successful and now after around three years she has been declared ph free.  I am so thrilled for her and hope that anyone reading this blog that has the chance of this operation, scary though it is, takes up the offer.  Her type of ph was caused by blood clots in the lungs.  This is one form of ph.  Some people with this type of ph cannot be operated on as their clots are too distal, I have a friend like this.  Fortunately for Rita hers were not and so after a great deal of deliberation she had the operation,  What a success story for the world of ph. I am sure you all wish Rita well as she now goes about her life able to live it to the fullest since this operation.  

Tractors and roots

Gosh so much been happening at our building site recently.  The trees are booked to be taken down over a two day period in April.  This is a huge task and requires a few men for two whole days.  In order for them to be able to carry out this operation. As the wall around our land is old dry stone walling our concern now is that they may collapse when the trees are pulled down.  This would then require a man trained in dry stone walling to work with Colin to put it back.  We have no intention of removing walls built hundreds of years ago so must leave it as we found it so to speak and repair any damage that may occur whilst dealing with the trees.  Colin has been at the site daily cutting down all the huge, and I mean huge, bushes, edges, small trees, Cyprus trees etc.  He has cleared as much of the hedging as he wants to do at this stage and much is now open for the equipment that will be used. We had our friend Michael helping and he brought up his tractor  Pixie to pull out all the roots, they were so large and deeply  embedded it  needed the strength of the tractor and chains etc.  Lots were done but many remain so Colin continues to go to the site daily.  

Our main problem now is getting rid of them, the pile is as big as the house will be!  Skips won't be any good, we would require too many, do we use a chipper, well again not so sure so I am waiting for the council to get back to me to see if they can help us.  I wish they would get a move on as there is much to be done before our plans can go out to tender .  We can't burn it as there is so much sap it will be way too smokey and we would not wish that on anyone. 

Just got a follow up on this ....... Colin just rang.  The council has been down and looked at the pile.  The guy was pretty shocked at how much there was but for a fee, not as bad as we thought, they will take all the foliage and all the root balls, there is a huge pile of just the roots and they are very heavy.  Oh we shall sleep tonight now though we don't know when they will come they have said  it is imminent.  They have a truck big enough that crushes it all so we are blessed.  

Since that was written Colin has worked on and on and moved even more, making the pile ever higher.  All is now done and hopefully today the site will be cleared, then on to the two trees.  Progress is being made that we can actually see and the site has been tidied up and left looking neat so we do not offend any neighbours.  

Saturday.  Danielle just sent a message to say there is a lot of noise coming from our land.  Time to get up and go and see!!

Gosh, in minutes it seems they have got rid of a pile as high as a house, well done our council, now just a hefty but worth it bill on its way to us.  

Now we will have the problem when we get the house built of keeping our new garden safe from the deer that roam at will.  My ex boss is in despair over how many of her plants they have eaten and has had to put up really high fences to stop them jumping into various areas of her land. We don't want high fences, we want the spectacular views we will have from our windows and terraces so this is a problem we will need to overcome.  

The vagaries of ph.

I was so sickened to see that yet another person with ph has had her money taken away by the people that deemed she was fit.  They did tell her though that if she was depressed she would have been allowed to keep it,  when will they see that we change from day to day, from minute to minute.  

Just Tuesday I felt my day was a rich tea day.  I had at least got up and got washed, though not managed a shower or a bath.  I was in my  pyjamas when a friend called round and I got out of bed.  I couldn't say this was a wafer biscuit day though as I had at least managed to get myself so far before going back to bed.  She wanted to look at an apartment just a couple of doors away from me.  I know well the couple that were vacating it and they are lovely so I knew it would be ok to take her to look.  Well I walked the few steps to my neighbours  hugging the wall as if I was drunk.  On entering the apartment I let go of my friends arm that was holding me up from the side I wasn't hugging the wall.  I then sat on a radiator whilst my friend looked around the house.  Clinging to the walls I made it home again to the safety of my bed once more.  

So this is the world I live in.  You may well see me looking ok one day, or even one minute only for me to go "off" spectacularly the next.  So it upsets me when I read of some of my other ph friends being refused their PIP when they can show they can brush their hair or walk on a given day.  If we are to write down how we are on our worst day then the answer has to be we are just a blob in the bed!!!  We physically can't do anything and need help even to get to the loo.  The stress these tests cause our ph family is huge and they seem to fail to realise  that ph is progressive, we don't get better, just worse with time.  I wish somebody would open their eyes to the damage doing to these people before they keep heaping more stress and therefore more strain on them. 

I have a lovely friend who wants me to help her deliver leaflets for an upcoming event at our church.  Now whilst I would love to  she just doesn't  understand ph.  She thinks because I can manage to get around the supermarket with Colin sometimes then it will be fine and dandy for me to do it, I can't get through to her that in a supermarket the floors are absolutely flat, I have the trolley to hold onto to keep my balance and the air is not cold or wet.  Though these things seem tiny to her they are a huge advantage to us as it is a sort of safe environment.  She herself has had to collect me from this supermarket and drive my car home, take me to the doctor and then on to the hospital so I am surprised that she still doesn't "get it".  I live in a very hilly area where I don't believe there is one absolutely flat piece of land,  We shall see what she says when i try once again to explain to her my very real fear of "going off" when faced with the slightest incline.  

Two day  break 

Recently there has been an awful lot of stress going on with one thing and and another so we  have decided to go down to a lovely place for a couple of nights stay in a super little village called Castleton.  We managed, after a struggle to find a suite and it gets 9.6 rating.  It looks really nice and it does  have a tiny kitchenette should I not feel well enough to sit and have a pub  meal.  Colin is very handy at knocking a meal together.  I am really excited about this as we do have friends in villages surrounding this beautiful place so there is also the hope that we can get to see them.  We shall take my mobility scooter so that I can get around easily.  The weather does not sound as if it will be the best but if we get rained off we can always throw a few more logs on the fire and cuddle up and talk or play scrabble, a game we both love, Either way it is a win win situation as we leave all the stress of tree surgeons, house plans and minor operations due behind us.

Why why why!!!

One thing that drives me mad on Facebook is when we see posts from people saying they are in a black hole, or this stress is too much or simply can't take any more,  We are here for each other and though we do not wish to intrude on each other's personal space if they want things to stay close to their chest that is fine.  But if you want these things kept  private why broadcast how you are feeling and wait for us all to say sorry, can we help etc only  for them to not respond at all so we are left worrying about the person who posted.  I have personally written private messages to two people this week to see if I could help only to be ignored,  I then went back to the persons  post to see if they are ok only to see nothing!  So we worry about them and I feel pretty sure that sometimes the worry that got them down so much has left them and we are still feeling concern for them.  As admin I try to read every post, I take this role seriously and though I don't respond to every post I do try to make sure I do if there seems to be cause for concern.  I just give up!!!!

My rant is over as is this blog!!!!  We are expecting a friend over for a sandwich and a catch up so that will be nice, I will push Colin to post this before that as I know when the two of them get together they have so much to discuss. 

Go well everyone, I love the likes and any comments or shares.

Warm love. Carole xxx      

A brilliant ginger biscuit day post denervation

Denervation again.  Once again I completed all of my exercise regime, the class were so pleased they applauded me for it so I smiled at that.  Again I went on to do a small shop at my local supermarket on the way home.  Those these sound like very small steps believe me for somebody with ph they are quite an achievement, in particular as I had been told at my follow up that I had deteriorated since my  study for DCA.  Of course I knew this but it was so pleasing to complete this class. I can still feel my breathing being drawn deeper into my lungs.  I love this so much that I find myself just breathing and feeling how far it goes, it sounds odd I know but my ph family will understand, it will resonate with them.  

Spoke to number 13 who I knew had been eagerly waiting my last blog for news of my follow up.  It goes without saying that each day is a day eagerly ticked off on his calendar until the 27th of this month when he has his done.  I well know what it is like to wait  just longing for the day to go by,  a step closer  and his head will be a jumble of thoughts.  By the way for those of our facebook brothers and sisters his name is Harry Dagger if you want to see how he copes with this.  He also comes under the name David Garcia, I have his permission to use his name on here.   

We discussed just what life is like with ph and how difficult even the smallest task can be and we also discussed the straw test.  This is to try to show people not living with ph just how difficult our every day living is.  I have touched on this before but many will not have seen it so here goes if you want to give it a shot.

Place a straw in your mouth whilst holding your nose.  The only way you can breath now is through this small straw and believe me it is difficult.  Now try to do a small task, maybe walking upstairs a couple of times or, if you put a peg on your nose and have two hands free then a job around the house.  You will soon begin to feel your chest getting very constricted.  Now try and imagine all of your life living like this, we have no options.  We cannot take the straw out, we cannot unplug our nose, we are stuck with this  Our options are just this..... learn to live with it because it is not going to get better, it will worsen.  Many of us are not eligible for transplant so we do not even have that hope.  Those that are eligible will sadly never get the chance, not enough donors to go around.  Some that do get offered the transplant will not make the journey, the enlarged heart just gives in, too much pressure and it just cannot cope any more.    If they are fortunate enough to receive the new heart and lungs, or in some instances if the heart is not too damaged then just the lungs these people  live forever in a world where rejection is a great possibility.  

So there you have it, do we hope for the donor gifts if we are offered them and take all the worry on board that comes with them or do we try anything else that may just give us a glimmer of a slightly better life,  though this in itself comes with risks or do we just sit and hope that a new treatment that just involves popping some pills will be around the corner.  The pills we pop daily in themselves give us so many side effects, horrendous ones, so bad that some people just cannot tolerate these drugs themselves and choose to just let nature take its course.  We with ph are on a very rocky road and some will slip along the way and we will lose them.  This is why we daily look for any news in the treatment of ph and hope daily that the cure is found.  It will be found for sure but the question is will it be too late for us, will it be so far in the future that many of us will not be around to receive it.  It is a tough journey we are all on. 

This addled brain of mine. 

Many of us with ph know that our brains are not very sharp any more, that we mix and muddle things up.  Though we know what to say or what to write it just either doesn't come out or we do it all wrong.  I certainly suffer from this but the most recent one had me wondering if I was oxygen starved or just plain stupid!

I decided a few months ago that I wanted one of those mirrors that magnify so that it would make it easier to pluck my eyebrows.  The mirror sat in my bathroom and each time I tried to use it I was very disappointed, it just did not  appear to be any stronger than any of the mirrors around the house.  I wondered if I had been sold a dud from my local T K Max and kept meaning to take it back but just never got around to doing it  Just a few days ago I used my electric toothbrush and put it back on its charging stand before I remembered to turn it off.  The result was a mirror splattered with tiny droplets of water as my toothbrush merrily sprayed itself all around.  I wanted to try the said mirror again but now it was so badly splattered with the water from my toothbrush  so I flipped it over to the other side and HALLELUJAH the light bulb moment, we had a magnifying mirror.  I had absolutely no idea that the answer was so simple as a quick flip.  Now whilst this made me smile it also made me feel sad that the sharp  person I used to be has gone, disappeared in the mists of time, into the world of ph.  How I hate this illness for robbing me of so much, so many things taken for granted before now become a chore. I well know the frustration we with ph live with on a daily basis.   

Ginger biscuit day

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It is now early evening and I have to say it has been a busy day for me what with one thing and another.  I had a few jobs to do this morning and Colin was going down to the site of the new house along with a friend to clear some shrubs.  What we did not  want was a digger just coming in and destroying them.  We needed them to go in places we wanted to keep private whilst work was going on.   Busy time for both of them but I too kept myself doing things all day.  One pleasurable thing was to go an introduce myself to the 94 year old gentleman who lives in the bungalow next door to our land.  What a gem he was and as he showed me around his beautiful well kept home I asked him who cleaned it for him.  His answer was that he did it all himself.  I was truly shocked as it was spick and span.  He unlocked a door to show me the bedroom he has never slept in since the death of his beloved wife 11 years before. He said he just could never stand to sleep in that bed again and the memories they would bring if he did.   I am happy he will be our neighbour.  

 Anyway ginger biscuit day, so I shopped,  called at our land, called next door and then came home and unpacked shopping.  I put on a wash and then I went to collect Izzy from school to take her to the dentist.  This time the news was good, her new teeth seem to be coming through with enamel on them, what a blessing as it concerned me that as her baby teeth had none the second set would be the same.  Panic over.  

After the dentist it would not have made any sense to take her back to school as she would only have been back for ten minutes before I would have had to collect her again so we went off home to her house. She went onto our land and helped her grandad move some logs to the side of the plot {very small ones for her!} and she just loved it.   I made her a simple tea and then supervised her bath.  Home again and now having a well earned rest but yes, a ginger biscuit day for sure.  I bet I sleep tonight.  

I think that when we have a "good day", or ginger biscuit day some people will  think it is like their normal day.  This is so not true.  Though we may be able to perform certain tasks it is still with difficulties with breathing and leaden limbs, we have just learnt to accept this and consider this a good day.  I can assure you that were a "well" person wake feeling as we do on our ginger biscuit days you would consider that you were coming down with a bug or flue and barely attempt to do anything.   

I can't say that since denervation i have not had any bad times because i have, times when I feel  so exhausted and the slightest thing seems to be too much bother as I know I just would not be able to complete the task BUT still my breathing feels better, still my cough is not so bad and still I seem to achieve a little more than I did before.  Is it the placebo effect,  I do not know and as yet I have not received any news of the MRI I had done so who can say but for now I am content with the way I am doing.  

Whilst on our land I picked some daffodils and gave them to Izzy for her bedroom, a lovely touch of spring for her to see in the mornings when she wakes up.  

Our Admin Paul


Our admin in America Paul David Kushner does a great job being an admin for this group and he has just changed his profile picture.  As he himself has posted this on Facebook he will hardly object to my posting this gorgeous picture of his so adorable twins.  I take my hat off to both the proud parents, so beautiful are these two babies.  As he himself has ph I know they will give him something to work for, to strive to keep as well as he can and to hope for a cure in the near future.  How incredibly sweet.  I am sure you will all wish him a very happy future for himself and his wife as the family have now become 4!!!!  Go well Paul and enjoy.  

I am smelling delicious things coming from the kitchen as Colin is cooking our evening meal, he does all the cooking these days so I will take my leave of you all here and ask if he will post this for me after supper.

Warm love to you all and stay as healthy as you can.  Once again I make no apologies in asking that if you have read this missive of mine you click like or feel free to comment or share.   It really matters to me.

Carole xxx